There’s a weight like no other that exists in the world of medically complex kids. You spend your days—and sometimes nights—advocating, transporting, scheduling, and caregiving for this most precious treasure that you call son or daughter. You learn to be master juggler of all things, even if you have no athletic bone in your body. You want so much for their life to be as “normal” as possible, even though it’s often as far from normal as could be.
Then the moment comes when you’re standing in the long-awaited appointment: the one where you came in with a fresh sense of hope to discuss any remaining options left to bring more comfort and dignity to your child. But soon, your direct yet caring doctor tells you that at this time—there are no more options for your child. Inside you literally crumble, while trying your hardest to keep your outer shell pulled together. You mumble a couple of words of appreciation to him in an effort to keep your communication positive, because you know the day will come that you’ll be needing him again in the midst of a crisis. He tells you you’re doing a great job and your child looks great. You wish he only could understand what it’s taking 24/7 to pull that off and keep him out of the hospital.
No one can prepare you for what it’s like to be a witness of the continued struggle in your child, just to survive. There’s no chapter on that in the pregnancy books. There’s no guidebook for how to be a parent of the suffering. Or is there?
Recently we were hospitalized once again with our little boy. We watched as the insides of his body shut down, and we didn’t know if they would start working again. We’d been at this place already four times in the last year. Would there come a time he just couldn’t rebound? We dug down deep to find our brave, and asked our hard questions to our Palliative Care doctor. With much grace and gentleness, she supported our fears as an accurate possibility.
Source: Special Needs Parenting- Key Ministry