It's the Same Either Way

Just a few minutes ago, Grayson’s feeding pump started beeping. I turned on his bathroom light, felt for his tube and realized he had what tube feeding parents call “fed the bed”. Greeeaaat. It’s totally my fault- I forgot to unclamp the tube after I did his meds and the formula backed up and leaked through the med port (although why the stupid pump only started beeping 3 hours after this mistake I do not understand). Anyway, it’s a whole big process to unhook Grayson’s feeding tube and ferrell bag, undress him, wipe the sticky formula off his back and legs, put on a new undershirt onesie and new pajamas, rehook up the tubes, and change the sheets. And the dude stayed sound asleep throught the whole thing. 

One thing I hoped to gain from BlogHer was an idea of how to write about small, every day moments in caring for Grayson that impact me emotionally and are a part of me processing the unique parenting situations I face. The first few years of Grayson’s life, I had a lot to write about; we were always either running tests, going to “big” doctors appointments, waiting for results, or little by little discovering the shocking reality of his physical limitations. It’s not really like that anymore. We aren’t anxiously waiting  any huge diagnostic results, we’ve cut down on the number of specialists we drag Grayson to see, and life, as unstable as it is, is fairly predictable and routine. And yet, I still need to write, because sometimes the routine and predictable are the most heartbreaking. 
Back to tonight. I realized as I was undressing and redressing my sleeping son that the process- the physical challenge and effort it takes and even just the logistics of getting that task done- is exactly the same when he’s asleep as when he’s awake. There is absolutely no difference. And that is a picture of Grayson’s limitations and the reality of a body that betrays him, a body that is always asleep. Imagine dressing your preschooler every morning while he is still asleep; you have to maneuver his arms and legs through the clothing and gently pull the shirt over his head without straining his neck. He doesn’t help at all, because he’s asleep and totally unaware of what you are trying to accomplish. His limbs are stiff and contorted and you just pray you don’t break a bone in the process. Then you  pick him up, his almost 40 pounds of dead weight slumped against you, and your prayer this time is that you don’t throw out your own back. If that happens, you’re screwed. 
It doesn’t change, except he’s getting bigger and heavier. And I’m scared. What does dressing him and carrying him look like in another year? Five years? What if his prognosis is wrong and I’m dressing a teenager or adult? What does that even look like? I just don’t know. 
So many questions brought on tonight by one little annoying beeping pump. 


  1. Esperanza on July 31, 2014 at 6:01 am

    This. This is exactly what you need to write. This was so powerful, it really gives a little window into what it must be like. It's just a little window, but it's enough to see the doubt and the fear and the heartbreak. It's just enough to really understand how difficult it must be.

    Abiding with you.

  2. J o s e y on July 31, 2014 at 4:25 pm

    Phew. That is intense Elizabeth. Those worries are legit concerns, especially when there is no way to know the answer. Heartbreaking…

  3. Diane on July 31, 2014 at 5:27 pm

    I remember in Nursing School we were taught a number of techniques to move or pick up adult patients who were unable to assist. I remember being incredibly impressed watching little tiny old ladies move adult patients twice the size of themselves like they were infants. Perhaps there is a course somewhere you can take to learn how to properly transport/move/dress him and protect your spine? It is something that is taught to even Nursing Home CNA's etc. I would think the Community College or somewhere would offer a quick course that could teach you so you would not worry about caring for him in adulthood. I wish hospitals would offer courses to parents on the little tips to make life more comfortable for everyone.

  4. Amber on August 4, 2014 at 9:11 pm

    Wow, you are amazing. I'm always blown away by your strength.

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