A personal blog needs to be honest. Over the years I have been the best mother for Katelin. The painful truth is by doing that I failed to be the best mother for my other children. This was aggravated by many factors and perhaps a change in any one of them would have changed the outcome of being estranged from my other children.
A single mother is screwed. When there’s only one of you and three children or two children, it’s a Sophie’s Choice life. My son once asked me, “Don’t we (his other sister and himself) count?” He begged me to place Katelin outside the home.
Which mirror image does a Rett mother see at the end of her life? The one which abandoned her most vulnerable child to unseen/unknown hands or the one which virtually, by default, abandoned her other children, in their eyes.
This is a scenario which has played out in many families over decade upon decade, mine is not the only one. What can one say to an adult child who says, “you weren’t there for me?” It’s true, not always and in many ways, I was there for them, they just didn’t know. You listen to the “experts”, “don’t involve the children.” That only works when it’s both sides, when it’s only you-they see failure.
I had to learn not to make promises; Rett syndrome makes a mother out to be a liar. They will never know the tears I cried for that. The memories I didn’t get to make no matter how hard I tried, how I planned. I needed the support of others, and it just wasn’t there. Babysitters that canceled, a non-custodial parent that canceled, court dates that interceded, child support unpaid. That’s not to say there weren’t some really special times, but if a child doesn’t remember them, it doesn’t matter that it happened. Does one special, BIG thing really balance out the rest? No, it doesn’t.
When you have to leave one of your children in the ER and go back home in case your Rett child needs you because the other child at home is old enough but not REALLY old enough. What does it matter all the times you tried when your other children have to deal with hours of screaming, no bringing friends home, helping protect you from a combative child?
My children know I love them and I’m certain on some level they still love me, I’m their mom, but love is not always enough in the world of Rett syndrome; I hope time will heal the wounds I could not save them from, no matter who they were made by.
Rett syndrome is not a singular disorder- it is a family diagnosis. A treatment for one is a treatment for all. My greatest hope with Daybue and other treatments, which may one day come to fruition, is that parents won’t have to make that sort of a choice, it haunts you your whole life.
Trail to a Texas Trial 