By Rebecca Norris
Mommy to Hazel
Born February 2016
Pontocerebellar Hypoplasia
Hazel was born prematurely. My water broke at 24 weeks and they kept her in until 27 weeks and 4 days. This is when our journey with On Angels’ Wings began – capturing a little baby in NICU born at 1-pound 13-ounces and 13-inches long. I couldn’t even hold her for 3 days. The guilt and shame I felt because my body had failed her suffocated me.
We got to take Hazel home from the NICU after three months. By the time she was 2 years old, we noticed she was behind developmentally and was missing milestones, even with her corrected age. We noticed symptoms that were similar to absentee seizures and autism.
It wasn’t until she was 5 years old that we found out there was more to it. We wanted to know why she was struggling developmentally. After several specialist appointments, we finally had brain imaging done. Neurology delivered the news that Hazel has a very rare brain disorder: Pontocerebellar hypoplasia.
They told us she was born with it and that it can go undiagnosed completely because of its rarity. It is usually fatal, though we have been reassured she shows no hallmarks of the regression that is a precursor for that. However, that doesn’t mean she is off the hook. Because her type is new to the field, there are more questions than answers and it is as if we are on a medical hamster wheel.
The worst part is, we still don’t have all of the answers we seek and it feels like we never may. Rare genetic disorders suck, and Hazel’s is ultra rare. It’s the first time this particular type has ever been discovered so we have no idea what prognosis is.
We are still fighting for answers and advocating for Hazel at every turn. The struggle to cope and assist her when you don’t even know the fully ramifications of what you should even be coping with is tough. But Hazel is strong and happy and that’s such a blessing in itself.
I want to see her grow up and outlive me. I want to see her happy and prospering. Whatever we have to do to support that, I am infinitely on-board with. I want so badly for her to grow up to marry, have children, and a career of her own. I don’t even know if that’s possible. The weight of that is heavy.
I could never dream of affording regular family pictures. The impact of OAW documenting my child’s life is priceless. Especially with so many unknowns about the future. At least I can say no matter what I have something of her. And if things go the way I pray they do, I have captured a precious stage of her life.
You can’t get back time, but you can hold dear the images OAW captures and for a moment you can escape to that place where your child is happy and healthy and here with you, in whatever capacity that is. On Angels’ Wings is a godsend, and they understand grief like no one else. That means everything when they are the ones capturing these priceless moments.
