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Posts tagged ‘atcp’

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. (  I never thought I’d run in a race again.

Today is the Towamencin Township Turkey Trot. (  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  ( 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.(  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.

Shared Grief

Yesterday a family who has a son with A-T ( found out that their infant daughter also has it.  Many of us have played genetic roulette without even knowing it.  Genes mutate, and there is no way we can know all the mutations we carry.  In the case of A-T, all it takes is finding that one other person who carries the recessive gene, and you have a 25% chance with every pregnancy that your child will have it.  Most children aren’t diagnosed until they begin to walk, or start having frequent infections.  My son was almost 3 when he was diagnosed.  He had an older brother (2 yrs older) and a sister about 9 months old when we found out.  There are families who have three or four children with this condition.  Imagine sitting in a physician’s office, often far from home, and being told your child will be in a wheelchair by the age of 10, and most likely die in his/her teens. (more often now the kids live into their twenties)

Life-shattering.  That’s what it was for me.  Totally unexpected with few, if any, upbeat reassurances from the specialists.  This family is starting a journey they never thought they would be on.  All of us who have special kids, regardless of diagnosis, have to learn a new vocabulary, a new road map (is Grandma’s house accessible or inaccessible for wheelchairs, is the bathroom accessible?) and summon up a cheerful persona with great strength to get your child(ren) through all the procedures, needle sticks, machines, medicines, and losses.  You have entered a strange, new world that you and your child will have to traverse together.  Those of us who have gone through heart-stopping news like this, whether it is our own diagnosis or someone we love, we will share in your grief as we all walk this strange new path together.  Namaste’, Blessings and Prayers to all who are living with the grief of a limitation in your own life, or the life of someone you know and love.

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