The Good Side of a Monster

When a life altering even happens, such as finding out your child has Rett Syndrome, it can be somewhat hard to find the good in it. Had I been asked 2 years ago to name 10 positive things about Rett Syndrome and my daughter, I would have laughed. In my mind, at the time, there was no good. It isn't just about finding the good in a sad event...It's about finding the good in a monster...and it is there...

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.

Rett Syndrome has brought out a side of me that I didn't know exited. It has brought out a leadership side of me that I am learning to embrace. Through my own experiences, I am learning to give other parents the power. Rett Syndrome has changed my life for the better.



I have a lot of ideas running through my head for topics throughout the month. My husband has agreed to do a piece at some point, giving everyone a father's perspective on Rett Syndrome. This should be a great month of reflections on Rett Syndrome and our lives. I am opening up to my readers, and if there are any questions or topics you would like me to reflect on, please let me know.