Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool. It’s been a tough few months and finding camps for Maggie, has, again, been difficult. The horse therapy camp was cancelled due to lack of interest, most day camps don’t support kids like Maggie that well, and so summer options always feel limited for Maggie and frustrating for us. My mind swims with summer memories and all I want to do is create the same for our kids.
There is one activity that we discuss every year – Going to a baseball game! Every year for the past 8 years, it just hasn’t been possible. It’s a doozy for Mags. The heat, the crowds, and sensory overload.
Life changes so quickly for us. A month ago, I wasn’t getting any sleep, Magnolia wasn’t eating and our family was hustling to survive our days. I was meeting with several specialists every week. Talking to doctors and nurses on the phone, packing a hospital bag and making an ER criteria plan. We have a surgery scheduled for the G tube (feeding tube) in August, but we are still hoping we can manage Magnolia’s weight and hopefully improve her condition before then.
This last week, things changed again. She started eating more, not much more but enough to sustain her. Even better, she’s been in a relatively good mood. Since we never know how long we have, we tend to take a good day and relish in the moment. It’s summer and we need to have some fun.
I mentioned a baseball game to AJ. He is working all summer and most of our family plans together are in August. August is really too hot for a baseball game. BUT last weekend we had a small window of opportunity. AJ didn’t have to work, Mags was feeling good, there was a 4pm game and the weather was 70 degrees. WHAT?! The day before the game AJ bought tickets and we were both so excited. We couldn’t stop saying, “We’re going to a baseball game!” I think our excitement really encouraged the kids to be excited. We were all anxious with anticipation.
So we did it! We went to a Dodgers baseball game. It wasn’t easy, the game was even louder than we anticipated. Even though as adults AJ and I have been to baseball games, you don’t realize how loud it is until you have a child that doesn’t do well with lots of noise. SENSORY OVERLOAD for sure. I had packed earplugs and headphones. At first we tried earplugs, that barely helped, so we added the headphones and that seemed to help a lot. Her breathing was difficult during a lot of the game but she still had an awesome time. We made it to the 7th inning stretch and decided we were good. AJ, being the avid baseball fan that he is, was thrilled to sing with the kids, then leave.
Last year, we discussed AJ taking Gray by himself, but that made us both sad, since it was a reminder that Mags just hasn’t been able to go. I wanted this to be the year. But Mags has been so weak with so much going on, it didn’t look like it would happen.
Tears of joy as we left the stadium. Such a feeling of accomplishment. The stars aligned, we saw the opportunity and we took it.
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.
I have a skater girl, surfer girl, extreme sport loving girl. I could not love her more. She may not have all of the abilities, but she has the heart. Last year, when she asked for a skateboard on her Tobii eyegaze tech computer. I thought she had made a mistake. Hello? Presume competence mom! She meant it. So immediately I try to find the exact skateboard for her. Then try to figure out how we can adapt it to her. She was adamant that she wanted a skateboard not a scooter. Which really, either way, there was going to be a lot of adapting. As per usual, Magnolia proved me wrong. No adapting necessary, just some reassurance and faith. Of course, dad is always up to the challenge. At the start of the summer, he told Mags, he would teach her. So AJ and Magnolia have been going to the park. If you see them, you will find the most inspiring little girl geared up and trying to skate.
The other thing Mags told us she wanted to do for the summer was go to surf camp. We live in Los Angeles, you would think this would be easy. I searched and searched and found nothing that would work for her. I just didn’t bring it up again. Then I kept seeing social media posts of friends with kids Magnolia’s age, all in surf camps. Dammit! Its not fair. Its all she wanted. So we decided we would create a surf camp for her. We planned a family vacation to La Jolla Shores (San Diego) booked her private surf lessons with Surf Divas for all the days we were there. Mags was thrilled. Surf Divas was amazing. This was her third year to surf with them and we are always happy. I think we just found a family tradition. Surf camp! Bonus, we also met up with another Rett family from Texas that happened to be vacationing in La Jolla. They signed their daughter Catherine up to surf with Magnolia. It truly was a memorable experience.
Look, as far as I’m concerned, our motto is, “Live Big”. She will be able to do anything she wants to do. I’m starting to feel, we have set ourselves up for some extreme situations, but I’m all in. Just let me get a little bit of research in, but then she will reach for the stars.
We have so many days that are great. We try to live each day as positively as we can. We are a work in progress but we are trying to find balance in our lives, caring for Maggie, enjoying the little things and also pursuing our lives individually. We also try to get involved with as many events as possible, bringing awareness, fundraising and supporting.
Looking through pictures is fun but can also be emotional. When trying to find ways to bring awareness, we are reminded of what a roller coaster our lives really are. This past year, as most of you know, Maggie got a cold and her symptoms avalanched from there. The day before she got sick, we were supporting Girl Power 2 Cure and Sparkle Athletic raising money doing the Ragnar race. We supported by walking our own Virtual 5K around our neighborhood. It was the best day. Our first family walk with all four of us. Maggie was skipping, running, laughing and just having the best time. We had the best day. The next day our lives fully changed. She woke up sick and hasn’t been the same since. But this day was amazing. I look forward to more days like this again. It goes to show you, you never know what each day will bring. Live life to the fullest. #rettawareness #girlpower2cure #sparkleathletic
Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that.
5 is an important year for a lot of reasons. In my family there are no more important birthday than the ages ending in zero and five. So, just from the familial traditional sense, 5, being her first of the “important” birthdays is a major milestone.
But with special needs and Rett Syndrome, it is much more than that.
The state funded early intervention therapy programs look at 5 year olds very differently than the under 5 set. The therapies, in the eyes of the state, are less likely to have dramatic impact after the age of 5. They claim that the brain is at its most elastic until the age of 5, and while this may be true, it doesn’t give the whole picture. That theory implies that they won’t be able to help her (as much) after her 5th birthday, that suddenly, her ability to learn new skills lessens. What I do know for sure, though, is that if we don’t do therapies she will lose skills. If we don’t do them, she won’t be able to progress. She will lose strength, focus and motivation. People base their self-worth on abilities and accomplishments – by limiting one, we’re limiting the other and lessening her self-worth in the meanwhile.
I know that if we do nothing, when there is a cure, she will be worse off. I know that when they can fix her biology, if she had never done any therapy, the road to recovery will be extraordinarily hard. When I think about recovery, post cure, I think of someone who has been laid up in bed to the point that their muscles almost atrophy – through therapy they will be able to regain strength, but the longer they don’t use the muscles, the harder that therapy becomes. Yes, therapy makes her life harder now (and ours – driving every which way, every single day), but it will make her life easier in the time to come.
Being five also means she is school aged. While we decided to keep her in pre-school for an extra year to help her develop some life skills – we regularly worry what school will look like for her next year. Do we go for an inclusion program where she will be underserved from a therapeutic viewpoint, but well served from a social standpoint? Do we put her in a special needs program where she will get all of the support she needs, but will not have typical kids to model appropriate behavior for her? Do we put her in a special classroom in a typical school so she gets some services she needs and sees some typical kids sometimes? Or do we home school where we can make sure she gets everything she needs? Lots of questions we have to figure out before she turns 6.
The other thing about turning 5 with Rett Syndrome is that seizure activity increases from ages 5-12, or so we’ve been told. There are certainly exceptions to the rule – some have seizures very early, while a small percent never have them at all. But, if Maggie is going to have seizures, we are now at increased risk. When we get to 12 we will be at increased risk of scoliosis, such severe muscle tightness (dystonia) that surgery may be required to relieve the pain, and a continued fear of sudden cardiac arrest as a result of heart problems or extreme breathing problems.
Maybe 12 won’t bother me so much. At least it doesn’t end in a zero or a five.
When I look at her
I don’t see her arms flapping.
I see a little girl trying to fly.
When I look at her
I don’t see a girl struggling to breathe
I see a girl who takes my breath away
When I look at her
I don’t see a girl who walks with a hitch
I see a girl who walks with a skip.
When I look at her
I don’t see a severe disability.
I see a little girl.
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year.
Maggie has lost her speech.
Maggie’s arms & hands have Parkinson’s like tremors.
Maggie hasn’t lost all hand function, but she has lost enough.
Maggie’s right hand constantly wrings so she wears a glove to protect herself.
Maggie’s left arm constantly hits her face, so we brace it to protect her.
Maggie has had a few Rett Episodes, which are similar to seizures but not seizures.
Maggie has GI issues.
Maggie’s body temperature has a hard time regulating.
Prone to respiratory infections.
Visual sensory processing disorder
Sensory processing disorder, proprioceptive and vestibular.
Maggie has Global apraxia, which is difficulty with motor planning. Motor planning incorporates every motor skill. Walking, climbing, eating, playing,etc.
Maggie can still walk, run, jump, follow directions, smile, laugh, play, swim, climb and eat by mouth.
Everyday she works hard to keep the skills she hasn’t lost and to regain those that she has.
And Maggie is considered mild for Rett
This past year, Rett did progress. Maggie lost more hand function, we are a moment away from full loss of function. Maggie now drools more often and has tongue thrusting. She now has more anxiety. She has breathing problems, holding her breath for short periods of time and hyperventilating with regularity. Maggie has also had several seizures, right now they correlate to when she is sick. Her right arm is also very stiff – which may be the beginnings of dystonia…tbd
This is Maggie’s Rett and what she deals with everyday. These are other symptoms typical of Rett that Maggie does not yet have. But as it progresses, we may have to deal with them as well.
Scoliosis, fragile bones
Impaired Cardiac problems, potentially causing sudden death
Difficulty walking, leading to wheelchair
From the moment we get up to the moment she falls asleep, we help her fight for her skills. Maggie is a fighter! Rett keeps knocking her down, but she gets back up. This is why we fight for her. For a cure.
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month?
I had grandiose plans, but am glad I’m more or less just a participant in a number of events. Awareness doesn’t end at the end of October, but it can begin today if you’re looking for ways to help. Maybe you’ll change your Facebook profile picture to a purple icon or a Rett logo. Maybe you’ll participate in a stroll-a-thon, or a Rett golf tournament. Maybe you’ll just hug your little ones a little tighter this month. Maybe you’ll find a way to donate if you haven’t. Or maybe you’ll consider tweeting the list below, provided courtesy of Girl Power 2 Cure for the next 31 days:
However you choose to get involved during Rett Syndrome Awareness week is likely more than you’ve been involved in the past – so we’re already spreading awareness. You’re already helping – there are already more people involved this year, then there were last year…as in you guys. Just by being a part of our journey, the word is spreading. Hopefully soon, when it’s cured, we can all stop talking about.
31 Tweets – October is #RettSyndrome Awareness Month – share this flower to help
A little girl is diagnosed with #RettSyndrome every 90 minutes. gp2c.org
Can’t speak. Can’t walk. Can’t use hands. But you know everything going on around you. It’s #RettSyndrome. gp2c.org
It’s #RettSyndrome awareness month. Girls living trapped unable to speak or use their hands. Hear their stories. girls.gp2c.org
October is not just for #breastcancer awareness. Women are suffering debilitated their whole lives with #RettSyndrome.
Have you seen these cool Purple Cards? 60,000 more people learned about #RettSyndrome this year. BE NEXT. www.girlpower2cure.org/how-to-help/thepurplecard
Baby girls are born “normal” but begin to lose motor skills between the ages of 1-3 years old. It’s #RettSyndrome.
#RettSyndrome is caused by a single gene mutation that leads to underproduction of an important brain protein.
#RettSyndrome is the leading genetic cause of severe impairment in girls- most cannot speak, walk or use their hands. gp2c.org
Despite physical disabilities, girls with #RettSyndrome are functioning mentally at a much higher level than previously thought.
What is as prevalent as Cystic Fibrosis, ALS and Huntington’s but you have not heard of it? #RettSyndrome. It’s a girl thing.
#RettSyndrome has been reversed in the lab and could be first curable neurological disorder. gp2c.org
Why retweet this @GirlPower2Cure flower? It is always in bloom with hope & positive energy. Join me in fighting #RettSyndrome.
Need a challenge? Try one day in my shoes. #rettsyndrome girls.gp2c.org
Friendship isn’t about who you’ve known the longest. It’s who walked into your life, said, “I’m here for you” and proved it. #girlpower2cure
Expectations. Have them. Rett Girls can do amazing things. #rettsyndrome #girlpower2cure #physicaltherapy
Not all superheroes wear capes! #girlpower2cure #rettsyndrome
Believe in the power of believing in yourself! #rettsyndrome #girlpower2cure
I think I can, I think I can, I think I can….I know I can #rettsyndrome #girlpower2cure
Look into their eyes and hear what they are not saying; because of #rettsyndrome their eyes speak louder than their voices ever will.
In honor of #rettsyndrome awareness month, I am rockin’ the @GP2C flower and you can too! https://secure.girlpower2cure.org/np/clients/gp2c/giftstore.jsp
1:10,000 doesn’t seem like many but if it’s YOUR child, it’s too many” #rettsyndrome
There’s real hope for a cure. #rettsyndrome #gp2c gp2c.org
I know a girl that puts the “rett” in pRETTy. Actually I know lots of them, let me introduce you: http://girls.girlpower2cure.org/
Rett Girls might not fly or leap buildings with a single bound…but they sure are SUPER HEROES to me! #rettsyndrome gp2c.org
What can girls with #RettSyndrome do? Amazing things! WATCH: http://www.youtube.com/rettwecan.
Love this video! Makes me want to put on my dancing shoes and raise awareness for #RettSyndrome. http://www.youtube.com/watch?v=0KcK-Y7hs-4#t=19
I’ve met some amazing girls with #RettSyndrome. I invite you to take a moment to meet some of them. http://girls.girlpower2cure.org/
I’ve covered a lot of miles this year but so has @GirlPower2Cure. Join me in their fight against #RettSyndrome. gp2c.org
How can you help a girl with #RettSyndrome? Give them a voice and get involved! http://www.girlpower2cure.org/how-to-help/volunteer.aspx
Closer than ever to a cure. Hundreds of thousands girls & women can be saved. Join our fight against #rettsyndrome. gp2c.org
The video’s been shared a lot, so thank you for that. It’s at 110,000 views and it’s been pretty cool to see. (If you haven’t seen it yet – http://bit.ly/Magnoliashope.) I do wish we didn’t have to share it. I wish it was already a household name and already had significant funding. For example, I had heard of a disease like tay-sachs my entire life and that affects something like 1 in 350,000. That’s a stat from wikipedia which is why it has the “something like” qualifier. But it’s just interesting to put it into perspective. Rett affects 1 in 10,000 female births. And yet, no one knows about it. So, any awareness is important and necessary and gets us closer to that cure we’re fighting so hard for. Just look at the ALS challenge – those videos which started out as awareness have resulted in millions of dollars of gains.
The news is doing a story about the video we put up and Rett Syndrome. Today was the interview. Jenny’s a little upset she had to cry on TV, but that’s the producer in her, just making for good tv. Plus the interviewer was really trying to get it out of us. I almost lost it too, but Jenny’s phone rang, just in the knick of time. I’ll let you know when it airs, probably in a few weeks and it will be a nice little piece of awareness. I’m glad to be shining the light on this thing a little bit. It makes me feel like we’re really doing some good for the cause. They asked me to find some videos of her talking, though, so I stayed up late watching old videos. It’s really hard to see where she was – she was walking (which she still is), and playing with both hands (which she no longer can), and even talking (which she’s not doing anymore). She was doing handstands, her balance was much better. She was even squatting. One of the last videos we have of her talking ends with her saying “bye dad.” She’s come along way from there. And it’s hard to see. It’s even harder to realize I was at work the entire time and I missed so many of those moments. One of those things where hindsight is 20/20 – I wish I had savored each and every one of those moments just a little bit more.
But then we have days like this, where she giggles and plays and jumps with so much joy, and as bad as Rett is, I know it can’t take things like this away from me.
I don’t think Jenny or I realized how emotional sharing the video actually would be. It’s really the first time I’ve talked about it in a public forum (except this blog which is still really a private forum) and the outpouring of response from the video has been emotional. I’ve heard from friends I haven’t heard from in years. We’ve connected with people we’ve never met. Someone sent me subtitles for the video in Portuguese and someone else sent German subtitles – so people could understand the video in those countries. And it’s been cathartic for me. I feel like I’ve been keeping this major secret from everyone who isn’t following this blog. And it’s nice I can talk freely about it now. I’m glad the video let me do that. And now that I can talk freely, I think the world is about to get a lot more aware of Rett Syndrome.
Thank you for following along with this blog. I’ll probably post one more time about the news story and the video, unless something drastic changes – it’s doing it’s thing at this point and I’m sure people will continue to share it, but I’d like to get back to writing about all the progress she’s made. Thanks for all your support in this. It means a lot. And thanks for continuing to share the video. It’s working.