Yesterday 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.
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.
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.
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:
Tony, Tony, turn around!
Something's lost and must be found!
Then I shrugged my shoulders, said, Oh well, and walked into the bedroom.
Hmm, maybe they fell off the nighstand and under the bed?
I got to my knees and peered under the bed. Oh, well, 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.
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.
Thank you St. Anthony! I whooped, put the glasses on my nose, the dog in her crate, and headed for my appointment.
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. A double whammy!
How does it work? It does work! I know it works! I marveled.
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.
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.
I seem to recall someone saying that we needed to approach our faith as a little child anyway,
Wednesday, January 16, 2013
Last 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.
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.
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.
At the same time she is somewhat phobic about medical procedures, which is another reason she denies anything is wrong.
Yet she is in such obvious distress that all of us at the Ranch are wringing our hands.
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."
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."
Well, normal we understand at least.
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?
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.
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.
"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.
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.
General consensus: my cancer is causing Kelly's jaw pain.
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.
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.
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.
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.
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.
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.
For now, hugs.
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.
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.
At the same time she is somewhat phobic about medical procedures, which is another reason she denies anything is wrong.
Yet she is in such obvious distress that all of us at the Ranch are wringing our hands.
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."
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."
Well, normal we understand at least.
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?
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.
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.
"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.
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.
General consensus: my cancer is causing Kelly's jaw pain.
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.
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.
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.
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.
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.
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.
For now, hugs.
Wednesday, January 9, 2013
Pain
Chemo 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.
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.
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.
"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.
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.
Kelly's complaints varied between crying, "It hurts," and "It feels different."
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.
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.
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.
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.
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.
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."
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.
There's an old saying that a mother can only be as happy as her unhappiest child, and there's truth in that.
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.
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.
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.
But lately, I know that my daughter is not a happy girl, and I am not a happy mom.
We'll use this experience to learn.
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.
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.
"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.
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.
Kelly's complaints varied between crying, "It hurts," and "It feels different."
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.
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.
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.
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.
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.
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."
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.
There's an old saying that a mother can only be as happy as her unhappiest child, and there's truth in that.
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.
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.
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.
But lately, I know that my daughter is not a happy girl, and I am not a happy mom.
We'll use this experience to learn.
Wednesday, December 19, 2012
Life abundant, even with cancer
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 Texas Oncology only allows one visitor at a time.
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.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.
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 Lincoln 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.
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.
Now I am going to embarrass Jerry.
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.
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.
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.)
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.
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.
"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.
Thursday, December 13, 2012
Three moms on a Monday afternoon
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.
Ashley is young, and her daughter Cristina in transition from high school to adult life.
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.
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.
And I, of course, am in treatment for ovarian cancer.
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 book 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.
Our daughters were out in their world, doing their thing, as we did ours. But our minds were, as always, preoccupied by them.
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.)
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.
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.
Thursday, December 6, 2012
You Must Read This!
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 Slate Magazine, and it is a wowzer.
Feel free to let the author know that yes, she can look forward to many more years of those "full-bodied hugs."
Tuesday, December 4, 2012
5:00 PM on a Tuesday
I decided to take Jenny the pup outside for a little stroll as the Ranchers were leaving work at 5:00. Neighbor Tom, Isaiah House RA, was in the front yard ready to greet his guys when they arrived. We chatted for only a few minutes and then here came the onslaught of adult trikes and bicycles hurtling down the Village road.
"Woo-hoo!" Kyle yelled as he bore down upon us. Tom H. and Sterling weren't far behind. We talked about this and that and Jenny and I proceeded up the trail.
I saw the Timbercrest ladies loading up to return to their home in Taylor, and went over to say goodbye. Terry brought me up to date on her mom's health, and I headed back on down the road.
Passing Gabriel House, Mark came jogging out the front door and onto the road. "Hi, Judy," he called as he sped on by.
I came to Martha House just in time to see six spiffed up gals coming out of the house dressed up to go to dinner at the Olive Garden in Round Rock to celebrate Alaina's birthday. Nothing like dinner at Olive Garden to ensure that they move out of their work clothes quickly into something more presentable!
Passing Barnabas, Zach moseyed out to say hello and give Jenny a scratch. Andrew proudly showed me the flowers blooming in his tiny garden.
Rounding the bend toward home, Mark passed me again as I saw the Isaiah House guys already coming out to practice for their next flag football competition.
Though it was only about 5:20 or so, the sun was already low, and the Village lights blinked on. Jenny did her business after attacking and defeating a few windblown leaves, and we came in the house to finish making supper--a delicious smelling pot roast from the first beef we'd raised from our Angus-Wagyu herd.
And Jenny loved the bone.
"Woo-hoo!" Kyle yelled as he bore down upon us. Tom H. and Sterling weren't far behind. We talked about this and that and Jenny and I proceeded up the trail.
I saw the Timbercrest ladies loading up to return to their home in Taylor, and went over to say goodbye. Terry brought me up to date on her mom's health, and I headed back on down the road.
Passing Gabriel House, Mark came jogging out the front door and onto the road. "Hi, Judy," he called as he sped on by.
I came to Martha House just in time to see six spiffed up gals coming out of the house dressed up to go to dinner at the Olive Garden in Round Rock to celebrate Alaina's birthday. Nothing like dinner at Olive Garden to ensure that they move out of their work clothes quickly into something more presentable!
Passing Barnabas, Zach moseyed out to say hello and give Jenny a scratch. Andrew proudly showed me the flowers blooming in his tiny garden.
Rounding the bend toward home, Mark passed me again as I saw the Isaiah House guys already coming out to practice for their next flag football competition.
Though it was only about 5:20 or so, the sun was already low, and the Village lights blinked on. Jenny did her business after attacking and defeating a few windblown leaves, and we came in the house to finish making supper--a delicious smelling pot roast from the first beef we'd raised from our Angus-Wagyu herd.
And Jenny loved the bone.
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