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.

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." 

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.

I woke up at 2:45 this morning and bundled up to take Jenny downstairs and outside to potty.  Jenny is a four-month-old King Charles Spaniel pup that Jerry brought into my life ten days ago.  If she does not steal your heart, you simply must not have one.

As I waited for Jenny to find the perfect spot to do her business, I looked up at the sky and the moon was astounding, rimmed by clouds, outshining even the urban lights of Austin.

"Wow!" I said out loud, and remembered I'd just heard a review of a book written on prayer, presumably for people unfamiliar with the traditional views on the subject.  It's called Help, Thanks, Wow: The Three Essential Prayers, by Anne Lamott. 

I realized I'd just uttered a prayer of praise, stunned by God's handiwork shining through the firmament.

I was not up at 2:45 just to take the dog out.  She can wait longer than that. 

I'm starting chemo today, and had to get up to take some pre-medication before reporting to the clinic.  A little over a month ago, I was diagnosed with ovarian cancer.  Never expected that. 

Help!

It's like a guillotine blade coming down on your life.  One day it's this way, and you're doing these things, and the next day everything has shifted, like a kaleidoscope that took a really big twist.  Normal life recedes swiftly into the past, as we day by day map out our new life.

But then things stabilize a bit and you begin picking up the threads.  Sunday we had a board meeting.  I didn't know if I could make it through the whole thing, but I did, and it felt really, really good.  For one thing, it is a huge comfort to know the Ranch is in the hands of such talented, invested people.  For another, it was great to realize my brain really is still capable of tracking complex discussions and taking notes.  My greatest mental activity for a month has been watching episodes of Restaurant Stakeout.

Our Thanksgiving week was amazing.  All the daughters and families gathered for a four-day moveable feast. We laughed and ate and watched football on tv.  I marvel at the love flowing between all these incredible people.

Thanks!

Four daughters, three sons-in-law and one son-outlaw, five grandkids, one grandson-in-law, and the Pumpkinhead, one-year-old Adam, our first great-grandchild, who provided the major entertainment for the festivities.  My cup runneth over.

Wow!
 

Hoopdedoodle

Well, didn't take long before the first thing that came to mind upon wakening in the morning was not: I have cancer.

This morning it was: I have mice.

That didn't take long.

We returned to Benedict House at the Ranch yesterday about 1:00 after several weeks in Austin.  It was an emotional homecoming, and I was fair exhausted before I managed to turn into bed last night.

I'd discovered the mouse problem in the house shortly before my diagnosis and subsequent 26-day stay in Austin and at the hospital.  I didn't figure an empty house sitting there without active rodent suppression was going to improve by itself, so I was not surprised to find lots of evidence.

Begining when I foraged for my fuzzy winter slippers upon crawling out of bed, and found pecans stored in the toe of the shoe, and all the lining ripped up to make a nest!

We pulled out the big guns.  Jerry went to town and bought about 50 traps.  I'd already laid glue traps end to end all over the pantry before I got sick.  We've found some covered with gray hair, but none with accompanying mice.

So.  Not only do I have mice, I have naked mice!

A nice man from Bug-A-Way came this morning.  He's a Rodent Infestation Consultant. We're pulling out the big guns.

Meanwhile, life at the Ranch goes on, and today is Rancher Nick's last day.  I'd volunteered to put together the scrap book of memories for him, so I got to task early in the day.  Luckily, Cathy Y, RA of Martha House, offered to help and came over bearing lots of supplies.   Together we finished the job with about 30 minutes to spare before the good-bye party.

After lunch, we assembled for the presentation, the tears, and the consolation: cake.  Sad as we are to see Nick go, we know his time here has been good for him, and good for the Ranch.  He's going to be a Yankee now, but says "maybe" he'll come back for Ranch Camp.

After lying down for a while to recover from the busy morning, I decided to hang out in the front yard for a while.  All our fall flowers are blooming, and the air is thick with tiny bees and butterflies of every description. 

Pink ribbons to welcome me home festoon the trees in our little front yard.  The sun is shining warmly through the cool air, the sky is that startling deep blue we get only this time of year, and the Ranchers are returning from their Nature Walk up the Village Road.  They visit with me and tell my my "new hair" looks great.  If they know it's a wig, they don't let on.

Michael found a little friend on his Nature Walk

My heart overflows with gratitude for everything and everybody in my life: cancer, mice, and all.  The outpouring of love, assistance, flowers, notes, cards, and visits from friends and acquaintances from a few months to 65 years has been stunning.

Most of all, I am grateful for all who have believed in and supported the building of Down Home Ranch, where Kelly and her friends support one another through life's journey, in good times and in hard ones. 

Our Ranchers have had a hard time of it lately.  We have lost two dads in the past few months, and everyone is shaken to realize even Jerry and Judy cannot go on forever.

But such is life.  We trust in God, and in His goodness as showered upon the Ranch in the best people have to offer of who they are and what they have.  It has been grace upon grace for 20 years.

What an honor, whatever happens, to have been a part of it all.

Moving forward

Somebody please tell me where October and November went? 

I checked out on 10/19 and got over the anesthetic about 36 hours ago, it seems.  The world went on, and apparently I had conversations I recall nothing of, and am delighted to hear I have agreed to a date at the opera in Houston next year!

So, since coming home it's just been hanging around getting over the Big Slice...  My Halloween surprise this year, and it looks it.

Sunday Jerry and I ventured out to church, and I sat in the pew with Jerry and listened to our magnificent choir and our terrific preacher. Only missed one Sunday in the whole ordeal!  Got seasick in the car for the first time but it quickly passed.  Later in the day my friend Maria came over and took me to get my shingles vaccination, having convinced me that among my other woes, I really don't need that one.

Then today Kyle came over and we caught up on our life adventures, went out for a bit at Cover3 in the 65 degree weather with the warm sunshine on my shoulder.  Oy, I feel a country song coming on...

Afterward I had Kyle take me to get a buzz cut on the hair.  I'll see Kelly tomorrow, or--more to the point, Kelly will see me tomorrow--so I promptly took a picture of myself and put it on Facebook, hoping to lessen the shock of seeing me for the first time.  We've broached the "c" word with Kelly now, and she knows I'm going to have chemo and will lose my hair.  Jerry feels I went a bit extreme, but I feel it will lessen the shock when it starts falling out for serious.

We've encouraged Kelly to go ahead and have Thanksgiving with promised-one Sterling and his family this year.  Sterling's folks moved to Galveston several years ago just in time for Ike to wipe their home and his step-dad's job off the map.  Since then they've been regrouping and finally have built their dream house in Elgin, after a long stretch in the RV.  It's a very exciting Thanksgiving for them, with all the grandbabies and family. 

Sterling and his family are a vital part of Kelly's network of support, and again, we are actively taking advantage of this episode in our lives to strengthen it.  Kelly has known the family for as long as she can remember.  She  loves them and they love her.  They are our older daughters' ages and will be here when we are gone.

I can hardly wait to start hugging all my buddies at the Ranch.  We've had a virus going around and I've stayed away as long as I can to avoid it.  But now...it's time. 

Return to the land of the living...

Wow, life as we know it can disappear pretty darned fast on a body!

Jerry has chronicled the day-by-day since I was diagnosed on 10/19.  And yes, I know I said this would not be a cancer blog, but a blog about being a parent (that would be me) of a dependent adult with disabilities (that would be daughter Kelly, aged 28 with Down syndrome) approaching the later years.

I said in my last blog that I saw this part of the journey as being an appropriate time to begin in essence transferring some of Kelly's dependency to her sisters, nieces and nephews, her boyfriend, and the community of Down Home Ranch.

I am also thinking that it is time to begin actively enlisting the churches our Ranchers attend in this phase of their lives.  Not all our daughters are active in a church, or believers in the strict sense of the word, but all were moved and comforted by the anointing for healing ceremony Fr. Larry conducted following Mass the day before surgery.  We need to take the lead on ensuring that when our Ranchers have life-altering events happen to them that their church family is there in a meaningful way for them.

We've talked all this over with older (we call them the "grandsisters" since they are 16, 20, 2nd 24 years older than Kelly!) sisters Janis, Martha, and Carolyn.  We carefully arranged her first post-surgery visit for the Tuesday afternoon on the day following the operation.  Alas, she and Sterling arrived just at the same time as the beginning of a violent attack of nausea and vomiting.  This was not something I could fake my way through, try though I might.

And so I suspect things will be bumpy all the way through. Kelly appears to be handling things well, all things considered.  As we approach the chemo stage and the changes that will occasion, we continue to plan to help Kelly adapt.  Tomorrow I will work on a social story about what will be happening over the next few weeks.

Sister Janis will come with us and Kelly to the first post-surgery conference with Dr. Smith, to meet the woman who is caring for her mom, and we will all be on the same team.  We'll take her to see where my chemo treatments will be so she will have an accurate picture.

Like most people, Kelly hates uncertaintly, and sadly, we can make no guarantees except this: Whatever happens, however things turn out, she will be loved, and supported, and cared for.  We will pay her the respect due a full, functioning member of this family, handicap or no.

My youngest daughter is not less than anyone.  I have witnessed the same struggle to mature, to be courageous, to grow in Kelly as in each of our amazing other daughters.  It has been an honor to be her mom, and if I have my way, will continue to be for years to come.

                                                                          ***

UPDATE: Jerry originally posted on CaringBridge what we first believed was my diagnosis, ovarian cancer.  It actually turned out to be ovarian/endometrial cancer, with an excellent prognosis for cure.  I have been stunned by the outpouring of love, cards, gorgeous flowers, visits, phone calls, emails, etc. over the past week.  I have reconnected with friends from 40 years ago.  It is not hard at all to see the blessing in these hard times.

Thank you.