I’m Grateful for the Opportunity to Be Grateful
I could very easily have been one of the many women who have a child on their hip and an angel in their hearts.
Jackson was born with issues with nearly every body system, from small facial nerves to low muscle tone, to a hand deformity, to a heart defect, to kidney disease; nothing worked perfectly.
Miraculously, wonderfully, thankfully, he is here. He is alive. He breathes. He smiles. He laughs. He cries.
And, I am grateful for the opportunity to be grateful.
I spent a lot of time during his three-month hospital stay crying over all of the problems he faced. I would try to stifle my tears at night when I would stay in his room, fearing his nurses would hear me and worry. I would bury my face into my pillow as the tears pooled around me, grieving for the image of the perfectly healthy newborn I had envisioned for nine months.
Friends, other mothers of special needs babies, told me it was good, and that I needed to grieve for the loss of my expectations so I could move on and accept our new normal. Jackson's version of normal. Our family’s new version of normal.
But, it felt wrong, too. There were moms and dads all around me in the NICU receiving worse news about their tiny bundles than we were. News that included phrases like, “Did all we could,” and “It’s only a matter of time.”
They weren’t telling us that. They were telling us that his eye may never blink due to a one-sided facial nerve paralysis, or that he might never develop the ability to eat without aspirating, and would, therefore, need a feeding tube. They were telling us that, while the potential for death was still there, his heart surgery was something that the surgeons have done successfully many, many times.
They were telling us we would take our baby boy home, despite the seemingly-never-ending hospital stay.
And, despite our grief at what he was going through, and the wires that prevented us from doing much more than very carefully cradling him, we held on to the vision of our family at home, complete. We would make it.
And, we did. We’re here. He’s here. He’s here watching, mesmerized, as his 3-year-old sister dances and twirls in front of him, and he is marveling at how different the world looks from the first three months of his life. There’s a lot less white in our house than there was at the hospital, and no 4 a.m. vital checks by random nurses.
While everyone would have preferred to not go through this past summer, I would do it a thousand times over if it meant keeping my little boy with me. Because, if one tiny, extra thing had gone wrong in the development of his heart, or his other, healthy kidney, he could not be here. His name could be added to the list of loved ones we remember at our prayer on Thanksgiving. I would be turning into my husband, tears falling as his name lingered on the lips of my family members.
Instead, my relatives will be fighting over who gets to hold him, and I will be reminding them to keep his shirt pulled down, because he loves to get a good grasp on his button and come very close to yanking it out. And, I’ll be grateful that I am allowed to worry about things like that.
We are here. He’s here. And, everything is absolutely perfect.