I wanted to reach out to you earlier this week, but haven’t been able to find the right words. Because sometimes it’s hard to find the right ones.
Sometimes feelings are so visceral for heart mamas like me that we cannot help but sob when we hear that someone else is dealing with the fear and heartache we know so well. We are immediately taken back to our grief, shock and disappointment that we cannot help but weep with you.
I understand all too well what it feels like to have doctors tell you your tiny, itty bitty newborn needs major, invasive, complicated surgery in order to survive. And needs it now – or tomorrow, but not to wait much longer than that.
I know what it feels like to watch them intubate your child, under paralyzing anesthesia, and see that little comatose body pushed down a long hallway with people you barely know, but would give anything to have them fix your baby.
I know what it feels like to wait in a hospital surgery waiting room – pacing, and trying to drink coffee, and taking to the prayer room just so you can have the privacy to close your eyes in exhaustion because you’d rather feel anything but worried and scared, not sure if you’re doing this waiting thing right… not sure you’re doing anything right, and hoping the doctors know what they’re doing.
I know this all too well and I wouldn’t wish it on anyone.
But I also know what it feels like to have a community of people step around you and hold you up when your arms are too tired and your legs give out. To turn to faith to get you through today, tomorrow and the day after that… I know what it feels like to want to vomit in the trashcan while simultaneously eating all the chocolate cake you can find, just to get the knot in your stomach to release and give yourself an endorphin kick.
And I know what it feels like to have that baby come out of surgery, be sedated for hours, quiet and peaceful, while we parents sit in the room listening to the chest tubes gurgle like a brook. And then listen as our baby is woken slowly and life fills the room again. LIFE!
We are so incredibly lucky, you and me, lucky that we get to snuggle our boys. To love them and teach them that each of us is special no matter how we came into this world and no matter how we leave it.
There may be moments in the days ahead where someone complains about weather, or lack of interesting food options, or that their child cried in the night and woke them up that will make you swallow your tongue for the sheer weirdness that they would think any of these things important enough to be upset about. Don’t worry. It’s normal. And one day soon, you’ll be back to complaining about the same things. But for today, you’ll know that family and life is what is important. And when you have both, you have a lot to be grateful for.
There will be days in the coming years that you will look at Billy and you will be in awe that he is here. You will think of the days in the hospital when you weren’t sure about his precious life and it will knock the breath from your lungs and the socks from your feet. You might find tears in your eyes and whisper a prayer of thanksgiving that he is sitting beside you getting spaghetti all over his face and the white table cloth. And you’ll smile instead of get mad, because you understand how fleeting and fragile life is.
And there may be days you want to put him in a bubble, wrap him in cellophane and protect him from scrapes and hurts and frustrations. Keep your daddy-hands in those pockets and tell him to run – run like the wind, fly like the birds, and climb trees like the squirrels. Don’t hold him back because you feel your heart might burst from concern. He’s got this. He does.
And lastly, there will come a day, when you’ll have to send him back that long hallway again, with the same team that took him before and mended his little heart, and you’ll sit waiting, hoping and praying they are skilled enough to complete the task at hand and give you your perfect boy back again, whole and new. This part doesn’t get easier. But it does get done. One foot in front of the other, one heartbeat at a time.
And now listen, I have to say, please don’t forget that wife of yours. There’s something about a mama’s heart that beats in tune with a child and feels all wacky when the beat is out of rhythm. But her heart will feel wacky if it’s out of rhythm with you, too. Run to her, hold her, talk to her, tell her you’re scared too and it’s okay to be scared together. That you will win this fight together. That this will bring you closer, not apart. She not only needs your strength, but also to know you’re feeling this right along with her and that she’s not alone.
You got this, dude. I know you do. This has changed your life, but that’s what children do. Billy just chose to do it in a big way! Gotta love that kid. And I know you do.
From another heart parent who wants you to know you aren’t alone.
Leighann Marquiss is a mother of four children, including a son who was born with Tetralogy of Fallot with pulmonary stenosis, Hypoplastic Right Heart Syndrome with tricuspid atresia, Cor triatriatum membrane of the aorta, omphalocele, and ectopia cordis (heart outside the chest). She is the author of Showing Heart: The True Story of How One Boy Defied the Odds and You Are Not Alone: An Insider’s Guide to Prenatal Diagnosis. She is a writer, speaker, and life coach and can be found at www.leighannmarquiss.com
True words from an awesome mama… I hope someone gets this letter to Jimmy and his wife..