What I Should Have Told Myself When Doctors Said My Son May Have a Low Quality of Life
I’m standing in an all-too familiar room, but the sharp smells and mechanical sounds are far from comforting. Everywhere I look, I see computer monitors and isolettes, machines and various cords coming from them. I’ve found myself back in the NICU where my son stayed for the three weeks following his traumatic entrance into the world at 41 weeks old.
I zero in on a grim scene taking place in the back corner of the room, and as I get closer, I realize I’ve gone back almost 15 months to the exact moment we received the news of our newborn’s first diagnosis. Our son is laying on his open Giraffe Warmer incubator, wrapped in blankets with countless cords coming out at various places. One of them is administering so much medication into his tiny, brand-new body that he’s unconscious. I see myself standing on one side of his bed, my husband on the other. Each of our mothers stands by our sides, while the neurologist and nurse stand at the end. They’ve closed the doors to this room and we’re alone for privacy. I remember snippets of what the doctor is about to say next…
“hypoxic ischemic encephalopathy” … “damage is too great” … “surgery will not fix this” … “no quality of life” … “so sorry”
I watch as my own face mirrors my husband’s and contorts into a mixture of shock, disbelief and utter terror. We’ve just been told that because of the damage our son’s brain received from lack of oxygen during labor, he’ll likely not survive outside of the NICU. And if he does happen to make it, he will not have a life worth living. The next moment I remember just as vividly. My husband and I are about to rush from the room to break down in one another’s arms and privately mourn the life we’ve been told our son will never have.
Then, the scene pauses, and future me voices what I’ve been bursting to say this entire time:
“You don’t know it now, but you are still the parents of that beautiful little boy there! He is 15 months old and every bit of your world revolves around him. You will bring him home for the first time soon, and it will be a very scary thing. But you’ll quickly develop a routine with him and dive into a world of specialist and therapy appointments, medications, and you will learn so many medical terms you’ll think you should have a degree in nursing. You will gather a large team of medical professionals for him, all working together to make sure he has nothing but the best care. Children’s Hospital will become your second home, and most of the staff will know him by first name. The support system you will have is enormous. It’ll be comprised of family, friends and people you’ve never even met, all of whom will be full of love for your baby boy.
Don’t feel guilty when he refuses to take a bottle all of a sudden. Cerebral palsy does things to his body that he cannot control. You have not failed as parents because you can’t force him to eat. He will have his first surgery at 11 months, and you will quickly learn that having that G-Tube placed will be the best thing you could ever do for him. He will have seizures on an almost daily basis, and it will break your heart every single time to see him lose control that way. But you will talk him through them every time, diligently timing and recording them in a log for his neurologist. And he will come out of each one with a shuddering sigh and resume whatever he was doing beforehand.
His first few months will be without a single smile, and you’ll worry that you will never get to see one. But when he finally breaks out into an enormous grin for the first time at the sound of your voices, it will be the most beautiful sight, and the happy tears will flow. The amount of hair he has now seems like a lot, but it’s nothing compared to the unbelievably gorgeous mop of golden curls he’ll eventually grow that will either make people think he’s a girl or that he’s wearing a wig. His laugh will be contagious, and the mischievous look he sometimes gets will convince you he understands more than he let’s on. You will celebrate milestones most parents take for granted, such as watching him finally close his tiny fingers around an object or getting his high muscle tone in control enough for him to reach his hands above shoulder level.
Most important, you need to know that this will all be normal for you before the end of his first year. It’s not the normal any person would willingly choose for their family, but it’s also not the normal most parents could manage. You were given this amazing boy and all of his medical complexities because you will be able to look past his multiple diagnoses and see the little superhero that bravely battled and overcame the odds to live a life that not only has plenty of quality but overflows with hope, inspiration and unwavering determination. You will all survive this and come out stronger and closer than ever.”
As the scene fades and I’m brought back to present time, I find myself gazing adoringly at my beautiful son being cuddled by his dad. I say his name and see his face turn into a brief look of deep concentration and then break out into one of his enormous trademark smiles — the one I thought I’d never get to see. It’s followed by an enthusiastic coo that reminds me that although we’ve all traveled a bumpy road together and still have a long journey to go, he’s here with us now, as happy and loved as can be.
For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.