Passing Along Medical Mom Comfort in the Hardest of Times
It has been 13 years since we spent 32 days in the neonatal intensive care unit with our son Jonah, who was born with junctional epidermolysis bullosa.
As the years have passed, the feelings, sounds, and smells of those days have faded. The beeping of the machines maintaining baby lives. The sterile smell of antiseptic. The feel of my hands cracking due to constant washing with hospital-grade soap. The waiting for answers, hope, and reassurance.
Jonah in the NICU in 2009. (Photo by Patrice Williams)
Had I not blogged daily about our journey, perhaps even the stories and specific struggles of those times would have become clouded as well. Although I kept a journal during those first months — documenting every challenge, fear, triumph, joy, and moment of anger — I still only vaguely remember the urgency and exhaustion. It was like a hurricane we somehow survived, then gratefully left in our rearview mirror.
But this week, my best friend, Lauren, had a baby. Isabel was born six weeks early via emergency cesarean section. We knew she would be born with an interrupted aortic arch, but being a preemie with airway issues, and possible genetic issues on top of that, means it has been a scary first week of life for baby Izzy and her parents. Izzy still faces an upcoming heart surgery and possible other complications and procedures in the near future.
From left, Patrice and her friend Lauren several months before the birth of Lauren’s child, Izzy. (Photo by Patrice Williams)
As I try my best to support my friend from afar (stupid COVID-19), all of those feelings — good and bad — have come barreling back.
When Lauren calls me in terror and sorrow, I know it won’t last. When she calls me in joy and triumph, I know it won’t last. I remember the roller coaster of ups and downs. I remember how one day, I’d feel like I had superhuman strength and could do it, and the next, I’d wake up full of anger, sadness, anxiety, and fear. I went from “Watch out world, Momma’s comin’ through” to “How is this my life?” overnight.
All I know to do is to tell my friend that I know how she feels. It’s OK to be happy, sad, mad, or terrified. It’s OK to feel like you can take on the world. It’s OK to crumble. It’s OK to advocate and fight for your babe as if your life depended on it. And it’s OK to take a break, get a shower, take a nap, and trust the amazing doctors and nurses to do what they do best.
“Are you sleeping?”
“Are you eating?”
“Are you hydrating?”
A mutual friend of ours texted me a few days after Izzy was born and said, “I had this weird overwhelming relief yesterday thinking about your baby/hospital advocacy journey and how you can coach and empathize with Lauren. And how lucky she is to have you. Life is so beautiful sometimes in the weirdest dark places. You are living proof that it is survivable and thrive-able, and it is weirdly comforting to have a close example of that.”
And all of that just makes me want to weep.
Baby Izzy in the NICU last week. (Courtesy of Gilbert Ramirez)
I would never wish this hard, scary medical mom life on anyone, but going through the experiences that we have has made us better. My faith is deeper, my character is stronger, my marriage is more solid, my friendships are more real.
And Jonah? Just like Izzy will be, he is compassionate, resilient, funny, strong, feisty, and one tough cookie. And life is so much richer now that he is here.
So, as I comfort Lauren in a walk that I hate she has to endure, I have the gift of foresight and vision. My 13 years of experience tell me that their lives are about to be deeper, richer, and more meaningful. Harder? Yes. More exhausting? Definitely. Worth it? Without a doubt.
I don’t know if Lauren is “lucky” to have me as a friend. That gives me too much credit, probably. But I do love the Bible verse that says God “comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” That sure rings true for me.
I am thankful to remember. I am thankful I can empathize with all the feelings as a fellow medical mom. I’m thankful that I know what real comfort feels like, so that I may pass some of it along. But mostly, I’m thankful for my beautiful friend and her amazing baby. And that none of us have to do life alone.
Even in the really hard stuff, that is a beautiful thing.
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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Comments
Nirva Joseph
This was a wonderful column. My daughter passed away 2 years ago, she had JEB. So. this column resonates with me.
Helen Baldwin
Lauren IS lucky to have you as a friend, and the rest of us are lucky we were led to your Jonah journey :)