It has been 13 years since we spent 32 days in neonatal intensive care with our son Jonas, born with junctional epidermolysis bullosa.
Over the years, the sensations, sounds and smells of those days have faded. The beep of the machines sustaining the lives of babies. The sterile smell of antiseptic. The feeling of my hands cracking from constant washing with hospital grade soap. Waiting for answers, hope and comfort.
Jonah at NICU in 2009. (Photo by Patrice Williams)
If I hadn’t blogged daily about our journey, perhaps even the specific stories and struggles of that time would have darkened as well. Although I kept a diary 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 that we somehow survived and then left gratefully in our rear view mirror.
But this week, my best friend, Lauren, had a baby. Isabel was born six weeks earlier by emergency caesarean section. We knew she would be born with an aortic arch that was aborted, but being a preemie with airway issues, and possible genetic issues on top of that, means baby Izzy and her parents’ first week of life has been scary. Izzy still faces upcoming heart surgery and other possible complications and procedures in the near future.
From left, Patrice and his friend Lauren several months before the birth of Lauren’s child, Izzy. (Photo by Patrice Williams)
As I do my best to support my friend from afar (stupid COVID-19), all of those feelings – good and bad – have come flooding back.
When Lauren calls me in terror and grief, 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 one day I felt like I had superhuman strength and could do it, and the next day I woke up full of anger, sadness, anxiety, and fear. I went from “Watch out for the world, mom is coming” to “How’s my life?” overnight.
All I know how to do is tell my friend I know how she feel. There is nothing wrong with being happy, sad, angry or terrified. It’s normal to feel like you can conquer the world. It’s good to fall apart. It’s okay to plead and fight for your baby like your life depends on it. And it’s okay to take a break, take 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/child rights journey. hospital and how you can coach and bond with Lauren. And how lucky she is to have you. Life is so beautiful sometimes in the strangest dark places. You are living proof that it is possible to survive and thrive, and it is oddly comforting to have a close example of that.
And all of this just makes me want to cry.
Baby Izzy in NICU last week. (Courtesy of Gilbert Ramirez)
I would never wish this harsh and scary life as a medical mother on anyone, but going through the experiences we’ve had has made us better. My faith is deeper, my character is stronger, my marriage is stronger, my friendships are more real.
And Jonah? Much like Izzy will be, he’s compassionate, resilient, funny, strong, fiery, and a badass. And life is so much richer now that he’s here.
So as I comfort Lauren on a walk 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. Stronger? Yes. More exhausting? Definitively. Worth it? Without a doubt.
I don’t know if Lauren is “lucky” to have me as a friend. That probably gives me too much credit. But I love the Bible verse that says God “comforts us in all our troubles, that we may comfort those who have trouble with the comfort we ourselves receive from God.” This rings true to me.
I’m grateful to remember that. I am grateful to be able to understand all the feelings of another medical mom. I’m grateful to know what real comfort looks like, so I can pass on some of it. But most of all, I’m grateful for my beautiful friend and her amazing baby. And that none of us have to live alone.
Even in the really tough stuff, it’s a beautiful thing.
To note: Epidermolysis bullosa News is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Epidermolysis bullosa News or its parent company, BioNews, and aim to encourage discussion on issues related to epidermolysis bullosa.
