*Written at Methodist Children's Hospital after Dylan's feeding tube surgery.
Today, I'm grateful for modern medicine, that it will allow Dylan's quality of life to be better by sparing him the exertion of sucking and swallowing his nutrition from bottles. His life will be that much nicer through spoonfuls of ice cream and mashed potatoes, and through eating at the table with his mommy, daddy and brother.
Today we no longer worry that he's not getting enough calories.
Today, I'm grateful that we had no surprises during the night--no drops in oxygen levels, fevers, infections or other issues.
Today, there is no more forgetting that we have an SMA child--no pretending that our lives fit the typical definition of "normal." We are solidly, undeniably on a path that doctors call the "disease process."
Today, I feel the weight of learning how to use the tube--how to feed, administer meds, and what to do if it comes out.
Today I feel an even greater responsibility toward Dylan than ever.
Today I am eager to start slow feedings, because it will make Dylan happy, and it is one step closer to going home.
Today I thank the family and friends who prayed, texted, called and walked with us through the last 24 hours.
Today I miss seeing Colin in the morning, and I miss my bed.
Today my heart is lightened by the return of Dylan's gummy grin, feet flapping and babbling through the morphine fog.
So glad to be able to be a part of your journey, even in this small way, T. Thank you for writing it out, thank you for being vulnerable and honest. Praying and loving you all from here.
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