These are my thoughts, others may have different opinions. You’ll find that a LOT! We don’t all agree, but that’s ok. So many families, religions, cultures etc. how could we? But for me this is what I would tell you.
- It’s going to hurt. For a long time. When you least expect it. When you think you’ve got it under control, something will bring up the pain you thought you got over or buried. It’s going to happen and no matter how old your child gets, it’s ok to cry about it, be sad about it, be angry about it. In plain language Rett syndrome sucks. And, on a personal note, I’m really sorry your child has it.
- Your child is going to scream. It may last a little while or it may go on for years. And you will have to search for a solution. This differs for EVERYONE. Some use music or water or meds or natural solutions, behavioral therapy, earplugs, a combination..It’s going to be almost more than you can handle at times, but you’ll do it! Be an advocate, don’t let the doctors sweep it under the rug. THEY REALLY HAVE NO IDEA about how screaming truly affects every aspect of life, for everyone. But we, other Rett families do, so always remember you are NOT alone.
- It is not all hard. It’s not. It seems like it will always be hard. But remember, this is all new to you. It’s like the picture above…at first you’re like what the hell does it all mean??? How can I make sense out of all the different things, the different sections I have to work with. It’s like each musical section is a different aspect- medication, behaviors, therapy, surgeries, GI issues, scoliosis, braces for legs, trying not to lose hand use, trying to keep walking- and each little mark means…go slower here… faster here…REST HERE…You’ll get a routine down, you’ll figure out what works and doesn’t work. It will all take a while, nothing worthwhile comes easy, you know. It all takes practice. Even Pavoratti couldn’t always sing. Even he needed to practice to become great. (We’ll leave out Mario Lanza here, he was great from the beginning, we don’t want to use him as an example)
- You’re going to be tired. There will be times you’re so tired you have no idea how you’ll make it through the day. But, you will. Ask for help. Take care of yourself. Rest whenever you can. Be an advocate for yourself, too. A lot of parents are on anti-anxiety/depression medication, if you need it, you need it. This is not an easy situation and it’s not going away either.
- Pooping will become the most important thing in your day. It will frustrate you, make you angry, make you cry for your child and make you cheer. It will be a fact of life. Celebrate it. We will all throw virtual confetti in the air for you when your child poops. It will be messy and you won’t even care. It will be the bane of your existence and at times your greatest joy. It will help you appreciate the little things in life. Go with it. Brag about it. We get it.
- Every little gain will be a miracle.
- Every setback will find you with hundreds of families willing to support you online, give you tips, feedback, hope, sympathy, UNDERSTANDING.
- Advancement in technology is giving our children ways to communicate that was not possible before. Advocate, research. Eye gaze technology has given a voice to some of our children and with the passage of new law, it should be easier to get.
- The thing I want to tell you most of all is that there is HOPE. Blessed, sacred Hope. So many clinical trials going on, new developments all the time now. We are in the Age of Discovery when it comes to Rett. It is being attacked on all sides by different countries. Keep up to date on clinical trials through Rettsyndrome.org. Be encouraged. Be hopeful. Don’t give up.
Reach out to your regional representatives, reach out on forums, there is no question you have that someone else doesn’t have but is too nervous to ask and there is no situation that someone hasn’t already gone through or have information about. But most of all, our children are more than Rett syndrome. They have personalities, they are unique and wonderful in their own ways. Don’t let others drag you down, us other Rett families get it. We’re here for you. Stay strong. And don’t forget to dance to the music and rhythm you write.