Living in Rettland

One of the things that still takes me by surprise are the giant waves of emotion that come out of nowhere. It’s often the littlest things like two sisters playing together when suddenly a wave of grief completely envelops me. Today, I experienced something on a whole new level, unexpected joy, joy that flooded my body until I cried and shook.

I knew that the package was coming but I didn’t realize how desperate I was for it until the FedEx truck pulled up to the front of the house, well the first one, which turned out to be the new ottoman. The second truck came just a few minutes later, this one with the package I had been waiting over 8 years for. My legs wobbled as I carried the light box into the house and I tried to catch my breath. This is what we had been working so hard for. 7 trips to Boston, 45 nights in hotel, 560 injections of a mystery substance and now we have a box from the pharmacy.

When we signed up for the trial, we were told that there would be a provision to have the opportunity to receive the drug upon completion. Today that happened. Up until this point we have been blind, unsure of what we were giving Claire. Up until today all of the shots were an exercise in research, not a potential treatment.

As I unpacked the box I recalled how desperately I wanted something to give Claire in the early days, anything. The worst part about being diagnosed with Rett syndrome was that there was nothing left to do, there was no plan to get her better. I don’t know what these shots will do for Claire but it feels amazing to have something that is thought to help, amazing.

This excellent progress for our family comes with one major drawback. Due to the ongoing nature of the trial, I will no longer be discussing Claire and life with Claire publicly. I don’t want people out there trying to figure out what the drug is or is not doing by gathering info from bits and pieces on the internet. It is incredibly important because the trial is blinded and we do not want to compromise that in any way.

I am putting this out there because I want you to know that things are happening, just very quietly. Progress is being made on the research front for Rett syndrome and now is the time that we all need to pull together and double down and chase it until trials are done and we can all talk about how the drug is helping our children and learn different rehab approaches from each other. That day is coming, it’s just a matter of time.

I have been so blessed by those of you that have joined me here. That you take the time to read my words means so much to me. I am grateful for those of you that I have been fortunate enough to connect with. I will miss this dialogue that centered around Claire but for now, we will just go on, living in Rettland as normal people do.

One last thought, thank you, again, to anyone who has ever contributed to any of the world-changing Rett syndrome organizations. If it weren’t for the families who have fought for every inch for the last 30 years, I wouldn’t be organizing injection supplies tonight. Thank you. 15

12 thoughts on “Living in Rettland

  1. Really grateful with you for answered prayers and hope for the future. Although I do hope you will continue writing about life with Claire and what you are learning about motherhood and life etc because it’s really inspiring and encouraging to us all. You have no idea the impact you make with your life Colleen. xoxo

  2. Orietta says:

    I’ll miss your posts but I couldn’t be happier. We’ll be waiting patiently but anxiously. A big hug to Claire from her Rett sister Alessia in Rome.

  3. Janelle says:

    I don’t know what the future holds. Too many unknowns and just contemplating things seems to overwhelm. But reading this makes me think whatever our little raegan- only 3 years old – will face….things and will be better bc of the progress going on now. Thanks for sharing..

    1. It’s families like yours that kept us going when it was hard. I don’t know what kind of difference this will make for Claire but I know there will be more options for the younger girls and that makes it all worth it. xx

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