Monday, February 18, 2013


"That's how our life is, so we should probably start living it that way!" I replied defiantly to my husband. I was the driving the familiar route to the Y to swim with the whole family.
I had suggested that he take the two typical kids on a spring break trip and he balked at the idea that we wouldn't go as a whole family. How? I can't see driving twenty plus hours to Florida, let alone fly there. The last time we took Dermot on a plane we were very lucky to get first class and that his wheelchair wasn't trashed in the baggage compartment. On the way home we were in trouble. Dermot needs full support while sitting, we bring his large carseat and after that is installed in the narrow airplane seat, there's not even an inch of space left for his long, six year old legs. After we returned home from that trip I knew it would be a long time before we would travel again.
So I listen to your stories of family vacations to Steamboat or Orlando and I envy you. I envy your lifestyle that affords you the luxury of getting on a plane with your whole family and only worrying about keeping the kids occupied with iPads and coloring books. Not once do you worry if you forgot any meds or the extra feeding tube. Will the hotel have received the special delivery of formula? Does the airline have two first class seats (at no extra charge) to fit a mother and her son with low muscle tone and a giant car seat.
I sat with a sleeping Dermot in the family changing room, frustrated and defeated. There's three locker rooms at the YMCA, I tried them all and ended up here. With no proper table in which to change Dermot into this swimming apparel,  a back spasm was most certainly in my future. I could kneel on the cold wet concrete floor or hunch over and let my lower back complain about it to me now, as it is doing. The ibuprofen is trying to quiet the complaints, but I've about reached my limit.
Dermot weighs nearly 50 lbs. 50 pounds, up and down nearly seventeen times a day. I weigh 130 and am 5'4" tall. I fear that my body is failing. I fear that I may need to rely on others to lift and carry my baby boy. I'm angry about it.
Most times I'm okay with our daily life and the routines that complete it. But the back pain has been getting to me this week. An inordinate amount of ibuprofen hasn't made it go away. The elaborate foam roller and massage ball I bought yesterday will only partially relieve the syptoms. I know there's a transition time coming that means I won't lift and carry my son myself.
Logistics will get more challenging. Trips with the family will be segmented. Swimming at the Y becomes a pain in the ass...

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Sue Sullivan is a mother with three beautiful boys. Two are typically developing and one has a rare mitochondrial disease. He is why I write. I'm on a 20+ year quest to be happy, joyous and free.
Sue blogs at


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