Gracie

Gracie was born on August 1, 2012 at 11:39am at Hunterdon Medical Center in Flemington, NJ. It was a long 28 hour labor experience and I knew then that I was delivering a sassy little girl who was going to do things on her own time. That could not have been a more accurate thought almost seven years ago, that still holds true today. I knew within the first few weeks that something wasn't right. Babies are hard-wired to eat, yet Gracie was having such difficulty eating and latching. Why wouldn't she make eye contact with me? Why wasn't she curious and grabbing for things like other babies would? Everyone told me I was crazy, she was so young, she will develop on her own time. I knew others would say these things to me to try and comfort me, but I didn't listen. I signed Gracie up for Early Intervention at 3 months old. 

During the next 2 years and 7 months of her life, we had an intense therapy schedule 6 days a week. Some days I had therapists in my house 2-3 times a day. It got to the point where I had to quit my full-time job to stay home with her. I remember not wanting to have any other children. I was in a deep depression, struggled with my faith and questioned what I did constantly. My life was consumed by doctors appointments and therapy. Doctors had no clue what was wrong and they kept slapping different diagnoses on Gracie that I knew were incorrect. We had made peace with how things were with Gracie, found our faith again and instead of hitting milestones, we hit inch stones and celebrated each and every one. 

After months of being on a waiting list to see a geneticist, we finally had our appointment. We made it through blood tests and insurance loop holes, but after a few months, we got the call. The results of our Exome Sequencing tests were in. It was January 8, 2015. Gracie was two and a half years old, and I was 6 months pregnant with her sister. The diagnosis was GRIN1, not a progressive mutation and something that Gracie has had all her life. They explained what little they knew about the mutation and it was like a giant tsunami wave of relief that came over me. We had answers, we had a diagnosis, and now we knew what we had to do.

A worried mother does better investigative work than the FBI. We found others who were on the same path as us and it made us feel like we belonged. Over the years, we have continued with intense physical, occupational, speech and developmental therapies. Gracie is now almost 7 years old. She is a very happy, super healthy, sassy, funny, sweet girl. She brings so much joy to our family and we have learned so much from her. She has taught me more than I could ever teach her in my lifetime. Gracie attends a special needs school 5 days a week, year round. She is working on walking, sitting, independently eating, toileting, and an education curriculum fit to her needs. We still celebrate inch stones with gusto and she amazes us every day with new skills. She is our Amazing Grace.