Make your own free website on

Welcome To

~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.

"If you learn from your suffering, and really come to understand the lesson you were taught, you might be able to help someone else whoís now in the same phase you may have just completed.
Maybe thatís what itís all about after all."

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."

And it is a "bitch". But, it doesn't always have to be, it all depends on how you look at it. There are actually days I'm grateful that Dani has Rett. These are the days I hear of other 19 year olds who have been killed in driving accidents, either because they have been drinking or because someone else has. I'm grateful when I see "other" 19 year olds screaming at their parents because they "aren't being fair." And I'm most grateful when Dani lets me hold her and cuddle her in my lap and I feel her warm breath on my breasts, her silken hand touching my face, her deep azure eyes penetrating my soul telling me it's all going to be alright.

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.

Page updated 4-4-99

This page has been visited times.

<-----Back to Living With RETT