By Paula Vigil
My daughter Ashley is 23 years old. Back when she was young, Rett syndrome was virtually unheard of. Add to that we live in a small town in a rural area. Ashley had so many misdiagnoses that to be completely honest, we went from one to the next from about 18 months old until she was about 3. I have to say, there were so many hospital stays that they all ran together for me and I don’t remember which one was the one where they finally nailed it. I do know I was young, single and alone, and during this time a woman sat down next to me in Primary Children’s Hospital and asked why I was crying. I replied, “My daughter is going to lose her ability to stand, feed herself, and lose the ability to say the few words she does know.”
That woman, who I believe was an angel, took my hands and said, “My husband and I saved for 12 years to take our son to England to meet my parents for the very first time. While there, he contracted some kind of illness. We are about to let him go. He is dying right here in front of us.”
I knew then and there that things could be worse. That single moment has always gotten me through every new development, no matter how frightening.
During one of her many stays in Primary Children’s, during one of her numerous tests, I had enough. I could no longer watch the blood draws for what seemed the 50th time that day, and I stepped outside the room while my daughter yelled “Mama.”
If I could go back to any moment in all of history, I would go back to that moment and tell myself, Don’t for any reason at all leave that baby alone. She is going to yell for her mama, and it will be the very last time you will ever hear her speak. If I could go back to that moment, I would hold her hand, look in her eyes while she said Mama, and I would promise her I would never ever let her go again. I would be staring into her beautiful brown eyes while she spoke her very last words.
I would tell her, years down the road, little girls with a new diagnosis will have technology to help them speak and keep their abilities as long as possible. They will not have to suffer from numerous tests, because Rett will be much more recognized. You will have paved a very rough road to make it easier to navigate for those behind you. You will always be my hero. I will always admire your fight, your will and your smile. And I hope someday, older girls in rural areas will get access to Tobii Dynavox eye gaze technology, or anything that will make life even the tiniest bit easier. I love you Ashley, with all my heart.
Ashley is 23 years old. She has struggled so much, but she has never ever lost her smile.