Thursday, March 3, 2016

Four Years Gone

This was taken right around the day we received the phone call that Lu had Rett Syndrome. The anniversary of the date of the call just passed, it was February 27th. And this was the first year since we received the diagnosis that the day we met with Dr. Coffman has existed, because it was February 29th. These days were more prominent to me in the first year or two. The 29th will always be a day where I bristle with a combination of rage and pride; rage at what Dr. Coffman told us Lucy was NOT going to do, and pride at all that she has learned to do so far, instead. This was the first year that I really had a talk with her about Dr. Coffman and how wrong he was, and how wrong many people are not only about children with Rett, but people with complex diagnoses in general. 

And then last night I dreamt that Lu was talking, with her mouth, and everything was just coming out like she had always been able to. In the dream it was just like, "oh, ok Lucy can talk now! Of course she can!" I wonder if in the dream we were so nonchalant about it either because she already does talk to us all day, just not with her mouth, and/or because I believe it is a given that someday she will be able to speak, when there is a treatment or a cure. 

The thing is, when I am awake and not dreaming, I spend very little time thinking about treatments and cures, and I've talked about why before. However, every single day I hope for Lucy to stay healthy, to get stronger, to learn new things, for her spine to not curve more, and on and on. Chad and I don't live in the shadow of the possibility of a cure because that hasn't happened yet. And while there are so many exciting things going on in the scientific world in regard to treatments and a cure, there is no guarantee that it is going to happen, so we just focus on how to keep Lucy as healthy, and happy as possible, and how to prepare her for life and the world, even if she always has Rett Syndrome. 

We believe this:
-Dr. Seuss

And this:

She is who she is and we worship her just how she is. We would take away all of her difficulties in a white hot instant, immediately, without a second thought, if that option was ever presented to us. But, Chad and I just naturally focus on who she is, not who we thought she was going to be. Lately, more people than usual have asked me if there are any new developments in the trials for treatments and medications. I know with 100% certainty that these are well-meaning inquiries. I know that our family and friends just want Lucy's life to be easier for her. They want to see her "get better", and get to live a more "normal" life. I know they just love her, and us. But...I instantly, and I suppose irrationally, become defensive inside. I answer politely with what they want to know, but on the inside my heart says, " Why? Isn't she good enough for you the way she is?" And I know full well that's not what they are saying, but it's just my gut reaction. 

In regard to Rett Syndrome, the Shaffers have been kicking it's ass and taking its name since 2012.  I hate it, I fear it, and I wish we had never had to learn what it was.  But, in the event that Lucy never receives any reprieve from it, we are prepared to keep up the fight and help her to become the person that she wants to be, in spite of Rett Syndrome. 


  1. Lovely, and well written, as usual. She is a beautiful girl with amazing parents.

  2. I'm autistic, and if someone said they wanted me to 'get better' from autism I would be very hurt. Autism isn't something I 'have', it's something I 'am'. Without autism, I wouldn't be me.

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  4. Thanks for sharing Ettina Kitten! I guess I just wanted to say though that autism and Rett Syndrome are very different conditions. My daughter has a feeding tube, seizures, constant gastrointestinal issues, and scoliosis. She can't walk, or use her own hands, and she cannot talk without an assistive communication device. I look at Rett Syndrome the opposite as you do with autism. I believe Rett Syndrome IS just something that Lucy has, but it isn't WHO she is. But I understand your point of view as well and have read many stories of people with autism sharing the same feelings, but like I said, they are two very different diagnoses. Girls die suddenly, and often young, from Rett. When Lucy gets a minor cold her Dad and I are terrified that she will get pneumonia which could turn very serious for her very quickly. And like I said, I do get upset when people ask over and over if there's a cure yet, but I also understand that they are worried for her health, and her future, just like we are. Feelings about conditions can be tricky, but I always believe that each individual has the right to their own feelings and their own opinions, and the right to share them. So, thank you again for sharing! Take care!