Special thanks to Iris K. for sharing this special story about caring for her granddaughter with Angelman Syndrome:
I remember the moment she came into this world. Everyone in the room released a breath of “aaahhh…” She was so beautiful and perfect in every way, just as she is today. I was her caregiver so her Mama could work and support her family. She never cried. She slept all the time. I worried that she was too perfect. Those early days were easy for us. At the age of two she learned how to walk. She was a big girl and you know what it takes to help a toddler learn how to walk. I knew something wasn’t quite right but couldn’t say so to my daughter because she thought her little one was just a slow beginner.
It wasn’t until she was about 2 and a half yrs. old that her Mama was told that she would be enrolled into a “Special” class until the age of 22. She also learned that she had “Angelman Syndrome.” It was devastating to us. Each day I had with this wonderful little girl, I felt blessed. Why? When she was very young, I took her everywhere. She was so quiet. People used to stop us and say how beautiful she was. I was so proud. Unfortunately as she grew older those looks people gave us were not so nice. At age 5 and 6 she still used a binky and wore diapers. She doesn’t know to this day that its “bad” that she wears diapers. She simply doesn’t care. And do you know what? Neither do I! My Granddaughter has taught me to not look and judge anyone because we simply do not know their situation. I am so very proud of her. No one knows what she has had to overcome. And how much harder she has had to work to accomplish what most any child does simply by just getting older. I couldn’t leave her alone for more than a few seconds. She doesn’t know fear and doesn’t feel pain. I had to know where she was every second of the day.
While other children sit and play with Legos, my sweet girl was in the refrigerator or crawling up the stairs or out the door. No one can possibly know what it takes to be a caregiver for a “special child,” unless they have been one. Special can mean many things.
It’s so easy for any of us to judge by observation. I used to chase after anyone that gave us a bad look or snide remark. I wanted them to know, she can’t help it that she wears a diaper at age five, and she doesn’t care. And that’s the best part! I wanted to tell them to not be so judgmental. If she didn’t have her binky, she would chew on her fingers. I couldn’t make them understand because they just didn’t know, just as I at one time didn’t know. They don’t know that this child we love can’t say, Mama, I’m tired, or hot, or hungry, or I need to be loved, or Mama I want this for Christmas. Or how old am I? However, she has taught me differently.
These things just don’t matter to her, because she knows she is loved and she tells me, “Ah ya ya gam ma ma!” It means, “I love you Grandma!” That is part of her syndrome, she can’t speak, and yet she communicates better than most adults, and I am so proud and fortunate to be her Grandmother and caregiver for the first seven years of her life. It is not easy and we all should be so lucky to have a “special person” in our life!
Thank you, my sweet girl! Grandma loves you!!! You are amazing!!! I hope one day, there will be a cure for Angelman Syndrome and she will be able to speak for herself and tell the world, “Be kind to those whom you don’t quite understand.”
Click here to learn more about Angelman Syndrome.
