Today's post is by David Bousson, Leah's Dad
Rightly so, many people proclaim that “People First” wording is the correct thing to do for people with disabilities.
But there’s something different about Rett Syndrome and the families who live with it. We’re a close knit group, and we use Rett Girl, Rett Dad and Rett Mom as terms of endearment (Rett Sibling has never really caught on...). We’d all love to see Rett defeated, and we all know that these girls are so much more than their disabilities. Rett Girl has a certain strength to it. These girls put up with an astounding amount of difficulty in their lives, and yet their smiles continue to melt the hearts of those who take the time to receive them.
When you join the Rett club, it’s painful. These girls go through so much that we can’t even comprehend. You watch this new person progress and then regress. They are crying, and not understanding what is happening to them. Doctors are consulted, often to the frustration of the parents, as Rett is not widely known (no, it's not Tourette's).
Your marriage will be tested, don’t doubt that for one minute. It’s hard. It changes the lives of everyone in the family. I wish I could say that it made me pull it together and become “Captain Awesome Dad,” tirelessly advocating and seeking out every opportunity to make the lives of those in my family better! But it’s been a struggle, and I have, in some ways given up. The best way to describe it is "weary." I only do what has to be done to make it through the day. Ambition and I have parted ways more often than not. Leah is 10, and I am just barely getting to a point where I feel I know who I am again.
My wife, Tammy, is amazing. She has been there for Leah at every turn, putting aside her needs and wants to care for Leah's every need. She keeps this family running, and I laugh when someone asks me if my wife works or stays home. She has made her career caring for Leah (she should have her doctorate in "Leah Studies" by now). I am continually fascinated and amazed by how she continues to do all she does. She deserves so much more than she often gets. But she is weary as well.
All things considered, things are going pretty well. Leah has had two surgeries in the last 8 months, yes, but she is recovering. The smiles are returning once again. She's a charmer, with those beautiful eyes and that beaming smile. It takes a commitment on your part to find them at times, but once she see's that you're worthy*, they show up pretty quickly. (*Worthy: Being willing to wait for her to process your presence, and to let her body finally react.)
We have a thing we do most every morning, when I say goodbye to her and go to work. It's called a bear hug. I grab her arms and wrap them around my neck while she's lying in bed, and make a growl-y bear sound as I give her kisses on her cheek and neck. Because of her hand wringing (typical in Rett), she then clasps her hands together, resulting in a hug on her part. She loves it, and I often feel her tightening her grip around my neck in the closest thing to a hug she can muster. But best of all is what happens on her good days. She growls back. And smiles. And laughs.
Being a Rett Dad is not easy, but I'll be the first to admit that I've got it pretty well off (again, all things considered). Divorce rates among families with disabled kids are really high. I've been blessed with my family, and I try not to take that for granted. I've had a hard time coming to terms with Leah and Rett. I have found many other things to do, when I should be playing with my kids. I feel guilty when I spend more time with my son Riley, and I find myself wondering what to do with Leah.
I know what I need to be doing, which is just spending time with her. Talking with her, reading books to her, walking with her, playing with her. But often I don't. It's ridiculous, but it happens. There are only so many times I can try to do something with her, only to have something happen where she's in pain, or overly anxious, etc., etc., and then we have to cut the plan short.
It's hard to explain. I just don't want to set my family up for another failed event. And it's not her fault. Rett Syndrome has taken this away, and I hate it for that. But I love the kid. It's a vicious cycle. Don't get me wrong, we still do things, and have fun. But that is always a lingering fear whenever we go somewhere. It's an element of stress that never leaves.
Riley, my 12-year-old son, has a heart for his sister, and for those like her. He doesn't even think twice about playing with the kiddos who are a little (or a lot) different. He just jumps right in there and starts playing. And it's so wonderful seeing the eyes light up as they are playing with him because he "gets" them. There are many days when we can't go out and do regular family things with him, and sometimes he really gets upset. But life goes on for him and for all of us, and we do what we can.
When you watch your close friends describe what is going on in their "normal" little girls' lives, you hurt inside (Please though, rejoice in those stories of your kids, and keep posting them. I do indeed want to hear them, they are truly wonderful). The beautiful song by Steven Curtis Chapman called "Cinderella" is especially painful. Many a tear has been shed during that one. Your little girl won't do a lot of things, and you can get lost in the list of what she won't do when you start to think about them.
But here's the thing. Your perspective needs to change. Focus on what she can do. Search for every little thing that she does on her own, and encourage it. Make a big deal about it. Those things are there, but they can be so difficult to find sometimes.
Another favorite song, this one written by Rich Mullins, is called "Hold me Jesus" It's a beautiful song, written about those moments where you just need someone bigger than you and your situation to be there for you, and to hold you.
I need to be that for both Leah and Riley, and that song serves as a nice reminder. Rett may have entered our lives, and it has caused it's fair share of troubles, but we have to do what we can to move through it, and give these kids the childhood they deserve.
Dora and headphones
Rett Syndrome has a soundtrack unique to itself. These girls can't talk, so they have to express their needs in other ways. One of the more common sounds in our house is "The Grinding Of The Teeth." If you've never heard this done on a constant basis for days on end, be thankful.
And then there is the whining, when something hurts or something needs to be taken care of. I won't even try to describe it. Suffice it to say that it completely robs you of your ability to think. Security companies should study it and turn it into an alarm. It's that effective at stunning a person.
We've quickly learned to run through a basic troubleshooting list: Are you hungry? Is it gas bubbles in the stomach? A diaper that needs changing? A change of scenery? The wrong Dora? Does your back hurt? What you don't think to ask is: Is there an eyelash in your eye? Does your scalp itch? (Sorry if I just made your scalp itch...) Did you want to go do that thing we promised we'd do today, but forgot since we brought it up yesterday? A leg cramp? Do you miss someone? Do you want to tell someone something that's on your mind?
Yeah, it gets overwhelming. All the while, she's crying or whining because that's the only way to express the need. If all else fails, we resort to Dora and a pair of headphones. The headphones are for me because sometimes nothing fixes it, and I have to block it out to hang on to a few shreds of sanity.
How to help
So, now that you are thoroughly depressed... sorry. But here's the thing. All of you reading this can make a difference. Or maybe you have already.
Learn about Rett Syndrome. Spread the word, donate money to research. Participate in a fundraiser. Raise money. Donate money. Yeah, I said that twice. It's that important.
Scientists believe that they can reverse Rett Syndrome, and they are trying each and every day to make that a reality. But they can only do that with money. So give what you can, and continue to do so whenever possible. Because these kids depend on it. And on you.
Be prepared for me to keep throwing donation opportunities onto Facebook, and please follow those links I post about Rett Syndrome, so that you can follow the amazing progress. I know you are doing so. I hear you telling me your stories: about the woman you met at a race who was wearing a Run for Rett shirt, and you stopped and talked to her. I hear you tell me about what you learned about Rett. And I enjoy the moment when you read the Purple Card I just handed you (ask me for one!), and learn one more thing you didn't know about Rett. Those moments mean a lot.
(Here's her Girl Power page: http://girls.
girlpower2cure.org/leahb. Did I mention donations? You can do that through her page...)
Thank you for your time, it means a lot to all of us. With your help, there will be a cure.