Put Courage Into Those Facing Hard Battles

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by Patrice Williams |

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I have had two friends in the last three months give birth to premature babies. The first, Izzy, was born six weeks early with a genetic condition called DiGeorge syndrome and an interrupted aortic arch. She is home now, on supplemental oxygen, after spending more than three months in neonatal intensive care.

She already has gone through two surgeries — the first of two procedures to repair her heart and one to place a gastrostomy-jejunostomy tube. Her medical journey is only just beginning.

courage | Epidermolysis Bullosa News | Wearing a black mask and T-shirt, Patrice's son Jonah holds baby Izzy, who was born early with DiGoerge syndrome and a heart condition. Izzy is wrapped in a yellow and white blanket and is using supplemental oxygen.

Patrice’s son Jonah holds baby Izzy, who is home after being born six weeks early with DiGeorge syndrome and an interrupted aortic arch. (Photo by Patrice Williams)

The other was born last weekend, not even reaching 30 weeks’ gestation and weighing only 4 pounds. He also has a long road ahead of him with many uncertainties.

In both cases, my heart has broken for these precious babies’ parents. I remember how it felt in those first scary days of the unknown after our son Jonah was born with epidermolysis bullosa (EB). Looking back, I don’t know how my husband, Matt, and I did it. We barely slept and both lost a ton of weight due to stress.

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Life Is Hard, but We Choose Joy Anyway

Even after Matt had to go back to work, I was at the hospital from 8 a.m to 11 p.m. every day. We constantly had to make impossible decisions with limited information. We were terrified of all the unknowns. And we didn’t have other children to worry about at home. Both of these couples do.

And yet somehow in those weeks and months, Matt and I had times of joy. We laughed and joked. More often than not, we were able to find the bright side. I can go back and read my blog from those first months, and most days, I sound fairly upbeat. But now I look back and wonder how. How did I smile or laugh or even write coherent sentences? How was I able to see anything positive?

When our worlds have turned upside down, how in the world do we make it through?

I was texting with the friends who just had their baby last weekend. They were so scared. “He is so tiny,” one said. “He could only take room air for just a second. I just pray that he does OK.” And my heart cracked just a little more.

I don’t know what it’s like to have a preemie baby. Obviously, my EB expertise doesn’t apply to the situations and scenarios these babies are facing. But I know what it feels like to be afraid. I know what it feels like to live in the waiting — for doctors, test results, answers, hope.

And as far as where the strength comes from, the only answer I believe is God. Because nothing on earth can make any of those struggles bearable. I believe it’s only the Holy Spirit and his manifestation through amazing neighbors and loved ones that empowered me to be OK when life was anything but.

So I texted my friend back: “Babies are so much stronger than we think. And God fashions the human body in such incredible ways. Backup systems for backup systems. Science and what they can do for preemies is so advanced now. Plus, he belongs to the two of you. So strength is his birthright. There is so much hope.”

When broken down, the word “encourage” literally means “to put courage into someone.” Isn’t that beautiful? If we don’t have advice (or do have advice but maybe should keep it to ourselves) and can’t promise the hurt will go away, we can give hope. We can infuse courage into someone else.

This life is so freaking hard. People all around us are fighting battles. My friends are currently fighting medical ones. But others are dealing with the loss of a job, mourning a loved one, worrying about a wayward child, facing incredible financial strain, or losing their marriage. Maybe we don’t know what they’re going through. It’s likely we can’t (or shouldn’t) give them advice. But we can give power, strength, and hope through our words and actions.

Keep checking in on your people. Tell them you’re praying, if appropriate, and specifically, how you’re praying. Give gift cards, watch their kids, clean their house, do their laundry. If they want it, find specific ways to provide tangible help. But minimally — although it’s not really minimal at all — keep infusing courage into them. Make sure they know they’re not walking their hard road alone. Often, knowing we have others to prop us up when we’re falling is the greatest gift of all.

“Be an Encourager: When you encourage others, you boost their self-esteem, … lift their spirits and make them successful in their endeavors. Encouragement goes straight to the heart and is always available. Be an encourager. Always.” ― Roy T. Bennett, “The Light in the Heart

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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