It’s been a while since I’ve had the time and mental stability to write. The funniest thing happened in the weeks after my last post, normal met wild and I just went with it. In case you missed it, I closed my last post Normal with this:
I used to wonder how it would feel to be able to give Claire something that could help, even if it was the slightest improvement. Now I know. What I haven’t figured out yet is how to go on with that knowledge. Truly, living in normal is the biggest adventure and I don’t feel prepared, you never are.
I wasn’t prepared, but it happened. As a result of being able to take the study drug outside of the study, Claire got a little better. Don’t get me wrong, she isn’t walking and talking, this isn’t a cure. But she breathes better now and that small detail has allowed our family margin we didn’t know we needed. We didn’t realize that we were all held captive, waiting for each next breath, never knowing when it would stop. It wasn’t until we were free that we saw how our entire life revolved around her every breath.
This has been a year of freedom and at first that was scary but as I look back, I am in awe at how truly beautiful and amazing it has all been. We took our first vacation longer than 3 nights. We traveled to Arizona to be with family for Christmas and down to San Diego to check out our new home. Yes, our wild-normal somehow has us moving just over 400 miles away.
I knew going into 2016 that things that I couldn’t even imagine would happen. In fact, in my first post of the year I wrote:
I’m a little scared for 2016. It’s bizarre to step forward realizing how clueless you are, but that’s what I’ve got to do, so here goes!
I know it was a very difficult year on a lot of levels for many people. It was a difficult year in many respects for us. But it was also the year that our gamble (participating in the IGF-1 study) paid off and I hope to remember that forever.
As a result we got to have more fun with Claire and Chloe. We lived out of a space knowing that you can dream big and it can come true. I don’t think that would have happened without all the trips to Boston, that was our pivot. Going to Boston changed us from a family that was desperate to a family that tried.
We are still desperate, but we are also grateful for the little bit more that we have. I long to hear Claire speak but I can now revel in the sound of her laughs. I can sleep at night knowing I tried.
I know that clinical research isn’t for everyone. There are so many hard things to do in life and it most often doesn’t involve medical care. If there is something that you have dreamed about, I beg you, go for it. The process might nearly break you like it did me, but when you make it through it is awesome.
Thank you for taking the time to read my ramblings, I really appreciate that I get to connect to people through this and I intend to write more in the near future. I hope that the new year brings dreams for you to chase and that as you scrape your knees and get banged up along the way people near you can love you and lift you back up so you can keep on. I wish you wild-normal that is so beautiful it takes your breath away, cheers to that!