tag:blogger.com,1999:blog-19089858355523327462024-03-13T08:49:26.607-05:00Down Home Ranch BlogJudy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.comBlogger251125tag:blogger.com,1999:blog-1908985835552332746.post-15796292131000284632014-09-08T10:10:00.001-05:002014-09-08T10:12:03.539-05:00A dream comes true<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVoq54fjApgj0xvGzC-6pmhy-l40yLOovKqsmqgAB__b-tCx2_ycGV25FIweoisa-WC_I0ymW2R59FaMPKpCNRH2VTpZQ20HeEIzOlFcQZj0CR-Es-l38bWnq7SbtzycIaeVPBbfoNHCAM/s1600/Good+Scene.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVoq54fjApgj0xvGzC-6pmhy-l40yLOovKqsmqgAB__b-tCx2_ycGV25FIweoisa-WC_I0ymW2R59FaMPKpCNRH2VTpZQ20HeEIzOlFcQZj0CR-Es-l38bWnq7SbtzycIaeVPBbfoNHCAM/s1600/Good+Scene.JPG" height="300" width="400" /></a></div>
A few weeks ago we held the Swim Fest, our annual end-of-summer fundraiser where our Ranchers form swim teams to compete for various trophies and raise money for their winter cruise and other quality of life issues.<br />
<br />
Swim Fest is low-key and most of our parents come out to cheer on the gang. I was sitting with one of the older moms when her son "Ken" came up. Ken's quite a kidder and after a few jokes and pulling of legs, he headed back to the water. Ken's mom turned to me and said "Thank you so much. He is so happy. And for the first time in my life, I don't have to hope and pray that he dies at least one day before me."<br />
<br />
I was shocked when Kelly was small and I would hear parents--many parents--of older sons and daughters with intellectual disabilities say that their main goal in life was to outlive their child. For one thing, since Kelly was born when I was 42 and Jerry was 46, we figured that would be wishing a very early death on our daughter.<br />
<br />
For another, we planned to make sure Kelly still would have a happy life even when we had passed on. We wished for her a long life filled with love and laughter and other people she cares about--her boyfriend Sterling, her sisters and extended family, her friends at the Ranch, who are many.<br />
<br />
But I have certainly come to understand the deep fear and concern of parents like Ken's mom, who spent decades with her son trying different programs, none of which allayed her fears that once she was gone he would be at the mercy of an uncaring, unresponsive system.<br />
<br />
Not that things are simple. We have had plenty of grandparents of our Ranchers die, and several parents and other family members, since we began the residential program. We have come to appreciate that death or serious illness of a loved one hits our Ranchers very hard indeed, and they struggle harder than we to arrive at the point of acceptance in their grieving, perhaps because they have more limited resources to process it and move on. <br />
<br />
At the <a href="http://www.ndsccenter.org/">National Down Syndrome Congress</a> Conference in July, some of our staff attended a workshop that discussed grieving in people with IDs. Drs. Dennis McGuire and Brian Chichoine also have some excellent suggestions in their book,<a href="http://www.woodbinehouse.com/main.asp?product_id=1-890627-65-8&.asp"> Mental Wellness and Adults with Down Syndrome</a>.<br />
<br />
We have taken to planting memorial trees in memory of grandparents, siblings, and parents who have died. The dedication of these trees seems to offer great comfort, and we often see Ranchers standing by their loved one's tree, stroking it. We ourselves planted an oak tree in memory of our grandson and Kelly's nephew and on Noah's birthday Jerry took Kelly to visit the tree and speculate on the nature of birthday parties in heaven.<br />
<br />
Well, we have a lot of land, and we have room for a lot more trees. In the meantime, we need to love, laugh, and live out loud, cherishing every moment that comes our way and giving thanks to God for our lives.<br />
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<br />Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-44153668513554890642014-07-16T09:19:00.000-05:002014-07-16T09:19:04.343-05:00Safe HavenJerry and I, plus several staff members and 16 Ranchers with Down syndrome just returned from Indianapolis where we attended the annual convention of the <a href="http://www.ndsccenter.org/">National Down Syndrome Congress</a>.<br />
<br />
Jerry and I went in a few days early in order to visit a sister village community in Ohio, about an hour away. It's called <a href="http://safehavenfarms.org/">Safe Haven Farms</a>, and is the brainchild of Dennis and Ann Rogers, who have a 34-year-old daughter with severe autism.<br />
<br />
Safe Haven Farms could easily double as a movie set, with its beautiful buildings nestled in the gentle green hills, gardens, ponds with ducks on parade, grazing llamas and miniature horses. <br />
<br />
As we drove in the front gate, a tall, very thin young man planted himself right in the middle of the narrow lane. He was accompanied by a staff member, who attempted in vain to convince him to move out of our way so we could drive in. We waved at her to indicate she shouldn't stress about the situation; we were in no big hurry.<br />
<br />
Several minutes later the young man moved of his own accord and the pair continued their journey to wherever they were going. All he needed was time to make up his own mind about the situation.<br />
<br />
Dennis and Ann met us and gave us the royal tour. We swapped stories as we went along and at one point, as we were headed to the residence cottages Ann said, "I'll just stop in and see how our girl is doing today. She's been having a hard time of it the last few days." I offered to accompany her and received an instantaneous and emphatic "No!" I got the message and continued on with Dennis and Jerry.<br />
<br />
Dennis showed us homes customized for adults on the severe arc of the autism spectrum--painted flowers and murals on the walls instead of mirrors or pictures, TVs completely encased in wooden cabinets that prevented their being picked up and thrown. No glass. Shades encased within double paned safety-glass windows and operated by a lever to adjust the amount of light coming in. Plus many similar accommodations. It sounds stark, but the homes look like what they are--homes.<br />
<br />
Needless to say, Safe Haven's staffing ration is quite a bit higher than ours, one-on-one to two and sometimes three-on-one. Ohio has a regulation that does not permit the landlord--individual or corporate--to provide the programming for people with intellectual disabilities, so all program and staffing is handled by Bittersweet Farms, another provider.<br />
<br />
When Ann and Dennis despaired over ever finding a living situation suitable for their daughter after she left high school, after several spectacular failures, they decided in the mid 2010's to take on the task themselves. They understood as few others the challenges involved in caring for a son or daughter on the severely-affected end of the spectrum.<br />
<br />
They were encouraged by government agencies, and why wouldn't they be? Here were two incredibly energetic, experienced people ready to devote their lives and their fortune marshalling resources to create a place where the most difficult to serve men and women, like their daughter, could live and grow. (And incidentally, in doing so, they would save the taxpayers of the US and of Ohio millions of dollars and provide the best care possible. two eminently worthy goals!)<br />
<br />
Well, that was then. The day before our visit the state head of the Department of Disabilities visited to gather information and provide feedback concerning the rules promulgated by the Centers for Medicaid and Medicare Services of the federal government. <br />
<br />
These are the rules that say: No segregated environment. No one-disability communities. No rural villages. No names like "Safe Haven." (Heaven forfend! Do they prefer "Hell's Kitchen?")<br />
<br />
And for that matter, no in-ground swimming pool, a much-desired item for the Farm. <br />
<br />
Why not? The Farmers love to be in the water. Several are good swimmers, but even those that don't swim love the feel of the water on their skin. (My theory is that it's because the water helps them know where they leave off and the rest of the world begins.)<br />
<br />
But...having your own swimming pool is "institutional," and you should really be taking the Farmers to the nearest community pool to swim.<br />
<br />
Now the following are purely my own observations, and I ask, in what universe are these people living? Do they have any understanding at all of the challenges involved in providing optimal care for adults on this part of the spectrum? I cannot believe that they do. <br />
<br />
I met a very well known advocate for people on the spectrum, who is herself on the spectrum. She is rightly famous, and lauded for her many accomplishments. At the time I was accompanied by one of our Ranchers, a man on the spectrum who struggles tremendously with anxiety, Tourette's, and OCD. He knew of her work and wanted to meet her.<br />
<br />
This man picked out Down Home Ranch as his home many years ago, long before we had an opening for him. (In fact, when he learned he could not come right away after doing his residency trial, he filled a jug with water and ran away, determined to live here at the Ranch even if he had to do it in the woods!). <br />
<br />
This women dressed me down then and there, saying that he should be living on his own, he was obviously smart and capable, and he had no reason to be living sequestered out in the country somewhere on a "segregated" ranch. <br />
<br />
But what about the fact that he loves the Ranch? He can go fishing whenever he wants. He grows his own garden and takes care of it by himself. He loves nature and feels comforted being in the outdoors. Does <em>he</em> get a choice in this matter?<br />
<br />
Village communities all over the country are organizing to address this rule. We are not saying everyone should live in a village community. <br />
<br />
But why are the advocates so determined that <em>nobody</em> should?<br />
<br />
<br />
<br />
<br />Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-50656801820878179042014-07-15T08:45:00.000-05:002014-07-16T09:23:55.453-05:00In the beginning...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkAiQ1Ih2cSr8Nde1Bf287k9VKx9WWL0kUCj_C2np3UZhWPJyBq5mJunpoqVKcr5EzWKWYNHSPIMwQHJ0nl4K3J5oXdnR04W4cV5On19qNG6U97OPJlLkvVMXJkeVbPO0UuBhgAsvFXG7A/s1600/Dr_Jrme_Lejeune_Credit_Fondation_Jrme_Lejeune_via_Wikimedia_CC_BY_SA_30_CNA_3_20_14.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkAiQ1Ih2cSr8Nde1Bf287k9VKx9WWL0kUCj_C2np3UZhWPJyBq5mJunpoqVKcr5EzWKWYNHSPIMwQHJ0nl4K3J5oXdnR04W4cV5On19qNG6U97OPJlLkvVMXJkeVbPO0UuBhgAsvFXG7A/s1600/Dr_Jrme_Lejeune_Credit_Fondation_Jrme_Lejeune_via_Wikimedia_CC_BY_SA_30_CNA_3_20_14.jpg" height="255" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Dr. Jerome Lejuene, discoverer of cause of Down syndrome</em></td></tr>
</tbody></table>
I discovered I was pregnant with my fourth child very early in February of 1984. I was 42 and certainly not expecting to be expecting, but Jerry and I rolled with the punches and were soon changing our life course and making new plans.<br />
<br />
Those plans didn't include the possibility of abortion. The reasons for that are complex, because we were not members of any organized pro-life movement or organization. It's more that we just loved new life, whether it came in the form of a seedling peeping up out of the ground, a litter of puppies, or...a baby.<br />
<br />
So I rejected the amnio that would have told me our little one was busy developing an overabundance of chromosomes. Midway through the pregnancy, I even had a mystical experience that I felt told me the baby would be a girl with Down syndrome. But no matter. Life is life. I figured if the universe bothered to tell me about it, it would tell me what to do about it.<br />
<br />
In September of 1984, here came Miss Kelly Page Horton, 8 pounds, 7 ounces, bald and beautiful. It was obvious from the moment she popped into the world.<br />
<br />
Frankly, we were less than thrilled. We were just getting back on our feet a few days later when we got news that she might have neo-natal leukemia. At that point the mom and pop tiger genes in us rose up and roared and we knew we wanted this baby in no uncertain terms. <br />
<br />
When Kelly was five weeks old, the <a href="http://www.ndsccenter.org/">National Down Syndrome Congress</a> convention came to San Antonio. Daughter Martha and I drove down to see what we could learn. <br />
<br />
Talk about a revelation! A doctor from the<a href="http://www.cityofhope.org/"> City of Hope</a> in Duarte, CA, informed me that Kelly didn't have leukemia, but a "<a href="http://en.wikipedia.org/wiki/Leukemoid_reaction">leukemoid reaction</a>," fairly common at birth in Down syndrome. He also said it would go away without treatment and she would bear no uncommon risk in the future. Whew.<br />
<br />
But we had also just received Kelly's karyotype, which showed, most curiously, <em>four</em> No. 21 chromosomes. This was, needless to say, worrisome to us (and unheard of by our physicians). If one extra chromosome could gum up the works, what would two do?<br />
<br />
Fortunately, the very man who discovered the cause of Down syndrome was present at the conference. <br />
<br />
Jerome Lejuene was a French researcher, who in 1958 identified that an extra 21st chromosome causes the syndrome named after the man who first described it, John Langdon Down.<br />
<br />
When I read that Lejuene was presenting a plenary session, I imagined he must now be very old, and I was surprised by the youthfulness and vigor of the man who stepped in front of the microphone. In fact, at that point he was 57 years old; he had made his discovery at 34.<br />
<br />
Unfortunately, the combination of his strong French accent, my own rather poor hearing, and the acoustics of the hall ensured that I caught very little of his message. Still, I figured he would be interested in Kelly's karyotype, and I was interested in his take on it, so I stood in line to speak with him.<br />
<br />
When my turn came he smiled and welcomed the paper I handed him. He knew immediately of my concern, even before I said anything. I will never forget his warmth and compassion as he explained that he felt certain she would develop typically as a child with Down syndrome. I could feel that I was in the presence of someone very special.<br />
<br />
First of all, he had come all that way to be with us, a random clutch of moms and dads with one thing in common. It amazed me that he would do that. I doubted that most scientists who had made a discovery of such monumental importance would bother much with the real-life consequences.<br />
<br />
But as it turns out, Jerome Lejuene was far from typical in that respect. In a sense, he spiritually adopted each and every child born with Down syndrome, and he cared deeply about their lives. As pre-natal tests were developed to identify, and in most cases, eliminate the growing baby with Down syndrome. he began to speak out for their right to live.<br />
<br />
The scientific community did not share his view, and over time he was in effect shunned, viewed as unprofessional, no doubt.<br />
<br />
Yes, I was indeed in the presence of someone very special. Today the <a href="http://www.fondationlejeune.org/en/">Jerome Lejuene Foundation</a>, established in his name, works on behalf of people with Down syndrome, funding medial research to work for "care and a cure." <br />
<br />
There is also a movement working to recognize the<a href="http://www.catholicnewsagency.com/news/down-syndrome-researchers-sainthood-cause-a-witness-to-life/"> sainthood</a> of Jerome Lejuene. That he was one, there is no doubt. I didn't identify it at the time, but it's what I felt in his presence: exceptional holiness.<br />
<br />
He wrote<em>: Human genetics can be summarized in this basic creed: In the beginning is the message, and the message is in life, and the message is life. And if the message is a human message, then the life is a human life.</em><br />
<br />
Amen.<br />
<br />
<em>Picture credit: Fondation Jerome Lejeune via Wikimedia (CC BY-SA 3.0).</em><br />
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<br />Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-54671300982331273132014-04-18T12:12:00.002-05:002014-04-18T12:14:27.537-05:00Scandinavian scandalsThe Minister of Health of Denmark has boasted recently that by 2030 <a href="http://www.nationalrighttolifenews.org/news/2013/12/deselecting-our-children-2/#.U1FZPGAo6Uk">the government</a> will have achieved its goal of <strong>no</strong> babies being born with Down syndrome. This will be achieved not by research designed to override the effects of an extra 21st chromosome. That would be a noble goal.<br />
<br />
No, alas, it will be achieved with the blunt instruments of early detection and subsequent abortion. (I have no idea what the Minister will do when he encounters, as he is sure to do at some point, parents who want their baby regardless of the Down syndrome.) <br />
<br />
And Sweden's health system was profiled today in the <a href="http://online.wsj.com/news/articles/SB10001424052702303603904579491971221879580">Wall Street Journal</a> as a cautionary tale for Obamacare. If a Swedish resident is diagnosed with an aggressive tumor today, he or she may have to wait nine months before beginning chemo and radiation to treat it. This insurance costs Swede an average of $20,000 per family per year, yet many are willing to fork over another $12,000 per year to purchase private health insurance in order to feel reasonably certain of receiving the care they need.<br />
<br />
It's the tendency of governments when they take something over to promise everyone everything. But they can't deliver that, or even come close, and so they do something we in the disability field are well acquainted with: they ration services via wait time.<br />
<br />
That's why tens of thousands of Texans with intellectual disabilities have been languishing on the <a href="http://www.dads.state.tx.us/services/faqs-fact/hcs.html">Home & Community-Based Services</a> lists for a decade or even longer. (At one point one of our residents received a letter informing him he could expect services no later than age 56. He was 24 at the time!)<br />
<br />
According to <a href="http://www.madisonhouseautism.org/voices-uniting-coalition-for-community-choice/">The Coalition for Community Choice</a>, 4,902,835 people with intellectual disabilities (IDs) currently reside in the United States. Of those, 1,389,611, or 29%, currently live in an out-of-home residential setting. That might be a three-person HSC home, an Intermediate Care Facility home of four, six, eight, 16, or 32 residents, in a foster-care situation, in a private boarding facility, or in a regular nursing home.<br />
<br />
Nearly a million (852,923) of the remaining 3,513,224 still living at home with a relative or other caregiver<u> are already 60 years of age or older</u>. If they are living with parents, those parents have already exceeded the actuarial estimates for their life spans. These people face a very uncertain future. (Over the years we have met families like this and, incredibly, most of them have no plans at all for their disabled adult child in place to assure their care when the parents die.)<br />
<br />
Those million senior citizens with IDs represent only the most urgent aspect of this crisis. After them come 2,242,484 younger people with IDs needing a place to live now or in the foreseeable future.<br />
<br />
And how many new residential slots, from all the different programs, were created and funded from 1994 through 2011?<br />
<br />
Fewer than one quarter of a million--244,195 to be exact. <br />
<br />
What are the prospects today for doing better than that hopelessly inadequate response? The economy is weaker than during the 15 years referenced above. If available monies were divvied up among all who needed them, it would amount to a pittance for each.<br />
<br />
But there is hope, and there are solutions. Just as Jerry and I looked around 30 years ago and said, "Nope, not for our kid," families all across the country are coming together to seek solutions. <a href="http://www.fredconference.myevent.com/">FRED</a> (Farms and Ranches Enabling people with Disabilities) has a saying: "For a family with a child with autism, tomorrow is already yesterday."<br />
<br />
So moms and dads and sisters and brothers are making plans for their children. They know their children and what kind of life will be rewarding and helpful for them. Families particularly of children with autism are convinced that farm and ranch style settings offer the greatest hope for a good life for their child.<br />
<br />
And how does our government respond to this initiative? By passing rules that ensure that tax dollars intended for care of their children will never be disbursed to such a "facility," because the government is certain that living on a farm or ranch with other people with disabilities is <em>prima facie</em> bad and wrong.<br />
<br />
This is why the Coalition for Community Choice will bring together all the ID communities--autism spectrum, Down syndrome, and others-- (and hopefully their advocacy groups, such as <a href="http://www.autismspeaks.org/">Autism Speaks</a>, the <a href="http://ndsccenter.org/">National Down Syndrome Congress</a>, and the <a href="http://www.ndss.org/">National Down Syndrome Society</a>) to press to change the Center for Medicare and Medicaid Service's rules that would bar clients of private, rural, or enclave communities from receiving services and support.<br />
<br />
Truly, a good start would be for people to get out of their offices to go and visit place like Down Home Ranch and hundreds of other communities around the community and world.<br />
<br />
Our doors are open, and you don't need an appointment. Tomorrow I'll tell you what you'll see.<br />
<br />
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<br />Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-77368756961753720442014-04-10T13:45:00.000-05:002014-04-10T13:45:14.403-05:00What is CMS up to?A few weeks ago Jerry and I, along with Kelly and Sterling, attended a <a href="http://cflu.org/event/farms-and-ranches-enabling-people-with-disabilities-fred-2013-conference/">FRED</a> Conference in Los Angeles. We were all to serve as speakers or panelists.<br />
<br />
FRED arose out of a group of parents of children with autism. Knowing that many people with autism thrive in a rural environment, they seek to create living situations for sons and daughters. <a href="http://www.goldenheartranch.org/">Golden Heart Ranch</a> is one such endeavor, begun by Rose van Wier Hein, a driving force behind FRED. <a href="http://www.sweetwaterspectrum.org/">Sweetwater Spectrum</a> is another.<br />
<br />
We were invited three years ago to attend because we had actually built a model in Down Home Ranch. At that time we were pretty raw from our tussle with the state, and we cautioned our new friends appropriately. This year FRED was rife with concern over the arbitrary rules both extant and in the process of adoption, that CMS imposes.<br />
<br />
Paraphrasing from <span id="goog_618369178"></span><a href="http://www.gpo.gov/fdsys/pkg/FR-2011-04-15/pdf/2011-9116.pdf">The Federal Register Volume 76, Number 73, April 15, 2011<span id="goog_618369179"></span></a>:<br />
<br />
"...we sought public input [from citizen stakeholders] on strategies to define home and community-based settings where waiver participants may receive services. ...in response to isolated situations that have emerged where States or other stakeholders are expressing interest in using HCBS [HCS in Texas] to serve individuals in segregated settings or settings with a strong institutional nature. For example, some proposed settings are on campuses of institutional facilities, segregated from the larger community, and do not allow individuals to choose whether or with whom they share a room, limit individuals' freedom of choice on daily living experiences such as meals, visitors, activities, and limit individuals' opportunities to pursue community activities."<br />
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In other words,<em> private citizens are trying to recreate the State Schools of old!</em><br />
<br />
Will Golden Heart Ranch or do Down Home Ranch and Sweetwater Spectrum fit this model? Of course not.<br />
<br />
Are we segregated from "the larger community?" Would that be Elgin, Texas? Does Elgin qualify with only 9,000 inhabitants or must we attach to Austin, with 2 million? We have one another. We have neighbors. We have scads of volunteers to befriend our Ranchers, take them to church, invite them to spend holidays. Are we chopped liver?<br />
<br />
Our Ranchers eat breakfast and dinner at home and lunch in the dining room. Their houses eat out a few times a month. They certainly have input into the menus, but admittedly, we work hard not to offer junk food that many would prefer.<br />
<br />
Anybody who has not been banned by court order may visit a Rancher at any time day or night without notice (although they risk missing the Rancher, who might be at Special Olympics, off to a festival, or in a class at UT, or working at HEB, or off shopping at Wal-Mart.<br />
<br />
Activities? See above.<br />
<br />
The rules continue:<br />
<br />
The setting "...must not be located in a building on the grounds of, or immediately adjacent to, a public institution, or must not be a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary [of Health and Human Services Administration]. ... must not have qualities of an institution, as determined by the Secretary. ...[which] may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual's [sic] ability to engage freely in the community."<br />
<br />
But getting back to current reality, which is that Down Home Ranch, <u>which is defined as an institution,</u> yet functions very happily as such under ICF. We even serve as a model for training new surveyors so they can see things done right<br />
<br />
If we're happy, what's the problem?<br />
<br />
Well, for one thing we have spent years engaged with other parents who are at wit's end with what they see in government-funded facilities, which is exactly what we saw: loneliness, isolation, lack of freedom and choice. <br />
<br />
For another, ICF itself is needlessly constricting of our Ranchers' freedoms. For example, we had to cut our annual cruise from five to four days (yes, you read right; we take an annual cruise and boy hydee do we have fun!) because our Ranchers are only allotted a certain number of days for vacation leave per year and we don't wish to cut into their parents' plans for such.<br />
<br />
Plus, many of our Ranchers could live on their own. Two were when we had HCS, but the state made us move them into a group home on the Ranch when we came under ICF. Many could stay safely at home when they don't wish to go to a movie with the house, but they are not allowed to under ICF so they must hang out at another house until their mates return.<br />
<br />
Nobody knows what will happen to ICF. My guess is that providers will be told at some point that they cannot fill vacancies when they occur, and the scenario will quickly become too expensive to continue. We are working hard toward self-support, so that when the cost/benefits ratio becomes too skewed against us, we can simply cut the ties and walk away.<br />
<br />
That may sound impossible, but we don't think it is. We are the only ones here who know--really know--how utterly unlikely it was that we should come to exist in the first place. We believe in miracles, because we've seen them.<br />
<br />
At FRED I spoke with many who have testified on behalf of congregate care communities like Down Home Ranch, but saw no reference in my research to an concerns they raised. It seems CMS will listen to those whose opinions support their stance and chuck the rest. <br />
<br />
So that is where we are. During our trials with the state, so-called "advocates" for people with IDs called Down Home Ranch a "fake community" among other things. My guess is that they are good people who genuinely want what is best for my daughter and her friends. My dream is that they would spend some time here. Perhaps, like our surveyor, they would be bowled over.<br />
<br />
One can only hope.Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-28701726348348583712014-04-10T11:48:00.002-05:002014-04-10T12:00:04.187-05:00The plot thickensSo. As I sat in my office pondering what "three new rules" might mean and why we had not heard anything about them as stakeholders, there was a tap on my door.<br />
<br />
It was my friend the surveyor.<br />
<br />
"Mrs. Horton, I just wanted to make sure you understood the implications of what I told you."<br />
<br />
I assured the surveyor I did. We said our goodbyes, and I called Carol Smith, head of the<a href="http://www.ppat100.com/"> Private Providers Association of Texas</a> and asked her if she'd received any communications on this matter from DADs. She had not. We both started looking through our emails.<br />
<br />
We didn't find anything so Carol said she would make some calls and get back to me.<br />
<br />
We had success. The proposed rules could have been drafted specifically to target Down Home Ranch. They specified that individuals intellectual disabilities (IDs) who had HCS funding could not 1) live next door to another person with IDs; 2) could not live next door to staff who provided them with care or educational and other services; 3) must live in what was considered a "typical" community.<br />
<br />
That pretty much left us out of the running. We'd built the Ranch to be a real community in and of itself, though certainly not one that excluded or shut out in any way the world at large. We constructed our Village to echo the old-time neighborhoods of years gone by, with staff, families, Ranchers, ourselves, and other intrepid souls who shared our vision. If something went amiss, our Ranchers would have easy access to many people who knew them very well, and more important--cared about their welfare deeply.<br />
<br />
And that's pretty much how things worked out. The distinctions between us Typical People (TPs) (aka "individuals without intellectual disabilities") and our Ranchers have blurred over time. Naomi loves to kill dangerous snakes, Tom and his guys love to play sports in the street in front of their house, Andrew likes to garden, Valerie likes to sit on the porch and watch the world pass by, I like to mosey around with my dog Jenny, and Michael and Brian like to drive down to the pecan bottoms and look for wild pigs and hootie owls. <br />
<br />
The Three Rules were formulated to prevent people from winding up in highly regulated environments such as the state institutions that horrified the nation a generation before--places where the residents were inmates and their personhood obliterated, where they wore uniforms with numbers instead of their names and lived in dorms with no personal space.<br />
<br />
Down Home Ranch is nothing like that and never was. <br />
<br />
We decided to have a meeting with our parents to address this issue, that threatened to cut their family members off from having HCS funding if they stayed at the Ranch. The parents were outraged. Their kids had begged to live here. They were happy and well cared for, and had lives in which they enjoyed an abundance of choices. <br />
<br />
The parents began to call their state representatives to ask for help. They signed up to testify at some of the few remaining stakeholder meetings. They were eloquent and sensible. Pressure on DADS began to mount.<br />
<br />
The Rules came about because advocacy organizations and the educational establishment had pushed their agendas long and hard. In the minds of many in these organizations every soul with Down syndrome, or autism, or whatever else qualifies as a disability can only be happy living alone in an urban setting, whizzing about town on public transportation, and livin' the vida loca.<br />
<br />
Hey, I knew that guy! But he was the only one I have met to date. And while I don't doubt others exist, the fact is we're talking about a huge range of functioning among people with IDs, not to mention a huge range of interests, tastes, and preferences.<br />
<br />
What about those who want to live in a neighborhood, with easy access to friends and colleagues? Who love working with animals and plants? Who might want to join a monastery of monks or nuns?<br />
<br />
Not a typical neighborhood, says DADS. What about the King Ranch and the other iconic Texas ranches? Our pattern of life is pretty much just like theirs. What about farmers and farm life?<br />
<br />
What about personal choice. Really?<br />
<br />
All to no avail. We faced losing funding for half our residents. They would have to leave the place they themselves had chosen.<br />
<br />
Then came a phone call. From the Commissioner of DADS. She asked that we meet the next day with her counsel, and with ours.<br />
<br />
Next day, we took our seats in the large conference room of the DADS building. We were three, plus the Commissioner and about a dozen others. Proceedings were polite, if guarded, and the end result was the offer of 20 ICF beds and the suspension of HCS services at Down Home Ranch.<br />
<br />
We asked for, and received, the unprecedented concession that if and when our residents currently holding HCS left the Ranch, their HCS would be immediately reinstated upon their departure. We accepted the deal, conflicted and grateful at the same time.<br />
<br />
We felt even more conflicted when our attorney murmured darkly, "ICF. I don't think you guys can manage ICF. It's the same as opening a nursing home."<br />
<br />
But we knew we would, and eventually we did. Thanks to DADS' action we were able to expand our residential program quickly, and our families had the assurance that their family member would be well cared-for without sending Mom and Dad into penury. It was a huge concession from the state, and through it we learned that the heartless bureaucracy had a heart after all.<br />
<br />
In fact, down the line we were granted four more beds for our ICF program to enable us to restructure into an economically more feasible configuration.<br />
<br />
So....what's the problem?<br />
<br />
The economic bust of recent years has forced governments large and small to look at new ways of doing things. When the money spigot was flowing unimpeded, it was easy to envision rich models like HCS and ICF. Ironically, for all its heralded benefits, HCS was designed from the outset to be at least 20% less expensive per client than ICF, yet with a wider range of choices. (Residency on a ranch, alas, not among them.)<br />
<br />
The number of people in these programs nationwide is only a fraction of the number awaiting services of any kind, and people with intellectual disabilities are aging at the same rate as he rest of us. Huge numbers of adult children with IDs remain at home being cared for by their elderly, increasingly frail parents. Agencies have struggled to meet the needs of the population but the funding simply has not been there for them to do so and is not getting any better.<br />
<br />
HCS was an attempt to loosen up the rigid framework of ICF (more about that later) and provide families with more choice for less money. Concessions on the family's part lay primarily in retaining a bit more risk and responsibility than under ICF.<br />
<br />
The Centers for Medicare and Medicaid Services, CMS, is the federal agency responsible for oversight of state agencies such as DADS, and it was a ruling from CMS that DADS was responding to when it came up with its interpretations that would make it impossible for Down Home Ranch to continue with HCS at the ranch site. (The Ranch retained its provider status and later opened two HCS homes in small towns close to the Ranch.)<br />
<br />
So. Families with adult children with IDs, faced with dwindling public resources, like Jerry and I 25 years ago (for we saw the handwriting on the wall even back then), are taking matters into their own hands.<br />
<br />
Living day by day with their children with Down syndrome, autism, and other disabilities, these families understand all too well the challenges of providing adequate lifetime care for them. They are also running up against the realities of their children's lives as opposed to the pipedreams of the professionals and academics.<br />
<br />
(to be continued) <br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-14521108588962668742014-04-08T05:53:00.002-05:002014-04-08T05:53:35.565-05:00It's your choice! (Or is it?)"Hey, Buddy! I'll take you to get some ice cream. We'll go anywhere you want as long as it's Baskin-Robbins, and you can have any kind of ice cream you want as long as it's vanilla!<br />
<br />
<em>"It's</em> <em>absolutely <u>your</u> choice!"</em><br />
<em></em><br />
This is the message of your federal government, as articulated by Mark Olson, head of LTO Ventures and the single father of an 18-year old daughter with severe autism. <br />
<br />
Some choice, no? <br />
<br />
I'm getting <em>deja vu </em>all over again. Here at the Ranch we've been through this before, you see. Here's our story.<br />
<br />
In 2007 Down Home Ranch was up and running on a modest scale. We had three homes open at the Ranch, each with three residents apiece, all having decided after attending <em>Ranch Camp</em> that this is where they wanted to live.<br />
<br />
There we were, we band of brothers and sisters, we happy few. Then the apple appeared in Eden, and of it we did eat.<br />
<br />
It appeared in the form of what is known as an HCS waiver, funding "provided" by the federal government for "services" for "consumers" with what we now refer to as intellectual disabilities. A new resident had this funding, which the family had waited for for a decade or so, and they didn't want to lose it.<br />
<br />
In order not to lose it, they had to use it. To figure out how to use it we convened a meeting of the young man's case manager and program director, employees of the agency administering the waiver.<br />
<br />
In our two-hour conversation I half expected the March Hare to wander in at any moment. Following is my mental reconstruction, what today we call the "take-away."<br />
<br />
Program Director: The HCS was designed to offer maximum choice to the consumer. that's why families want it and it's so valuable.<br />
<br />
Down Home Ranch: That's fabulous. Choice over what?<br />
<br />
Program Director: Housing, jobs, friends...every aspect of life!<br />
<br />
Down Home Ranch: Great! So how does "Sam" use his HCS?<br />
<br />
Program Director: He will have a paid companion come and pick him up and take him on community outings.<br />
<br />
Sam: Can Adam [best friend and housemate] go with me?<br />
<br />
Program Director: No.<br />
<br />
DHR: Why not?<br />
<br />
PD: Only a non-disabled friend can accompany Sam on a community outing. You see, the whole point is to eliminate segregation of people with disabilities.<br />
<br />
DHR: But he wants his best friend to go.<br />
<br />
PD: I'm sorry. That's not possible.<br />
<br />
Sam: I don't want to go.<br />
<br />
But, Sam had to go anyway, in order not to lose his services, which he didn't want to use. (Perhaps they went to Baskin-Robbins...)<br />
<br />
If the tale had ended there, it might have been better for all concerned. But, it didn't. We tasted of the Kool-Aid and it was sweet. We became more involved with HCS for a very important reason.<br />
<br />
Back up time. We'd always envisioned the Ranch as a place for those who wanted to live there, regardless of ability to pay. That lasted about six months into the residential program when we realized just how expensive direct care is. The Board imposed a fee to parents on a sliding scale. It helped. <br />
<br />
We were aware, however, of the financial strain it imposed on our families, as moms who had been retired for several years elected to return to employment. The long-term picture looked a little wobbly, financially speaking.<br />
<br />
Other Ranchers' names began to come up on the HCS waiting list. It was determined that if we became official providers they could receive funds for supervised living and other services, so Jerry and I attended meetings offered by the Department of Aging and Disability Services (affectionately, or not, known as "DADS"). <br />
<br />
The day Katrina hit New Orleans Jerry and I went for the final sign-up and exam, administered to make sure we knew what we were doing. He had decided that since I would administer the program I should take the exam. Somehow I managed to pass it and we were in business.<br />
<br />
One after another of our Ranchers got their waivers and soon over half were supported by the program. All seemed well for two years. <br />
<br />
Then one day during a routine inspection by DADS of our houses and programs, I escorted one of the surveyors through our new, spotless Barnabas House, where each Rancher had his own large private bedroom. The surveyor had been there for two days, and as we exited the house turned to me and said, "You know, I've heard about this place and I was very dubious about it, but now I get what you're doing. I really get it, and it's beautiful."<br />
<br />
Later that evening, after finalizing the exit interview with our case manager, the surveyor stopped by and said: "Mrs. Horton, I just wanted to let you know about three rules about to be implemented that might affect your ability to offer HCS services here at the Ranch."<br />
<br />
And so began an adventure.<br />
<br />
(To be continued)Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-90052108534611780432014-04-06T19:36:00.001-05:002014-04-06T19:36:42.775-05:00
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Last night was the Gala, the second act of Down Home Ranch’s
big annual fundraising weekend.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Friday was brisk, clear, and breezy, but not too much so for
a great day on the golf course.<span style="mso-spacerun: yes;"> </span>About
130 golfers played, or played at, 18 holes on the beautiful Avery Ranch course.<span style="mso-spacerun: yes;"> </span>All went off without a hitch, according to
those who should know.<o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Saturday dawned cloudy and chilly, and we had all day to get
ready for the Gala, held at the Bob Bullock Texas History Museum.<span style="mso-spacerun: yes;"> The </span>Lt. Governor’s widow, Jan, graciously served
as our honorary chair of the event, although she was unable to attend in
person.<span style="mso-spacerun: yes;"> </span>Still, it was very special
looking around the beautiful interior, all decked out for our gala, and knowing
we had her blessing for this event.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">The gala followed weeks of meetings and reviews of the “run
of show.”<span style="mso-spacerun: yes;"> </span>Kristin and Andrea were ready
at the payment table, and Kristin’s twin sister Krystal, their mom, and Casey
held down the reception desk.<o:p></o:p></span></div>
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Seventy or so items were laid out for inspection with their
bid sheets in the silent auction area, and the catering lines were ready to
go.<span style="mso-spacerun: yes;"> </span>Jerry fretted about my speech (but
not his).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">We conferred with <a href="http://bostbenefitauctions.com/">Andrew</a>, the auctioneer/MC, on last
minute details before getting ready to launch the serious part of the evening:
matching a $100,000 challenge grant from the <a href="http://www.nonprofitfacts.com/TX/Still-Water-Foundation-Inc.html">Still Water Foundation</a> of Austin.<o:p></o:p></span></div>
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Then a most delightful cog slipped in our well-oiled
machine...<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-spacerun: yes;"></span><o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">A dear friend of the Ranch surreptitiously handed us a
letter outlining a complex offer to match dollar for dollar the first pledge of
$10,000 made that night, and also the first pledge of $5,000.<span style="mso-spacerun: yes;"> </span>After that he would pledge $2,500 for each
pledge of either up to a personal investment of $50,000.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">He wished to remain anonymous.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">When it was time for the “Paddles Up” portion of the
evening, Andrew played the <a href="http://www.chrishatcherpictures.com/">video</a> prepared for the evening—a lovely short piece
consisting of clips of our Ranchers at their work.<span style="mso-spacerun: yes;"> </span>Then I stood to prep the audience for the
evening’s ask.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">I led off with an overview of the importance of our work
program to our Ranchers.<span style="mso-spacerun: yes;"> </span>Fees for
service paid by Medicaid funds cover housing, food, and staffing, but although
there is expectation imposed for some sort of day program for the “consumers” receiving
services from the state, there is no money to support such a program.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">That’s why so many adults with intellectual disabilities sit
around coloring or sitting on the couch watching TV.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">But we’d figured from the outset that a Ranch setting was
one with a skill level for everyone, and there was no reason at all that our
Ranchers would be unable to contribute substantially to the work of the Ranch—from
birthing calves to working in the kitchen.<span style="mso-spacerun: yes;">
</span>That’s what we’ve always worked toward, even though frankly it would be
cheaper to hire people who already know how to do these things rather than
train our Ranchers to.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">And now the grant from the Still Water Foundation would
enable us to take a gigantic leap into the future, if all went well.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">So I spoke a little about the importance of work for
everyone, how it puts our Ranchers on an even footing with the rest of the
world to have a job, be good at it, and earn a paycheck in the process.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">I had Mike Larcher stand up, and told about his pride in
scooping horse poop, even to the point of proudly proclaiming one morning to
me, “Look, Judy, they made more!”<span style="mso-spacerun: yes;"> </span>The
little story got a laugh, as I knew it would, and Mike stood and beamed.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Then I mentioned our chickens, and how they were supplying
the whole Ranch with eggs to consume, and eggs to sell.<span style="mso-spacerun: yes;"> </span>“They’re laying 90 eggs a day now,” I said
proudly.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Then way back in the crowd, a familiar figure stands
up.<span style="mso-spacerun: yes;"> </span>It’s King, aka the “egg man,” who
cares for the chickens, even driving down nightly after supper in his golf cart
to lock them up safely for the night.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">“They’re not laying 90 eggs a day, Judy,” he admonished
sternly.<span style="mso-spacerun: yes;"> </span>“They’re laying 100 eggs a day!”<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">The crowd laughed and applauded.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Then it was time for Paddles Up.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">We knew there would be a $10,000 pledge, because we were
prepared to make one.<span style="mso-spacerun: yes;"> </span>We recently sold
our condo in Austin and figured it could serve as part of our tithe, so Kelly
was all set with our bid paddle to pop up when Andrew called for a $10,000
pledge.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Oops, a man at the next table, a fellow parent of a child at
DHR, surprised us!<span style="mso-spacerun: yes;"> </span>His was the $10,000
matched by our generous benefactor.<span style="mso-spacerun: yes;"> </span>Ours
was the next and last.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Then at the next table, a dear friend pledged $5,000.<span style="mso-spacerun: yes;"> </span>Swiftly following that, pledges were taken
for progressively smaller amounts (but which, of course, mounted up in higher
numbers).</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Our good friend who’d pledged the $5,000, possessed of a
puckish sense of humor, began “matching” the pledges coming in with a
quarter.<span style="mso-spacerun: yes;"> </span>It got a laugh each time.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">But then something magical happened.<span style="mso-spacerun: yes;"> </span>The Ranchers in the audience, seeing that
Andrew was accepting 25 cent pledges, realized that they, too, must be in the
running, and began bringing their quarters and dollars (and even a silver
dollar coin!) to Andrew.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">This was nothing we could have, or ever would have, planned.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Our puckish friend was engaged in a little mischief.<span style="mso-spacerun: yes;"> </span>But our Ranchers were acting in dead earnest
to meet our goal.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">I leaned to a table mate and whispered, “We’re seeing the
widow’s mite in action.”<span style="mso-spacerun: yes;"> </span>With tears in
my eyes, I admit.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">By the end of this glorious evening, we, and friends
assembled, had met the $100,000 match dollar for dollar, with funds left over,
thanks to our Ranchers.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">After that, it was party time, as we danced everything from
the conga line to the hokey pokey to the great music of the Aristocrats.<span style="mso-spacerun: yes;"> </span>Usually it’s our Ranchers who dominate the
dance floor, but last night twice as many guests as usual joined in the fun.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">I heaved a sigh of relief and made some lame jokes about
attending someone else’s gala so I could have fun and relax, eat, and buy
things at the silent auction—none of which I’d done at ours.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">But that’s ok.<span style="mso-spacerun: yes;"> </span>I
witnessed the hearts and souls of our Ranchers in action, and saw clearly that
they understand what we’re all trying to do together, they get it, and they
want it.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">And no event could deliver more than that.</span><span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p> </o:p></span></div>
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-69214311794571735912014-03-14T09:21:00.000-05:002014-03-14T09:30:04.314-05:00<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7RFaOQfZYiQqkja7VoxQsqKl0fh5nNZLN0MgSX24f2pG84gw7hgZtTsRghVV4J6jydA8Ko5xe314NqGZq3MOXHnXvdwRckV3LWP7unBsvQayKCrvuipeS6peW7tzDrifki6kTgYik3R02/s1600/Rettbergs.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7RFaOQfZYiQqkja7VoxQsqKl0fh5nNZLN0MgSX24f2pG84gw7hgZtTsRghVV4J6jydA8Ko5xe314NqGZq3MOXHnXvdwRckV3LWP7unBsvQayKCrvuipeS6peW7tzDrifki6kTgYik3R02/s1600/Rettbergs.jpg" height="269" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Col. Don Rettberg, Jo, and Don, Jr.</td></tr>
</tbody></table>
Last night we attended the <a href="http://www.nwaustinkiwanis.org/">Northwest Kiwanis'</a> farewell dinner to a family that made a huge difference in the lives of so many families, including ours, in the days and years following the birth of their son or daughter with <a href="http://www.ndsccenter.org/">Down syndrome</a>.<br />
<br />
Jo and Don Rettberg, with their son Don, Jr., are moving to Ohio to be close to their daughter Sandy and other family. They have been a fixture in our lives for 30 years now, ever since Jo visited Jerry and me at St. David's hospital the day after Kelly was born.<br />
<br />
Jerry and I had entered some form of suspended animation following the diagnosis the night before. We hadn't had the horrible experience from our doctors (you know, the "she'll probably never walk or talk or..." bit). In fact our pediatrician was upbeat and helpful, assuring us that much could be done and that she knew we were "going to have a great time with this kid."<br />
<br />
Still, I'd spent the drizzly night staring out the window into the courtyard and sleeping very little. If I did doze off a nurse would be sure to pop in with Kelly, trying to get her to nurse. However, Kelly refused to wake up for that or any other reason, and wouldn't open her eyes or cry for another two weeks.<br />
<br />
Jerry? He'd gone home and gotten very drunk. The next morning, before the sun came up, he stood in front of the <a href="http://www.arcofthecapitalarea.org/">ARC of Austin</a>, pouncing on the first employee to show up to ask, "What can I do to help my daughter?"<br />
<br />
This day we were huddled in my hospital room with Kelly, trying to figure out what on earth the future held. <br />
<br />
There we'd been, perched on the edge of the almost-empty nest, ready to fly off to new adventures after an entire marriage built around the raising of my three daughters from my first marriage. Then I discovered that I was pregnant at 42. We cheerfully revised the family plan. <br />
<br />
Now we were hit with this. New adventures, indeed!<br />
<br />
A knock, a peek around the door, and into my room came an elegant, lovely woman with a stack of photo albums, saying she was from a parent-to-parent program called Pilot Parents. Would we like to talk?<br />
<br />
Oh, yes. We definitely would like to talk.<br />
<br />
And in that moment began a 30 year friendship that will end only when we're all dead and gone. Jo Rettberg, and later her husband Don and son Donnie (at that time; he now firmly eschews the diminutive) had blazed a trail through the myths and realities of Down syndrome.<br />
<br />
Her approach was simple. She showed us Donnie's photo albums, beginning with his baby years and over all his eight years on earth. What we saw was not the drooling dolt of mongoloid stereotype, the vision of our deepest nightmares.<br />
<br />
We saw a bright, beautiful, happy boy, the apple of his family's eye. We saw a family content with their lives. In that one short visit we became aware of possibilities far beyond the realm of anything we'd imagined. <br />
<br />
Later Don would enlist Jerry's help to build a home for the <a href="http://www.dars.state.tx.us/ecis/">Infant Parent Training Program</a>. Jerry would enlist Don's help in reaching out to others in support of building <a href="http://www.downhomeranch.org/">Down Home Ranch</a>.<br />
<br />
What the Rettbergs mostly helped us do was to see undreamed-of possibilities that took the place of the dreams that faded after our babies were born with an extra chromosome. <br />
<br />
And in no small ways, their faith helped us find ours. When we were re-married in the Catholic church years later, the Rettbergs were there as witnesses.<br />
<br />
Jo and Don took quite a bit of ribbing last night about their relocation to an area that has been blanketed under snow for the past several months. Who retires to Ohio, after all? But there were a lot of tears shed by tall, strong men (many of them retired military) as they choked out their funny stories and presented their farewell cards and gifts.<br />
<br />
Because this is one family whose absence will be hugely felt. Their lives have touched literally thousands in the Austin area, as they showed so many of us how to live with Down syndrome, and we have shown so many others through the years.<br />
<br />
We will be ever grateful for their friendship. <br />
<br />
Bon voyage, dear friends. Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-78529297392504596982014-01-02T08:44:00.000-06:002014-01-02T08:46:25.084-06:00God's economy<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVed1JCaP0l4Hz6ugVYhiu0RBqOBn_tXhgCSl2EuG1E9aojz81Bk6CaA1E9NQvkqLuD3LScOY5dBcmI-e5-KreOg4g8ZIL7OPKxrjYBZtmge9P-tUf8yatljeFboT5jdPrIg9ba4I_8lsg/s1600/10-5-12+Hatch+(204).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="168" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVed1JCaP0l4Hz6ugVYhiu0RBqOBn_tXhgCSl2EuG1E9aojz81Bk6CaA1E9NQvkqLuD3LScOY5dBcmI-e5-KreOg4g8ZIL7OPKxrjYBZtmge9P-tUf8yatljeFboT5jdPrIg9ba4I_8lsg/s200/10-5-12+Hatch+(204).JPG" width="200" /></a></div>
There was a death yesterday at the Ranch, a small one.<br />
<br />
The baby chicken Ashley was caring for so lovingly, who seemed to be doing so well, just (as my grandmother would have said) up and died.<br />
<br />
Naturally most of the Ranchers had invested heavily in little Prancer's struggle to live, stopping by Ashley's office multiple times a day to ask about him. There is widespread sadness over his demise.<br />
<br />
Most people would probably shrug and move on down the pike. In Mother Nature's economy, (which Prancer's mother shares, having ditched him out of the nest as soon as she detected something amiss) that makes sense. Cut your losses, concentrate on those remaining.<br />
<br />
But scripture says that not one sparrow will fall to the ground outside our Father's care.<br />
<br />
As a young teenager, I bugged my grandmother about the parable of the lost sheep. "But what about the other 99 sheep?" I would insist. "He goes off and leaves them to find the one? That doesn't make any sense! The wolves will get five or six of them when he could just lose the one."<br />
<br />
"That's what the Bible says," she would state firmly. "It's not up to me to make sense of it."<br />
<br />
Now far past my grandmother's age when we had this conversation, I think I understand. God has a different economy altogether, one in which miracles occur. How it works I could not begin to say. It's what the Bible says. It's not up to me to make sense of it. <br />
<br />
Sadly, Mother Nature's economy prevails in this old world, which is why babies with Down syndrome and other disabilities are generally aborted once the anomaly disqualifies them from joining our ranks is identified. <br />
<br />
Jerome Lejeune, the French scientist who discovered the third chromosome that causes Down syndrome, parted ways with his colleagues once abortion became the preferred "treatment" for it. He was ostracized to a significant degree for believing that every life has value, and that people with Down syndrome are no exception.<br />
<br />
"What do I become," he asked, "if I do not work to protect them?" He understood the economy of God.<br />
<br />
So yes, little Prancer is gone, but he not fallen outside our Father's care. Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-21793124310612318682013-12-27T07:44:00.000-06:002013-12-27T07:44:18.523-06:00A Christmas Miracle (very small one...)<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibES2bnOhVH0PJYSnlk6l5c4djmt_lWstdmKmoAZUiAEZ4IqMCcwHLjc-cEPX_OzG49YQLywe4no47k8fqde61O6Tx85qbtB40WMj9ix7kYJU0AxNtcRCBSomYPC32Q9wLM_7mn1Ns8bzz/s1600/mama+hen.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibES2bnOhVH0PJYSnlk6l5c4djmt_lWstdmKmoAZUiAEZ4IqMCcwHLjc-cEPX_OzG49YQLywe4no47k8fqde61O6Tx85qbtB40WMj9ix7kYJU0AxNtcRCBSomYPC32Q9wLM_7mn1Ns8bzz/s320/mama+hen.jpg" width="238" /></a></div>
<span style="font-family: Georgia, "Times New Roman", serif;">Okay, folks, it's time to get blogging about the Ranch again. Things are happening big time around here.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">For example, we had a Christmas miracle all our own.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">For weeks when Cathy has been tending the chickens at night, closing them up warm and cozy in their hutch, she has noticed that one is missing. Still, when she counts them during the day they all would seem to be there. Very strange.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">On the other hand, they all share a distinct family resemblance, and they are very busy, so it is hard to count them.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">But on the morning after Christmas, the mystery was solved when Cathy found a mama hen and several tiny yellow chicks close to the giant Carolina jasmine bush nestled against the Learning Center. </span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">Amazingly, Mama had set on her clutch of eggs for many days and escaped the various varmints constantly on prowl--cats, possums, raccoons, and foxes--and hatched a dozen or so babies successfully.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">We hustled them into an empty coop and Cathy made the dash to <a href="http://www.tractorsupply.com/">Tractor Supply</a> in Taylor for a small waterer and feeder set, shavings, and some chicken chow where Mama can raise the babies in safety. One little guy that was not doing too well was taken in hand (literally) by Ashley to tend in the warmth of her cabin.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">Mama seems as proud of herself as we are of her. The lady at the Tractor Supply told Cathy, "You take good care of that mama. She's got the right instincts and a lot of them don't, 'cause they're just bred for egg production."</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">We promise. We will.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">And our little ones will join a whole host of others as they grow up. The week before Christmas we took delivery on 100 young laying hens to stock our "chicken tractor," a mobile chicken house with nesting boxes that can be relocated at will into various areas of the Ranch, enabling the chickens to free range during the day and be safe at night.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">But for now they're tucked away in their nursery, safe from harm.</span><br />
<span style="font-family: Georgia;"></span><br />
<span style="font-family: Georgia;">And we are inexplicably totally delighted with our little Christmas miracle.</span>Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-32605166858293976622013-07-29T09:54:00.005-05:002013-07-29T09:54:52.741-05:00Racing the Clock<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlSb-FcQgBLhyLhm0FayIPBgxF9oTH5Tz_TTn-aM-tBor-jM3pPACsG9qseAqKtx5wqsFlIDm7COXn_ExYBwHA1aNbbmaEGZXl1kb9IxGn1NQxgSkpQ-A-CbCWUiP3dlpcqKz5jg8cU5I_/s1600/Visiting+with+a+young+fried+NDSC.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlSb-FcQgBLhyLhm0FayIPBgxF9oTH5Tz_TTn-aM-tBor-jM3pPACsG9qseAqKtx5wqsFlIDm7COXn_ExYBwHA1aNbbmaEGZXl1kb9IxGn1NQxgSkpQ-A-CbCWUiP3dlpcqKz5jg8cU5I_/s320/Visiting+with+a+young+fried+NDSC.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me visiting with a young attendee at the NDSC</td></tr>
</tbody></table>
Jerry and I, three staff, and two Down Home Ranch Board members attended the<a href="http://www.ndsccenter.org/"> National Down Syndrome Congress</a> Conference (NDSC) in Denver in mid-June. Jerry and I went up early to attend the Global Down Syndrome Foundation Round Table on current advances in Down syndrome research and treatment.<br />
<br />
Wow! What a difference a few years make! Down syndrome has traditionally been a subject few were willing to tackle in terms of research. The reasons are complex and varied.<br />
<br />
First, there's the matter of an entire chromosome being involved, not a single gene, as in cystic fibrosis. It has only been in the last decade or so that researchers have been willing to tackle such a complicated and daunting task. Where to begin?<br />
<br />
Second, people with Down syndrome occupy a discounted niche in society, and many are perfectly satisfied for the main "treatment" for it to be early prenatal detection and elimination. Why bother?<br />
<br />
So, even though there are huge numbers of people with Down syndrome growing up or living with the effects of it, the amount of money set aside to study it and remedy it is minuscule in comparison.<br />
<br />
But this is changing, and the reason it is changing gives me chills and thrills of happiness. It's because--all over the country--families and friends of people with Down syndrome really, really love their kids and decided to do something to ensure a longer, better life for them.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSD-RBnH_pJ0e4Yr_57uPrlEnekT8JhVmv4xz2v6AcAHZumIBxpsVvkf0EyOlByDrhXE1LfdgzVXxsRlu1ESQvYLKSN2JL1QbqCa1ikCAAm9qZkA5sHyoh29BvbV3RRFuXFjPVaJCzP7pi/s1600/Dance+2.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSD-RBnH_pJ0e4Yr_57uPrlEnekT8JhVmv4xz2v6AcAHZumIBxpsVvkf0EyOlByDrhXE1LfdgzVXxsRlu1ESQvYLKSN2JL1QbqCa1ikCAAm9qZkA5sHyoh29BvbV3RRFuXFjPVaJCzP7pi/s320/Dance+2.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Two attendees having their own dance</em></td></tr>
</tbody></table>
<br />
Of course we've always loved our kids, but we weren't always organized in ways to let us do anything about it. We were marginalized and isolated and, until relatively recently, advised to stick them in a state school and forget about them.<br />
<br />
When our Kelly was born in 1984, though, things had started to change. Our pediatrician was knowledgeable and did not paint the grim picture presented to most new parents. She was upbeat and told us right off, "You're going to have a great time with this kid!'<br />
<br />
By happy chance, the NDSC convention that year was in San Antonio and my daughter Martha and I attended it when Kelly was just a few weeks old. There were about 300 people total in attendance. This year, believe me, we soaked up pretty much all the meeting and hotel space available in downtown Denver and the estimate of attendees is around 3,000.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii2uqmyR8hxfte7FBXaspQOVbyNyRGJav-hMcv9tUGj6Bale8w67VizHhJms3lLMfiSqJzkdEYOvFhR_6oGSD7egnSDWioUvzsiqcaMglxJhdS9RY7Kd7LIZCU_IzzENvubeM9f5fWNkjc/s1600/Jerry+&+Michelle.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii2uqmyR8hxfte7FBXaspQOVbyNyRGJav-hMcv9tUGj6Bale8w67VizHhJms3lLMfiSqJzkdEYOvFhR_6oGSD7egnSDWioUvzsiqcaMglxJhdS9RY7Kd7LIZCU_IzzENvubeM9f5fWNkjc/s320/Jerry+&+Michelle.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Jerry with Michelle Whitten, founder of the <span id="goog_1065064318"></span>Sie Center<span id="goog_1065064314"></span><a href="http://www.blogger.com/"></a><span id="goog_1065064319"></span><span id="goog_1065064315"></span></em></td></tr>
</tbody></table>
<br />
At the <a href="http://www.ucdenver.edu/academics/colleges/medicalschool/institutes/lindacrnic/Pages/lindacrnic.aspx">Linda Crnik</a> Institute for Down Syndrome Research at the University of Colorado Medical School, we heard presentations on proposed and ongoing research designed to mitigate or erase the effects of what is believed to be only a few genes on the extra 21st chromosome borne by people with Down syndrome. We also heard the "good news" about families with a child with Down syndrome, which is that they tend to be happier than other families, with a lower divorce rate. (Makes sense: all those daily hugs!)<br />
<br />
At the conference itself we attended a variety of workshops, splitting up to be able to cover as much territory as possible. Our group consensus is that each and every one attended was well presented and worthwhile, quite a testament to the organizers. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEs7TZu1bPDgV72-0debWYRz5yqjxxA_pxaICZaYLAAnUA3yB9P2tM3Xf1iIgnWH4qgYJdemQjxcULCVs9KY9p6tMYO95LrjUaPKsrFQLzxt1G9rGTTZ0KeiIV-HBRfuYt39v1-HM-Y0Bk/s1600/Judy,+Gigi+&+Carol.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEs7TZu1bPDgV72-0debWYRz5yqjxxA_pxaICZaYLAAnUA3yB9P2tM3Xf1iIgnWH4qgYJdemQjxcULCVs9KY9p6tMYO95LrjUaPKsrFQLzxt1G9rGTTZ0KeiIV-HBRfuYt39v1-HM-Y0Bk/s320/Judy,+Gigi+&+Carol.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Judy, Gigi, and Carol at banquet</em></td></tr>
</tbody></table>
Another exciting development to emerge from the conference is that the NDSC has embarked on an aggressive campaign to provide the medical community that will counsel prospective parents who have received a diagnosis of Down syndrome in their baby with accurate information. Generally to date 90% of the information given is dismal and most of it isn't even up-to-date scientifically.<br />
<br />
There is no way to even touch on all the important things we learned, but I encourage you to follow up with the links to websites included in this blog and below:<br />
<br />
Down <a href="http://www.dsrtf.org/">Syndrome Research and Treatment Foundation</a><br />
<a href="http://www.utexas.edu/research/wcaar/jps/">Down Syndrome Research Lab</a>, University of Texas at Austin<br />
<a href="http://www.alz.org/research">www.alz.org/research</a> for research on Alzheimer's Disease<br />
The Sie Center for Research <a href="http://www.globaldownsyndrome.org/our-story/anna-and-john-j-sie-center-for-down-syndrome/">http://www.globaldownsyndrome.org/our-story/anna-and-john-j-sie-center-for-down-syndrome/</a><br />
<br />
<br />
<br />
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-17530257128744347592013-07-04T10:52:00.002-05:002013-07-04T11:01:14.230-05:00Happy to be here<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMl6ghFQaCmI7jaYs-KbaJ5FcFmzJZuT_cVtAtGom3SLro_tEeVrDRvAjtdd_ck0HNBZRdbEdPNanSjx2RyBuADi15V1tfU7cpjqGtJXZkxH2INFUJIjmVuHLn7f0fsWEah-aBybaMBbpd/s1600/DSCN5278.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMl6ghFQaCmI7jaYs-KbaJ5FcFmzJZuT_cVtAtGom3SLro_tEeVrDRvAjtdd_ck0HNBZRdbEdPNanSjx2RyBuADi15V1tfU7cpjqGtJXZkxH2INFUJIjmVuHLn7f0fsWEah-aBybaMBbpd/s400/DSCN5278.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Volunteer Cacy Scott from <a href="http://www.sunnybrookcc.org/">Sunnybrook Christian Church</a> of Stillwater, OK</em></td></tr>
</tbody></table>
I often correct people when they say Jerry and I "built" Down Home Ranch. We're the Founders, but other people built it.<br />
<br />
And I don't mean just the homes, the ponds, the greenhouses, the barns, and other structures. I include the fences, the programs, and the organization. They've done it every way from stacking chairs to digging postholes to trouble shooting technical glitches with our ever glitchy IT system.<br />
<br />
Foundations gave us a lot of money to hire people to build these things, but volunteers enabled us to actually do it. Over the past ten years alone we estimate that volunteers have contributed about 130,000 hours of love and labor.<br />
<br />
Every now and then a closer relationship than usual develops with a group, as has been the case with Sunnybrook Christian Church of Stillwater, OK. Rona Tracy, a church member blessed with a little one with Down syndrome, found the Ranch on the internet. She got others interested and they decided to do a mission trip to the Ranch over spring break. We celebrated their fifth mission visit recently, and by now we all feel like family.<br />
<br />
One special volunteer, though, has just a real special place in our hearts, and that's Cacy Scott, the lovely young girl pictured above kanoodling with Jenny (who loves to kanoodle!)<br />
<br />
Cacy is 13, going into 8th grade at Pawnee Middle School in Pawnee this fall. And she is a trouper. She's here with her mom Rachel and siblings Wesley and Isabel helping out at Ranch Camp.<br />
<br />
I first met Cacy when I walked into the Pavilion and was confronted with what seemed to be a face on the back of a head. I quickly realized that the eyes, nose, and mouth were drawn there and that the two-faced little minx who talked a friend into the art work was quite a character.<br />
<br />
At the age of two Cacy developed <a href="http://www.naaf.org/">alopecia areata</a>, a condition in which the body hair falls out, sometimes in patches, but often, as in Cacy's situation, completely. Cacy's pate is egg-like in its smoothness, freckled and tanned by the summer sun.<br />
<br />
I recently had my own bout with baldness and compared notes with Cacy on that matter. Was she ever bullied at school? Yes, but not because of being bald. Did she get teased a lot? Not really. "All my friends are good with it," she says with a smile and a shrug.<br />
<br />
I told her as long as I had on my wig over the course of my treatment, people told me I looked fabulous no matter how I was feeling, and so I had decided that people must judge other people's health largely on the basis of their hair. She laughed. "Yeah," she said, "the hardest thing is people assume I have cancer and feel sorry for me. One of the campers almost started crying."<br />
<br />
Cacy loves the Ranch and comes whenever she gets a chance. She says she feels at home at the Ranch and with the Ranchers, because "They always remember me when I come back, and everything we did going back to the first time I came!"<br />
<br />
Mom Rachel told me that Cacy is already lobbying to stay longer next summer. I asked her what she'd done so far this summer and she said she was with the Blue Team for two weeks, assisting campers with activities and this week she's a floating CIT, which means she stacks a lot of chairs!<br />
<br />
Cacy's plans definitely include going to college and studying to become a music therapist like her friend Robin Buford, who we agreed must be the world's most enthusiastic, charismatic, and entertaining music therapist. (Needless to say she is a favorite with our Ranchers, too.) After college will come marriage and a family, and travel in Italy.<br />
<br />
But by now it was time to be off to blow up water balloons, help with line dancing, and stack some more chairs.Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com2tag:blogger.com,1999:blog-1908985835552332746.post-76759264684603828542013-06-23T22:05:00.006-05:002013-12-27T07:21:10.948-06:00Every life has value<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDBYAlDmJTRTnqWwiBJmUfEbOrAOCFZrLQgo1_ul4hS2C6S-ezWMC-j0UvF5f3PDCQwkbTo-d4kRcaTAh5IBoqCxgC05J-7MrhI2KxgR5iDVMWPAmKQZfqtN5-HMc3c-yvXzQZVzPU6WFf/s1600/joan+of+arc.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDBYAlDmJTRTnqWwiBJmUfEbOrAOCFZrLQgo1_ul4hS2C6S-ezWMC-j0UvF5f3PDCQwkbTo-d4kRcaTAh5IBoqCxgC05J-7MrhI2KxgR5iDVMWPAmKQZfqtN5-HMc3c-yvXzQZVzPU6WFf/s1600/joan+of+arc.jpg" /></a><span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">I woke up in a
cold sweat yesterday morning from a nightmare.<o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">No
monsters, just random things that I was
somehow responsible for popping up, with no framework in which to
approach them, no common cause with others to let me know what I was
responsible for.<o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: 12pt;">And the triggers for my nightmare?<span style="mso-spacerun: yes;"> </span>One is the down-to-the-wire battle over abortion reform in Texas going on right now. </span><br />
<span style="font-size: 12pt;"></span><br />
<span style="font-size: 12pt;">Another is going to Relevant Radio’s <i style="mso-bidi-font-style: normal;">Women of the Well </i>breakfast series last Wednesday and hearing Dee Ann Smith's story of her struggle with and recovery from alcoholism.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-size: 12pt;"></span><br />
<span style="font-size: 12pt;">A third was lunch with a close friend who is gay and really hearing—for the first time <i style="mso-bidi-font-style: normal;">really</i> hearing—that he has felt for much of his life that he really is worth less than others. He came to love Down Home Ranch because it affirms that "every life has value."<o:p></o:p></span></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">People sometimes ask
why we built the Ranch.<span style="mso-spacerun: yes;"> </span>We’ve given them
many reasons over the years, usually having to do with quality of life for our
daughter, Kelly, who has Down syndrome.<span style="mso-spacerun: yes;">
</span>But I don’t think we ever gave the truest, simplest, most obvious reason
of all.<o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-indent: 0.5in;">
<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">In fact, it’s so true,
simple, and obvious we thought it had to be self-evident to anyone who would even
ask.<span style="mso-spacerun: yes;"> </span>The reason is this: Kelly is worth it.<o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"><em><strong>Every life has value.</strong></em></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">So eager was I to attend The Women of the Well event that I showed up at the Diocesan offices a week too soon and 25 minutes too early, and was so informed by the receptionist.<span style="mso-spacerun: yes;"> </span>Undaunted, I reappeared last Wednesday with a deep sense of anticipation and excitement I didn't really understand.<span style="mso-spacerun: yes;"> </span></span></span><br />
<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif; mso-spacerun: yes;"></span></span><br />
<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-spacerun: yes;">As I sat at the table waiting for the event to get underway, I</span> thought, <em>I wish I’d brought Kelly!</em> </span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: 12pt;">Although Dee Ann's talk was about her alcoholism, it touched poignantly upon the discovery of her true worth the eyes of God in the struggle. It probed the question of our dignity as human beings</span><span style="font-size: 12pt;">. </span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"><em><strong>Every life has value.</strong></em></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;">I thought about talks I've had with Kelly on occasion about abortion, and the fact that very few babies diagnosed with Down syndrome
are allowed to live.<span style="mso-spacerun: yes;"> </span>A very hard
conversation to have, to which Kelly said in her simple, direct way, “I want to tell people to let
them live.<span style="mso-spacerun: yes;"> </span>I have Down syndrome, and I love
my life.”</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"><o:p>Remembering that, I recalled the meaning of the name <i style="mso-bidi-font-style: normal;">Kelly</i>: Warrior Woman, and smiled to myself. Kelly and I had been signed up for the May 8th Walk for Life, but I'd gotten sick in late April wound up in the hospital so we weren't able to go. Kelly is ready to tell people of her love for life, so this was a big disappointment for both of us.</o:p></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;">Just then Dee Ann referred
to Joan of Arc and her motto before going into battle: </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;"><em>I am not afraid of anything.<span style="mso-spacerun: yes;"> </span>I
was born to do this.</em> </span></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;">Hearing that was like receiving an electric shock. I actually got the shakes at that point, and it wasn’t from the very strong coffee they had served, either.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;">Warrior Woman! I was hearing a call to action.</span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;">Suddenly everything dovetailed. No longer can I sit on the sidelines in the agonizing debate over abortion and other pro-life matters. Over the past 28 years I have met and come to know and love literally hundreds of people with disabilities ranging from Down syndrome to autism, people whose lives are seen as so worthless that they are denied entry even to life's portal.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">This is about more than a casual walk for a cause. It's a call to use all the gifts God has given me, which very much include my daughter, to reach out to others and tell our story.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"> </span></div>
<o:p><span style="font-family: Georgia, "Times New Roman", serif;"> * * *</span></o:p><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: 12pt;">Alas, this story cannot be
continued on this site.<span style="mso-spacerun: yes;"> </span>Down Home Ranch
is a 501 (c) (3) organization and as such is prohibited from engaging in
activities designed to exert political pressure and sway public opinion.<span style="mso-spacerun: yes;"> </span>Although the role of education is recognized,
the government defines “education” and in order not to pose any risk to the
Ranch, I have established a separate blog</span><span style="font-size: 12pt;">.<o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">I will continue to
present Ranch news, staff profiles, and invite other members of the Down Home Ranch community to share
their observations on this site.<o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-size: 12pt;"><span style="font-family: Georgia, "Times New Roman", serif;">I sincerely hope you
will follow me to my new site as well. As soon as I can get it up and running, I will let you know. <o:p></o:p></span></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: 12pt;"><o:p> </o:p></span></div>
<br />
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<span style="font-size: 12pt;"><o:p><span style="font-family: Calibri;"> </span></o:p></span></div>
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com2tag:blogger.com,1999:blog-1908985835552332746.post-56438058473293599982013-06-12T14:13:00.002-05:002013-06-16T15:34:26.520-05:00Growing up on “The Farm” - Memories of Travis State School<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"></span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"></span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcNkGAnMNQsq-MZSC7oEBj4LLBdKVPivhSYzBk6pqxAgLdYtNT9E_rBhYLc5yr7gyISuuZ-XfkmihCs7G3Y7OYvVuAfdt02AB4zOXJgdoOzQYm6bVsh2mYAtJ16Jr7Ywp_gssY-3uR9rRW/s1600/Cathy.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcNkGAnMNQsq-MZSC7oEBj4LLBdKVPivhSYzBk6pqxAgLdYtNT9E_rBhYLc5yr7gyISuuZ-XfkmihCs7G3Y7OYvVuAfdt02AB4zOXJgdoOzQYm6bVsh2mYAtJ16Jr7Ywp_gssY-3uR9rRW/s200/Cathy.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Cathy Belliveau, Program Director</em><br />
<em>Down Home Ranch</em></td></tr>
</tbody></table>
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">I often wonder how we got there, and how it was that we all came to be created
by that place, changed forever by our years there. </span></div>
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">
</span><span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">It was as if
I were meant to be there.<span style="mso-spacerun: yes;"> </span>Even in my
earliest years <span style="mso-spacerun: yes;"> </span>I loved tagging along
with Dad to the “Farm,” as a girl full of curiosity would, wanting to
understand what goes on from 8-5 in the parent world.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuLk5FTkZ2ChbPKrR9TS6ISZ_CxM6C7ewLIVTciYSIm9WbTg6-BIghD7DlOh3aHkaZgiLJfGyIwwL4rCJBttYJjCiFn3vlTG9b0Tz6Jy3ENEpVzTkpR4ltI9BlHjZGnRrn-cYGrcdyFjpU/s1600/Halloween.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuLk5FTkZ2ChbPKrR9TS6ISZ_CxM6C7ewLIVTciYSIm9WbTg6-BIghD7DlOh3aHkaZgiLJfGyIwwL4rCJBttYJjCiFn3vlTG9b0Tz6Jy3ENEpVzTkpR4ltI9BlHjZGnRrn-cYGrcdyFjpU/s200/Halloween.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Camp Days</em></td></tr>
</tbody></table>
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">It was Narnia
and Disneyland all in one place, with a bit of 1984 thrown in on occasion.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>It could
be a nightmare but in the best years it was mostly a haunting
wonderland…something fragile and dark, full of beauty and tinged with sadness,
all wrapped up in a sensory overload jumble. <span style="mso-spacerun: yes;"> </span>I see it now as captured in a giant snow globe.<span style="mso-spacerun: yes;"> </span>Surreal and locked the memories stir when I
shake them in my mind. <span style="mso-spacerun: yes;"> </span></span></div>
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<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">It is so hard
for anyone to understand who had never been there. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">To understand,
you had to <i style="mso-bidi-font-style: normal;">breathe</i> it in…let the
place seep into you to experience the sense of awe it still holds for me. <span style="mso-spacerun: yes;"> </span>It brings me to tears even after all these
years: That Farm on the hill, holy depository for the broken and the lost, the
loved and the rejected, the <i style="mso-bidi-font-style: normal;">home</i>. <span style="mso-spacerun: yes;"> </span>It was the playground of my teen years…my rite
of passage to adulthood. <span style="mso-spacerun: yes;"> </span>It is a big
part of who I am, and a big part of me was left behind, inside those gates. </span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">
<br />
I was thirteen when I first came to the Farm. <span style="mso-spacerun: yes;"> </span>It took a while to take everything in and
allow it to enchant me, as it had so many others who dedicated their lives to
the care of the people on the Farm. <span style="mso-spacerun: yes;"> </span>I went
there every chance I had. <span style="mso-spacerun: yes;"> </span>I spent my
summers there teaching and being taught. <span style="mso-spacerun: yes;"> </span>It was the best growing up place anyone could
ask for. </span></div>
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<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">After all
these years it is still the Farm I think of when I recall the proudest moments
in my work. <span style="mso-spacerun: yes;"> </span>I still see the faces and hear
the voices….calling me back over all those years to the past.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><span style="mso-spacerun: yes;"> </span>Their faces come back to me—bringing smiles
and tears. <span style="mso-spacerun: yes;"> </span>I see the hands of the
children and those of the elderly, all needing, yet all giving. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">The Farm started
as a true farm community in 1933 for those society felt needed a separate home
away from the rest of us.<span style="mso-spacerun: yes;"> </span>At first it
was just for men with mental disabilities, but it expanded in my years there to
open the doors to women and some children.</span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ig6lXzX6z9qBcYSKq4vNfYUS-mFhYSny2VeFoN8hpsUGjOPC_Io1qPIXIHYNBlf2etSp6mh_0sbK9DFlzAB2Ob4s8plEgHO_XhPMlqWfNNAb0HTvAXrHFVlthayMMSB68JOZNDm_i0YY/s1600/CB+Special+Olympics.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ig6lXzX6z9qBcYSKq4vNfYUS-mFhYSny2VeFoN8hpsUGjOPC_Io1qPIXIHYNBlf2etSp6mh_0sbK9DFlzAB2Ob4s8plEgHO_XhPMlqWfNNAb0HTvAXrHFVlthayMMSB68JOZNDm_i0YY/s320/CB+Special+Olympics.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Cathy volunteering at Special Olympics</em></td></tr>
</tbody></table>
<br />
</span><span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">The older men
would tell me stories of growing vegetables and working in the fields below the
main campus. <span style="mso-spacerun: yes;"> </span>That was before my
time.<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">How proud they were of their work
and how they missed the productive years, before the rules changed and the
powers that were took the farm work out of the farm and left in its place <i style="mso-bidi-font-style: normal;">the institution</i>. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">These old
gentlemen should have been someone’s grandpa….so they became mine, and I will
never forget them.<span style="mso-spacerun: yes;"> </span>And in my mind’s eye
I see my red headed <span style="mso-spacerun: yes;"> </span>six year old, with
his brown vacant eyes and one hand stretched out as if searching for something.
<span style="mso-spacerun: yes;"> </span>He whirled around in his dance for
one….laughing at the wind….oblivious to my presence. <span style="mso-spacerun: yes;"> </span>How I longed to reach him and unlock the child
and set him free…but in a way he was already free…free from the world that
could be so cruel to someone so different. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikvJalucdhuvvuKbiGjKL2P2G2qBVd2hM1BCK0I8OXP29oBr_4xrmlS1kpo5CQehsdgliiZZmoZESRN8GaxezjyTTw8khkLMmaSFJPNdAyCO-er-UqhCVO0p7empxJbtmhoi0edWduSiEe/s1600/Santa.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikvJalucdhuvvuKbiGjKL2P2G2qBVd2hM1BCK0I8OXP29oBr_4xrmlS1kpo5CQehsdgliiZZmoZESRN8GaxezjyTTw8khkLMmaSFJPNdAyCO-er-UqhCVO0p7empxJbtmhoi0edWduSiEe/s200/Santa.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Santa paid a visit</em></td></tr>
</tbody></table>
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">I remember
Christmas on the Farm, with parades and bands and hundreds of smiling faces
wrapped up in holiday joy. <span style="mso-spacerun: yes;"> </span>In the summertime
there were watermelon days, paddle boat races and swimming in the pool.<span style="mso-spacerun: yes;"> </span></span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"></span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">We loved Halloween so much we dedicated a an
entire month to prepare for it.<span style="mso-spacerun: yes;"> </span>Staff
worked tirelessly to create costumes, a haunted house, and a carnival with
candy apples and games of chance. There
was not a single holiday we didn’t celebrate and go all out for.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">In some ways
it was all such a perfect safe haven.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">But not
always. <span style="mso-spacerun: yes;"> </span>Like any loving but sometimes
dysfunctional family there were hard days and times it was difficult to smile,
but they were few enough in my day. <span style="mso-spacerun: yes;"> </span>The
hugs and the loving words made up for the black moments when someone forgot our
purpose. <span style="mso-spacerun: yes;"> </span>We were family to each other
and to the people who lived there.</span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;"></span><br />
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">The
lessons we learned about unconditional love and acceptance were gifts we all
received. <span style="mso-spacerun: yes;"> </span>Those gifts are cherished to
this day, and will be remembered as long as I have any memory at all.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvJ3Oe4oVUhafzUT60eSs5hT0f0v51Hxwa7hpozLlb4wxJ_GnLF2SVceuin-e4qb8PIRHUV2CsDh6tpXvfSA5z0ajA9-mMuupITs2FTn5-aciKUoJxEVGeL51T10icqIEP49sESTBihxTt/s1600/scan0001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="296" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvJ3Oe4oVUhafzUT60eSs5hT0f0v51Hxwa7hpozLlb4wxJ_GnLF2SVceuin-e4qb8PIRHUV2CsDh6tpXvfSA5z0ajA9-mMuupITs2FTn5-aciKUoJxEVGeL51T10icqIEP49sESTBihxTt/s640/scan0001.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>The pond at Travis State School</em></td></tr>
</tbody></table>
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">It is
difficult—no, really it’s <i style="mso-bidi-font-style: normal;">impossible</i>—to
convey the depth of love many of us had for the people and for the place. <br />
<br />
The Farm was closed forever in 1995, shut down by people who didn’t understand
what it had been able to become over the years: a sanctuary. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">Shut down by
people with fancy theories but precious little real experience in living and
loving people with a label.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">Shut down, but
never forgotten. <span style="mso-spacerun: yes;"> </span>But not by me, and not
by the hundreds of other people who lived and worked there.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span lang="EN" style="color: #333333; font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN;">The Farm will
always be the haunting, mystical place on the hill that changed us all.<br />
<br />
<em>C. Belliveau</em><br />
</span></div>
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com3tag:blogger.com,1999:blog-1908985835552332746.post-20249976325706208322013-06-11T09:30:00.000-05:002013-06-11T09:30:19.727-05:00Changes, by Judy HortonSeems like I fell off the Blogosphere the past few months.<br />
<br />
Lots of things got in the way of blogging. I didn't want the blog to become all about my experience with cancer, which though possibly interesting, is not the purpose of this blog. <br />
<br />
I did post some on Kelly's struggles with my illness, which <em>is</em> quite pertinent to the topic. The whole thing hit Kelly hard. First she developed TMJ, probably because of stress. It took weeks to get a good diagnosis, followed by several weeks of physical therapy, followed by more weeks of visits with dentists, oral surgeons, fittings for mouth splints, etc. And because she could not eat she began dropping weight dramatically.<br />
<br />
"When can I be me again?" she would ask. <br />
<br />
She could not sleep either, and came to dread nightfall and going to bed. She began to imagine something was wrong with her hands. She obsessed on topics about which she had anxiety.<br />
<br />
We sought help for her and she was put on medication which helped almost immediately. She began seeing a gifted counselor. Laura, our driver, would take her to those appointments. Laura is compassionate and understanding, with a real gift for conversing with our Ranchers, and I believe became an integral part of the treatment herself as she and Kelly chatted on the hour-long drives to Austin and back.<br />
<br />
The therapist, Alicia, worked with Kelly on framing her experiences, getting through the tough times, and in general developing coping skills. Kelly clung to her lessons like a life raft. <br />
<br />
Gradually, things began to improve. The pain diminished, though it took weeks for Kelly to learn to "trust her teeth" again and begin to eat on the TMJ side.<br />
<br />
Alicia told me she had never had a client who worked so hard at getting well as Kelly. And she wasn't talking about just <em>handicapped</em> clients, but all of her clients to date.<br />
<br />
When I jokingly complained about my hair coming back curly, of all things, Kelly told me, "Mom, you've got to be more positive about your hair." <br />
<br />
Today Kelly is herself again, stronger, wiser, having come through a scary time for herself and for her family.<br />
<br />
As for me, here I am with curly hair, cancer-free, looking forward to a few more years on the mortal coil, and with a greatly enhanced appreciation for the love and generosity of friends and family who got me through the whole thing. <br />
<br />
Jerry and I realize very clearly now that time may be very short indeed, and we have dedicated ourselves to spending more and better time with each other and doing those things we've always meant to do but have put off. <br />
<br />
And so I retired on my birthday in May. Officially, irrevocably. Jerry has presented the Board with a plan for his retirement transition, and we are working on our last big fund-raising project, The Founders' Legacy. You'll hear more about that. I promise.<br />
<br />
As for this blog, I'll continue to write occasionally about issues families of people with intellectual disabilities face. I also want to continue introducing our staff and writing profiles on them. AND I want those staff to begin writing for the blog should they feel so inclined.<br />
<br />
So tomorrow Cathy Belliveau's piece on growing up on the grounds of the Travis State School will be the first of a series. Cathy is the Ranch Program Director, and the first time she saw the Ranch it reminded her so much of those good days at TSS, where her father worked and the whole family volunteered, and where Cathy found her lifetime vocation.<br />
<br />
Cathy now lives at the Ranch in a little cedar cabin with her two dachshunds. She works 60 hour weeks (on the easy weeks) doing everything from high-level administrative work to chasing chickens in the evenings, a task she has finally delegated to Michael. Jobs descriptions at the Ranch rarely cover it all...<br />
<br />
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-6743284838150417472013-02-27T14:16:00.000-06:002013-02-27T14:20:32.048-06:00Back in the Day<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGF64dj56empu8-QZVkFgyts3U5Jx2rR8HDMjcqX7NoN3acygavr3EnMEt1uR-ssEJNWjVFAdElwAdNeqmkZn9SE-VeYKMgrYdRQWjUmrw3R4LXxDNEqncFLNSqKB9vhZQirIvXQNZ-Iqb/s1600/imagesCACU48GH.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGF64dj56empu8-QZVkFgyts3U5Jx2rR8HDMjcqX7NoN3acygavr3EnMEt1uR-ssEJNWjVFAdElwAdNeqmkZn9SE-VeYKMgrYdRQWjUmrw3R4LXxDNEqncFLNSqKB9vhZQirIvXQNZ-Iqb/s200/imagesCACU48GH.jpg" width="155" /></a></div>
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">We’re now in our 22<sup>nd</sup> year of living on Down Home
Ranch.<span style="mso-spacerun: yes;"> </span>Jerry, Kelly and I moved here
into a small two-bedroom mobile home we dubbed “The Mustard Seed” September 9,
1991, having sold our home, and cashed out our retirement.</span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Looking back, I would give those three pioneers about one
chance in a thousand to actually see their vision come into being as it stands
today.<span style="mso-spacerun: yes;"> </span>We didn’t really know what we
were supposed to do, much less how to do it.<o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Each evening we would stand on our little porch, hold hands,
and sing the <i style="mso-bidi-font-style: normal;"><a href="http://en.wikipedia.org/wiki/Phos_Hilaron">Phos Hilaron</a></i>, an
ancient hymn sung as the sun goes down.<span style="mso-spacerun: yes;">
</span>Like as not, we wouldn’t have seen the sun all day, as it rained that
entire fall.<span style="mso-spacerun: yes;"> </span>Well, maybe it didn’t, but
that’s when I learned about <i style="mso-bidi-font-style: normal;">El Nino</i>,
and what it can do to Texas weather.</span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Jerry would go off to Austin to work, and I would take Kelly
to school, and then I would sit in the tiny office Jerry had built onto the
side of the mobile home, which I had ingloriously named “The Wart,” stare at
our Mactintosh computer, and wonder what to do next.</span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">There were buildings to be built, land to be cleared,
programs to be implemented, enterprises to be created, clients to be served…the
list was endless, and we started at the very most basic level: We asked <a href="http://stdave.org/">St.David’s Episcopal Church</a> in Austin for money to put in a septic system.<o:p></o:p></span><br />
<br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Graciously, the money was supplied, the system installed,
and for years thereafter I told anyone connected with St. David’s, “Each time
we flush, we bless St. David’s!”<span style="mso-spacerun: yes;"> </span>At
least I did until Jerry said he thought I’d shared enough.<o:p></o:p></span><br />
<br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">We had a plan.<span style="mso-spacerun: yes;"> </span>How we
built the Ranch conformed to the plan to build it only in the sense that what
we envisioned now surrounds us.<span style="mso-spacerun: yes;"> </span>It was
like we planned to drive to LA and mapped it all out, and got to LA but looking
back saw that we’d gone by way of Seattle.<span style="mso-spacerun: yes;">
</span>That’s why it’s hard when people want our “recipe” for doing something
similar.<span style="mso-spacerun: yes;"> </span>We can tell you what we did,
but it won’t be that way for you.<span style="mso-spacerun: yes;"> </span>An
organization is like a human being.<span style="mso-spacerun: yes;"> </span>It
has its own mysterious provenance, and its own unique DNA.<span style="mso-spacerun: yes;"> </span>There will never be another like it.</span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Back in the day, we didn’t admit it to each other, but we
were sometimes terrified that we’d put our marriage and our child in a
situation that would bring us all to rack and ruin.<span style="mso-spacerun: yes;"> </span>That’s why we were brought so close to God in
those days, and sang the <i style="mso-bidi-font-style: normal;">Phos Hilaron</i>
each evening, which in turn may be why the Ranch stands today.</span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">We have changed.<span style="mso-spacerun: yes;"> </span>Back
then, we were barely into our 50s, and now we are in our 70s.<span style="mso-spacerun: yes;"> </span>I look back and marvel at all the energy, and
hope, work and vision we not only brought to the building of Down Home Ranch,
but were able to convince others to bring also.<span style="mso-spacerun: yes;">
</span>I have said it many times, but it bears repeating: The greatest thing
about building the Ranch has been to witness so many people coming forward
offering the best of who they are, and of what they have, so that others may
have a better life.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">Soon we will begin construction on our Chapel of the Good
Shepherd.<span style="mso-spacerun: yes;"> </span>Some might say it is long
overdue, but I say it’s exactly the right time.<span style="mso-spacerun: yes;">
</span>In short order, I plan to become like <a href="http://www.biblicalarchaeology.org/daily/biblical-topics/new-testament/mary-simeon-or-anna-who-first-recognized-jesus-as-messiah/">Anna</a>, spending my days in the
temple and helping create a sanctuary for our community and for those who love
and support us.<o:p></o:p></span></div>
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;">And I definitely plan to teach the <i style="mso-bidi-font-style: normal;">Phos Hilaron</i> to any and all who will sing it with me as the sun
goes down.</span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p><em>Image Anna and the Christ Child, Pinterest</em></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p><em></em></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p><em>-----------------------</em></o:p></span><br />
<span style="font-family: "Georgia","serif"; font-size: 12pt; line-height: 115%;"><o:p>Note of appreciation: thanks to all who expressed concern for Kelly's recent trials. The various therapies are beginning to pay off, and she is more comfortable in mind, body, and spirit these days. Thank you for your prayers and healing thoughts.</o:p></span>Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-52235437126184515872013-02-20T06:03:00.000-06:002013-02-20T06:03:00.947-06:00Memento mori<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6zuWX_eX64g4FBHA9cIduqBrKd96ZaikNlJreMYo0eugUYwcirme8eq7ZjsKgLk0kxHGrGWmXzL91URm16Mdk0JDE_pmCVzM-lBFlmRszmbU8okKjfuMeXxq71dW5bUZo7UX6JtXwwoMk/s1600/800px-Braque_Family_Triptych_closed_WGA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6zuWX_eX64g4FBHA9cIduqBrKd96ZaikNlJreMYo0eugUYwcirme8eq7ZjsKgLk0kxHGrGWmXzL91URm16Mdk0JDE_pmCVzM-lBFlmRszmbU8okKjfuMeXxq71dW5bUZo7UX6JtXwwoMk/s200/800px-Braque_Family_Triptych_closed_WGA.jpg" width="200" /></a><span style="color: black; font-family: Tahoma; font-size: small;">Life's hardest lesson seems to be that we must always be struggling against our own
limitations--emotional, physical, intellectual, financial, spiritual. </span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="color: black; font-family: Tahoma; font-size: small;"></span> </div>
<div class="separator" style="clear: both; text-align: left;">
<span style="color: black; font-family: Tahoma; font-size: small;">I can
accept that I must struggle with that, but it's so unfair that Kelly should have
to, s</span><span style="color: black; font-family: Tahoma; font-size: small;">o now I find myself crying like a four year old "That's not
fair!"</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">Two and a half months ago Kelly got a cavity that began to hurt. Since people with Down syndrome don't perceive pain as quickly as we do, by the time she did notice it had bcome quite painful. </span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">We got it taken care of in short order, but then she developed a mouth ulcer, probably from biting her cheek while still numb from the dental procedure. She began to chew on the other side of her mouth while we treated the painful mouth ulcer, which took two weeks to heal.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">After the mouth ulcer healed, she began to complain of "another one" low down inside her cheek. We could see nothing but "treated." When she continued to complain after a few weeks we took her to the doctor. He said nothing was wrong.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">The next week she was in such distress I took her to the ER and they thought she had a tooth abcess and prescribed antibiotics and Oxycontin for pain. No better, not even the pain. </span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">We went to the dentist who said she had TMJ disorder, probably from stress over my condition (I am undergoing chemotherapy for ovarian cancer) and other issues going on in her life, and to use hot packs and Tylenol for pain relief. </span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">Next we went to her oral surgeon. He recommended physical therapy, and we are now in our fourth week of that. It has helped more than anything, but still she suffers.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">Most recently she began complaining of joint pain all over and developed some other bizarre symptoms. I immediately thought "autoimmune" and had Casey follow up with lab tests, which showed nothing much.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">Yesterday she got day and night guards to protect against clenching and grinding.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">When the pain is intense she cries and asks me, "When will the old me be back again?" and "Why won't God heal me?" And she can't comprehend that I really don't know these things, so I can't make any promises. This breaks my heart.</span></div>
<br />
<div dir="ltr">
<span style="font-family: Tahoma;">When my first daughter was born and the "bonding"
hit big I was overcome by this sense that I would never be truly free again in
my life, and my life was barely started (I had just turned 18). This
was in 1960 and WW II was only 15 years behind us. The stories of what
people are capable of doing were fresh in my mind. My Jewish grandfather's entire Polish family had been wiped out.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">We lived under "the bomb" in
a way people can't imagine today. Public buildings were labelled with large signs depicting the univeral radiation symbol and the words Fallout Shelter. </span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">So any illusions that I
could protect this baby were just that. </span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">Still, I knew if a Bengal tiger came
into that hospital room right then I would take it on in a flash. For that matter, I know that I still would.</span></div>
<br />
<div dir="ltr">
<span style="font-family: Tahoma;"><a href="http://www.advocatehealth.com/">Drs. Chicoine and McGuire</a> stated at a workshop
that there's empirical evidence that parents of disabled children live longer
than parents with typical children. I've heard parents say, "We
can never die!" in anguish over their inability to secure, absolutely secure, their children's future happiness.</span></div>
<br />
<div dir="ltr">
<span style="font-family: Tahoma;">In medieval and renaissance times, the artists often placed a <em>memento mori</em> in their paintings, a reminder that the viewer will someday die. (One wonders why in those times, with short life spans, plagues, wars and infectious disease unchecked, they felt this necessary!)</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">Jerry was 46 and I was 42 when Kelly was born. The first thing we confronted after her diagnosis with Down syndrome was the thought: <em>Oh my God, when we are 70 and 66, she will not be graduating from Plan II at UT. She will still need so much help. She will still need us.</em></span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">I think the Ranch, in a sense, is a <em>memento mori</em> and we parents have put our
beloved children into its hands to keep them safe against that day. Last fall two of our Ranchers lost their dads, and this had a huge impact on many of the Ranchers, including Kelly. Right during that time I was diagnosed with cancer, and Kelly has watched endless movies of people with cancer and generally they don't make it.</span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">I try to explain that they don't make movies about people who get cancer, get treatment, and get on with their lives. I try to comfort her in her distress. </span></div>
<div dir="ltr">
<span style="font-family: Tahoma;"></span> </div>
<div dir="ltr">
<span style="font-family: Tahoma;">I do what I can, but I can't slay this tiger, and it's a heartbreak.</span></div>
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Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-91631641463180713332013-02-12T07:23:00.003-06:002013-02-12T07:23:40.186-06:00Deep waterSunday the gospel was about Jesus instructing the disciples to put out to the deep water to catch fish. Simon protested, "We already tried that and it didn't work,"--the phrase that kills all dreams from catching fish to building ranches--but then recovered and said in essence, "But if you say so, we'll give it another go."<br />
<br />
The rest is history: loads of fish, so many other boats had to be called in to help out. They had to put out to where the fish were to catch them.<br />
<br />
But the point of this story isn't the fish, according to <a href="http://www.st-louis.org/">Fr. Larry</a>. The point is Simon's obedience to Jesus' intructions, after which Jesus tells the guys they are to become "fishers of men." <br />
<br />
The lesson applies to any great undertaking, at the outset of which three things are required:: 1) You must go into the deep waters, 2) You trust that God knows better than you and when He tells you to do something, do it, no matter how cockamamie it sounds, yes, even if you've "already tried that and it didn't work," and 3) You must expect to "catch fish."<br />
<br />
"Jesus can liberate us from the bondage of our certainties," said Fr. Larry. Twice. <br />
<br />
It's been a while since I posted. I lapsed into a funk in mid-January and started muttering things like, "The first days after diagnosis, with the surgery and the path reports and the marshalling of friends and family--that was the invasion of Normandy, but I have a feeling from here on out it's trench warfare." The weather was cold and dank, day after day, which didn't help. <br />
<br />
<em>Go into deep water.</em><br />
<br />
I was spending a fair amount of time riding my pity pot when I went to pray a little over a week ago, pretty much stripped of any illusions and brave talk of my "vision quest with cancer." I realized in fact that I was approaching God like a two-year-old about to have a tantrum. <br />
<br />
"I feel rotten! I don't like the weather! Nobody understands what I'm going through! Make me feel better! Now! Waaaaaa!"<br />
<br />
<em>Trust God.</em><br />
<br />
Actually, I was embarrassed. I was supposed to be praising God, thanking Him for my considerable blessings, and commending others into His care, and here I was all eaten up with the gimmees. And God did an amazing thing.<br />
<br />
"Yes," He said. "Exactly right. Come to me like a child, like a little child, who expects Me to listen, to understand, and to heal." (He didn't say anything about the weather.) <br />
<br />
Who trusts more than a toddler reaching his little arms up for Daddy to enfold him?<br />
<br />
<em>Expect to catch fish.</em><br />
<br />
As I prayed, I suddenly remembered a book a good friend got me at the outset of my illness. The title is <em><a href="http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=the+anti+cancer+dient+">The Anti-Cancer Diet</a></em> by David Servan-Schreiber, an M.D., psychiatrist, cancer patient, and researcher. I found it and started reading.<br />
<br />
The first half of the book is on nutrition and how to maximize your body's disease-fighting capacity and ability. It is scientifically sound, doesn't make outrageous promises, and seems reasonable, so I took notes and resolved to implement his suggestions and double up on my efforts to eat well.<br />
<br />
But the second half was the kicker, and the main message I needed to hear. It's on meditation and learning the live--really live--your life. With cancer, without cancer, healed, dying, and everything in between. A lot of it is about breathing and the importance of it.<br />
<br />
Sound stupid? It's not. My anxiety causes me to hunker down and literally hold my breath. I don't realize I'm doing it. My blood pressure soars, I feel panicky, I don't read my body's simple request for oxygen.<br />
<br />
The ghastly truth is that I know the importance of meditation, or centering prayer. I know its frustrations (suddenly finding myself creating grocery lists five minutes after beginning...) and its joys (truly life-enriching).<br />
<br />
I just don't do it.<br />
<br />
Later that day I was playing with my little dog Jenny. She loves to select a stuffed animal toy from her basket and we wrestle over it and she runs around the house going "cracker dog." Suddenly she spied a large rib bone she'd found on a walk and especially treasures. She picked it up and the game stopped. I tossed "evil raccoon" at her and she clearly wanted to play, but she didn't want to put the bone down.<br />
<br />
As I watched her grapple with this puzzling dilemma I thought, <em>This is a teaching moment, and the lesson is that to pick up something new, you've got to let go of something.</em><br />
<br />
And what I need to let go of--yet again--is my insistence that I can't experience joy until everything is just right. I had fallen into that trap:<em> I'll be happy when this is over. I'll do this or that when this is over. </em><br />
<br />
This may never be over, and life can only be lived in the moment or not at all.<br />
<br />
<em>Thanks be to God.</em><br />
<br />
<br />
<br />
<br />
<br />
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-20156668689860120092013-01-16T09:27:00.002-06:002013-01-16T09:27:43.697-06:00Thank you St. AnthonyYesterday I shared with a bunch of friends that I'd invoked a prayer to St. Anthony in desperation on a hunt for my eyeglasses, up against the clock ticking toward a not-to-be-missed medical appointment.<br />
<br />
Obviously they were in the condo, but I'd searched everywhere I'd been, everywhere I hadn't been, even into closets I hadn't touched. I knew I'd taken them off to take a shower; there were a limited number of places I could have put them.<br />
<br />
I peered out into the dark, rainy morning. I knew I'd be a hazard if I tried to drive without them. Finally, I decided to give St. Anthony a try.<br />
<br />
I'm a convert to Catholicism. Many of the quirky prayers and beliefs associated with this faith-for-the-masses I scoffed at during my upbringing as a proper Episcopalian and haven't made much attempt to learn about them since joining the Church. Still, I remembered a children's prayer I'd read somewhere (probably in a novel about somebody's Catholic childhood) so I chanted, feeling very silly indeed:<br />
<br />
<em>Tony, Tony, turn around!</em><br />
<em>Something's lost and must be found!</em><br />
<br />
Then I shrugged my shoulders, said, <em>Oh well</em>, and walked into the bedroom.<br />
<br />
<em>Hmm, maybe they fell off the nighstand and under the bed?</em> <br />
<br />
I got to my knees and peered under the bed. <em>Oh, well,</em> I muttered yet again, preparing myself to come up with Plan B and bracing myself against the bed frame and the nightstand on my knees to stand up.<br />
<br />
And there were my glasses, right at eye level, lying on a coverlet whose pattern obscured them from my weak vision when viewed from above (because I had looked 50 times on the bed for them at least) but perfectly obvious when viewed from this angle.<br />
<br />
<em>Thank you St. Anthony!</em> I whooped, put the glasses on my nose, the dog in her crate, and headed for my appointment.<br />
<br />
To my amazement, upon opening my car door, there between the door and the driver's seat lay a set of keys I'd lost ten days ago. <em>A double whammy!</em><br />
<br />
<em>How does it work? It does work! I know it works! </em>I marveled.<br />
<br />
I think it's this: We are literally blinded by our own efforts and anxieties. The minute we turn it over to a Higher Power, the blinkers are removed and we are given to see what we could not see just moments before. Somehow we take that concern and set it aside, and...trust.<br />
<br />
And though there are many long, adult, theologically puffed-up prayers to ask St. Anthony's assistance in finding lost items, I think I'll stick with the tried and true.<br />
<br />
I seem to recall someone saying that we needed to approach our faith as a little child anyway,<br />
<br />
<br />
<br />
<br />
<em></em><br />
<br />
<br />Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-39102444709574352842013-01-16T06:16:00.003-06:002013-01-16T06:16:47.060-06:00Last week I wrote of Kelly's continuing problem with jaw pain. I said that I was afraid my concern combined with my inability to do much (last week was chemo week; enough said) was causing confusion over her care.<br />
<br />
I said as much to Casey and Cathy, and whether or not it was is a moot question now. Jerry, I, and half the Ranch are frantic over her distress.<br />
<br />
Kelly has always overridden and denied pain, which is not uncommon among people with intellectual disabilities. She'll soldier on in silence to the point that it's only when something has become obvious and extreme that she will say anything at all.<br />
<br />
At the same time she is somewhat phobic about medical procedures, which is another reason she denies anything is wrong.<br />
<br />
Yet she is in such obvious distress that all of us at the Ranch are wringing our hands.<br />
<br />
Kelly has been diagnosed with temporomandibular pain, which means her jaw(s) hurt. We know the bottom one hurts. We don't know about the top one. She reports "It feels funny."<br />
<br />
Does it ache? Throb? Is it numb? Are pains constant, intermittent, deep, stabbing? Are they 1,2,3,4,5,or 6 on the pain scale? I have asked the questions every way I know and I get, "It feels funny. I want it normal."<br />
<br />
Well, normal we understand at least.<br />
<br />
What has caused this? The mouth ulcer that caused her to chew on that side for two weeks? The Botox treatments that allow us to help her clean her gums in that area?<br />
<br />
Yesterday Laura and I took Kelly to see the oral surgeon. Fifth appointment in three weeks: two dental, one ER, and one medical, plus yesterday.<br />
<br />
I must admit we're used to the quick fix. Growing up, Kelly was as healthy as any of my kids, and healthier by far than the first two, who made careers out of ear infections and producing strep germs. We're not used to long, protracted pain.<br />
<br />
"I want it gone on the cruise," she wails, which starts January 24. I finally had to tell her it doesn't look like that is going to happen.<br />
<br />
Dr. Buchanan, Kelly's oral surgeon with whom we've worked for years, gave us a long list of probabilities on what is causing this, and what treatments might be effective. He was generous with his time and gentle in his concern. I have complete faith in both him and Dr. White, Kelly's dentist.<br />
<br />
General consensus: my cancer is causing Kelly's jaw pain.<br />
<br />
In other words, knowing that I have a serious illness has overloaded her ability to ignore her distress, and it is coming out in clenched jaw muscles, tooth grinding, etc.<br />
Dr. Buchanan advanced many possible theories as to cause, but hands down agrees with Kelly's dentist that there is most likely no organic cause of the disorder.<br />
<br />
For now we will pursue a splint to help prevent night grinding, pain relief (against which even Vicodin seemed not to do much), massage therapy, and possibly physical therapy.<br />
<br />
We're getting an assessment this morning at a PT practice that works with people with TMJ disorders, and are looking for counseling resources. We will pursue any and everything that might offer relief.<br />
<br />
Meanwhile I'm encouraging Kelly and staff to get back into the swing of work, exercise, and activity. People on the Ranch who have struggled with this disorder report that it's a very hard pain to ignore. <br />
<br />
I hate it when we do all we can, and it isn't enough. I hate for my child to hurt. I want to slay the dragon and make her happy. <br />
<br />
For now, hugs.<br />
<br />
<br />
<br />
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com0tag:blogger.com,1999:blog-1908985835552332746.post-45836506645292331562013-01-09T08:47:00.001-06:002013-01-09T08:48:17.147-06:00PainChemo III was yesterday. I felt great, checked out great by the lab and the
doc, and reported to Spa Chemo with my friend Maria and settled
in. Fifteen minutes into the Taxol drip I started to go into shock. The
team had things under control in seconds and after all was calm, resumed the
drip at a lower rate, gave me a mild sedative, and I zonked for the rest of the
day. We left the clinic at about 4:30 and I am none the worse for wear.
<br />
<br />
Meanwhile, my poor daughter Kelly has been going through her own very rough
patch, and Mom has been very limited in her ability to help. Still, it appears Mom's help may be causing more problems than solving them.<br />
<br />
Several weeks
ago, before Christmas, Kelly developed a mouth ulcer in her right cheek area.
We treated it topically and assured her it would go away, but those things are
painful and hang around a long time so it was very hard for her. <br />
<br />
"When
will I be back to normal," she would wail ten times a day and I could only offer
vague assurances that it would go away in time.<br />
<br />
As the ulcer faded she
began to complain about "another one" somewhere in her left cheek area. Nobody
could see a thing. We peered with flashlights and probed with fingers. We
vainly kept up with salt water rinses and topical pain relievers, though we only
guessed at where to swab them.<br />
<br />
Kelly's complaints varied between crying,
"It hurts," and "It feels different."<br />
I figured out finally that "hurts" meant
what acute pain, but different meant "ache." The more I peered into her mouth, the
more I began to feel that the pain had something to do with an old crowned tooth
that has caused problems before.<br />
<br />
Off to the dentist, who said he thought
she had pain from clenching her teeth. He did an x-ray and it looked all
right. Still, the pain continued, and worsened, and anyway Kelly does not grind her teeth nor clench her jaw that I have seen. <br />
<br />
Last Friday I had Nurse Debbie
check her out and she said she believed the cheek was swollen, and pointed out
that it was flushed and red. She probed the area around the crown and got a big
reaction. She thought it might be an abcess. So off we went, along with
Sterling for comfort and distraction, to the ER.<br />
<br />
The young doctor there
concurred with Nurse Debbie after examination, and prescribed an antibiotic and
a pain reliever, along with a recommendation to visit the dentist
again.<br />
<br />
Kelly has now been living with serious pain for weeks. If she
could describe the symptoms better we might have caught it early. The mouth
ulcer preceding the current problem proved a false trail to follow--for Kelly
pain is pain. The pain of a tooth abcess is pain and the pain of a mouth
ulcer is pain. <br />
<br />
We tried in vain to describe "throb" to her in the
hospital. After listening a while she said "yes" but I could tell she had no
idea what we were talking about. I don't know how I came to associate
"throbbing pain" with the sensation it is. I have no idea how to describe it to
my daughter who is in pain and only recognizes the word "hurt."<br />
<br />
Another
dental appointment this afternoon and then hopefully a referral to the oral
surgeon. Kelly's big goal is to be "normal" by cruise time. I hope and pray it is long
before that.<br />
<br />
There's an old saying that a mother can only be as happy as
her unhappiest child, and there's truth in that. <br />
<br />
I can and do resolve
to find at least one point of joy in every day, regardless of how I feel. I
encourage Kelly to do the same, though I think the concept is lost on her. I
hope she does find that joy.<br />
<br />
I think my presence at the Ranch, weakened
though it be, creates confusion in caring for my daughter, at a time when I am
less able to fill that roll. After all, I, too, am peering into her mouth and
making pronouncements as to what I do or don't see. And I'm the Mom. And I'm a
Founder.<br />
<br />
Could that make Ranch staff feel complacent that the problem is
being addressed? Do they defer to me rather than using their own judgement
about when a Rancher needs attention? I know that Jerry's and my presence is a
complicating factor, but I don't know exactly why or in what ways. It's a puzzle.<br />
<br />
But lately, I
know that my daughter is not a happy girl, and I am not a happy
mom.<br />
<br />
We'll use this experience to learn.Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-84533559941437219882012-12-19T04:43:00.000-06:002012-12-19T04:51:13.621-06:00Life abundant, even with cancer<blockquote type="cite">
Martha took me in this morning. Jerry felt he
needed to be there but I forced him to go play golf, wrenching his arm almost
out of its socket. I convinced him by reminding him how I cherish one on one time with
my daughters, and if he came Martha would have to leave because Spa Chemo at <a href="http://www.texasoncology.com/austin-midtown.aspx">Texas Oncology </a>only allows
one visitor at a time. </blockquote>
<blockquote type="cite">
Martha has amazing empathy: when the Benadryl
kicked in through my IV line she immediately fell asleep, letting me know it was
time for my nap! I was able to report to Jerry that Martha also proved to be a
good urban food forager for lunch. So we did just fine.</blockquote>
Dr. Smith said I am in great shape but it's clear
I'm one of those who will need a white cell booster shot after each chemo. She
says it's common and nothing to worry about, just means I need to go back
tomorrow for the injection, which has its own side effects. Personally I am so
much stronger than when I went in for chemo I can't help but hope that the
effects from the chemo will be much less than they were with the first one. <br />
<br />
But
truth: you can't predict. Overall my arc was: Chemo, one great day (thank you
steroids), two miserable days, one tired day (but able to go to see <a href="http://en.wikipedia.org/wiki/Lincoln_(2012_film)">Lincoln</a> and
enjoy it), and then steadily feeling better and actually good at least part of
each subsequent day. I got two white cell injections and had one bum day but
otherwise the main symptom is fatigue, which sometimes comes on suddenly, maybe
even right after I get up and have my coffee. Then I have to rest.
Unpredictable.<br />
<br />
That said, walks with Jenny have been a terrific
boost, because she has had to go out at least six times a day and each outing is
10-15 minutes at a minimum at a fast clip. We have covered as much as 1.5 miles
on a single outing, so it's a great way to build stamina. And oddly, I have yet
to have to wave down a ride back to Benedict House during a walk with Jenny! Go
figure.<br />
<br />
Now I am going to embarrass Jerry. <br />
<br />
I'm not surprised, as this is not the first
medical crisis we have been through together, but I am amazed anew by his
understanding, tenderness, concern and care for me. As I tap away, he is
preparing a dinner of blackened salmon, wedge salad, Brussels sprouts, and
gnocchi! He is my best buddy in the journey of life. <br />
<br />
We have settled into a
wonderfully amiable stage of our relationship that endures through thick and
thin, and we've had plenty of that along the way. We laugh often and loudly, we argue
heatedly and unfairly, we get excited reading the same book and loving
it.<br />
<br />
John Paul II wrote beautifully, truthfully, and compassionately on the mystery of the gift of one's self in marriage--"self" encompassing body, mind, and soul. (Interestingly, those self-same elements with which we are bidden to love God.) <br />
<br />
We have learned much about forgiveness, not only
of others but of ourselves on this journey. Not a week goes by in which the
recitation of the general confession at Church does not apply in some way to us as a
couple, but neither does a week go by in which First Corinthinians 13:4--8 does
not equally apply.<br />
<br />
We realized
soon after we set out to build Down Home Ranch that there is a power that
mystically arises out of the vows of a married couple and out of the reality of
their union, whether those vows are to love one another even when you just don't
feel the love, or to build something together--a family, a business, a Ranch for
the fruit of that union and others like her.<br />
<br />
"A
cord with three strands will not be broken." Thank you God, for being the tie
and that third cord that has bound us together for 40 years, even when we didn't really know you. Thank you for allowing us to
see our "children and our children's children standing tall and strong as young
olive trees around our table," and to see the community of Down Home Ranch become
what we first envisioned it to be.Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-24239829824813095812012-12-13T10:28:00.002-06:002012-12-13T10:28:13.203-06:00Three moms on a Monday afternoon<br />
Monday afternoon two friends stopped by to see me and wish me well. Both are moms of daughters with Down syndrome, like me. Our daughters are 20, 28, and 38, so among the three of us we are confronting an interesting array of life issues that affect families of kids with disabilities, a topic never far from our minds or the reality of our lives.<br />
<br />
Ashley is young, and her daughter Cristina in transition from high school to adult life. <br />
<br />
Suzanne's daughter Julia has lived at the Ranch for several years and is approaching middle age (at least middle age for Down syndrome, which comes on quicker than for the rest of the population). Suzanne very recently and unexpectedly lost her husband, and she, Julia, and brother Jason are dealing with that sad reality. <br />
<br />
Kelly, of course, is my daughter who at 28 feels she has nailed the early part of adulthood and is ready to move on, hopefully with her beloved Sterling, to a place of their own.<br />
And I, of course, am in treatment for ovarian cancer.<br />
<br />
We sat in the late afternoon light coming through the windows and talked of life, our daughters, our hopes and fears--all of which are there in abundance. Suzanne brought me a <a href="http://www.amazon.com/Journey-through-Storm-Faith-Cancer/dp/1613150229">book</a> by a friend of hers that she thought would speak to me. Ashley had brought me a pyramid of Texas oranges to pump me full of vitamin C before the next chemo. <br />
<br />
Our daughters were out in their world, doing their thing, as we did ours. But our minds were, as always, preoccupied by them.<br />
<br />
We lamented our limited ability to advise our daughters, to console them in their grief, or alleviate their obsessions on their fears (Kelly is horrified by my hair falling out and no amount of explanation that "balder is not sicker" will suffice.)<br />
<br />
Life's harsher realities will not pass them by. They must face them just as we must. It is not fair, but there it is. But in truth, we have little more at our disposal than they. Our fears and tears are equal in this at least.<br />
<br />
What makes it bearable is when friends reach out to offer encouragement, faith, and understanding, despite the grief, the busy schedules, and the holiday season roaring away outside the walls of our shared concerns.<br />
<br />
<br />
<br />
<br />
<br />
<br />
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1tag:blogger.com,1999:blog-1908985835552332746.post-567963120365193672012-12-06T15:04:00.001-06:002012-12-06T15:04:17.532-06:00You Must Read This!<br />
Friends, this is the absolutely best-described first hand account of what happens to us when life hands us an infant with a significant handicap and our life changes forever. It is from Sla<a href="http://www.slate.com/articles/double_x/doublex/2012/11/andrew_solomon_s_far_from_the_tree_parents_children_and_the_search_for_identity.single.html">te Magazine</a>, and it is a wowzer.<br />
<br />
Feel free to let the author know that yes, she can look forward to many more years of those "full-bodied hugs." <br />
Judy Hortonhttp://www.blogger.com/profile/15617800618411709541noreply@blogger.com1