Mikayla was diagnosed with Aicardi Syndrome at the age of 2 ½ months. At this time, we were told that Mikayla would not talk, walk and would not live past the age of one. This was a lot to swallow for a young couple that thought their family life had just begun. My husband at the time was diagnosed with Lupus and disabled, and then to learn we have a special needs child… WHY? My first thoughts were, “What had I done to deserve this?” or “Is God mad at me?” We all played the blame game. Then one day I decided “NO, this isn’t going to happen!” and from that day on I lived my life from the perspective of “NO GIVIN UP”.
When Mikayla was two years old, I became a single mom. Working a full time job, and taking Mikayla to therapy and doctor appointments kept me very busy. Mikayla was in and out of the hospital with pneumonia 44 times by the age of 5 years. At this time, Mikayla was able to attend public school and so another journey began. I always felt as if it was a fight, but I had to. I was her voice. Mikayla could not speak, she could not tell teachers, doctors or therapists her needs, likes or dislikes. I was her only advocate. It was with great pride that I took on this role, but it wasn’t a walk in the park. I had to prove myself continuously. I had to apply for equipment and explain why I felt there was a need. I had to apply for special funding for “EVERYTHING”. My correspondence would always include a photo of Mikayla and a letter explaining / pleading for her to be chosen.
I have three other amazing kids: Audrey, Steel and Hunter. I would listen to them every day tell me what they wanted or needed. All the while, Mikayla could not even tell me if she was hungry. My kids are my drive and my “WHY”. I just knew I had to make a difference in all their lives, not just in Mikayla’s life. Mikayla’s siblings love her unconditionally and, through our family adventures, she was included in everything! One way or another, we made sure she could go.