In one of my online support groups there has been a recent discussion about having a life other than Rett syndrome. And how to do it. Parents had helpful suggestions and ideas for each other. Parenting a child with Rett Syndrome can be stressful. The girls(and a few boys) require a lot of care. Not only that, but it is also difficult to work with some school systems, insurances and doctors. The whole ball of wax can be overwhelming. Not to mention, time consuming. It is a full time job, for sure. People need to get away, take a break, somehow.
So I was reading everyone's emails over the course of a few days. They were supportive and encouraging. People were responding to each other and conversations were enlightening and inspiring. There is nothing better than an online support group if you have a child with special needs. Other parents are the best sources of information and assistance. Better than the doctors, better than the schools, better than the therapists...I have found. If I had given birth to Sarah 25 years ago, I would have felt so alone and lost. There is no other child like my Sarah around here. I would have had no one to talk to. No one to learn from. I would have been all by myself with this very unusual child. So I am grateful for the internet. For the other parents willing to share and listen, willing to give of their time and experiences.
But this time, I was reading this recent thread about 'life other than Rett" and I felt a bit lost. I couldn't relate. But lots of Rett parents could. After a while, I wondered if anyone out there was like me, so this was my email:
I just wanted to chime in here. I think there must be something wrong with me.....it seems like I am one of the few with a special needs child who is not stressed by it. Not at all. Isn't that strange?
I should be stressed! I am a single mom who lives paycheck to paycheck. She is my youngest child(14 years), her 2 older awesome brothers are in their 20s and are living their own lives now(as they should). So it's just me and my girl at home. And a crazy cat :)
I don't know. I am very happy. I am so grateful that she is alive, not in pain and enjoys her days. I work 4 evenings a week and school her at home. I cannot worry about the future. I simply enjoy her day to day. I just drink her in and it fuels me. My main worries are financial, nothing to do with my girl. I am very content with her just the way she is. I have no desire to change her. Odd, huh?
Yes, her needs are full care, full time, with a lot of appointments which are a pain, but at the end of the day we are home and happy to be there. I guess it comes down to the fact that I am quite aware that I could lose her unexpectedly at any time, so I treasure and memorize to heart every day I have with her.
We look forward to when the boys come home to visit. I chat with my girlfriends on the phone, sometimes getting together. I love to read. My daughter loves to take day trips so we do that, she loves restaurants and the mall, so do I!
Mostly, I am grateful. Grateful to have been given this exceptional jewel of a child, so different than most, so sweet. Her smiles make my days. I don't feel like I am missing anything 'out there', I notice that I am happier than most people. Life is short, goes by in the blink of an eye and it is all as it is meant to be.
Isn't that nauseating? I know. I know. I have been asked if I was ever angry, sad or frustrated with my daughter's (and subsequently my) situation. And the surprising answer is No. Never. I am simply thrilled to have her. Cause tomorrow I might not.
I think I am in the minority. Not sure what it's all about, but just wanted to throw it out there.
And surprisingly, there are a few parents like me. But then we wonder, with all this acceptance, are we too laid back for our girls? Are we pushing them enough? I have struggled with this thought occasionally over Sarah's 14 years. But what I have learned from Sarah is that I cannot push her. She does what she can and that's it folks! I give her theraputic riding, an eyegaze communication device, academic instruction, books to read and fun day trips. What she takes from these experiences is purely up to her. All I can do is offer with smiles. She is her own person who knows for sure that her mama loves her just, exactly, the way she is and I wouldn't change her for the world.
This she knows. I couldn't ask for more.
