Last year in October, I wrote a quite long post about Rett Syndrome and what it meant it our life. It was really a story of Caitlyn. There is no point in repeating all of that this year, you can go back and read it to refresh your memory, if you'd like. This year let me just say a little about our last 12 months in the world of "Rett." (I promise it wont be as long.)
Today Caitlyn started an extended day program at school. On Monday, Tuesday and Wednesday she will go to school from 8:45-1:45. Her diagnosis is the only reason she gets this extra education. In our district the extended day program is specifically for kids on the Autism Spectrum, and Rett Syndrome still remains on that list. We take what we can get in the education department.
It has been nearly 2 years since we first heard the words "Rett Syndrome." It still feels soooo new to me. Sometime over the summer it clicked in my head that we weren't the very last family to get a diagnosis of Rett Syndrome. It occurred to me that other families may be expecting that I can offer them some support and that they may be encouraged by my strength. I can do anything in my power to offer all the support I can, but between you and me, don't be encouraged by my strength. I still cry at night, it still breaks my heart to see typical 4 yr olds, I still secretly dream that there is nothing wrong...Up until recently I still held onto hope that someone made a mistake. The truth is, I got the results in the mail, and Caitlyn does indeed have Rett Syndrome, a mutation of 901insAC to be exact. So, My daughter has Rett Syndrome...It only took me a year and a half to let go of the dream of someones error...Now, I can begin my road to acceptance. If you are new to Rett syndrome, learn more about it here.
This year, how about if you have read this, you post a comment saying something...Tell me what Rett Syndrome is in your life, and how you came to know about it. If you are a fellow Rett parent, hug your child, and spread the word!!
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3 comments:
You have NO IDEA how much you mean to me. In my eyes you are a veteran to RETT. To be honest the real "veterans" with older girls are dealing with WAY different things (as I have learned on RETT NETT) Moms like you are my source of strength, encouragement. You allow me to feel not so alone in this whole rett thing. You can do it, I can do it too! I now have 4 months under my belt, there are days that it feels like YEARS and days that it feels like I JUST got "the call."
I can relate to the "maybe it is a mistake" comment as I secretly feel the same way! My latest reoccurring dream is that Brooklyn and I are sitting in her room on her floor chatting. Talking about everything.It feels so real. I wake up SO HAPPY only to be hit with the reality that she can't tell me anything. UGH.
I love her more than life itself as I know you love Caitlyn the same way!!
Rebecca,
See? I told you you had a special place "the the Rett chain!"
You are a wonderful mother, an excellent advocate, tireless in an exhausting situation (a marvel in my eyes!)...look how those nasty words "Rett syndrome" have strengthened you and Eric!
While the sting of newness goes away, I don't think we ever forget the moment of diagnosis. I recall it as vividly now after 10 years as when it was fresh...could it be from replaying it so many times over and over in our heads? But it has taken on less importance than the importance of what we live with day to day, of what is possible...
I guess that will be my focus this month...what is possible with Rett syndrome? So much...we live in exciting times. I wish they could lead to more that helps our girls, but still, there is so much more for then than at any other time in history...
Hugs, Rose-Marie
my precious girl, kacie, is 25 yrs old. we learned of rett when she was around 12-13 yrs old. we live in a very small community away from any major city or medical support. we have to rely on our local drs. and we are blessed that they do work dilligently with us when kacie needs medical attention. we have dealt over the yrs with feeding, stomach, sleep, seizure, vision...... issues. it is a process and one you have to stay focused and dedicated to. we have no support services where we live and have to depend on family for any respite. my husband and i have made kacie a priority but also make time for ourselves so we can be healthy caregivers. to all you parents of these special girls, we have all been blessed. here's to a good nights sleep and happy, healthy days.
fayrene bostelmann
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