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.
I came away from our follow-up appointment with a broken and discouraged heart, and spent some time trying to make sense of the circumstances around me. It all felt too thick and hard to accept. But then a dear friend reminded me that when we come to a place where we realize we can’t fix our child, we realize that we were given the privilege to be with our child, to be part of his life. As much as I want to be, I know I’m not the author of his story.
I spent some time in my grieving to think about the reality of a broken body. And soon my thoughts went to someone else who willingly allowed His body to be broken for us. He had the perfect body, yet allowed it to be destroyed so that we might have life. That kind of love is so hard to fathom. The bodies we have on this earth are only for awhile. What we do with them matters. This isn’t the end of the story.
This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers and sisters. 1 John 3:16
For today, we still have our little boy. He is treasured, loved and adored. His smile breaks forth on even his hardest of days. So for as many days as we have together, I want to never forget that I am not alone. There is Someone who understands so deeply this weight I carry. My son will never be a burden. He is one of the greatest blessings I have ever experienced in this life.
Shelly Roberts and her husband have eight children: three biological and five adopted. The youngest three adopted children have significant disabilities. Follow Shelly on Facebook, or on her website Reaching Hearts with Hope.
