Newton’s 3rd law states…”For every action there is an equal and opposite reaction”. I’m starting to think that pertains to our life right now. Whenever our life swings in one direction, its not very long that it seems to swing in the complete opposite direction. Our pendulum swing is drastic. For us, for every amazing moment with Magnolia, there is an equal and completely opposite dramatic life altering moment with her as well.
Her seizures and breathing issues truly rule our lives. I wish they didn’t but they do. Before the holidays, we honestly believed we had figured out how to help Magnolia with her breathing issues and seizures. We had started a new medication and her breathing issues and seizures seemed to have stopped. If you remember, September through November, her breathing issues were so bad. We were at a loss. We talked to all of her doctors, specialists and therapists. Everybody was brainstorming. What could we do to help her? We were referred to Dr. Tarquinio in the Atlanta Rett clinic. There wasn’t an immediate appointment available and at the time, we were planning on going to Aruba for the holidays. We both knew, it didn’t look good. It didn’t seem she could make the long trip to Aruba, much less travel at all. We were desperate to help her. Not just because we wanted to travel, but because we wanted relief for her. Before we even made the trip to Atlanta, AJ, Dr. Tarquinio and Magnolia’s epilepsy neurologist at CHLA worked together and decided on one particular medication. It worked.
We made an appointment to see Dr. Tarquinio in Atlanta. Now it wasn’t urgent but we still wanted to see him. A couple of weeks went by and we knew, we might be able to travel. For weeks Magnolia was better, so we went on vacation. Of course, everyday we would wait for the other shoe to drop, it didn’t. At least not before or during the holidays.
After vacation, we came back to LA and things started to change. The pendulum had swung. Everyday we would wake up and her breathing became worse. We watched as everything started to pile back on. At first, we thought she’s exhausted from travel, it’ll balance out. Then she caught a cold and we thought, once her cold is gone, she’ll be better. Then she caught a stomach virus. Still the breathing got worse. We felt useless. We feel useless.
It’s hard to live in the extremes. Its difficult to have the world open up for her, just to be taken away again. Our lives swing from being able to take adventures. Skiing, rock climbing, surfing, hiking, biking and swimming To rescue medications, packing hospital bags and debating on whether she should go to the ER. There’s very little in between. We would love to live somewhere in the middle of the pendulum.
If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of grief. Now most days I wouldn’t say there is grief, just a wave of sadness, and also not everyday. Most days, I’m fine. All things considered, I think that’s pretty good. I didn’t think I’d get to this place.
The reality is, emotionally we live moment to moment. When the good outweighs the bad, we’ve had a great day. It’s when the bad moments start to outweigh the good ones, that’s when we start to wave the white flag.
I’ve been thinking about this a lot. I am tired of the tease of calm waters. The past couple of years have no doubt been hard. Waves of symptoms affecting Magnolia. If it’s not seizures, it’s breathing issues, or GI issues, or balance issues, or unexplained pain, or her body weakening and tightening, her hands have mostly stopped functioning with constant wringing, the list goes on. Rett is relentless, but then we get moments and we breathe lighter. A little bit of weight lifts off our shoulders. Then those moments turn to weeks. We are in awe, we enjoy the reprieve, we hope it stays. We celebrate medicines working. We adventure. Then it stops. We watch daily as symptoms slowly return. The waves start crashing bigger again.
I try not to compare Magnolia to others afflicted with Rett Syndrome. Sometimes its curiosity, sometimes its jealousy, sometimes it’s survival. What is that mom doing that I’m not? I’ll reach out for advice. Usually when I reach out, I find out, they are drowning too or they are in their own dingy rowing like crazy trying to stay ahead of the next crashing wave. I’ve realized, every family is in their own small boat, making sure they are wearing life jackets, because the waves of Rett are relentless. Nobody has found land, not yet anyway. Until we find land, we will keep trying to live our lives as best as we can in our dinghies. #dinghylife #rettlife
We love to travel. It has been immensely harder for us the past five years. Since flying became so hard,the past couple of years we have really tried to incorporate more family adventures that involved driving. We have had some really fun experiences from San Diego to Mammoth mountain and I will always love road trips. Since both sides of our families live in different states, there are times we have to travel by air. Especially during the holidays. There have been plenty of times that we have had to cancel trips. There are also plenty of trips we just didn’t even bother planning, because we knew it wasn’t possible.
Over the past few years, one of the biggest hurdles has been having to fly with two adults, out of necessity. I’ve flown with one or the other kid by myself, but it was just 1:1. Two kids that both need help, just didn’t seem doable. Gray will be 3 years old soon and he is now fully capable. Sure, he can get grumpy or tired. He’s 3. Of course he still needs an adult to accompany him, but he’s fine. Magnolia, still needs full attention. At any time she could have a meltdown, seizure, breathing issue, need help eating, drinking, etc. It’s much harder for her. Until this last flight, I couldn’t comprehend flying with both kids, it just didn’t seem doable, it wasn’t doable.
Last night, I barely slept, I was anxious, but a different anxious. For some reason, I knew everything would be fine. AJ had to leave for NYC for work, so he scheduled our flight before his. He wanted to help get us through security and to the gate. It worked. As we boarded the plane, I told myself. Whatever happens, happens. It’s going to be okay. As long as Magnolia’s health is fine, everything else is a piece of cake. As we took our seats, I handed out Magnolia’s Hope cards to the surrounding passengers. The cards give a little bit of information about Mags and Rett Syndrome. After I handed out the cards and passengers read them, everyone had this sense of kindness. Empathy if you will. I could feel it. Usually I feel people’s stress, their annoyance, not this time. The passenger behind us, immediately stood to put my carry on bag away. The passengers next to us, smiled and greeted both Mags and Gray, while I got our the rest of our stuff organized and situated. The passengers in front of us, thanked me for letting them know that she would be kicking the seat, told me not to worry about it. (Of course I did, I held her legs down quite a bit from kicking). At various times during the flight, flight attendants and passengers were willing to help. Ironically, we needed very little. At one point, Mags and I went to the restroom and Gray wanted to stay in his seat. The couple next to me, agreed to watch him. If he got upset, they promised to bring him to the restroom. He didn’t get upset, he just watched his show. When I got back he said, “Mags did you pee? I don’t have to yet.” We were fine. We did it. I filed solo with both kids. Did we have some hiccups, sure. Mags had some breathing issues and her body was a little out of sorts. The kids were both up at 5:30AM and neither napped during the flight. Everything was manageable. Then, Mags got a little emotional at the end of the flight. I couldn’t figure out why. I kept trying to figure it out. “Does your belly hurt?” “Do you need to go to the bathroom?” “Are you hungry?””Tired?” None of it. She cried for a few minutes, then suddenly stopped. Once we got home, as we walked to our front door, Gray asked where daddy was. Then he asked where Grammy and Pops were. Right then I knew, Magnolia was just missing her family, just like every other 8 year old girl would.
I am so glad that we were able to go on so many fun adventures over the holidays. We traveled to Aruba, then Texas, then back to California. We are happy, exhausted, and content. Traveling to amazing places and adventures is great, being with family is even better.
Also, thank you to the passengers, flight attendants, pilots, airport employees, Uber drivers, and everyone else that we came in contact with that chose to be kind. When you don’t understand a situation and you choose to be kind, you may not know, but you make the world a better place for everyone, especially Magnolia.
AJ travel solo with Mags to Atlanta to see a Rett Specialist. This is how our 3 weeks away began.
I travel solo with both kids to fly back home while AJ travels for work. This is how our 3 weeks away ended.
Gray wants to be like his big sister, he wears a headset and rides in her chair. He does it because its fun, She does it because its a necessity. It’s the little things that make a big difference in travel and in life.
We are definitely Team Magnolia when we travel.
Every year that passes is a reminder of how far we’ve come and how far we are yet to go. The one thing that 2018 was about for us was focusing on living instead of hoping. We are still optimistic about what these treatments are going to do and how transformative they will be for Maggie, but, if 2016 and 2017 were 100% about Maggie’s health, 2018 was about her life.
We made a pact to ourselves that we wouldn’t let Rett define her anymore. That it was a part of her life, but not her whole life. That while she could still do things, we would still do things. And, if she never loses her zeal for accomplishing new things, then worst case scenario is we’ve provided her a full childhood, complete with incredible memories.
So, even though I had to travel more for work this year, even though we knew each journey would be hard, each activity more complicated, and that no adventure was 100% until we had actually made it to the destination, we were determined to try.
The first part of the year was especially trying as we juggled seizure meds in hopes of regulating her system. She had been on Keppra and then Topamax and none of it seemed to work. Worse, her mood was suffering, and her body seemed like it was struggling against the effects of the medications. Her breathing had become so debilitating that she could barely even sit upright at times. We spent more days in the hospital than we would have liked, but were lucky to not spend as many days there as others must. Maggie got a new GI doctor, a new dentist, a new orthopedist, and she got back to seeing her old physical therapist. Her back started to bend forward with her head getting more and more difficult to keep up, whether as a result of exhaustion or pain. But, 2018 also ended with a new medication, Acetazolamide, that dramatically improved her breathing, and a new neurologist who suggested we wean her off the other seizure medications to see if, maybe, they had become unnecessary. So, 2019 will start with Maggie off of seizure medication for the first time in 3 years and if all goes well, she won’t need them again.
2018 also brought new adventures like zip lining, mountain biking and kayaking. She biked (downhill) by herself, skateboarded by herself and enjoyed numerous trips to the beach on all three coasts. She got to see Taylor Swift in concert, had a soccer game where she scored 5 goals, mastered gymanstics, rode roller coasters at LegoLand, tried butter beer at Harry Potter World and rode a unicorn. She received a perfect attendance record and a top student award at her school.
I made less videos this year, and instead, Jenny and I chose to focus on making one big one. Hopefully, we will be able to show Magnolia’s Hope, the feature length documentary, to you soon. Jenny started a new job, helping raise awareness and family support for Girl Power 2 Cure as well as editing their quarterly magazine.
Jenny and I kept up with our fundraising, chairing the Rett Gala in Los Angeles and Austin, and helping Jenny’s sister and brother in law as they launch the First Rett Gala in San Antonio set for 2/16/19. Our families attended events in New York, LA and Texas. We reached our goal on our rettgive.org/magnoliashope page, raising over 50k. I played in a golf tournament for Rett Syndrome, we supported multiple events with auction items and have been increasingly amazed at the continued outpouring of support. At one of the events, a scientist from Avexis held up a vial, claiming that was the gene therapy that would transform our daughter’s prognosis, suggesting trials will begin early in 2019. We’ve made major strides, but we’re not quite there.
We ended the year in Aruba, Maggie overcoming incredible odds to make it to her happy place.
So we are full and grateful for all that we can do, happy to be able to fight for those who may not be able to. We are fortunate to have the incredible support of all of you and hope you’ll continue to be engaged in our story. We are optimistic that 2019 will bring continued successful scientific discoveries. We know it will bring more incredible adventures. We owe it to Maggie to make sure that all of this is true.
On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger.
The last five years have been the most difficult in my life. I’ve watched my daughter lose skills, regress, have seizures, need CPR and be hospitalized. That has been her life, at least that is what Rett has done to her.
At the same time, she has fought for her lost skills. She has pushed herself mentally and also physically. She has overcome relentless side effects of many medications. She has screamed in agony, squealed triumphantly and shown strength, immeasurably. She wakes up every morning with a smile, in the hopes that today will be better.
She has had five more birthdays.
She endures. She fights. She inspires. She is beyond brave.
There are days, weeks, and months that are unrelenting. She gets knocked down, she gets up. She is fighting Rett Syndrome like she is Ronda Rousey. I’m just her trainer on the sidelines. I wish I could just tag her out and take her place, but I can’t. All I can do is help her, give her strength, give her love and be her voice.
She is my warrior girl.
There are so many reasons we love the Virtual Academy homeschool program for Mags. Her schedule is flexible, her health is better (colds, flus, viruses, not Rett not yet) it really has been a good program for her. The best part though, is the one day a week she goes to a classroom. She loves going and we weren’t sure if she was going to be able to this week. When she woke up on Tuesday, she was full steam ahead ready to go to school. As she walked in she was greeted with cheer, the other students were so happy she was there. Right away, she had to get in front of the class and discuss what she did over break (they didn’t meet up for a few weeks). Thankfully, Shelly knew this was a possibility.
As we were walking up to the school, Shelly asked her what she wanted to tell the class.
“Mags do you want to tell the class about Thanksgiving?” Mags answers No.
“Do you want to tell them about your Legoland trip?” Mags answers No.
“Do you want to tell them about going to the hospital?”Mags thankfully answers no.
“Do you want to tell everyone about Universal Studios?” Indiscernible answer.
“Mags do you want to tell your friends about Harry Potter World?” YES! Emphatic Yes! And so with Shelly’s help, she did. The kids asked questions and she would answer. She was thrilled.
I love how much she loves Harry Potter. We are reading the 3rd book, again. We’ve watched the first 3 films and she truly is such a fan. Sometimes I worry there isn’t enough magic in her childhood. We create adventures for her but childhood is made with magic. You know what I’m talking about? Dreams and pretending with your friends. Truly wanting a unicorn for a pet. Believing unicorns and fairies exist. The magic of childhood. I’ve often wondered if she felt the magic.
Now I know. Her love of Harry Potter tells me she is fine. I just know when she sleeps at night, she is fighting off evil wizards and goblins, with her Hogwarts crew. I hope her dreams and childhood stay magical.
In our life, everything isn’t magic, unicorns and cupcakes. We just do our best to make sure our kids are enjoying themselves and hope the rest will come from there. Maggie turned 8 this past weekend and that brought a lot of excitement and a lot of nerves.
When you have a non verbal kid, being able to deliver on what they want becomes much more difficult because seemingly you can only make guesses at what they really want. Since we’re only presenting a field of limited options, we can never be sure if what we are offering is perfect, or good enough. I work in a world in which perfection is impossible and you’re aiming for good enough. But, when it comes to Maggie’s birthday, good enough just isn’t…good enough. We talked to her about her birthday a bunch in the weeks leading up to the big day, but she’s been struggling on her computer of late, her breathing and seizures a near constant infringement on her communication. So, it’d been difficult to identify exactly what she wanted.
We know she’s into Harry Potter. Or at least, we know she was. She loved when we read the first two books to her. But, as the third book is when they start getting scary, we’ve held off for over a year on jumping into it. She hasn’t seemed as into this book as the first two, but it’s unclear whether that’s because it’s scary, because of the breathing issues she’s been having, or because she’s just over it. As a guy who read them in college, I find it hard to believe that at 8, she’s already more intellectually advanced than I was at 20, but knowing myself at 20, it is definitely possible. Regardless, we decided to take a chance and plan a birthday at Harry Potter World at Universal Studios. It sounds like a big trip to most people, but we live three blocks away. But, with Maggie, it was still going to be a big trip. We had tried going once before, but her sensory system got overloaded and we had to turn back around. That was almost 3 years ago. One of my closest friends from college had been meaning to come visit with his 10 year old son for awhile, so we had a built in party. We toyed with inviting a bunch of people to Harry Potter world to celebrate, but at over $100/person for a ticket, we thought better of it. Plus, keeping it small and manageable seemed like the prudent idea.
She rode rollercoasters, walked through Hogwarts castle and drank butter beer. She chose fudge flies from Honeyduke’s and french fries as part of her Great Feast. She cast magic spells throughout the park, completely amazing her little brother. At Olivander’s wand shop, the wand that selected her was for protection and healing. Jenny cried.
It was perfect. But, without candles or a cake, or all her other friends, it wasn’t a birthday party. We knew that going in, but we also knew that Harry Potter would be exhausting. So the next evening, we threw her a party that wouldn’t require too much energy on her part, but something she would still enjoy – a unicorn themed movie party. Popcorn in boxes, a mattress on the floor and a dozen kids ranging from 3-10, sitting, transfixed on a tv. Plus pizza and cupcakes she had picked out at the bakery earlier that morning.
I got nervous about the unicorn theme almost as soon as it had been decided. Maggie isn’t a girly girl and there’s nothing more girly girlish than unicorns. So the morning of the party, when she woke up, I nervously asked her if she was still into Unicorns, or if, now that she was 8, she had outgrown them. She answered with an aggressive yes, making sure I noticed she was looking right at me. “Phew,” I thought, as I walked her downstairs where unicorn horn party hats, unicorn streamers, and unicorn lollipops adorned our living room.
Maggie turned 8 this weekend and I feel fortunate that, of all the days this year, we were able to make sure this one was actually filled with magic, unicorns and cupcakes.
When soccer season ended last year, we weren’t sure what to do. We want Maggie to be involved in all of the things we were involved in as kids – sports (AJ & Jenny), dance (Jenny), cheerleading (AJ), whatever she wants. Obviously, every typical activity comes with its own layer of difficulties for Maggie. For instance, the same group of people who organize the soccer team do basketball over the winter. Since basketball requires functional hand use in ways that would be extremely frustrating for Maggie, we asked her what she wanted to do.. It’s easy to fall back on doing what’s easy. It’s easy to just decide for her. But she’s got opinions. Oh, boy does she have opinions. Typical kids will let you know those opinions. Maggie wants to let us know but we have to give her the opportunity to tell us.
For clarity’s sake, when we say we asked her what she wanted to do, we have to present her with options. Unfortunately, she doesn’t have access to every word in the English language, so she only gets to choose from the options we can think of that might be possible.
She chose gymnastics.
It’s a completely age appropriate activity and we were both excited to get her involved. I thought it was a perfect way for us to sneak in some physical therapy and Jenny was excited to buy leotards. (I did not expect her to buy one for me as well).
There are a couple of gymnastics gyms close enough to us but finding someone who was willing to adapt a program for Maggie was a little more complicated than we had thought it would be. None of the gyms themselves have any way of teaching a kid with Maggie’s complex issues. I thought maybe, I’d have to fly out Maggie’s uncle Steve, a master of the singlet in his day. Ultimately, we found Leapz N Boundz (http://leapsnboundz.com), an organization that “provides adaptive sports, recreation and social programming for individuals with special needs.”
Maggie was assigned a coach, Coach Jason, who assisted her through a weekly private gymnastics class. He would hold her hand to help her across a trampoline, offer support as she traipsed across a balance beam, help roll her body to practice her somersaults and support her weight so she could experience the rings or the bars.
We, of course, had to help as well, Maggie is often times a two person job, and that’s even more true when the other person doesn’t fully speak Maggie’s language. But she got to be a gymnast.
She pined over the typical girls in their typical classes, and would get emotional when we helped her too much, or not enough. But she got to do it. The thing that was most incredible to see is her pride when she successfully completed a somersault, her joy when she held onto the rings herself (even if for only a few moments).. So, Maggie has Rett Syndrome. But that doesn’t define her. She’s also a soccer player, a gymnast, a student. Gymnastics season is over now. But she’ll be back…if she wants to be.
Why we do yoga…
Yoga has been a part of my life for awhile. I’ve taken yoga classes off and on for the past twenty years. I’ve always loved it as a workout. When Magnolia was 2 years old, I wanted her to take yoga classes, so we would be the cute mommy and daughter yoga duo. Little did I know, it was about to be a big part of my life in a different way. When Magnolia was diagnosed yoga took on a different meaning. The first year after diagnosis, when she was 3-4 years old, Magnolia’s therapists would send me home with home work, to work with her, to help her etc. My mind was constantly buzzing and I would never remember what they wanted me to do. I would write down our homework, I’d get frustrated because I didn’t know if I was doing the therapies right. So I started to do yoga again with her when it was time for homework. It was something I could do, and I would feel less guilty that I wasn’t fully doing her therapy homework. It was also much easier for Shelly, Magnolia’s aide/nanny/bff, and I to figure out strengthening exercises for her. A therapist would tell me, Magnolia needs to bear weight on her arms, it will help with the stereotypies. So, Shelly and I would figure out the yoga positions that would work. At first, it was the two of us just using our knowledge of yoga classes. Shelly got a certification for teaching Yoga for Kids and I got a certification for teaching Yoga for kids with Special Needs. This isn’t needed though, Rett Syndrome is its own animal. What we do is figure out what yoga positions would be good for Mags and then work on those.
Like most other areas of life, you know your kid best. You are a certified parent and that’s all that matters. I just certified you as a parent. Congratulations.
All you need to do is just start doing it. Start with one position. Start with criss cross applesauce. Or whatever position it may be and just focus on that one position. Being calm, being present. Ask yourself, what does my kid need for me to help them into and out of this position. That’s it. That one position can teach you so much. Use the process to get into that position as part of the experience. Example, If your kid is ambulatory. How do they get themselves to the ground? We have to help Mags to sit on the ground. It is very difficult for her to squat, so we help her squat to sit, then put her into the position. If she is anxious, body moving, arms out of control, we rub her back, massage her arms, try to help her calm. That one position of sitting on the floor, may take us 5-10 minutes to get into and then we are only there for a few moments. The point is, its about the process. Maybe the next time you try the position, your kid is there for a minute instead of seconds.
Set aside 15-20 minutes and have your yoga practice. We play calming music, we diffuse essential oils and try to do yoga in a clear area.
What tools do we use…
A fun app on itunes that I found recently is this Yoga Therapy app and also this Wheelchair Exercises app. I bought the app bundle but these two really are my favorites. Within the app, you choose the exercise and then within the exercise page, there is a DESCRIPTION tab, MODIFICATIONS tab, BENEFITS tab and CONTRADICTIONS tab. I found these very helpful. Honestly, as a parent with a kid with disabilities, the amount of information that we have to absorb, this really helped. I love when something is clear and informative. I just started working with these apps and I’m glad that I purchased them. Great reference guide.
What we use almost every time we yoga with Magnolia:
The tools we have been continually with Mags for the past 6 years:
A yoga mat, which isn’t even necessary, but I do love making any activity purposeful. I do yoga, so we just used my yoga mats for the first couple of years. If you are trying to balance your budget and figure out, priority of purchase a yoga mat is not necessary.
A yoga block
A Yoga guide. This could be the Yoga Therapy app, the Yoga Pretzel cards or a Yoga book.
We have been using the Yoga Pretzels box of cards because I liked being able to choose cards and create our lesson. With Mags and Rett Syndrome we aren’t doing a yoga flow, which is a continuous movement/flow of yoga poses. You will be helping your child with the positions. We usually choose 5 cards to do each day. Depending on what Mags needs, we change up the cards. Although, we do make sure to include a “weight bearing on her hands” card such as the plank. As you learn the positions and the cards, you will become used to a routine. You will start seeing improvements in the tiniest of ways, but its worth it. I bought the Yoga Pretzels cards on Amazon and the Gaiam block at Target. I have two cork blocks that are stiff and heavy, those are mostly for me but occasionally we will use them for Mags.
The two mats I have in the picture are from Chi Universe. I think they are adorable. I actually bid on them at the LA Reverse Rett Gala a few years ago. I think their program is great, but it doesn’t really work for Mags. We do silly stuff, like sit your booty on the star, stretch to reach your toes and the hearts. I included them here because you’ll see them in most of our yoga posts and if you are interested, you should look into them.
When Mags was 2-4 years old I used a book called Kids yoga. It has pictures of animals doing yoga poses. It’s cute too.
Another great resource for me has been a book called Yoga Therapy for Children with Autism and Special Needs by Louise Goldberg. There is a ton of information in this book as well. Yoga information, poses, therapeutic benefits, etc. If you want to read and find out about yoga and how it can help you with your kid with special needs, this is a great book.
How does this help Magnolia…
With Rett Syndrome, there is so much happening at all times for us. We are constantly balancing a multitude of symptoms, anxiety, breathing issues, necessity for stretching and exercise. Yoga therapy seems to include all of that.
Yoga therapy can be Physical Therapy or Occupational Therapy.
Something else that has been a huge benefit to Mags is chanting. Yep, chanting “Ommm” “Ommmm” Long winded “Ommmms” happen a lot in our house. It calms her. When she starts to hyperventilate, I start chanting “Ommmmm” and it calms her. Its not 100%, but enough that I continue to do it. Now, when Mags hyperventilates her 2 1/2 year old brother will automatically start chanting “Ommmm, Mags Ommmm” It always makes her smile.
I read that the monk’s chant resembles the sound of the earth, deep down. If all of our technology and city noises etc were turned off. The sound of the earth would be present and it is grounding and calming. I’ve always loved thinking this.
I’m a big believer in yoga – yoga for myself and yoga for Mags. I could write an entire blog about how doing yoga when Mags was diagnosed, changed my life. I will, but today I feel yoga for kids with special needs is a really good thing. If you use it to connect to each other, just as a different activity to do. If you use it to stretch, build strength and skills. Its all worth it.
I hope you become a yogi with your lil yogi. Namaste. The light in me, sees the light in you.
There are a lot of ways we can measure our journey with Rett Syndrome. We can measure by the way we have grown and adapted, by what we have done to fundraise or raise awareness. The reality is the most noticeable measure is how Rett Syndrome has progressed. At times it seemed slow and manageable, then at other times it felt like a runaway train.
At 2 ½ years old Magnolia had difficulties. She had words but speech progression had slowed. She could use her hands, but she would also wring them. She would run around the room, unable to calm her body, but her body was strong. Apraxia (motor planning) was her biggest symptom. Rett Syndrome was present but not diagnosed.
At 8 years old Magnolia has had almost every symptom of Rett Syndrome. Some are mild others are pretty severe. She has lost hand function, lost her speech, lost her balance – making it difficult to stand or walk, she has seizures, compulsive hand wringing, dystonia in her arm, Apraxia, anxiety, Gastrointestinal issues, Parkinson like tremors and there is rarely a day she can breathe normally. Her breathing issues are so severe, we can barely leave her side, for safety reasons.
There are just a couple of symptoms left that haven’t impacted Mags as severely as they have other kids. She is still ambulatory (able to walk) but did lose the ability and then regained it. Although she is walking again, she is stable one moment and falling the next. Day to day we don’t know what her body will do. The other symptoms, scoliosis and kyphosis, seem to be knocking at our door. She walks with her head down and sits leaning to the side. So we work on it, hoping to prevent it by building strength.
We have been fighting this beast of a disease for 5 years. It has tested Magnolia’s strength and ours. It has almost taken her life several times, when she first started having seizures they came on fast and dangerous. There were days, that we didn’t think she would make it through, which really meant us as well. Rett Syndrome has one symptom that we don’t really discuss and that is death. It’s extremely difficult and hard to talk about. So we choose Hope.
Since Magnolia was diagnosed we were given a glimpse of hope that there would be treatments and a cure in her lifetime. So we grasp at hope, we focus on hope , we spread the message of hope. Because somedays hope is the only thing getting us through.
At age 3 she was able to pick up, hold and use her sip cup, all on her own.
At age 7 ½ splashing water but unable to hold on to anything
Magnolia at Neurology appointment getting her first EEG
At age 6 ½ hospitalized for uncontrollable seizures
Magnolia at Horse Therapy (hippo therapy)
Age 3 Excited to ride.
Age 8 More precautions are taken for safety