When we visited the Clinic for Special Children in PA, there was a family there who also had a little girl, eight months old, with GA-1. The nurse told us there was another family with GA-1 and that if we wanted to meet them we could pop our heads out.
Honestly, we didn’t want to meet anyone because Rob and I were annoyed at each other and just trying to hold it together in our waiting room. But the nurse was kind of insistent so we reluctantly said, “Well, tell the family they can come in here.”
I feel bad actually writing that because when we met this A.MA.ZING. family we were both reminded why we started sharing this journey to begin with.
They came in excited to see Reagan because they already knew who she was. They started telling us they had read everything on our blog, and that when their daughter was born, and they got the news shortly after about GA-1, they searched the Internet trying to find anything that could give them answers. What they found, was also what we found, terrifying stuff. Stuff that makes your heart beat out of its chest and makes your whole body feel flush from top to bottom as you realize you’re slowly walking into your nightmare, which is actually your real life now.
They read all those things.
And then they found this blog and they said they found hope. And every single night they would read our blog, for hours, as they fed their baby girl and learned about this disorder.
We almost let our current situation and feelings prevent us from meeting another family with GA-1 which is ALL Rob and I ever wanted when Reagan was a baby.
We started this blog to carve out a little section of the Internet about GA-1 that’s filled with hope. We’ve documented everything—every hope, dream, heartbreak and triumph. And this family is exactly why we’ve done it.
This has been our purpose: to allow other families a glimpse into every day life with GA-1 and to give hope. But it’s turned into more than that. We’ve opened up our lives in an effort to let anyone and everyone know that struggling is normal. Life is hard. Hardships happen. But guess what? You can get through it.
I promise you that when we were in the depths of fighting for Reagan’s life and for normalcy in our world, that it was the hardest thing we’ve ever done. Our marriage was tested, our faith was tested, our purpose was tested. Our character, and every single thing that makes us who we are, was tested beyond what was comfortable, bearable and certainly beyond what we thought was possible.
Yet, here we are, on the other side of that hardship, standing. It’s not been our only hardship (hello, brain surgery) and certainly won’t be our last. We’ve gone through lots of things in our little family, but with God leading the way, we have stayed the course together and have learned a bunch along the way.
For as long as we write, we hope you will continue reading along. We promise to keep it real for the purpose of giving all our readers hope.