~Our Story With Rett Syndrome~
"We cannot live only for ourselves.
A thousand fibers connect us with our fellow men;
and along these fibers, as sympathetic threads,
our actions run as causes,
and they come back as effects."
-- Herman Melville--
When we first found out that anything might be "wrong" with Dani, it was like going through the death of someone you love. You literally go through all the stages of grief; denial, anger, depression, grief and acceptance. Not always in that order, but most experience each emotion.
We were seeing a group of five (5) Pediatricians and they all kept telling us the same thing, "Each child progresses at a different rate." For almost three years I listened to this. You may wonder why we didn't switch doctors..... part was probably denial, I knew something was wrong, but as long as I had 5 "professionals" telling me I was crazy,
I could hold on to the last bit of hope I had.
When we finally got this group to give us a referral to a neurologist, her legs had begun to atrophy.
This was my first stage of "denial", though I knew in my heart of hearts all was not right in Dani's world. Nor was it in ours. We were just beginning what has turned out to be our Rett syndrome journey, though at that time (1981), Rett was not yet known in the United States.
Dani was misdiagnosed as having Cerebral Palsy.
Once you go through the "grieving process", step by tiny step, you find ways to cope with Rett and what it has done and may do to your daughter. I have many ways of coping which I hope you'll take a look at in your "spare" time. Seems like we never have enough of that do we?
How I Cope With Rett
Often we may re-visit the grieving stages. I know I do. I visit the Anger stage more than the others over and over. It just doesn't seem fair to see not only my darling daughter being so severely affected by this thing we call RETT, but all of the others too. These precious little souls which are incapable of harming or hurting anyone or anything, with their shining eyes and knock-out smiles . . . it's only natural to become angry and ask Why? Look at our RETTangels . . .
That's when I go to places like this for a brief respite.
Reflections and The Funny Side of Rett
If you ask Leo what RETT is, his response is, "It's a Bitch."
Yes, there are times I'm very grateful she has Rett.
It's called perspective. I haven't always felt like this, there were times I wished that there was a magical drug that could make her "normal" again. You have to learn acceptance. Acceptance is the key to surviving Rett syndrome. Accepting your daughter for who and what she is and "what" she has is how you will eventually be able to appreciate her as she is, not how you would HAVE her be.
Dani has taught me so much about life and how to live it. We live for the moment and try to make as many memories as possble everyday. Long term plans are no longer a part of our lives, today is the most important time we have. make the most of it.