Life was finally moving in a smooth direction. In late February, thanks to new dosing of medications, her seizures were back to being under control, her breathing issues went from a constant struggle to a regular but not constant problem (we’ll take what we can get), and she gained 8 pounds, allowing us to stave off a feeding tube surgery for a little bit longer.
Then in February we were a part of 3 amazing Rett Syndrome events. Mission San Antonio was hosted by our family and friends, and raised almost $100k. Austin Reverse Rett which we co-chair and is hosted by the Rothschild family was an incredible success. AJ actually delivered the key note there (we’ll share his specch here shortly). And the Disney Princess Run in Florida with Girl Power 2 Cure was an amazing experience for all of us (we have a video from this adventure as well, but felt weird sharing in the midst of the Coronapocalypse). February was exhausting but fun. AJ and Mags did end up in the ER one day but it was to deal what was thankfully a shortlived, temporary but dramatic uptick in seizures . It was an emotionally exhausting month. Fundraising for Rett and balancing Rett symptoms.
Since we were traveling so much in February, we were watching what was happening with the Corona virus. We had multiple discussions whether we should be traveling or not and while we did start taking precautions, much like mostly everyone at the time, the risk to travel seemed low. I brought multiple packages of clorox wipes and to wipe our airplane seats, trays etc. and we were being vigilant about washing. I like being prepared and when you have a kid with a complex medical disorder being prepared is necessary. I actually wrote about a similar hypothetical in 2017 (https://www.kveller.com/my-daughter-is-disabled-could-we-survive-a-natural-disaster/) and I can’t believe this is real life now. But at least, I had thought about what preparation might look like.
While traveling, fundraising and dealing with seizures, we also knew it was Shelly’s last month with us. Shelly has been Magnolia’s aide for 7 years. Her leaving was hard on everyone. We all cried. We couldn’t dwell, because we needed to find a new aide, it’s a necessity for Maggie to attend school and for us to attend life. So on top of traveling, fundraising, running, seizures and grieving Shelly leaving, we searched. By the end of February we had a new aide. She trained with Shelly and started school at the beginning of March. She was with us for 2 weeks. By the end of her 2nd week, the coronavirus hit the US, California was quarantined and all of our lives were changed forever. Since March 5th, it’s been the four of us and our 15 week old puppy in our house and that’s it.
It is not easy to be in quarantine with a preschool boy, another kid with medical needs that always needs assistance and a new puppy.
The funny thing is, it isn’t easy but it has been more fun than hard. Gray and Magnolia are actually playing and communicating so much more with each other because we aren’t just running around. Magnolia is using her computer more. We’ve been able to really focus on our family and working together. Sure, we worry about medicines, groceries and all of our health, not to mention the future of the world, but we work well as a family.
The uncertainty of what’s next is the hardest part. As a kid with respiratory issues, Maggie would be in the high risk category. Will we ever feel 100% comfortable with Maggie returning to a school without a widespread successful vaccine? Will we be ok sending Gray back to school or returning to the same kind of work without dreading the possibility of picking it up and bringing it home?
For right now we are managing well. We are happy. We are healthy. Life is smooth in the apocalypse. And, I was prepared, more or less. I think the most surprising part about the apocalypse is how much laundry there is. That’s one thing I wasn’t prepared for.
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……
My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do with Magnolia, again.
The last time we went to Disney, was the day after Magnolia’s diagnosis. December 18,2013. It was a nightmare. Crowds, sensory overload, heat and waiting in long lines are all things that Magnolia doesn’t handle well. Even with Disney’s Disability pass, which helps ease some of the wait, it wasn’t an ideal situation. We were hoping Disney would cheer us up, but she ended up having such a bad time, we hadn’t been back. Until now.
After standing in a long line to buy tickets to get in, then standing in a long line to get in the gate, we headed over to stand in a short line at guest services to get the Disability pass. I was already uneasy, but I put on a brave face for Maggie. She, on the other hand, was so excited – her smile ear to ear.
We met up with Lynn, Sean, Lindsey and Sadie – they had been at the park for a few hours already, so they were ready to take it slower with us for awhile. We rode the Little Mermaid ride, then the swings, the parachutes and a few other rides. We rode on Maggie’s new favorite (and mine), the Cars ride. We even went and saw the Live show Frozen. Any of those kinds of shows have been hard to hold her attention – but she sat for an hour watching and bopping along to what essentially amounted to the Frozen soundtrack. Magnolia did great, there were a few meltdowns, and one small seizure, but it was hot and busy, so it was all to be expected. Even the seizure is something we’ve become so adept at handling that little ones barely phase me. But, still it was a lot and we decided at 4:30, we were done. It was a great day. I couldn’t believe how well she did.
The next day was Disneyland. Disneyland was so crowded, a cast member ended up telling me, it was one of the busiest days of the year. Perfect.
Maybe two days in a row at theme parks was too much for her – that first day went so well, we just assumed she’d be great. But she was overwhelmed, tired and hot. She melted down waiting to meet Tigger. So we ducked into an air conditioned store where she rejuvenated a little. We rode Splash Mountain, which she loved. She also loved the Jungle cruise ride. In between all the rides, though, it was hard for her, and ultimately, she had to leave earlier than she would have wanted on the second day. To minimize the sensory overload, we have her wear earplugs, and that really helps.
I’ll take this trip to Disneyland as a win. She wasn’t miserable and I think she’d like to go back. Maybe next time, we head to Disneyland first and not go to two parks in two days. Live and learn.
It was great to be with family, people that love Maggie and want her to have a great time. I think she will probably just remember this trip to Disneyland as fun. We probably could have ridden Splash Mountain the entire time and she’d have loved it.
California Adventure swings that go in a circle? She loved it.
California Adventure, walking with the cousins. She loved it.
Disneyland Splash Mountain. She loved it!
Disneyland Jungle cruise. loved it.
Christmas day. 2015. End of Leg 1 of our two week vacation.
We all sit around the living room of my in-law’s house, opening presents, sharing the last moments of togetherness before we head out on the next leg of our journey. The day before, we spent Christmas Eve packing up and we’re ready to go. We had packed two of the biggest suitcases we own. We needed to pack for two climate for two completely different types of vacations. Texas is always cold, though this year it was unseasonably warm, and our next leg was going to be on a boat and we weren’t sure if we were going to see modern amenities, though it turns out, they were unexpectedly well equipped. Not knowing that going in, though, required two gigantic suitcases of clothes for various weather conditions, therapy equipment needed on a daily basis, daily supplements for Maggie, enough pull ups in size 5 for the week on the cruise, books, and a few toys that make Maggie happy, not to mention our stuff. We had a lot of stuff!
Our flight to Florida was uneventful, thankfully. It was the first time we were flying with Maggie on something other than a direct flight, having to make a quick stop in Dallas, before continuing on to Orlando, but she was a trooper. We jumped on a golf cart reserved for the disabled and cruised over to make our connecting flight with no problem. When I asked if we could get on the cart, there was initial hesitation on the part of the driver. I wonder if he was in a rush, or if he saw Maggie, and thought, “yeah, they qualify.” Whatever it was, it was convenient to be able to ride through one of my least favorite airports – it’s just so big – especially since Maggie would not have walked(what felt like) the mile and half between gates we had to go. She didn’t fall asleep on the connecting flight, but was in good spirits the whole way. It was late in Orlando but Maggie was very excited to see her grandparents. My brother Steve’s family had already arrive and he was there to help us with bags and greet Maggie, she was very happy to see him too. As luck would have it, Maggie’s best friend/babysitter/aide/nanny Shelly arrived at the same time we did. So for Maggie things were good. But it was 11:00pm, so it was right to bed for her – we would have a big day tomorrow.
The next day, we woke, had room service breakfast and brought our carry on luggage to the bus. The Disney Cruise takes your “checked bag” from the hotel to the boat for you which is a nice convenience. Jenny packed a “Day” bag for Maggie, so we would have some extra stuff for her. We were feeling optimistic, happy to see family and ready for travel. Orlando is landlocked so, cruising from Orlando would be pretty boring, which is why we had to take a 45 minute bus ride to Port Canaveral. We knew we were going to be headed out with a ton of people and were ready to keep Maggie entertained, happy and hopefully not overwhelmed. Crowds make her anxious.
Day to day, we have down very well and when we travel we learn as we go. Every trip is different. So after our experience at LAX, we sat Maggie away from the screens on the bus, looking to keep her sensory system in check as long as we could. When we got off the bus, it was a mad house, trying to register to get on the boat. It was well handled, but since boarding wasn’t until 11AM and people started arriving at about 9:30AM, there was time to kill, and a logjam of people trying to kill said time. Maggie was entertained by Shelly, Jenny, her cousins and everyone else while I went over to register her for the KidZone. This was my first indication that things wouldn’t be easy for us. I mentioned Maggie has special needs and an aide has to be with her at all times. The Disney “Club Team” balked. “Oh no. We can’t allow that. There will be plenty of our trained staff to make sure she’s safe.”
I may have overreacted.
“Do you have someone familiar with non-verbal children? Someone who can direct her in all of the hand over hand activities, so she won’t feel excluded? Do you have someone working on your cruise ship who is an expert in Rett Syndrome – who understands partner assisted scanning and can communicate with my daughter if she needs to go to the bathroom, or if she’s hurt? Because I’m bringing that person with me on your boat, and we were assured accommodations would be made to make sure my daughter could participate.”
I think my mom would have been proud of me for that one.
“You’ll have to speak with a manager on board, but I’m sure we’ll figure something out.”
The next couple of hours as we readied to board the ship were a bit messy, just dealing with that many people is a lot for anyone to handle. But eventually we got on the ship.
She’s smiling. It was fun. But, that was a lot. The whole ship can’t be like that? Can it?
And then it hit us. This is a Disney cruise. When we went to Disney Land a few days after her diagnosis and she literally tried to jump out of the It’s a Small World boat, we finally started to understand what sensory integration problems really were. And here we were facing a week long, floating, sensory integration problem.
Timing is always a big deal for us. We plan around Maggie’s schedule, especially her naps and meals. If she doesn’t eat or nap. Maggie is extremely unhappy, sometimes inconsolable. Once we registered to get on the boat, we were told the rooms don’t open until 3:30, two full hours after her nap, this is going to be a problem, but we can handle it. Then after boarding the boat, we both realize things are going to get out of control quickly. Maggie needs to eat ASAP, soon she will need to nap and now she is getting sensory input from every direction this is going to lead to a verrrrrry cranky Maggie. We’ve gotten very good at managing her sensory issues, so few people have seen cranky Maggie. Her therapists, Shelly, and us. And we intend to keep it that way. For her, not for everyone else. A cranky Maggie is uncomfortable, frustrated and not having a good time, in a world that feels like it’s assaulting her. That’s the part we want to avoid.
All of a sudden, Jenny and I are in protect mode. Shelly knows, but no one else notices what we’re doing, but I feel it. Here we are on this trip for my dad, that my family has been planning for a year and a half and it’s not what I expected. It’s not the right place for Maggie. I am overwhelmed with the feeling of …I must protect this house!
First order of business is make sure there’s a comfortable space for her. Shelly tries to take Maggie to the pool area to rest, but its chaotic. Jenny is looking for a quiet area for Maggie. Yes, right now it is taking three adults to manage traveling with Maggie.
I go on a mission to try and get into our room early. Nap time is here. I sneak under the rope barricading the guests from their rooms and look to find someone to let us in.
“Rules don’t apply to some people, I guess” – I hear someone whisper. “If only he knew,” I thought. We would give anything to be a family that doesn’t always have to be on high alert. I’d love to tell my kids to wait, they will be fine just swim with the other hundreds of kids.
I find our room and, after making sure it was one of the rooms that had already been cleaned and prepared I retreat to find Maggie. Jenny was in the same protect mode and moved her from this.
To a nice quiet area where no one was and the blaring sound of the DJ didn’t quite reach. There’s a fountain she can play in, but not safely, not a real pool. I shudder to think the only thing she’ll be able to do is play in a fountain on an expensive Disney Cruise for 7 days. I take Maggie and bring her to the room. We read stories, talk about the cruise, and what we are about to embark on (as we have a hundred times before or so), and eventually she falls asleep.
I text reinforcements (Shelly and Jenny) so I can continue to “establish a perimeter”. Only my perimeter is a force field to protect Maggie. Shelly arrives to watch her and I head to the “Kid Zone”. Jenny has started to look around the ship for safe places as well.
“I was told to speak to a manager when I got aboard.”
“Right away, sir. I hope you’re having a magical day so far.”
“Yes. Magical. Thank you.”
A few moments later, a 24 year old kid (I remember when he was I. or I was him. Anyways it’s like looking into a black mirror at an alternative universe) shows up stating “I’m the manager.”
I explain, as I did on shore about how Maggie’s aide simply must be in the kid zone for her to safely play. And he, as they did on shore, assured me she’d be fine with their current staff, adding “we simply can’t allow adults that aren’t employees into the kidzone.”
This is getting frustrating, we were told before the cruise Shelly would be able to accompany Maggie into the Kid Zone. We want Maggie to feel included, but she also needs a lot of help.
I explain our situation again and implore him to try to find out if accommodations can be made. He agrees to do so and I tell him I’ll be at Guest Services.
I head to Guest Services.
I explain that the ship is simply too loud. They mention the first day is always louder and more chaotic than the rest. The room, though a fine size, is smaller than an average sized hotel room, and as such, doesn’t have the requisite amount of aimless wandering space that Maggie would require. We were under the assumption, it would be a little larger. The kidzone is unacceptable as a playzone for Maggie without an aide. And there’s nothing for her to do on this ship. We were told there would be accommodations for her and so far, within the first 2 hours, before we have even left port, everything is falling apart. I demand a solution.
The lovely South African, or New Zealand lady ( I confuse those accents all the time), talks to me calmly, apologetically, compassionately. She offers to show me some spaces that might be nice for Maggie to chill out in. They’re rarely used, usually quiet. She leaves her desk and walks us around the ship, which feel uncharacteristically shaky, though she assures us that’s normal. She shows us the schedule of when movies are playing (blaring) at the pool, so we can avoid them. She suggests they might be willing to lower the volume. She shows us the schedule of some of the tamer events. She reminds us that things are crazy now because everyone is on the ship, but once we port, things calm down a lot. I thank her. She tells me to have a magical day. I feel a little like that’s Disney code for screw off.
When we return to the front desk, the kidzone manager kid is there. I ask him if he has good news for me. He regrets to tell me that he does not.
“That’s unacceptable,” I say. “I’m going to need to talk to someone higher than you,” I say or something like that
Jenny is crying, and embarrassed that I’m yelling at this kid. We are prepared to walk off the boat. An hour later they have a solution for us. Chalk that up to a win. In spite of the method.
At dinner, it’s loud. It’s a banquet hall with hundreds of kids under the age of 10, with the requisite clinking and screaming. I try to order her food quickly. If we get her eating, and we’re singing during dinner, she’s likely to be ok. The staff doesn’t understand. It takes too long. Maggie needs to escape. We take her outside the restaurant. There’s a band playing. We find a quiet corner and sing her favorite songs. She’s happy.
We bring her back in and finish our meal. Shelly takes her to bed. We sigh in relief. One day down. Six days to go.
After that first day, the food service was actually fantastic – catering to her specific dietary needs exquisitely. The head server made sure to take our gluten free/dairy free order down for breakfast and dinner to make sure Maggie had everything she needed at the time she needed it.
Day two was hard. We were at sea and there really wasn’t much Maggie could do. Her favorite thing to do, which we thought would be our saving grace is swimming. The pools were packed and there was a Disney movie loudly playing on a jumbotron at all times. So we spent most of the day trying to figure out things for her to do, try to help her not feel overwhelmed and uncomfortable. By the end of the day, though blasphemous to even think, we weren’t sure we would make it through the entire cruise. Can we really put Maggie through this for 5 more days?
Day 3 we woke up and the ship was really rocky. We were sure we were getting off the boat to fly home. We went to breakfast, Maggie was wimpering and then turned pale white, she is obviously nauseous. Luckily this was a Port day. Almost everyone got off the ship, but us. We stayed and played in the pool area for hours with Maggie. It was us and the life guards and other staff. We asked them to lower the volume of the movie. They tried to be helpful and cold also see Maggie wasn’t stable, and would watch her like a hawk while we were in the pools. Fine by us. Shelly grabbed Maggie at noon had lunch with her and Maggie took a 3 hour nap. So Jenny and I went into Mexico to have lunch with my parents. Things were looking better. We decided to keep trying. We wanted to be with my family, we will figure it out.
By Day 3 we started to find a routine. We’d wake up, eat her pre-ordered breakfast, swim, eat a gluten free donut for snack, swim, eat lunch, then she’d take a nap. It was still too loud, but if we sang her favorite songs to her, she seemed to be able to focus on us and everything else would fade into the background.
I was singing constantly. I had to apologize to people in the elevator.
Jenny and I would escape to the ports, enjoying traditional Mexico food in Mexico, scootering to a hidden little restaurant in the Cayman Islands and wading through street peddlers for jerk chicken in Jamaica.
With our mornings spent relaxing with Maggie, there was enough time to visit each port briefly. The Caymans we could have stayed at for another day or two – it was lovely. Same goes with Disney Island. It was a beautiful, extremely kid friendly beach. There were no roads, or anything. It’s just a beach. For Disney cruisers. It was relaxing. And just what we wanted and needed.
For the rest of the ports, it was nice to see so many places, but, primarily, it was just nice to get off the boat. People had started verbalizing this was the “rockiest ship they’ve ever been on”.
“Perfect,” we thought.
The moment we start to feel nauseous, we both fear Maggie feels the same. Earlier in the week Jenny and I had both discovered the on board gift shop sells those acupressure sea bands. We both buy some. The four of us (Shelly included) wear sea bands for the remainder of the trip and they help immensely. I’m not sure how much they helped Maggie, she seemed less nauseous, so I was glad there was something that seemed to help that wasn’t medicine. After our last experience with medicine, we’re scared of most medicines at this point.
The afternoons were spent walking around visiting the Disney characters and taking photos with them. Maggie, most of the time, loved it. The Disney staff weren’t very accommodating with the special needs thing, though. They required everyone to wait in line as there were no fast passes or anything, and since standing still is complicated for Maggie, one of us would wait in line while Maggie jaunted around, only to be retrieved at just the right moment. They also didn’t fully understand the idea that not everyone should scream in order to get her to smile, but most of the characters, Maggie was thrilled to meet, anyhow. Later, when I was talking with her on her computer, she told me she loved meeting Mickey, Minnie and Tinkerbell but did not like seeing Daisy Duck.
Poor Daisy Duck.
Also on Day 3 we found out they had those foam ear plugs at guest services. What a life saver. We put those in and Maggie was back to her old self, more or less. Dulling the sounds, really helped, and while her smile never really went away throughout it all, we saw less tears and frustration after we started using ear plugs. We saw more focus and less escapism with them in. Why didn’t we think of this sooner?
Things started to look up from here. Her cousins start to grasp how to engage with her. Her girl cousin, Ai-Linh starts using partner assisted eye gaze – asking her yes or no questions and noticing if she looks directly at Ai-Linh (yes) or turns away (no). She orders french fries so Maggie can have some. Though she makes a point to let her brother know he’s not allowed. She helps pick out which princess she got to dress up as.
Her cousins are having the time of their lives – free from any real parental rules – we barely see them – they’re at the kid zone or on the sports deck. Liem remarked a handful of times, “This is the best vacation ever”. We all eat most meals together, and though the first few days were stressful, the remainder of the trip was nice. I think it’ll be like that no matter where we go. New places present new issues and until we figure out how to erect our Maggie force field, we’ll struggle to understand these new worlds.
The whole trip was a reminder to us how different things would be if Maggie didn’t have Rett. How awesome this would have been for her if she didn’t have the difficulties she has. But that’s not our reality or hers . She loves Disney, Frozen, Mickey, Dora, Tinkerbell – these are her faves. So we were really hoping for the best. This cruise is a fantastic, wonderful vacation for kids. If your kid has food allergies, issues, they really cater to you, but if your kid has sensory issues or anything else, it’s not the easiest place to be. And, if we knew what it was going in, or if we had spent any time really thinking about what it was going to be, other than Jenny’s constant worry about Maggie’s safety, we could have prepared better, we could have set up our perimeter earlier. We expected it to be magical. And it was, once we decided to make the magic on our own.
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew that two years later, I’d be running my 3rd half marathon, 13.1 miles. It’s not easy, but it is worth it. I kept telling myself, during my training. This is the last one, and possibly it is. I just don’t know. I think I’m more interested in running a 10K, I can run that easily, and not kill myself during training. There is just something about those 8, 9, 10 mile training runs, that beat my body down. It took me longer than usual to recover, and my right knee was really hurting. If you saw me, there were times I was icing my knee while driving, icing my knee at a movie or our comedy show, and icing my knee most evenings while drinking wine and watching The Walking Dead. But, that being said, I finished this half marathon and thought I could do that again.
There really is an exhilaration that comes from running and completing a tough run. For me, it is very emotional. I cry while running during training and during the race. There are times, my body feels heavy, aches or is exhausted but what really keeps me going is thinking of Maggie. I can’t tell you how many times, I would want to stop running before I should, but I would say out loud while running “Keep running, don’t stop, Maggie doesn’t get to quit.” I’m sure anybody that I pass thinks I’m crazy but it really helps me focus. Because Maggie doesn’t get to quit Rett, we don’t get to stop fighting for her, its not okay to cruise to the end. We have to finish strong.
This race was extremely special for me. This was my second time running the Disney Avengers half marathon for Girl Power 2 cure. The second time running with my niece Kaylen and the first time with my brother in law Sean, by the way…he jammed my finger playing tetherball on the playground when I was in 3rd and he was in 5th grade, so he owes me a half marathon or two.
We were Team Magnolia. It is amazing having my family run with me. I was feeling down about raising money for this race, because our friends and family have been donating to various events this past year and I felt like it was too much for me to ask them again. Then Sean emailed his friends and they started donating. We raised almost $8K and I can’t thank Sean, Kaylen and all your friends enough.
Running the race, was such a great experience. I wasn’t in a lot of pain, I kept the same pace throughout the race and I had a good time doing it. I ran the first 7 miles or so with Kristin Hileman who works with Girl Power 2 Cure.
I hadn’t really hung out with her, so this was like having brunch with a friend, but we’re running and eating weird race gels and beans. I enjoyed our time together. Its hard to explain how easy it is to hang out with other Rett parents that I barely know. But I do feel a strong bond with other Rett parents – that unspoken connection that just says ” I know what you’re going through”. We are all dealing with this horrible disease, fighting for a cure and trying to have a life along the way. It’s just nice.
I really am happy that I ran the half marathon. I’m so proud of Sean and Kaylen for doing it with me. But honestly, I’m in awe of my niece Kaylen and the amazing woman she is turning into. When Sean and I really couldn’t put into words how we were feeling after the race, Kaylen does it eloquently. Maggie has a great role model in her cousin. Of course, Maggie is a great role model for everyone, how not to give up and finish strong.
Also, thanks to my mom and AJ for making us our #magnoliashope superhero capes. Team Magnolia really is awesome.