Running for Dan

I’ve been running since August.  I’ve always loved running, but haven’t been able to do it consistently since I had back surgery in my 20’s.  Fibromyalgia pain on top of that made running seem impossible.  My last race was the Hospital Hill 10k/Half-Marathon in 1987. (www.hospitalhillrun.com)  I never thought I’d run in a race again.

Today is the Towamencin Township Turkey Trot. (www.towamencin.org/events.html)  I signed up for it in October after running for a couple of months.  I’m nervous and a little scared.  Despite that, I will run in the race.  I am not runniing for a specific time or to win anything.  I am running because I love it, but also because my son Daniel can’t.  Dan has ataxia-telangiectasia  (http://www.atcp.org) a rare, genetic, neurodegenerative disease.  Dan hasn’t run or walked in years.  He has become fatalistic of late, saying things like “I’m never going to get better” or “I just want a normal life.”  I will carry the pain of that as I run today.

I’m not a good fundraiser.  I don’t like asking people for money, even when I know it is for a good cause.  I didn’t set-up a fundraising account because I was afraid something would happen and I wouldn’t come through.  That didn’t happen though, so I will run today, for Dan and for all kids with A-T, in the hope that a treatment will be found.

I could not have done this without our Weimaraner Odie.  He will not be able to run with me today, but his energy and sweet spirit have kept me running on many days when I faltered.  We adopted Odie from Tri-State Weimaraner Rescue.(www.tristateweimrescue.org).  I am forever thankful to them for allowing us to help abandoned Weimaraners by volunteering and for Odie.

Time to go run.  Wish me luck and thanks for reading.

Diagnosis

Steps falter, grief hangs around my neck.

“Run for us” the doctor’s say.

Wobbling, almost falling, he runs.

They are kind.

“Are you sure? Are you sure? Are you sure?”

“Yes,” “Yes.” “Yes.”

The doctor, holding a tiny giraffe, watches his eyes intently.

Click, Click, Click

it stands, it falls, it stands, it falls.

My son smiles as his eyes, staggering, follow its crooked path.

Tired, he rests against me,

my useless hands twining his soft hair in the cold, blue light.

 

The Write Life

The one thing I’ve done consistently throughout my life is write.  It has always been a source of pleasure as well as giving me a sense of accomplishment greater than anything else I’ve done.  There are formulas you can follow that will  insure you some measure of financial success as a writer, but most successful writers don’t follow any one else’s rules.  Creativity can be courted, pursued, even seduced but it cannot be lashed to a wagon to  transport you reliably through your journey in life.  Neither can it be reduced to a set of calculations that when worked correctly give you a great novel.  Writing is art, and like any art form, it is capricious, elusive, and maddening.

I’ve gone through orientation to a new job the past two weeks.  Starting today, I am supposed to be putting in another five days of learning how to do it correctly.  As any of you who have read my blog posts know, my life is complicated to say the least.  Constant vigilance is required to make sure my son with Ataxia-Telangiectasia (www.atcp.org) stays healthy, and even then we cannot completely protect his lungs.  We have to constantly weigh quality of life against quantity of life, and I honestly don’t know how to work that out to ensure his longevity.  He’s 15-years-old.  Can you imagine telling a young man of that age, “Honey, I’m sorry but if you want to live as long as possible, you have to stop eating and drinking.  Oh, and even then I can’t guarantee how many extra days or weeks that will give you before this condition you have takes your life.”  Of course you could find other ways to put it, and I’ll admit to wanting to do that at times, but how can I selfishly put my wish to have him here with me above his desire to be as “normal” as possible?  He gets the most time to “hang-out” with his friends at lunch.  Yes, he could sit there with his pals and not eat, but he likes food and sharing that with others is basic to most human lives.  Even his pulmonologist doesn’t suggest taking that away from him.

My husband is heroic in taking over for me when I’m at work, but he has limits (as we all do).  I find it a cruel irony that health insurance would cover having a nurse come in to care for our son, but won’t pay me (a licensed RN, with a Bachelor’s Degree in Nursing) to do the same thing.  I cannot find a nursing job that fits with my son’s hours so that I can work enough to provide health insurance for our family, and take care of him as well.  All of this is secondary to the fact that I’d rather be writing.  I wonder how many authors would have been able to succeed financially without a working spouse (regardless of gender) or the good fortune to live in a country that provides health insurance to its’ citizens as a basic human right?

I wish that our President had skipped the “Obama-care” and gone right to a single payer system.  I appreciate the benefits he’s been able to add, but having a single payer system would eliminate many of the issues that are coming up now, like employers cutting hours or adding surcharges to avoid paying for their employees to have health insurance.  I don’t know what the answer is in our situation.  All I know is that I can’t provide the best care to others when I’m constantly worrying about my husband and children the whole time I’m at work.  Especially since I’d really rather be writing.  I would love to hear how other writer’s and/or parents of “special children” have been able to work this out.

Namaste’.

 

New day, new job

Today I start work for the first time outside our home in two years.  I was up until 1:00, up again several times because of pain, and am now  hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation.  A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia.  I wouldn’t be up so early, because he’d get himself ready for school.  He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills.  He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory.  Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now.  Instead, every moment he spends awake takes more energy than I can imagine.  He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much.  Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with.  Kids like him.

In addition, he’s been coughing for weeks now.  His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is.  I’ll spend the day worrying about all of my kids, but especially him.  The bright spot was a gift I was able to give him last night.  When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.”  “No honey,” I replied, “You will always be my first and most important person to care for.”  I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that.  I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time.  His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night.  This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure.  They didn’t complain though, not one of his family.  Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him.  They had another characteristic that helped them.  A deep, enduring faith in God.  It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on.  I pray with all my heart that I can find just a little of that faith myself today.  Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee.  A LOT of coffee.  Namaste’, and may God Bless all of us on this spiritual journey in our human forms.

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.