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.
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
I can’t tell you how many times I’ve been asked, “Do you see how well Gray is doing?” “Isn’t it exciting how well he is doing?” “Have you noticed how well he is doing?” I think these are all questions of good intentions but inside it makes me internally roll my eyes. LOL. Yeah, I’ve noticed. We are living it. Of course, I’m grateful that he is healthy and thriving. Having a healthy kid makes life easier, its that simple.
We have lived two different realities of raising kids. Its not an easy task. There is a big difference in the childhood that Magnolia has had and the childhood that is forming for Gray. We already see it. We’ve discussed it several times, it’s like living in an alternate universe and the original universe, at the same time. I’m sure that’s confusing, but so is our life. As a family unit, we work everyday in finding the balance for both of them. It’s hard – Magnolia’s needs outweigh Gray’s infinitely. He is 2 1/2, he can climb in to his chair at the dining table. He will sit, eat, drink, and converse with no problem. Most of the time he is leading the conversation. His language at 2 1/2 is really good. Last night at dinner, he told us he had a nightmare about a shark eating his hand and that’s why he screamed for daddy in the middle of the night. Mags has nightmares too but we have no idea what they are about, just that she says “scary, bad”. She’s not descriptive about what happens in her nightmares.
Gray and Mags have started to team up. At least, Gray has figured out they should team up. He will tell us Mags wants a cookie, and he does too. She’ll laugh and look at us smiling. He is definitely on Team Magnolia. Or at least his version of what Team Magnolia is, and that seems to be the team that likes desserts but hates veggies. As cute as it is seeing them bond, some days, it’s just hard to think about how different it could have been. I try not to think about it, but everyday is different, so it is hard not to think about. Honestly, we live with our daughter having Rett Syndrome, its hard not to think about. As type this, Mags is lying down because she had 6 seizures this morning. Everyday I have to tell myself to focus on the present and not the reality that didn’t happen. Watching Gray grow up is an entire different ballgame, he is 2 ½ and his skills aren’t lost on us.
I think about when Magnolia was 2 1/2 years old…
She was just the cutest little thing. She smiled at everyone, she loved to chase and hit balloons. She loved to go to the park, swing, play in the sand and walk around in the grass. She loved to draw with paint and chalk. She loved playing with our dog Gilmore, throwing the ball for him. She loved to run. Our favorite place to go was the zoo.
At the same time…
She hated going to restaurants, music class or any place loud. Festivals, farmers markets and fairs became too chaotic for her. It was sensory overload. She had previously loved all of these places. She stopped progressing in her speech. At the peak of her language, she was speaking two word sentences, and had 75 words that she used. I know because the speech therapist made me write down every word that she used and how often. She started rubbing her fingers. She would wave her arms when she was excited. She had a hard time calming her body to go to bed. She began to meltdown all of the time. This was the time between 2 1/2 and 3 years old.
All of a sudden, she went from needing a little bit of therapy and everything will be fine to needing a lot more therapy and she should be okay, ultimately getting diagnosed at 3 with Rett Syndrome and our world collapsing.
It took years for us to really pull ourselves together. Sure, AJ was blogging and doing videos and trying to raise awareness for Rett Syndrome. I was getting involved in local Rett events, meeting up with other families and also running half marathons. But we weren’t really okay. We were putting our best foot forward.
Now that Gray is 2 1/2 years old…
Its a whole different ball game. He has tons of language. He can explain in detail, most of the time, what is bothering him, what he needs, what he wants and whatever it is that he needs to communicate. He is figuring out Magnolia’s computer. He wants her to communicate with him. He is learning her yes/no. It’s pretty amazing, since there are adults that get confused by all of her ways of communicating. He is smart and because she is too, they will figure it all out.
His physical skills, motor planning, language and complex directions are not lost on us. Yesterday, Gray and I made a fort. He decided he wanted an apple. I said, I would get him one. He climbs out of the fort, picks up a small chair,starts to carry it to the kitchen. He tells me, “No mommy, I go get the apple and a knife.” Obviously, I stopped him, but I loved everything about the scenario. The independence, the forethought of carrying a chair to the kitchen, knowing that he wanted to have apple slices and not just an apple. For some of you this seems simple. But for us, this was amazing.
At the same time, there is no comparison of either of their skills. We are constantly amazed by Mags but wish it was easier for her. We are in awe of Gray’s skills and how fast they come for him. He is strong, he can pick up his sister and is also her biggest fan.
We try to balance our attention to both of them, make sure they both are prospering. As they both get older, it actually is getting more manageable. For those that don’t fully comprehend the difference, this should explain it. When Magnolia was 6 years old, she was having a really bad day and couldn’t walk. Gray was 9 months old and crawling. I was by myself at home. I needed to get Mags upstairs to bed. I had both kids and couldn’t leave Gray by himself. So I told Gray to crawl up the stairs in front of me. As he crawled I carried Mags. He was smiling and happy and I kept encouraging him to move forward. It took awhile because, we went at his pace. I would let Mags stand and try to step up, but she really couldn’t, so I would pick her back up. Team Magnolia made it up the stairs. We all got in Mags’ bed, read stories, and giggled. It was one of those moments I realized Magnolia’s younger brother will be stepping up to help us, way before he should have to.
There isn’t a day that goes by that I’m not grateful for the love and strength that he brings to her. Their childhood and relationship is both beautiful and heartbreaking at the same time. They both want to play, its just harder. He is having to be more patient, more empathetic and process more than most kids his age. At the same time, his skills have been advancing so much, it has made Mags a little more competitive. On her good days, she pushes herself to do the things he is doing, without us having to help her. It’s that fire in her belly, that lets me know. She will be okay. They are the cutest and fiercest little Team Magnolia. They are great for each other. They will both end up being wonderful surfers and also doctors. I just know it.
It’s finally here. I can’t believe Magnolia is starting 2nd grade. She loves music, mostly #taylorswift and the #lumineers . She loves #adventuresports#familyadventures and watching #fancynancy she loves #harrypotter She will choose to try and #rockclimb over going #shopping . That is who she is. She wants to be a writer. For the first day of school, she wanted to get her hair cut, she wanted bangs.
Every year she grows, she learns and she pushes the boundaries. Every year we learn and grow with her. From the beginning of our journey we have posted our ups and downs. It’s not always easy to talk about. We have talked less about her education and mostly about her therapies. Figuring out the best way for her to get an education is stressful and emotionally exhausting. It’s worth it for these moments though. Mags is homeschooled but also goes to school, one day a week. She loves going to school. She loves being around other kids her age. Putting in the infinite amount of extra work to make sure she gets the right education is worth it. So today AJ took Mags to school, he wrote up a letter at 5 AM this morning 😳. The letter introduces Mags to the other students. It was a letter we always mean to write but tend to forget. I’m glad AJ did it. Truly, when other people understand and know what #rettsyndrome is, they tend to be more inclusive That’s the goal, for Mags to be included in everything.
We don’t know what each day will bring. Magnolia has taught us to get up everyday and fight for what we want for ourselves, for her, for our family. She wants an education, she is smart, she deserves to get it.
The letter AJ gave out to her class reads:
Hi! I’m Magnolia. My friends call me Maggie.
I’m in Second Grade.
I can’t really talk, but I understand everything you say.
I have Rett Syndrome so its hard for me to control my body.
Sometimes its even hard for me to breathe, but I’ll be okay.
I have a computer that helps me talk. It follows my eyes so I can choose things to say.
I’m pretty good at yes and no questions – I’ll look at you to answer “yes” and I’ll look away to answer “no”.
Shelly’s a friend of mine She can help you talk with me.
I like skateboarding, surfing and Wonder Woman.
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.
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.
Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for a long time. She believes the time for her daughter could be gone. She actually told me that, but she hasn’t stopped fundraising. In that moment I was so sad, then mad. Sad that she had been through so much and was still fundraising. Sad that most parents with younger girls probably don’t stop and think about the parents of older girls. The parents that have gotten us to this point. Mad because honestly sometimes life just isn’t fair. And in this instance it truly wasn’t.
Her words were powerful, they weren’t meant to stir such emotions from me. She was genuinely hopeful for my daughter, but not as much for hers anymore. (Don’t judge her for her feelings, they are hers to have, and I understand) To tell you the truth, in that moment I felt a mother’s love transcend that of her child and onto mine. All of the hopes and dreams she had for hers, she was hoping for mine. I teared up, I started crying. I tried to hold my composure, but it was impossible. We chatted about her daughter and what she had been through. We chatted about Mags and what she had overcome the past couple of years. We chatted about a lot. In the end, I thanked her for never giving up. I cried in the car as I drove away. I told myself, for her daughter, I won’t give up either. Rett really does suck, but there are some amazing people that I meet.
Her story isn’t the only one. If you do anything today, stop and think about those parents that never gave up, continued to push through and fundraise, push the boundaries. They are Magnolia’s heroes, they are her angels, they are her hope.