Two Days In

As I sit down tonight I struggle to say much more than we made it through the first two days. It has been exhausting. Yesterday was cold and blowing ice so we stayed in our hotel room while we recovered from our red-eye across the country. It was very hard, it was very quiet. The quiet pierced me more than it typically does, perhaps because I was insanely tired. It magnified why exactly we are here. At home, when Chloe is playing with Claire or at school among friends that love her, I see the problem less. Here, just the two of us it is blatantly clear and it is terrifying. I am reminded of how fragile Claire is and how restricted she is, despite our efforts to make her life awesome, and it is.

After sobbing while I fed her dinner last night and apologizing for being a wreck we both attempted to sleep. While it worked better than it did in the airplane the improvement was very slight. I woke up with a raging headache. By mid day my back and shoulders were yelling at me. It felt like somebody was sticking their thumbs through the back of my skull and attempting to push my brain out my eyes. I slowly stretched and drank as much water as I could as I suspect dehydration was at the root of this. Through it all, Claire was a champ. She was gracious with me and clear in her requests. She really wanted clam chowder and we had agreed to not eat dinner in the room each night, so I agreed.

Claire was happy that we only had 5 minutes left when this was taken. Sometimes world changing is boring work.
Claire was happy that we only had 5 minutes left when this was taken. Sometimes world changing is boring work.

We found a nice big mall to walk around in. Claire picked out a few items for an in room spa night later in the week and some aromatherpy for our pillows in an effort to get better sleep. We found a place with Chowda and sat down to eat. That is when I found out that Chloe needed to be picked up from school because she has a fever. Claire endured me being on the phone during our special dinner out (my soul cringes at this) and as soon as we were done we headed back to the hotel as we were both exhausted.

On our way back I made my first wrong turn of the trip and had to make some tricky maneuvers to fix it just as Chloe called, so sad, sick and missing her mommy. My headache raged as we drove into the sun. Jared called and I broke down (poor guy, he gets most of my crazy) Chloe’s sick, I feel horrible, Claire still has Rett Syndrome and all I want is for our little family to be together. He reassured me and we got back to the hotel without further incident.

I gathered up Claire and our bags and stumbled into the lobby where the lady at the front desk gasped as she saw me, ‘hold on’ she called out. Ugh, I turn around and there are flowers for us. Captain Awesome managed to have flowers waiting for me less than 5 minutes after I completely lost it and nearly gave up. The perfect flowers too, the ones from our wedding and a butterfly, a symbol of strength that I have been holding on to. I am so blessed to get to do this with Jared’s support, I really couldn’t do it otherwise.

Traveling for clinical trials is very hard. Physically, emotionally, financially, psychologically, it is hard on every level. It is not a vacation even though we will work hard to lace fun things through out the process. One of the coolest things about our Rett family is how supportive you all are. Keep it up, thank you for the encouragement that you are sending our way. Let’s make a point to remember that every family in a clinical trial is walking with an amazingly heavy load on their back. It is an honor to get to be doing this but it also a very difficult process.

4 thoughts on “Two Days In

  1. maren says:

    I wish so badly we still lived in New Hampshire. We would come and hang out with you!! Sending hugs from the Midwest nonetheless. Love you guys.

  2. Sean says:

    Hi Guys
    Your storey touched my heart. Your doing so well with limited help. To be perfectly honest I don’t even know what rett disease is but I do know these few facts. 4 years ago I had a severe waterskiing accident that basically if I didn’t have such good muscle mass around my neck would have left me as a quadrapegic….even at the “unofficial” approval and encouragement of the best neurosurgeon in Australia…he said to exhaust every possible option prior to surgery. Long story short and post 2 major spinal operations I’ve finally found something that works IGF1-lr3 & TB500 if you google it I’m sure you’ll get all the info you’ll need for dosages etc…I just hope in some way this info might help. God bless you. Keep up the hard work. And just so you know 2/3 of my boys have severe haemophilia B…not that I’m whinging but just wanted you to know that we all have our crosses to bear in one way or another but just keep plugging away. Cheers Sean

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