Living with Rett Syndrome, but not by choice.
I have a sister who is mentally and physically handicapped. She has Rett syndrome which is a degenerative disease that she has had since birth. Early on my parents thought she was autistic, it wasn’t until she was a bit older and her body started deteriorating that doctors diagnosed her with Rett syndrome.
She is only 15 months younger than me and she has never said a word to me; we would have been best friends if things had been different.
I used to get angry sometimes; why me? Why was she born into our family? Couldn’t she just be normal?
In situations like these you always hear people say “but I bet now you wouldn’t want it any other way.” Or the mothers who talk about their children with special abilities and say they wouldn’t change a thing. I get it, I know why they say it, I do, and I’m right there with you but no. I would change a thing; in fact I would change everything if I could.
If I could have it my way, she never would have been born with Rett Syndrome, a horribly debilitating disease that has left her body and mind broken, unable to communicate or live a normal life. Yes, I wish with all my being that things would have been different, that we would have grown up as two inseparable sisters, whispering secrets, giggling about boys, and sharing our lives together.
Instead I cleaned up her messes when she wet the bed. Performed the most basic tasks for her like helping her bathe and choosing her clothes. I watched helplessly as seizures ravaged her body, unable to do anything fo her. I felt the pain of embarrassment as a young child when we’d go to a restaurant and she’d steal someone’s food or when she would grow agitated in public and start yelling and biting her hand. To most people she looked perfectly normal, no one knew she had Rett Syndrome, so her public outbursts always caught people by surprise and sometimes people would get angry with us or yell at her.
Instead of a sister, I was her caretaker. In some ways closer than a sister, in others further away.
There were times that I raged against God. Angry, bitter, hating that He made her this way. There were other times that I fully accepted the way He made her, loved to the best of my abilities, and fully accepted the role God gave me in her life.
But now, as I grow older I realize there is a both and. I will always continue to lament the stolen life that we should have had together and look forward to the day in heaven when her body, soul, and spirit are fully restored, but I will also accept her fully in the form she is now.
I think there will always be a pain in my heart when I think of her. As we grow older it gets deeper. There is a longing inside of me to see her fully restored and able to interact with our family. I hurt that she doesn’t know who my children are, that they won’t know her as a fun Auntie who takes them out for ice cream.
It has been one of the deepest struggles of my life; coming to grips with the dissatisfaction of her lot in life, I want her to be my sister. I can now bravely, and confidently say yes, I would want it another way, not because I dislike her or am embarrassed of her, but because I love her, and I want the best for her.
So don’t be afraid friends, if there is a dissatisfaction in your life, take it to God. He can handle the hard questions and the pain of the situation, He’s not afraid to battle through your emotions with you. But instead of letting situations make you bitter, instead let them grow your character. And always, always friends, hold fast to the hope that one day we will be fully restored. All our tears will be wiped away, disease and death will be no more.
Holding Fast to Hope,
PS) If you’ve been following along from any amount of time, you’ve probably realized by now that honesty truly isn’t just a word to me. I strive to be authentically honest in everything I do. This post hits very close to home for me. I’ve teared up more than once while writing it and I went back and forth on whether or not I should post it, for it brings me to a level of vulnerability that I’m not sure I’m ready for. But as my sister just turned 26 last month, I’ve been really thinking about her life and how she as a person has impacted me so deeply. I do not want to trivialize Rett Syndrome or use her struggles as a way to gain popularity. My goal is to bring hope to those of you who may find yourself in similar situations.