The Rett Clinic, not what I expected


Last Friday we made the brave journey all the way to Oakland to Katie’s Clinic for Rett Syndrome. So maybe it wasn’t that harrowing of a drive, but I really don’t like roads with more than two lanes and this trip involved lots of freeways. For this journey I was blessed to have Kat come with us. I love Kat for a lot of reasons, I might at some point just blog about that, but for now, here is a short list. 1. She accidentally taught Chloe to say ‘dude’ just by modeling it. 2. She wears jeans a t-shirt and either vans or cons, just like me. 3. If she were to be a character from a book it would be Amelia Bedelia 4. She has no other affiliation with the special needs world other than Claire, but she loves her and treats her like the normal little girl she is. 5. It is impossible not to have fun when she is around. And yes, that is the short list. Anyway, we got there and I got right to embarrassing myself. While Claire and Katie (as in Katie’s clinic, she is such a cool girl!) hung out I went up to the desk to ask if I needed to fill out forms, sign something and offer insurance cards. Turns out the lady sitting there was the neurologist, not the receptionist, oopsie! I honestly don’t remember much of what was said during our appointment with her, she started with how old were you when you had Claire and my brain went numb from there on. I do know that we are looking into booking ourselves a lovely suite at LPCH for a long EEG and hope to get the activity on the monitor before any decisions are made. As soon as we were done with the neurologist we split and went to Fenton’s to meet up with Erica and Nolan. Really and truly, this was the absolute highlight of the day. No, it wasn’t the highlight because the ice cream was so good, although, it was very good. It was a simple text and a small thing that made it. I have known that Erica is a great friend, then as we planned this a week before she offered to get there early and save a table so we wouldn’t have to wait. As we drove there, yes, again I was running late, she texted me and asked if she could order food for the girls. I know it sounds really cheesy, but it was then that I thought to myself just how great my life is. I have the BEST friends. We got there and again, I was humbled by a small thing, Kat sat between the girls. Restaurant etiquette states that the point man be strategically seated between the two children and the wing man on the end. With Kat running the show, I was not only able to chat with Erica, I even got to eat while my food was hot, amazing! Chloe and Nolan did there typical super cute kid stuff, Claire ate an entire bowl of ice cream and we shared a lot of laughs, it was great!!! We went back late, but with such such a lightness in my heart, it was great! The second half of the appointments was about 4 hours. We saw a lot of people who all seemed to share the same opinion, Claire is doing great! I guess my work with her is not done for now, rather keep it up, but we just have to maintain. While that really is a best case scenario, it feels like I am being asked to drive across the country at the exact same speed with no cruise control to keep the bomb from going off. Keep it up, for longer, um, I think I can, I think I can… but with friends like this, it really isn’t a question, I know that they will be with me for the drive and if I swerve off the road or the bomb blows up, they will be there with me through that too. All that to say, the doctors, not all that exciting, but I have some really great friends and I am very grateful for.

7 thoughts on “The Rett Clinic, not what I expected

  1. ok, its reading stuff like this that makes the question “what is life all about?” answerable. amidst tragedy galore and just life being hard I sometimes wonder. but this is what its about. this.
    xxoo

  2. I love that you and Erica are so close and can get through this together, amazing friendship! Great news that Claire is doing so well, although it is not shocking to me with you as her Mommy 🙂

  3. Thank you for writing this post! It is beautiful. I am so glad the two of you have each other! I just want to reach through this screen and hug you all!
    I know distance seperates most of us but know that you (and all of the vegas crew) have gotten me through some tough spots!
    Love ys girl!

  4. I think it's meeting the families that make it so worth it for me to go to the Rett Syndrome Natural History Study. That was the first time I went somewhere and people actually accepted us. The first time I wasn't the expert in the room on Rett Syndrome. The first time I could ask the stream of questions tumbling about in my brain and get some answers.

    So glad you got to go!

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