Its hard to imagine a day being more beautiful than it is here at home. It’s sunny and warm and the birds are singing. The flowers are perfect.
It’s not overlooked by most of us, that this day has a history that is painful. It’s everywhere we look. Whenever we turn on the tv or listen to the radio it is being discussed and talked about, over and over. I feel really sad for those who were harmed and have very painful memories. I asked God for healing for many people because it’s hard to have that hurt inside of us.
I have something in my heart today that I wanted to share with others. I need to start by saying that people who intentionally hurt others have problems I can’t even imagine because it is ignorant to think that it won’t come back to harm us if we hurt someone else. I have been thinking much of peace lately. I am so glad for the days when I feel peace inside of my body. The peace I can talk about the best is my own.
I’ve had many hard days lately. If I could jump out of my skin and run away, I would never come back to it. I have felt much frustration and sadness over the trouble that Rett Syndrome has caused me. There are times when I feel that I have a great life in spite of it, and other times, I can’t stand what it has done to me and my family. I have so many limitations and getting my needs met is getting harder on my caregivers. That is very hard on me too, because I know what I want to be able to do, and yet I can’t do it.
I have so much trouble trying to just live, but in my heart I have so many things I want to experience in my life. I don’t know if a cure will come. It would be a miracle if no other children were born with this disorder. I haven’t met anyone with Rett Syndrome who has it easy, but I can say this, there is so much hope in my heart today. I know that if I struggle everyday I am not alone. I have family who have loved me so well. It’s great to be at home with them. It’s not hard going to bed feeling content everyday, even if it’s been a hard day, because they tell me they love me in so many ways. I am fortunate and I feel peace because I know there is more than I can see in this world. I am not going to suffer forever and I feel glad for that.
I have found joy in my heart. I’m not afraid, if I live for a long time or if I die soon. I am living a life I hope helps others and brings peace to other girls with Rett Syndrome. Their families have concerns that most can’t even imagine.
Peace and hope come even if life is really hard.