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Posts tagged ‘rare genetic disorders’

Providing Meaning

My son was so tired tonight, his spirit so exhausted.  How can I possibly seek respite from caring for him when I have no way of knowing how many more days we have together?  At 15 he has to tolerate getting help from his mother with showering, eating, getting dressed, and so many other things he would rather do himself.  In order to make sure he is cognitively challenged (because he is much closer to 15 in his ability to think than people realize) we had to find a school that is an hour away.  Two precious hours of his life are spent on a bus everyday so he can get the education he needs and deserves.  Mainstreaming, at least where we are, was never a viable option once he hit middle school.  He was put into a special education class with a mixture of children whose needs were so different from his that he might as well have been an alien from outer space.  That’s  how little his teacher knew about how to teach him.  The name “special education” is completely inappropriate for the variety of needs children bring to the classroom these days.  I don’t blame the teachers.  I’m sure they do the best they can with the resources they have.  When you have a child with an “orphan” disease or a “zebra” as they are called in medical parlance, you have to do a lot of research on your own.  Let me repeat that, A LOT OF RESEARCH, as a parent, not a scientist.  We who don’t see our sons and daughters as “interesting cases” but as living, breathing beings who experience frustration, depression, joy.   That task belongs to parents, and you do your best to become an expert about all aspects of your child’s condition.  Even when reading every word crushes your hopes, or elevates them to unbelievable heights, it is your CHILD that you are reading about, not some lab subject.

Time continues its forward movement, and I’ve watched my child learn to walk, talk, and feed himself   Then I’ve watched in agony as these skills were slowly stolen away.   I can’t count the naps, nights, and post-surgical sleeps  when I’ve held him as I tried to hold my body still, wrenching sobs hitting like earthquakes, and tears runnng like twin rivers from my aching eyes.  There is no pain for a parent like the pain of watching your child suffer.

As any good parent would, (not perfect, good) you try to do as much as you can to make your child’s life a happy one.  Your child hasn’t changed.  Their future may have, and their life expectancy may have, but they have not.  You love them just as much, if not more, knowing that the challenges they face will be so much harder than the challenges of “ordinary” children.  As your child grows and becomes aware of all the ways that their lives will be different, how do you give them “meaning” to hold onto?  Church provides that for many families, but if your faith does not include church and a specific belief system how do you help your child see the worth of living?  As he or she faces the realities that come with his/her condition, how do you help him to see that his life still has rich opportunities?  How do you explain that missing the prom, and the driving test are not the only testaments of how much of a man (or woman) he is becoming?

I want to infuse meaning into my son’s life like an intravenous line infuses fluids.  How do I accomplish that?  We joke about the “butt” print that is in the leather seat where he sits most of the day when he’s home, watching T.V. and playing video games.  These things do not really challenge him, they merely make the passage of time flow more easily.    I want to take him outside and show him rocks, twigs, branches from trees that have fallen…some  connection with nature.  Maybe that’s idiotic, he won’t be able to do theses things once he’s graduated from school.  He doesn’t even want to.  His art though, that tells me something different about his heart and soul.

His art brings meaning to his life in a way I never could.  It captivates me, transports me,  lifts and spins me in directions I never knew existed.  It is his own world, where he imports his OWN meaning.  It gives him something nothing else does, because it is his own.

I don’t know how to infuse meaning into my son’s life.  I need to trust that his bright, brilliant spirit will do that on its own.  I may be able to provide opportunities here and there, but the day upon day hours are his, not mine, to spin into whatever shape and intricacy he chooses.  To imagine anything else is an insult to his intelligence, and a grandiose  vision of my own.  My sweet Daniel, your life is your own, and it is YOU who nust decide what brings you closest to spirit.  May God bless and keep you on your journey, and slap back my hands when they try to intrude.  You are a perfect creation,  and I bow to the effervescent unfolding of you.  Namaste’ my love, your life is its own gorgeous and unique unfolding.   Thanks be to all that is!  May the light of love always guide you, and keep you safely in it’s arms.

Losing battles

Confronting the reality of my son’s condition as fatal is a battle that has taken me to the brink of insanity over and over again.  Sometimes the grief is so heavy that I don’t think I can bear it another second.  Then Dan will cough or crack one of his jokes that make me howl with laughter and I’m back in the moment with him.  As difficult as it is for me, I realize it’s even harder for Daniel, and that helps me set my own grief aside.

The summer before Daniel started third grade, we had to confront the reality that his days of walking independently were over.  My husband, Kevin, had devised a “punishment” for rude behavior, like burping as loud as you possibly could at the dinner table – a given with boys.  The rule was that if you burped, you had to run out to the edge of our yard and back.  We had watched Dan run out in the field with his brother and sister (because inevitably one child burping leads to another, like yawning does) wobbly but holding his own.  They would shout with laughter and fly across the grass, damp with evening dew, Kevin yelling “faster, faster.”  Dan had started to get unstable, and couldn’t make his legs work the way he wanted them to.  He fell if there was nothing to hold onto, so he started having to stay at the table with us, and when school started he had to use a wheelchair.  He would break our hearts, saying “I wish I could still walk” in a tremulous voice when his siblings would run out into the yard, and I would scoop him up on my back and try to be his legs.  We knew it wasn’t the same, but he would laugh and seem like a child again for a few minutes.

This summer it was the battle to keep him eating that we lost.  It started out as several bouts of pneumonia, close together, and a week as an inpatient on the pediatric rehab unit.  He hadn’t been gaining weight, had stayed below 60 lbs. for close to two years.  We had talked about having a feeding tube put in his stomach to supplement his meager appetite, complicated by tremors in his hands that made his food fly off the fork.  He’d been great about letting me help him eat, but the energy it required just to chew and swallow took so much out of him there was no way he could make any gains in pounds.  We decided to get as many tests out of the way as we could while he was in the hospital, so he had a gastric emptying test and a swallow test.  His gastric emptying test showed delays and although his swallow was found to be completely “normal” according to the speech therapist, he had a problem with something called his vallecula.  Somehow, he had lost sensation in his vallecula, so if food or liquid (including saliva or mucous) pooled there he didn’t feel it and it would slide right down his trachea and into his lungs.  After the test was over, an occupational therapist took us to a private room and told us (including Daniel) that while she was being conservative, she had to recommend that he not receive anything by mouth from that day forward.  I was in shock.  This possibility had never entered my mind.  Dan was exhausted by this time, and it was hard to know how much he took in.  I had a sense of deja vu, as if I was back in the examining room at Johns-Hopkins the day he had been officially diagnosed with A-T.  The doctor’s had to keep repeating that Dan had it.  My sweet, healthy -looking 2 & 1/2 year-old son had a fatal genetic condition that no one in either  family (mine or my ex-husband’s) had ever heard of or been diagnosed with.  It was true though, no matter how much I didn’t want it to be.  Something short-circuited in my nervous system that day, the result of an adrenaline overload or an implosion of emotion that couldn’t be categorized. (it was eventually diagnosed as fibromyalgia and panic attacks, but that’s another story)

Back in the little room, sitting in child-sized chairs and holding Daniel so he could rest, the O.T. asked if we had any questions.  My mind had gone numb, and I honestly don’t remember if I asked anything or not.  By the end of the week, Daniel had a tube in his nose that went down into his jejunum and two weeks after that he had surgery to have a permanent j-tube put in his abdomen.  It felt like he was being tortured, and I was forced to be a participant.

This has been an unbelievably difficult adjustment.  Food is a huge part of life, and nourishing my children nutritionally is an integral part of being their mother.  Every aspect of eating from shopping for food, (Oh, Dan would LOVE that) to making school lunches, (Al and Annie like ham, Dan likes chicken) to planning dinner and setting the table (we need five place settings – oh, right we only need four) reminds me that things have changed for Dan, for all of us.  He keeps asking “what will I do at school during lunch?” and I don’t really know how to answer.  We still sit together as a family for dinner, and I suppose the silver lining is that Dan never really enjoyed eating that much anyway.  Most of the time it was more of a chore for him than anything.  He’s also finally gaining weight, which is a blessing, because he had started looking skeletal and we worried that any illness could take him from us because he had no reserves to fight it off with.  As with much of what has happened, it’s not simply win or lose, it’s compromise, letting go, and releasing expectations whether catastrophic or miraculous.  It’s doing my best to love Dan without limit every moment we have, and surround him with others who will do the same when we are apart.  It’s also harder than I ever could have imagined almost a decade ago when the doctor’s diagnosed his condition, and added a realization of what is really precious about life.  Whether that counts as winning or losing, I don’t know.  The analogy of life as a series of battles was already worn and tired before I typed it into the subject box on this post several days ago.  That’s reason enough to stop thinking about things that way.

Writer envy

I spend almost no time at all on my writing.  I read about writing incessantly, I read in my genre voraciously, and visit my favorite author’s websites obsessively.  All time that should be spent – wait for it – WRITING!!!  I learned this week that Nora Roberts’ rule for writing is “butt in chair” (or something close to that).  It’s a great rule and one I’d like to say I follow.  The only problem I have with it is that when my butt is in my chair, I’m looking at a computer screen.  My computer happens to be connected to the internet, which is a good thing because otherwise you wouldn’t be reading my blog!  It can also add to the distractions that keep me from writing, which are infinite on the ‘net without even starting on those in my home life.  So, what’s a budding, non-published author to do?  Make Nora’s motto my own, “butt in chair, browser in your blog (or word processing software)!”  Thousands of  ideas are running around in my brain, and as they come up I tend to ignore them because I let the editor in my brain censor me or the real life crises that tend to make up my day take over.  There has to be a way to transcend this, because two writers I admire started their careers because:  a.) one was up in the night with nothing left in the house to read and started to write something she would want to read, and b.) one was stuck in a blizzard with no way out of her house, and small children to entertain.

It would be easy to say I have more challenges than most because my now 11-yr-old son Daniel was diagnosed with a fatal, neuro-degenerative disorder when he was 2 & 1/2 years old.  That pretty much blew my life to hell for the next decade.   He’s had more hospitalizations than I can count, and challenged me as a mother in ways I would never have thought I could survive.  As exhausting as it gets, all he has to do is smile and every effort I make seems pitifully small in comparison to what he lives with on a daily basis.

Yes, I envy published authors and escape into their books as often as I possibly can.  It’s easier to lose myself in their writing than it is in my own – so far.  As Daniel has shown me over and over again, each day is a new opportunity and you never know what life will offer you unless you choose to live it.

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