Sunday, October 5, 2008

Words of another Rett Mommy......

One of the very first "Rett Moms" that I met online (and then finally met in person at conference this year!!!) is Rebecca. I am sure she has NO idea what her blog meant to me when I found it searching the internet for what "Rett Syndrome" means for my daughter. That was over a year and a half ago. Where does the time go???
I asked her if I could post her words on my blog (and thankfully she agreed) Below is a post she wrote in honor of Rett Syndrome Awareness month.

We often dwell on the BAD parts of Rett Syndrome but in this post she focuses on the good and I want to share them with you.....

The GOOD Things About Rett Syndrome (in no particular order)

1. It is a diagnosis. There are many families out there that are still on the road to find a diagnosis for their child. A friend of mine would respond to people saying "My son has GOK syndrome." (God Only Knows). As much as finding out your child has Rett Syndrome hurts, imagine how much more it would hurt if you were still trying to find an answer. It closes a chapter of the unknown.

2. You learn to celebrate the little things. We clap and cheer just for a little tinkle in the toilet. Sure, all parents get excited when their children become potty trained...But we cheer for each time they go, and they may be 5 before they go the first time! We celebrate food making it into their mouths, even if it will never happen again. We celebrate the little attempts at communication.

3. You learn the true meaning of unconditional love. You will never hear your child say "I hate you!" As they run out of the room. They depend on you for every aspect of their life, and are so in love with you. You can see it in their eyes. That is a love that will NEVER go away!!

4. You develop a compassion for people that isn't anything learned in a book. I admit there was a time when I would feel such pity for people with children who were disabled. It just broke my heart! Yes, it still breaks my heart, but their is no more pity. Now, I see the strength in everything that parents do. I secretly praise them for having the strength to go out. I appreciate people more than I ever have before.

5. You meet the most amazing friends. The Rett Syndrome community is so close knit. We lean on each other in the good times and the bad. We may only see each other once or twice a year, unless we live close. The friendships are lifetime. Tragedy brought us together, but hope and joy keeps us together. Interests change, and your other friends may drift away. The friends I have made as a result of Caitlyn having Rett Syndrome are the most cherished friends I have. We follow each other's girls like they are our own. We help each other keep it together. (Gals, you know who you are.) It isn't just the moms...The Grammy's become our friends to. They follow our girls and love them.

6. You become an expert. Sure, I could go to school and become a doctor, but why spend that amount of time in school, when I already know more than some doctors. I am an expert in the subject of Rett Syndrome. The thing about that is, I can also accept that things are changing, and there is always more to learn.

I can find the good in Rett Syndrome, but that in no way means I like it. It has had some positive effects on my life. It has taught me to slow down. It has showed me appreciate every step I take. I have learned that at the end of the day, when I am exhausted and tired, I know that I did everything I could for that day. I learned not to think about yesterday (unless it involves not having a bm) or tomorrow. I live in the now. I live one day at a time. I have the privilege and responsibility to not only be a caretaker, but also be a voice. We are our children's voice. They have the best advocates they could want.

Thank you again Rebecca!!


Caitlyn said...

gee..those were some deep words...They bring tears to my eyes when I read them on your blog! I'm so glad we met through the blogging world, and then in person...I really hope we see each other in VA, but will understand if you can't make it... :)

abbysworld said...

Very nice. Please tell her thank you.

Cheffie-Mom said...

The two words that came to my mind when I read this post -- Blessings and Faith. Thank you for sharing.

Anonymous said...

Although Owen doesn't have Rett syndrome, I completely resonate with the words that Rebecca wrote! Oh how we praise the very small things in life. Owen has taught me what LIFE is about!

We love your family.
Kelly and boys

Brittney Withers said...

I LOVED that!! I hope you don't mind but I'm going to link people to your Blog so they can read this. Thanks for sharing