I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; but parents of a little girl who struggles through more than any little girl should have to.
Rett Syndrome has clearly progressed for Magnolia. The battle has been nonstop and the stakes seem to keep getting higher. When I look at other families with individuals with Rett Syndrome, I wonder if their lives are the same. Are the stakes getting higher for them or has Rett Syndrome plateaued? It’s hard to know looking at social media. It seems to be individuals with Rett are either in the hospital and very sick or seemingly fine living their daily lives. I know we mostly post our adventures and positive moments. Right now, we squeeze in those moments between all of the other chaos that is happening with her.
For us, we seem to be in a strange place. Magnolia isn’t in the hospital, but life for her isn’t fine. She has been having a plethora of GI issues, her caloric intake is minimal and she most likely is getting a feeding tube in her belly (called a G tube). On top of it all, her seizures that went away for a couple of months are back. She is dealing with it all. She has been more emotional, frustrated and angry throughout a lot of the day; and it’s completely warranted. Life for her right now isn’t great. For the last month, on a weekly basis, we have had to evaluate whether or not we should take her into the Emergency Room. We have had multiple conversations on what her threshold is. We have talked to all of her doctors to figure out what the criteria is for each issue that is happening. Because they are all big issues. Seizures, how many until ER? Or how many days can she go without eating? What if she is still having a couple of Pediasures each day? How long without drinking anything? What if she is just screaming in pain? So many conversations for so many issues. It may seem like a no brainer to take her into the hospital should any of these issues arise in your typical child. But this is a daily occurrence. It hasn’treally felt like an emergency. So we make doctor’s appointments, suffer through the weeks leading up to those appointments. We live in the unknown until we see a doctor, and even then its a guessing game with the doctor of what to do.
I’m angry that we spend our lives maintaining and managing her care and pain because life is that difficult for her. I’m angry that I have a bag packed with clothes and supplies for her and I, just in case. I’m angry that I haven’t been able to look into camps for her because everyday has been difficult. I’m angry that with every hill we climb, there’s another hill on the other side. It’s not fair for her. At some point, there has to be a break for her. OK. I’m a little bit sad about it too.
Trying to live our best lives in the hardest of moments.
Today we were sitting at our dining table. Maggie wasn’t eating, so we had been sitting there for awhile. Gray had finished his snack, had played with some puzzles and then made his way back to the table. He looks at me and says, “I want Mags to play more.”
My first thought was, “AAAHHH!”
What do I say to that? He is 2 ½ years old and he wants his sister to play. I think we have been doing a pretty good job of having both of our kids play together, helping Maggie play with him. But in that moment all I could think of was, “Crap! Me too! I want her to play with you too.” And worse, she would love to play with you too.
Maggie, apparently, had the exact same thought as me, interjecting on her Tobii with an, “AAAHHH!” herself. Not kidding. She said AAAHHH!
Grayden responds, “Mags No Aaahhh!”
Gray stood next to Maggie’s chair as she would look at her computer to say AAAHHH!! He would immediately turn to say to her “No AAAHHH! Mags, No AAAHHH!! This happened at least 5 times. It was amazing. It was their first argument, or tiff, as you will.
Honestly at that moment, I was also annoyed that she couldn’t play because of Rett. Gray was obviously annoyed and Mags made it known that she was annoyed.
Honestly, he is an awesome little kid and little brother to Mags. We were going swimming today and the only thing he wanted was for Mags to wear floaties because she might not be safe. I love that he is thinking about safety but I might have to rethink how to communicate her safety around him, so he isn’t stressed.
He is two and a half and he gets it. He knows she can’t play as much, he knows she isn’t safe while we swim and he wants to protect her. He is a great brother.
We are a team. We have our moments, but we are in this together, even on the frustrating days. We spend a lot of time focusing on what Maggie needs. We try to balance Gray’s life, but the truth is it’s not balanced. His sister has Rett Syndrome, she needs extra help. Luckily, he’s there to help her.
Our son Gray just turned 2 years old. He is energetic, talkative, smart, loves his sister and a blast. When Maggie turned 2 years old she was energetic, smart, loved her mommy and daddy, she was a blast and she was talking, some. Other than some delays, Rett hadn’t taken over. It was after her second birthday, she was about 28 months old, sensory issues took over, speech slowed and she would look off in a daze. Its been five years since then. Rett has completely taken over her body, she fights it everyday.
Gray just had his school pics and I found Maggie’s school pics at the same age. My first reaction was, how cute are these kiddos. Then I realized her world came crashing down, just a few months later. What a difference a few months makes. I know he will achieve a lot of milestones that Maggie missed or lost. I’ve been told by other parents, it is always a bag of mixed emotions.
My heart is happy, my heart is heavy, my heart is broken, my heart is mending. I’m doing my best.
Look at these two cuties….
We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year. She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain back her strength, balance and walking ability, being at home has allowed her to focus on therapy and helped her get back to her old self. Of course, Rett is progressive, so now we have new symptoms she is dealing with on a daily basis. Her breathing, seizures, drooling, anxiety and some balance issues seem to be hindering her the most right now. So sending her to a classroom is very stressful for everyone involved.
Right now, Maggie has school at home through an online classroom. Shelly assists her during class, they really have become quite the duo. Of course, AJ stays up late every night to program her eyegaze computer with the next day’s classwork, so that Maggie can be as involved as possible.
So that is what we’ve been doing. It’s been working, we’ve been pleased by her progress. Then a few months ago, the school district called and offered Maggie to attend a satellite campus for homeschooled kids. At first we said, no. Then we realized Maggie is doing well, we should try it.
So on April 11, AJ took Maggie to school, Shelly met them there to be her aide. AJ introduced her to the classroom of kids. He explained Rett syndrome and discussed her breathing issues. A little boy in the class immediately says to AJ, I think she is having problems breathing because it;s her first day. AJ said, that might be. The way I imagine it, a single tear of joyful innocence rolled down his cheek as he said it. After a few weeks, we’re convinced Maggie loves it as she screams joyfully and skips as she pulls AJ to the classroom. Shelly is with her, so she is safe and is able to communicate. There was even a little girl who went up to Maggie and said, “Maggie, you can be my friend.” And when I heard that, my heart exploded a few times.
Turns out this is the perfect situation for Maggie right now. Two days a week she goes to a satellite campus, then to therapy. The other three days, she is homeschooled and also goes to therapy. It allows her flexibility, socialization, and the security and comforts of home. We are hopeful we can continue her education this way, for awhile. From the way it seems, she is as well.
I wrote this post last week and this week is her final week in the class for the school year, but she is unable to go. Maggie was has been hospitalized twice in the last week and will be resting at home this week. At least there is hope for next year. We know we like this program, we are hopeful that it works out for her.
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body temperature. The last one was a new discovery. She’s always run a little hot, but so have I. So, whenever I’m warm, I know she’s miserable. We learned the hard way that heat is a real problem watching her face get flushed, her grow lethargic, unwilling to eat much, even her favorite foods, and even, on occasion, vomit. Not fun. She’s also taken to biting and hitting in frustration. Mostly me. But that doesn’t make it better. I’m constantly terrified that she’s going to bite someone else, mostly because she doesn’t just bite, she locks her jaw and you have to pry open her mouth with your hand.
But while the first day was brutal, the next two days were a blast.
We spent two straight days jockeying between swimming and air conditioning which, from what I can tell, is really all there is to do in Palm Springs.
We went with our favorite travel companions, Leslie, Eric and their 2 year old son, Ollie. They’re just doing what friends do by dragging us along on these adventures, and it’s appreciated more than we can show while we’re with them. Ollie, just learning to speak himself, is great with Maggie and wants to play with her regardless of how many times she rebuffs his efforts. And Leslie and Eric have always been quick to get down to Maggie’s level, give her a good hard squeeze to give her some sensory input, and speak a little slower than normal so Maggie can follow along. It shows that they’ve read up on Rett and are doing everything they can for her. And it’s obvious how much Maggie appreciates it. No matter how overheated she may be.
For the longest time it has felt like we were losing the battle with hand function. Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis. We spend most of everyday, watching what she can do, discussing what we saw that day and figuring out ways to help her keep functionality.
See, her constant arm flapping and hand wringing gets in the way of her using her hands as appropriately as she would want. We keep getting reminded that she’s cognitively intact, not just by doctors, but by her as well. We know she understands everything, just her body doesn’t always listen to her brain.
When we went to see the neurologist he had told us that eventually most things will stabilize and even start to improve if we work hard enough. While that’s been true of a lot of things, her hands haven’t quite made it there.
It seems like recently she had stopped holding things in her right hand and would drop whatever she could grab with it. She’s been wringing it incessantly for a number of months now, so maybe it just hurts. But this is a battle we really don’t want to lose. Things just get more difficult when you can’t use a hand. Other than weight bearing exercises and any fine motor activity that she will actually let us force her to do, there’s not much we can do to help, and there are only so many pushups you can make a 3 year old do. The answer is 64 if you were curious.
As Jenny mentioned in her post, I’ve been trying my hardest to invent something that could help her. Splints, velcro, weights. Anything I could think of. When we finally got a prescribed splint, I thought that was going to be the answer. But it limits her use so severely, I’ve been afraid to even use it. The whole fight has been frustrating to say the least. Right now she hits herself in the face constantly, and bracing her arm has its own limitations. It’s neurological – her brain is just stuck in this pattern and no doctors or therapists have been able to crack the code yet.
Then this weekend happened.
She has not been able to use two hands together like this since she was about a year and half old. And she was doing it consistently this weekend. It’s hard to express how awesome this is. A majority of the girls with Rett have limited, if any, functional hand use. It seemed Maggie was headed that way. And she still might be. But, at least for this weekend, she decided to head in the other direction.
Hopefully this means we’ve stabilized and will start to see some improvement now. But if not; if it’s going to continue to fall off, I’ll have this little nugget of wisdom from my dad to fall back on – “if that’s the worst of it, it’s not that bad.” For a man who can only use one of his hands and probably voted for Bob Dole, another man who could only use one hand, it’s more of his typically sage advice.
Every time I feel like we’re losing a battle, I’m reminded of George Washington, who, though, he lost more battles than he won, always lived to fight another battle. And, just like him, we’re going to win this war.
This trip to Houston was a little different than the last one. At the last one we were nervous and everything turned out as good as could be expected. This time we weren’t nervous and we didn’t feel like it turned out quite as well.
We didn’t get to see her GI doctor since she was stuck in other appointments and we ran out of time and Maggie ran out of patience. We met with the Phys Med doctors who thought she looked great and had no new recommendations for us. In some ways that’s quite an accomplishment. For a long time every doctor we would see would have alaundry list of things for us to do. Now, it’s surprising if they suggest something we’re not already doing.
We also met with her neurologist who is pleased with how she’s doing and while he thinks she’s maybe even a little better than she was, reminds us we are still at significant risk. He reminds us the trials are going well but he can’t really talk about them lest he spoil the research. He mentions a few other potential treatments that are coming down the line. He mentions he’s moving closer to us. All good stuff. But the idea that we’re not out of the woods yet is no fun.
I think a hard part for people to understand is the constant sense of impending tragedy. She’s doing great now – she’s running and jumping. She’s swimming like a champion. Not a champion of swimming, mind you – she doesn’t float and hasn’t quite figured out you’re not supposed to drink the water – but she’s making great strides. She’s gaining wait and muscle. She’s getting stronger. She’s even vocalizing more now. She knows her abcs and 123s. She can’t pronounce all the letters and numbers. But she knows them. It’s obvious.
But at any minute something could change. She could get pneumonia and forget how to walk while she’s laid up. She could get a seizure and forget how to hold things. That’s Rett’s dirty secret – we constantly have to be on the ready. That’s ok, Rett. I’m ready. En Garde.
After a really great and relaxing week spent with family, swimming every day and getting eaten alive by mosquitos, we’re going back to Texas Children’s Hospital in Houston today – the mecca for Rett research. We’re going to see Maggie’s neurologist and gi doctor as well as meet a new physical medical rehabilitation doctor. It’ll be good to check in with them. My parents are coming as well. It’ll be great to spend time with them.
My feelings on this trip are a world apart from where they were 6 months ago after just getting the diagnosis, though.
Then I was determined to go and get some answers. My parents came for much needed emotional support.
Today, I’m not so sure why we need to go. My parents are coming, really just to visit the children’s museum again – we all really liked it when we were here last. They also really liked the restaurant at the aquarium. We’re all excited to go back. But the doctors? I could go either way.
When we met with the doctors six months ago we were positive we would need to come back every 6 months. We would need to check in with the doctors. I think that was because in my lifetime doctors have always been the people who prescribe medicine to fix what ails me. My thoughts 6 months ago were, “maybe when we come back they’ll say, “oh, have you tried this drug? It makes everything better.”” Or maybe I was just scared and thought that checking in again would make sure everything stayed on track.
In some ways it probably has. We’ve worked hard to keep Maggie progressing, allow her to retain her skills, and help her to build on them. I think we both hope the doctors will be impressed. I don’t know why that’s a consideration, but I think if we go in and they think she’s gotten better, we’ll feel like our hard work is really paying off, beyond in the small victories we see every day.
I guess it’ll be nice to get some confirmation that we’re doing the right things, that she’s progressing nicely and that we just have to stay the course. It’d be nicer, though, if there was something they could do to help her.
It’s been a regular struggle to get her to play with other kids. When she was younger, before the regression, she would play near them, but not necessarily with them. And when she started tossing sand out of the sand table, they’d typically find something else to do, lest they be sandblasted. Don’t get me wrong, she loves other kids. She loves watching them play. The apraxia just gets in the way of her actually being able to do what they’re doing.
I mean we can make it look like she’s doing what they’re doing:
Then I watched her participate in a full on screaming competition. One girl screams, the other screams louder and so on and so forth. In public it’s probably not that appropriate, but regardless, I couldn’t be prouder – for so many reasons – she’s vocalizing, appropriately, she’s communicating, she’s listening and responding. All of it, simply great.
And then, visiting Texas, her cousins and her cousin’s cousins, who are so good to her, wouldn’t let her get away with playing alone. She swung on that tire swing for hours. Even when we’d take her off, she’d hit the tire again, telling us in her way “I’m not done with this one just yet”.
Even as some cousins would get up and go do other things, she would swing, smiling and waiting, as other cousins came to replace the ones that left. The constant flow of kids made her so happy. And her happiness is our happiness.
Rett Syndrome has changed my life in so many ways. Before the diagnosis, I was working at Jash, the digital studio that Sarah Silverman, Michael Cera, Reggie Watts, Tim and Eric started along with a bunch of other people I’ve always respected and at various times believed it to be my dream job. I was working with people I liked and respected, running a digital studio, making comedy videos. It had everything. After the diagnosis, I couldn’t imagine anything less important. (No offense to anyone from Jash who might be reading this)
I had called my friend who started a company called Omaze, which runs sweepstakes for once in a lifetime experiences to raise money for charity, thinking I could get something going for one of the Rett charities. A week later he called to see if I wanted to work for him. It fell into my lap and it’s been a great reprieve, in addition to being a perfect fit considering my experience and my hope for what my next steps would be.
He’s also been very generous with the access to the company resources. And after 5 weeks of being there this is the product of that generosity: youtube.com/epiclloyd
Lloyd is a funny comedian who is well known for his Youtube channel Epic Lloyd and better known for his part in Epic Rap Battles (youtube.com/erb). He was among those that were asked to come to the White House to talk/meet with the President about Social Media. He is helping us bring awareness to Rett Syndrome in a very creative and fun way. Since his audience is young and most likely doesn’t know much about Rett, this is going to be very helpful.
It should be noted that this is not suitable for work. But in one fell swoop 1 million more people now know about Rett. And if many of them take part in this auction, we’ll be able to raise a good sum of money for the charity. Lloyd Ahlquist, you are an impressive human and while I said this in every email, it can’t be said enough how grateful I am for your efforts on this. Thank you Lloyd, for you time, your talent and your willingness to bring awareness to our cause. Thank you so very much.