Three years ago today the phone rang. I saw that it was LPCH and figured it was somebody to either set up an appointment or remind me of one that we had. You can imagine my surprise when it was Dr. Suttcliffe. She was calling to let me know that the test had come back for Rett Syndrome and it was positive. WHAT?!?!?!?!!!!! You see, three days earlier I had sat in our neurologist office, it wasn’t that big of a visit. She had told me that the test for Rett Syndrome was negative and that Claire seemed to be doing well, so we could come back in a year unless we needed to see her about something urgently. So what did I do, what any parent would do, call another specialist for a third opinion. We were scheduled to see genetics in a few weeks, so I called them to be a tie breaker. When they called there was all sorts of apologizing for the mistake, but it was true. She had Rett Syndrome, we could stop searching for the problem. At this point, I had no idea what Rett Syndrome was, none. I had taken the approach of not looking anything up until we had a conclusive diagnosis. So I googled it. The first thing that popped up was the International Rett Syndrome Foundation. I went to their website and looked around a little bit. I remember feeling so deeply relieved, this didn’t seem that bad! I read about how they couldn’t toilet independently. I thought it wouldn’t be a big deal to help her unbutton her pants, maybe we could just go elastic. I had no idea that she would not have the ability to walk in there and sit down on her own, I figured it was coming. The next morning I went to Bible study and shared how overjoyed (DENIAL) I was that the search was over, we had a diagnosis. One of the ladies in our group told me that there was a story about it on the front page of the paper. I thought that surely she was confused. This is super rare, not headlines in a small town rare. I was wrong, there it was Madelyn’s Dream. There was a whole gala for Rett Syndrome that week, 8 minutes from our home. We wouldn’t be able to go for the dinner, so I emailed the lady organizing it so ask if we could attend without paying if we left before dinner. I think my phone rang 30 seconds later. We talked for almost an hour. Later in the week I got a call from Paige, who had a daughter Katie, as in Katie’s Clinic, I wasn’t alone. Through the whole thing, every day of the last three years, I have been in awe of the people that I have crossed paths with at just the right time. I have learned a lot about the “system” and how to be in it but not defined by it. Claire has taught me to slow down, to notice the smallest muscle movement when she is trying to help. It has been a very long three years and I am very tired. But I am still strong, not because I am some sort of freaky superhero who feels no pain and advocates relentlessly. It is because I have started to feel the pain, because I know that I will never be enough and that I am dependent on my creator. I know that He has put each of you in my life to help me through this storm. As much as I wish the phone never rang 3 years ago and that it was just environmental and Claire was in regular ed now, I am so deeply honored to have met each of you, my rett family that I am on this journey with. I love you all so very much.

3 thoughts on “Perspective

  1. mj says:

    ah, nuts. i thought i was done crying for the day. i guess not. thanks for this post.

    p.s. i still think you should go elastic. great idea. 🙂

  2. sniff, sniff…seriously. I'm with Erica, let's start looking for our celebration location soon because I know in my heart that the day for our daughter's is just around the corner! I couldn't do this without you!

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