I remember standing in our son’s bedroom the day after he was born and bracing myself for the real possibility that we would lose our first and only child.
Kohler Henson Chrestman was born the previous day and, because of an abrupt lack of blood and oxygen to his brain, he was born with severe, global brain damage.
The ensuing 24-hours were a whirlwind of utter demoralization, shock, and helplessness.
My father, himself a radiologist, described my son’s MRI as “one of the worst MRIs on a neonate I have ever seen,” he explained trying to mask the fact that he was devastated with medical jargon and referring to his grandson as a “neonate.”
While no one ever said it outright, the implications were obvious: we stood a real chance of losing this child, and we should consider withdrawing care.
The shock of those last 24 hours finally wore off and it hit me when I was standing in Kohl’s bedroom, having been sent home to retrieve a few things to bring back from the hospital. It was eerie being in there, and I knew it would be best if I kept my wife Sarah out of there for the foreseeable future.
That moment will forever be etched in my memory.
I was spared the nightmare of losing my child, and my heart truly aches for those that have had to endure that pain. I can think of nothing worse.
We were incredibly lucky. Kohl came through. He defied expectations and, after a month-long stay in the NICU, he finally came home.
In January, he will turn five. He also has a baby sister, Amelia, who is healthy and obsessed with him.
To be sure, Kohl has many challenges, and he has been dealt a really bad hand. He still does not walk, he still does not talk, he still does not sit up without assistance. When I see kids his age walking, talking and playing, I still feel immense pangs of jealousy. It is truly heart-breaking.
But I am a better man now than I was that day, standing in his bedroom for many reasons. Since that day, while my life has been filled with challenges that no one should ever have to deal with, it has taught me plenty about true happiness and what life is all about.
I have been given plenty of reasons for hope. And I can say, without reservation, that Hope for HIE has been a critical part of helping me heal.
It was this organization that gave me some practical solutions for issues that we were having with Kohl’s gastric feeding tube and allowed us to solve a puzzle that no doctor, therapist or nutritionist seemed to be able to solve. It proved that no one knows these kids better than the parents.
It was this organization that has given my wife Sarah a support network of other HIE moms that offer a level of support that I never could. She was fortunate to attend this year’s retreat, and when she returned home, she had a glow about her that showed me it was a trip that could even be described as transformational.
It was this organization that has taught me new skills and given me a platform to help others. Why I was asked to be the volunteer fundraising chairman for this organization will always remain a mystery to me. I had no fundraising experience (I’m still not exactly sure if I really know what I’m doing). All I had was baseless overconfidence and a passion for an organization that gave me a medium with which I could fulfill my genuine desire to help others that are on this journey.
Hope for HIE has helped me in countless other ways, and I suspect that if you have read this far, it has helped you too.
Maybe you received a care package. Perhaps you got a question answered or got some good, practical information that you can use to help care for your child. It may have been Hope for HIE that allowed you to develop a new, lifelong friendship with someone that forever will be there for you.
We are about to enter the holiday season, which has proven to be one of the most important times of the year to help us continue to grow. Last year, we were thrilled with the generosity of so many and raised over $11,900 during the holidays.
This year, we want to keep that momentum going. Beginning on November 29 and continuing through the end of the year, Hope for HIE needs to raise $15,000.
Those donations go to supporting families impacted by HIE, through packages for families in the NICU or hospital or who have lost their little one. And as our foundation grows, we want to do even more with reaching out to the medical community and researchers.
It is a lofty, but reasonable goal. We believe we can achieve it because we have an incredible group of volunteers with amazing family and friends. This is an organization that takes so much pride in being able to help others. And we are just scratching the surface of the good that we can do. We have some pretty lofty ambitions and goals. But with your help, we know we can reach them.
Here are three ways you can help us get there:
1. Go shopping: It’s the holiday season. Get yourself some Hope for HIE swag or give them as stocking stuffers to your friends and family. It helps the organization and it raises awareness. You have plenty of choices. We are planning another shirt campaign soon, or youget some Hope for HIE swag. Need some delicious wine to enjoy during the holidays? Buy it here and 20% of your order will support the organization.
2. Bring in some bacon for us: You are our greatest ambassadors. You have amazing friends, family and employers that want to help. Let them. Get out there and spread the word about Hope for HIE. Let them know why it’s important to you and encourage them to make a donation here.
3. Tell your story: Why is Hope for HIE important to you? How has it helped you? We want to know. We are a network of incredible families, all with very touching stories. We want to hear about them. You can start a fundraiser on behalf of your child. Just let us know, and we’ll help you along the way.
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