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 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.
Magnolia has been on her GI medication for 7 days, this is day 8. She doesn’t like them. She seemed to tolerate them the first few days but now she revolts when we have to give her the medication. Yesterday, I was working and Shelly brought Mags to my office (upstairs in our house) she needed help giving her the medication. Mags absolutely refused. I tried to give it to her, she cried. Again, I explained to her why she is taking the medication. It seems to be working. So clearly she did have either a parasitic infection or bacterial infection. We won’t fully know until she is done with the 14 days of medication and then bloodwork.
Knowing what she has been through the past year, I forced her to take the medication. I forced her to swallow as much as she could. She cried. It was emotionally tough.
Later in the evening, we had to give her the second daily dose. Mags is on 3 medications that need to be taken an hour apart. There is a regimen. We have to give her the belly meds, then an hour later give her her seizure meds, then an hour later her last medication. At 5pm, I got the syringe for her belly medication, shook the bottle, and smelled the medication. Still smelled like grape flavor. Brought it to the dining table, proceeded to try and give her the medication. She refused, she cried. So I put a droplet of the medication on my finger and tasted it. I immediately gagged, my eyes watered and I had to leave the room gagging. Thats right a droplet of the medication and I was not prepared for how bad it was. I actually threw up a little bit. The thought of what I just tasted was so revolting, I threw up. I tasted a droplet. Shelly and I couldn’t stop laughing at how bad it was, because we both realized clearly the torture we’ve been putting Mags through. I was not prepared for that taste. Oof. I think I need to start making Girl Scout badges for everything she completes. She deserves something for stomaching this medication for a week. I’ve never fought MMA style but if AJ tried to force me to take this medication I would fight him like I was Ronda Rousey. It would be going down in our house. Right hook, left hook, round about kick, elbow to the jaw, wrestle and throw him out.
Let me say. I taste almost all of Magnolia’s medications to make sure they aren’t too bad. If they are I disguise them in food or drinks. I taste her daily protein shakes to make sure the vitamins haven’t made it taste bad. I am not sure what happened on this one. I can’t believe this medication tasted so bad. How did I not taste this? I know I smelled it, but I ‘m thinking I didn’t taste her medication but just her brother’s medications because he came down with a chest infection and ear infection last week, so there were a lot of new meds being dispersed in timely intervals throughout the day.
How has she been swallowing or trying to swallow 10ml (2tsp) of this med and I can’t even handle a droplet. We are on day 8 and I can’t wait for this to be over. I’m positive she can’t wait. So for the next 6 days Shelly and I will force Magnolia to take a rancid medication because it seems to be working. So 6 more days of this is worth it because we have spent the past 9 months trying to figure out what is happening with her belly. Oh my goodness, this poor girl. I’m happy that the medication seems to be working but I could throw a chair out of the window in frustration for what Mags has to go through to get there. I honestly might buy her boxing gloves and let her hit me every time she has to take this medication.
She’s tougher than I. I couldn’t even handle a droplet. A DROPLET! Smells like grape, taste like a version of Hell.
Here she is, so proud of herself, she just swallowed her medication. Trooper!
I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome A syndrome where everyone is well rested, sounds amazing.
Secondly, Magnolia’s perseverance is unwavering. Every once in a while, I’ll sit back and think. We got this. And we do, but then we get thrown a curve ball. Seizures were a big curve ball. This past year of seizures has been infuriating. I hate to say this, but seizures take Rett to a whole new level.
The first few months with seizures, I believe I already talked about. They were very scary, our lives were spiraling out of control, emergency rooms, ambulance rides, scary phone calls, life or death became the norm. Then we got the seizures under control. Then the problem was, her medicine. Maggie was on a seizure med called Keppra. It helped her seizures and gave us all some relief, but then the side effects took, well effect. She became extremely irritated, emotional and dare I say, rage. We had frequent moments, where I would have to pin her down, while she clenched my back or neck and dug in with her fingers, she would bite my shoulder and scream. Googling Keppra side effects, keppra rage was a recurring theme. Maggie had it, and we wanted it to stop. The doctor agreed, but we couldn’t stop her meds, her seizures were uncontrollable with out it. So we had to put her on a different medication, while slowly weaning her off of Keppra. It took three months to safely wean her off of this medication and get it out of her system. When the drug was completely out of her system, we could tell a big difference. We went from rage back to our vibrant Magnolia. It seemed, we finally had her back, well Maggie with seizures.
We spent the next couple of months getting the dose right on her new medication Topimax. Topimax was finally working, but I noticed some different side effects. Some hair thinning and exhaustion. Since these side effects were better than rage, we’ve stuck with it. We started giving her some Biotin and that helped with her hair. Its a constant balance with her exhaustion though. She naps, we diffuse oils to wake her, give her snacks, anything to keep her awake enough to do school and therapies. We’ve learned to manage.
A few months ago, Maggie’s seizures increased. Her doctor increased her medicine, not much, but enough to stop the seizures. Then we noticed, she was having a harder time using her eye gaze computer. She was using it less frequently. Where, she used to interject a comment or two into conversations that were happening around her. She now barely tells us what she needs unless we insist upon it. Before the medication she was starting to build sentences, structuring two to three words together. All of a sudden, it was gone.
The hardest part sometimes is noticing something new happening with her, it is usually gradual. So when we realize it, we realize how much she has been struggling. Of course, in the past, there were days she used her computer a bunch, then other days, not as much. This is different. Its watching her language disappear, again. Its frustrating, for her and for us.
She is learning to read and write, but we have to force her, its taking longer and by the end of most days, I’m at a loss for her. I tell myself, as long as she is happy, we will keep moving forward, pushing her to communicate, to do whatever she can. I’ve been positive this has been going on since the increase of her seizure medication.
Well, the past two weeks we have seen an increase with her seizures, but not just that, her GI issues are all over the place and her breathing is worse. At first, I thought it was because we had traveled to Florida, travel tends to cause seizures because of exhaustion and dehydration. I spoke to her doctor and she agreed.But here we are two weeks later and her seizures have increased. So now we wait, I have a team of three doctors trying to figure out what we should do. Shelly and I brainstormed today anything we could think of that could be causing the increase of issues.
Then I spoke with her Epilepsy Neuro at CHLA. We discussed everything that has been happening. I mentioned that Maggie wasn’t using her computer as much. Right away, her doctor says, “That isn’t what we want happening. We will lower her dose.” I was floored, Maggie’s seizures have been increasing but we are lowering her dose. So I did it. I had to trust that if something bad happens, I can take care of it, Shelly can take care of it. Maggie will be okay, we will make it to the hospital if we need to.
The first day I lowered her dose, we were on high alert for more seizures. None happened. Know what happened though? She used her computer all day. She was more alert and happy. Its been a week and she hasn’t had a seizure, she has been doing more. grabbing for things, pushing herself to do more, on her own volition. Life is strange sometimes. Life with Rett is an emotional rollercoaster. A lot of times, things don’t go our way. This past week did. I had prepared myself that I may have to save her life if she has a big seizure, since she is on less medication. Not because I’m neurotic but because its just our reality. Instead, we had a good week.
She is so smart, funny and cute, like any other 7 year old. This past week, she has told me on several different occasions she wants a dog. Then she spelled the word “ocean” with a “C”not a “Sh”. She misses her dad, she wants to go surfing and she is over Frozen. She has a lot to say. Hopefully she continues to be able to say it. I need Rest Syndrome.
Not kidding. This is Magnolia at Speech Therapy the day I lowered her seizure medication dose. She was so happy, using her computer. 🙂
October is Rett Syndrome awareness month, but apparently so is February for Team Magnolia’s Hope. Wow, just wow! I am speechless with the amount of support, love, community, awareness and fundraising we just received this past month. It almost seems as if it was planned, but it wasn’t. The good deeds and love just kept pouring in and I’m speechless. Actually, not really. I’m happy, I’m proud, I’m thankful, I’m grateful and I’m overwhelmed with hope.
Living life with Rett Syndrome isn’t an easy one. We are constantly balancing our chaotic daily lives with the dream of a cure. Our community of friends, family and strangers has stepped up, time and time again. Thank you! Thank you! Thank you! So much happened in February, I’m going to try and recap each special event and moment.
First, we started off the month with the Soupergirl campaign. If you remember, this campaign was built by Sara and Marilyn the mother/ daughter duo who live in Washington DC and own a shop called Soupergirl. Check out their shop, click on the link….They wanted to bring awareness and raise money for Rett Syndrome because they have been touched by Maggie’s story. Again, we have never met them, but they just proved that you don’t have to know someone to stand up and fight for them. They personify the definition of, kindness of strangers. So blessed and grateful for their support and campaign. We will meet one day and there will be hugs and tears over a bowl of delicious soup, I’m sure of it. Thank you Sara and Marilyn from the bottom of our hearts.
Secondly, Maggie’s cousins in NYC put on their 2nd annual Gaga for a cure for Rett. They are ages 9-14 and took it upon themselves to bring awareness, fundraise and do everything they can for Maggie. Maggie has cousins, 2nd cousins, aunts and uncles pulling for her and doing everything they can to help us fundraise to a cure. I am so proud of these kids for their tenacity, empathy and love for their cousin Magnolia. Its pretty awesome to see kids become advocates.
Then, Reverse Rett Austin happened. I had some old friends from high school come out and support, it was wonderful to see them. Then…My family showed up in full force. It was amazing. Aunts, Uncles, cousins, second cousins, and so many more. It truly was awesome and heartwarming. I couldn’t be more proud of my family. They have been there when it mattered most, showed up to donate, fundraise, emotional support. I’m overwhelmed by the love and support. And my parents! They came out in full force and I’m so thankful for their generosity, support and love. Also, I’m wondering when we are going to Puerto Vallarta? Thank you everyone, I love all of you dearly. Oh, and Reverse Rett Austin raised over $140K!!!! What?! Such an amazing job by all of the Rett families involved. Everyone should be so proud. This event was spearheaded by Rachel and Jason Rothschild and I’m truly honored to know them and I am inspired by their tenacity to fundraise for the NYC event and now the Austin event. Neither would have happened if they didn’t do it. Its families like theirs which have put us in the position to cure Rett. Much love and thanks to you guys. Thank you!
Then, a dear friend of my sister’s, Linda Buffington, contacted me and wanted to fundraise for Rett. Linda is a teacher and I am passionate about the education initiative at GP2C. So we decided Girl Power 2 Cure was an awesome fit to raise awareness and fundraise for. Linda put together a Rodan and Fields party and asked people to donate to our fundraising page for the Disney Princess/Girl Power 2 Cure half marathon. This was such a gift, without her I wouldn’t have been able to raise what we did and we met our goal because of it as well. Truly grateful.
Then, the Olympics happened and AJ put together a video of Maggie and her buddy Marlowe skiing with Olympic Snowboarding Gold medalist,Jamie Anderson. It was such an amazing experience for her and really for all of us. It was pure luck that this day happened. Thank you Jamie Anderson for coming out and spending the time to snowboard with Magnolia and Marlowe. We will treasure this day. Hope to see you again. Also, check out More4Marlowe on Facebook and support Marlowe’s family on their journey with Rett Syndrome. Follow Jamie on insta @jamieanderson or Twitter @JamieAsnow
Finally, Team Magnolia met up with Girl Power 2 Cure to run the Disney Princess half marathon in Orlando, FL Team Magnolia consisted of Jenny(me), my niece Kaylen and her boyfriend Tyler. What an amazing weekend. We met our fundraising goal, thank you to everyone who donated and fundraised (hugs to Linda Buffington). I’ll recap this entire weekend in another blog. I’m just so proud and thankful for Kaylen and Tyler. We had a great time and it was just a wonderful experience seeing these two young adults, feeling empowered to change the world. Their life’s journey as adults is just beginning and honestly, they will do great things.
So much happened this month. Fundraising, awareness, exhaustion, Rett life, typical life, travel and I gave a speech. Life is crazy. Our life is crazy on steroids, but our family and friends keep showing up, showing up and showing up. Just so you know, I see you showing up across the country, we feel your love and Maggie knows it too. Thank you. We are grateful.
Also, Gray turned 2! In the midst of this chaotic month of travel. AJ had to single parent while I was gone twice, and Gray decided to stage dive out of his crib and not nap or sleep. #life #stayathomedad
Ending February like……
Warning! Cute post alert! Maggie played soccer and had the time of her life. We became a soccer family and it really brightened up our Saturdays. To be able to go to the soccer fields and have Maggie play and be incorporated into a game that AJ played, and almost all of Maggie’s cousins play, was truly a rewarding experience. We tried a few years ago to have Maggie play, but she became ill after the second game and was out for the season. This year, Maggie stayed well and couldn’t have been more happy to go play soccer every Saturday. We truly looked forward to it as a family.
AYSO, is the American Youth Soccer Organization and they have a VIP program which incorporates kids with special needs. Each kid is given a buddy and that buddy shows up every Saturday to assist their assigned kiddo to play soccer. It really is a good experience. Inclusive, supportive and fun. Yes, please!
This season, Maggie’s buddy was Steve. Every Saturday, we would walk up and he would yell “Maggie!” Maggie would smile so big and start running towards him. She loved playing with him and I’m fairly certain, Steve looked forward to seeing Maggie as well.
Once the season ended, there was a team party at a bowling alley. I wasn’t looking forward to going. Maggie isn’t always okay in new places. A bowling alley seemed like too much sensory. When we got to the bowling alley, we sat next to another soccer family. The music was really loud and the other mom notices Maggie was uncomfortable. She knew right away, sensory overload. Without even asking me or hesitating, she went and asked them to turn the music down a little. They complied. Maggie was a little more comfortable, but not fully. I wasn’t sure if we would bowl. After watching other families bowl with their kids, I decided we would try. Maggie and I got our bowling shoes and headed over to a lane. We had just started walking over to the bowling lanes and saw Steve walking up. Steve was holding flowers and Maggie started smiling so big. Maggie was thrilled that Steve showed up to the Bowling Party. For the next hour, Maggie ate French fries and bowled with him. I was there too, but she could have cared less. Steve was her buddy and she wanted him to bowl with her. I’ll be honest, my eyes welled up a bit with tears a few times. I had to tell myself to pull it together. It was sweet.
During the soccer season, I hadn’t really discussed with Steve why he was Maggie’s buddy, I just assumed it was because other buddies couldn’t handle all of Maggie’s needs. Its funny how life works out sometimes. Steve told me, he’s actually the organizer for buddies. He saw Maggie’s soccer application, showed up the first game and saw her dad had to be her buddy. Steve decided he would do it, he had never been a buddy before, he was a refereee, but he wanted AJ to be able to sit and watch. The whole point of the program is for parents to get a break and sit.
I’m so glad that Maggie took the initiative to tell us, she wanted to play soccer. I’m ecstatic that she was able to play the entire season and have as much fun as she did. I’d say this soccer season was a success for Maggie.Thank you Steve for being an awesome buddy for Maggie.
Steve, if you are up for it, she would love a buddy to go skydiving with next.
We are so excited about it. Rett Syndrome is starting to get the awareness that it deserves. This campaign has been a long time coming and is the result of four Rett families putting in their blood, sweat and tears to make it happen. Mostly tears. I am so thankful for Stephanie Bohn, Matt Baker, Nanea Miyata and AJ for making this happen.