We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. I went and checked on the pool before lunch and it was 70 degrees, aka too cold to swim. So we had to cancel. While Mags and I were eating lunch, she kept navigating on her Tobii to Farm on her computer. So I modeled “What about the Farm? She replied “Farm, Farm, Farm, want.” So I modeled. “I want to go to Farm.” I was so happy she was trying to use her computer and not for the quick easy answers, which she has been doing a little more, but for something she actually wanted to do. So we looked up the closest farm and off we went. It was small but both kids were happy. We were there an hour, fed the sheep and goats, and bought a fresh watermelon and corn. Success! Here’s us getting Mags to feed the goats even though she didn’t want to get too close. Pretty much nailed the family selfie too.
Sunday we took a spur of the moment trip to Ojai. We visited some friends there. Ojai is such a peaceful and fun small town to visit, we should go more often. Or at least I should. Kidding, my family can join me. We ate, we swam, we walked around, we ate, then drove back to LA. Fun day! If you remember, the fires this past year surrounded Ojai, and you can see there is regrowth happening already. Last year the hills behind us were all on fire, but this year, to quote a Jurassic World slogan, life finds a way.
Monday was Memorial Day. We had planned to meet our friends at the beach. My weather app said it was going to be 68 degrees. I was tentative about a chilly beach but we packed it up and met them for the afternoon. It was warm where we sat, but closer to the water was chilly. Gray didn’t care, he chased the waves and wanted to play with daddy. Every time Mags and I walked to the water, she would turn around and head back to our where are stuff was. It was too chilly for her. She is so skinny, she gets cold easily. I have to remember warmer beach clothes for her. She would rather sit under the tent and eat watermelon. So that’s what we did. We had girl time. (outfits not necessarily worn in this order, lol)
I didn’t have Mag’s arm braces on her while we were at the beach and she seems so tight. Do you put braces on your Rett kids at the beach? I guess they are washable. I need to think about this, we plan on going to the beach a lot this summer. Maybe one brace is a beach brace, then leave another one as a dry brace? I’m up for suggestions.
#magnoliashope #rettsyndrome #parentsaretired
I have seen people run races for causes. I have heard that this is a thing people do. But I am not a runner. I am not a biker. I am not a swimmer. I am just a dad who is willing to do anything and everything I can to raise awareness and dollars for a cure. Even if that means breaking my own body.
Four months ago Jenny forwarded me a link to the Malibu triathlon. She told me Shelly was running for Maggie and the subtext was clear – if Shelly, Maggie’s aide, is going to run, then AJ, you have to as well. It didn’t take any arm twisting at all. I had been looking for something like this to do. It’s been an incredible experience, just training for this race. Every time I get tired, or decide it’s something I just don’t want to do, I think of Maggie. I think of how much I would like her to even have the choice of telling me she doesn’t want to do it.
I don’t have that option. Maggie doesn’t get that choice. At least, not until there’s a cure or treatment which I keep being told could happen within the next few years, if we raise enough money to make it happen.
So I’m doubling down. Maggie will turn 7 in just two months. Her childhood years are disappearing and there’s nothing we can do to slow the sands of time. So, we have to speed the sands of research. We have to make that cure happen faster. So I’m running a triathlon this month. Next month is the Rett Gala in LA Jenny and I are co-chairing this year (please let me know if you have anything you’d like to put up for auction). November 7 is the Rett event in New York I will be attending.
The science is precipitously close to having something that can help Maggie. Maggie can’t wait any longer. So I’m running, biking and swimming as fast as I can. The next time I do this, I hope she will do it with me.
You can donate to support our efforts at rettgive.org/magnoliashope
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the house because Maggie is too tired to do anything. So this past weekend we really didn’t know what to expect.
Saturday morning we woke up and she was tired but also asked if we could go on a hike. So we did. The best part was, she was insistent that she walked with our friend Eric. She told us we would be allowed to walk near her but not with her. If he had to carry his new baby, then she would walk with our friend Leslie. I told Eric when we got to the nature trail, what Maggie’s plan was, he was happy to oblige. Maggie just loves him, I think she loves his french accent and how much attention he gives her. It was a fun hike.
Sunday,AJ wanted to fix some stuff around the house. Maggie and I headed to the zoo while AJ stayed home with Gray and fixed the sprinklers.
At the zoo, we usually look at the larger animals, but Sunday we decided to go to the petting zoo area. Maggie really wanted to pet the goats and she actually kept trying. There was a goat following us around wagging his tail and she finally got to pet him. After the petting zoo, she was so tired, she fell asleep in her push chair. So I sat in the shade for the next hour and just crowd watched. She started to get warm, so we left. By the time we got home, Maggie was overheating, so when I walked in the door with her and she was melting down, AJ decided to jump in the pool with her and we had an impromptu swim party.
Monday we had a few friends over, she swam, we ate BBQ, Maggie and Gray napped, we swam again, we ordered pizza. It was such a fun and relaxing day. Maggie went to bed smiling. This is honestly a picture of her in her bed smiling before falling asleep.
I could not have been more thrilled with our weekend of excursions. There were no seizures, minimal exhaustion and just happy kiddos everywhere. Fun weekend aside, the thought is never lost on us, that we live in a country that affords us the opportunity to live freely.
I hope everyone had a nice Memorial Day.
“Freedom is never more than a generation away from extinction…”Ronald Reagan
We’ve been trialling a different eye gaze computer for the last few weeks. Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way (video forthcoming). We’ve become very adept at reading Maggie, understanding what she wants, understanding what she needs and avoiding meltdowns. Of this we’re proud. 25 minutes into Susan’s visit, Maggie was starting to fall apart – arms waving, body shaking, crying, the whole 9. We did what we typically do, sing songs, feed her, whatever we can think of, or whatever we think might help. Susan, rightfully, observed we were just feeding into her behaviors. By giving her everything she wanted or needed, she wasn’t compelled to use her computer to communicate. We’ve felt like we were disciplining her at times. But it’s also hard since, without her being able to talk back, she still acts and responds the way a 2 year old would. We just have to remember that she’s not. Her body may not work and her voice may not work, but her brain works fine. She is smart. She needs everything a typical 4 year old needs. Including discipline. So now, we have to force her to communicate, and while it will be hard for us, let her cries motivate her.
Susan trained us on the next step of the communication device. It’s called Sonoflex and it’s the beginning of sentence structure. Right now all we’re doing is modeling – that means, essentially, we just talk to her using the device instead of using our words. Much the way any kid learns how to speak, Maggie will learn how to use this. To me it seems crazy – it seems like we’re constantly teaching her new languages. Now instead of 12 options on a screen she has almost 30. And the amount of things she can talk about is drastically increased as well. And despite the assurances, and her success on the previous system, I didn’t really know how long this would take.
So we’d go about our business of talking using a touch screen computer. We started talking about our plans for Memorial Day – how we’d be going to the beach, playing in the sand and going swimming.
Maggie selected pail and shells. I asked her if she wanted to collect some shells in a pail. She confirmed that’s what she wanted to do. I had my doubts that that’s what she intended to say. I mean these devices are amazing, but they’re not necessarily reliable. We’re never really 100% that she means what she says. Plus, with her limited hand use, collecting shells has always been both an impossibility and a cause for regret.
But she said it, so when we got to the beach, I passed her a pail which she held in her right hand, an impressive feat in and of itself, considering she almost never carries anything in her right hand and then we scoured the beach for shells.
She had the best time – and sitting there showing her shells and asking if it was worth keeping or not…it’s indescribable. Jenny cried. My heart was full. And all because we started forcing her to do the thing we want most desperately for her to do – communicate.