We have been told numerous times, “We are so close to a cure.We are so close to treatment for Rett.” We have had so much hope for a cure, but even a treatment, something to abate one of her symptoms would be transformative for her. Before Covid, there were multiple trials going on and more about to start. The excitement about the advancement was real and palpable. Then the world stopped. Everything halted. While the world coped with the Coronavirus, we had the added bonus of coping with the complexity and halting of trials for Rett Syndrome.
While parents tried to cope with homeschooling their kids and what risks they might be willing to take, We coped with homeschooling, home therapy and worries about what Covid might do to immune compromised kiddo like Maggie. We faired pretty well, but then a few bad days would happen and our minds would wander into the “what if”. What if trials don’t start back up? When they do, what if it’s too late for Magnolia?
My mind can spiral pretty easily when it comes to hoping for a treatment or cure and what it would look like for her. The reality is, I want it all but I would take just one thing, one symptom to be relieved. What would it be? I think at first thought most people would think I would ask for Maggie’s seizures to stop, for awhile this may have been true. With seizures though, they can be managed, its really about trial and error. A very scary trial and error but after 3 years of hospital stays, ER visits and immense stress, hers are finally in control. Next you would think I would want to relieve her breathing issues, for the past 4 years they have been a constant source of distress for her. Most days alternating between hyperventilating and breath holding until she turned blue and on some of her scariest days her lips would turn black while she seized and stopped breathing. Depending on the day, I would have asked for those symptoms of Rett to be relieved.
As for Rett Syndrome the list goes on with symptoms that have severely impacted her life and well being. Over the years, I have always come back to one symptom. I would ask for hand function. Full hand function and capability. I know that seems odd, especially since Maggie is nonverbal. Why wouldn’t I ask for speech? Honestly, its a close second, but I’ve thought about this immensely. If I could give her one thing, it would definitely be hand function . Let me explain…
With hand function, she would be able to communicate. We would all be able to use sign language, or even an AAC touch device.
With hand function, she could play, truly play with toys, draw pictures, color, all of it.
With hand function, she would be able to fully participate in school., raise her hand.
With hand function, she would be able to open doors.
With hand function , she could truly choose her clothes and dress herself or undress herself.
With hand function, she would truly have choice and more independence.
With hand function, she could protect herself.
With hand function, she could have more privacy.
With hand function, she would have her dignity.
With hand function, she wouldn’t need to be watched, protected, or helped 24/7.
Thankfully trials are starting back up. I still have hope for a cure. Although, I’ll be happy with any relief from Rett Syndrome but hands down, I hope for hand function. No pun intended.
Everyday I am reminded my daughter is beautiful just as she is. Though I’d be lying if I I didn’t say, I long for the day that she holds my hand instead of me holding hers.
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.
If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of grief. Now most days I wouldn’t say there is grief, just a wave of sadness, and also not everyday. Most days, I’m fine. All things considered, I think that’s pretty good. I didn’t think I’d get to this place.
The reality is, emotionally we live moment to moment. When the good outweighs the bad, we’ve had a great day. It’s when the bad moments start to outweigh the good ones, that’s when we start to wave the white flag.
I’ve been thinking about this a lot. I am tired of the tease of calm waters. The past couple of years have no doubt been hard. Waves of symptoms affecting Magnolia. If it’s not seizures, it’s breathing issues, or GI issues, or balance issues, or unexplained pain, or her body weakening and tightening, her hands have mostly stopped functioning with constant wringing, the list goes on. Rett is relentless, but then we get moments and we breathe lighter. A little bit of weight lifts off our shoulders. Then those moments turn to weeks. We are in awe, we enjoy the reprieve, we hope it stays. We celebrate medicines working. We adventure. Then it stops. We watch daily as symptoms slowly return. The waves start crashing bigger again.
I try not to compare Magnolia to others afflicted with Rett Syndrome. Sometimes its curiosity, sometimes its jealousy, sometimes it’s survival. What is that mom doing that I’m not? I’ll reach out for advice. Usually when I reach out, I find out, they are drowning too or they are in their own dingy rowing like crazy trying to stay ahead of the next crashing wave. I’ve realized, every family is in their own small boat, making sure they are wearing life jackets, because the waves of Rett are relentless. Nobody has found land, not yet anyway. Until we find land, we will keep trying to live our lives as best as we can in our dinghies. #dinghylife #rettlife
On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger.
The last five years have been the most difficult in my life. I’ve watched my daughter lose skills, regress, have seizures, need CPR and be hospitalized. That has been her life, at least that is what Rett has done to her.
At the same time, she has fought for her lost skills. She has pushed herself mentally and also physically. She has overcome relentless side effects of many medications. She has screamed in agony, squealed triumphantly and shown strength, immeasurably. She wakes up every morning with a smile, in the hopes that today will be better.
She has had five more birthdays.
She endures. She fights. She inspires. She is beyond brave.
There are days, weeks, and months that are unrelenting. She gets knocked down, she gets up. She is fighting Rett Syndrome like she is Ronda Rousey. I’m just her trainer on the sidelines. I wish I could just tag her out and take her place, but I can’t. All I can do is help her, give her strength, give her love and be her voice.
She is my warrior girl.
There are 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
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.
The stars at night are big and bright….(insert 3 claps) deep in the heart of Texas.
Since Magnolia was 2 years old, we haven’t gone to Texas in the summer. First it was too hard to travel because of sensory overload, then her body couldn’t regulate heat, then we had Gray and then she started having seizures and it was hard to travel again.
All of these things are still true, but I really wanted to go to San Antonio for a bit this summer. I have so many great memories of my childhood and I wanted Mags and Gray to have some of those experiences. Plus, AJ had to work back in LA, and Shelly was going to see her family, so I was going to be alone. Texas here we come. We had to fly into Austin because there weren’t any direct flights available into San Antonio, so my mom drove up from SA to pick us up from the airport. From there we said goodbye to Shelly, she had never been to Austin, so she was off on her own adventure and we were off to ours.
Once we got to San Antonio it was so hot. Seriously, so hot. Which was unfortunate because we chose to travel in June so the weather wouldn’t be unbearable. Well apparently, this particular June in Texas was abnormally hot. At first, Maggie couldn’t walk outside without melting. Literally, she would just melt into the arms of whomever was closest, she didn’t want to walk. She could, but she didn’t want to. Thankfully, we traveled with her stroller – a Special Tomato that she loves – and we used it quite a bit. The key to Texas heat is get out early when the heat isn’t unbearable, and hurry yourself to a pool, splash pad, or anything water related.
We spent a lot of our days swimming at my sister’s house. We could have done this every day. We swam, ate hotdogs and watched movies. Maggie even got in a little pool volleyball.
There’s a new development in San Antonio on the grounds of a former brewery, called the Pearl. Every time we go to San Antonio, there’s something new here. Usually it’s restaurants with the Texas version of Foodie Treats ™ like charred brussel sprouts with bacon, or mac and cheese and bacon, or hamburgers with a bacon aioli, but this time they had fast casual restaurants where I got an actual quinoa bowl! In Texas! And they had this great splash pad that kids just ran through all day.
We also got a chance to head over to Morgan’s Wonderland which is one of the only all access, all abilities amusement parks in the world. This year they opened up Inspiration Island, the only all-access, all abilities water park in the world. It was an incredible expereince. It is set up as a bunch of splash pads with different themes. We hopped around the park playing at each splash pad. Getting to see Maggie run through the water, was such a treat. Trying to pull Gray, out of the water park was not such a treat. It really is an amazing and inclusive water park. Instead of stares and wonder, its families with kids with varying degrees of disabilities along with able kids, all just having a great time.
We also got to go down to The Gulf Coast. We used to come here as kids every summer and I have such incredible memories of this place. The first thing I noticed, considering we were staying in the same condo we did
30 20 years ago, was that this place hadn’t changed AT ALL. The weather was hot, the water was warm and the beach was filled with sea life. We watched the tiny clams bury themselves after each wave. We got to touch live shrimp. We watched two teenage boys catch fish with a net, then help release the fish into the waves. It was fun.
Then we went to the Texas State Aquarium. What a fun aquarium. This was probably our hardest day. Mags had 5 seizures and was crying for most of the day, plus we weren’t actually in the water, just looking at it. My sister and nieces played with Gray while I tended to her. I had to call Magnolia’s Neuro and get a RX refill for her emergency meds. Then my mom and I ended up having to find a pharmacy that could refill the RX that day. There was nothing really life threatening, it was just frustrating for her and, not being able to really make it go away, it was frustrating for me too.
One thing we did learn on this trip is that Lindsey and Mags are frenemies. They are very competitive when it comes to board games, and Lindsey did not let Maggie off easy, knocking her out of game after game. Maggie would get up from her seat, walk to Lindsay and stand right in her face – fronting. But when it comes to life, they are besties. Kaylen and Tyler both drove in town to see Mags and she was so happy to see them too. Not sure why I don’t have a pic of Sadie and Kelsey, next time.
Our lives can’t completely revolve around Mags, we do have another kid and we try to incorporate things for him too. So we went to Zoorassic Park at the San Antonio Zoo. For a short time, apparently, they have brought in dinosaurs and now none of the kids pay attention to the real animals, as they obsess over the gigantic animatronics. Honestly, the dinosaurs were amazing. Gray is definitely in his dinosaur phase, which means we are all in a dinosaur phase and loving it. Hard to tell if Maggie is out of whatever dinosaur phase she may have been in, but she does like to see Gray get excited, so, she, too, had a smile on her face.
Right next to the zoo there is a Kiddie Park with tiny rides for little kids. They seem super easy, but, Maggie and I definitely got nauseous spinning on the last ride. I think she’s more of a roller coaster girl. I know she makes us feel like we’re on a roller coaster all the time.
We had so much planned for our time San Antonio. Morgan’s Wonderland, Kiddie Park, SA Zoo, swimming, grilling and then off to the Gulf Coast. We were able to spend so much time with my sister, brother in law, their four girls ages 14, 16, 20 and 22 and our parents. They are extremely helpful. And because they were all so helpful, we were able to go on all these adventures, making brand new memories for me and allowing my kids to experience some of those great memories I had from when I was their age.
It really was a Texas sized adventure.
A recipe for a crazy but fun summer vacation.
One crazy independent toddler
One amazing and strong kid with Rett,
One busy, multitasking and exhausted dad
One overwhelmed but happy mom
Knead all ingredients together. Add in a dollop of seizures, a dash of minor accidents to taste. Layer in flights to two different states to visit two different families, and you’ve got yourself a Tesler family summer vacation.
Add sea salt as needed.
Two weeks of travel and I am tired. Let me start by saying, coordinating all of our schedules on both sides of our family and our schedules isn’t an easy task. It took weeks/months to figure out the dates and details and the craziest part is we almost didn’t get to go.
Here is what happened. The week before we were going to be leaving for NY to visit AJ’s family. Mags started having more seizures. It was really inexplicable day to day. Then the day before we were to leave, Mags had a surplus of seizures – five in a day. The neurologist suggested putting her on Valium as a rescue medication, but our local pharmacies couldn’t get us the prescription in time since we were leaving the very next day. I had to cancel the rest of my day and head over to Children’s Hospital Los Angeles, because that was the only place I could get the medicine if we were going to make our flight. Then when AJ got home from work we had to discuss “Should we go?”. If we thought her life was at risk we would never get on the plane. We have this discussion more than I would like to admit. But, ultimately, we decided that sitting in a seat on a plane, buckled in, with easy access to rescue medication was no more dangerous than her being anywhere else, so kept moving forward to leave in the morning. We had the new meds, the emergency meds and her regular seizure medication. On the way to the airport, she had a seizure that was longer than they had been. Once we knew she was okay, we discussed. “What should we do?” again. We both knew if she had a seizure in flight, we were prepared. So we got on the plane to NY. As stressful as it was deciding to go, I am so happy that we did.
We swam, we ate, we played on the beach, we ate, we played with cousins, we ate and we were loved by our family. At least Magnolia was loved by the family, the rest of us are quite obnoxious and no one wants to claim us. The medicine had made Maggie pretty emotional. And even worse was her coming off the medicine. She cried the first day or two and we couldn’t figure out what it was. By the time we had, the medicine was out of her system and she was back to her typical self, bouncing around the beach, splashing her brother and mom . and delighting her grandparents.
Part one of summer vacation in Atlantic Beach,NY was a success. It’s a calm, relaxing place and we love being there with family. Traveling is tough but its almost always worth it. Next up Part 2 Summer vacation the Texas family. Here we go…
Life can change at a moments notice. We try to take each day as it comes and make the most of it. There is no other way to put it, some days are just wonky. Sunday was wonky.
Both of our kids are getting over colds. We decided to take it easy this weekend, because we are traveling soon and we really wanted them to get better. Sunday had different plans.
The day started off strange and just got stranger and harder for Magnolia as it went on. The first incident happened right after breakfast. I was walking to the kitchen, Magnolia was walking right behind me, all of a sudden I heard a thud. I turned around and she was on the floor. She had fallen and hit her head. She was also in a very strange position. Usually if she falls, she instinctually puts her hands out to protect herself or stop herself from falling. We’ve actually had to work on this a lot, but she does it. But there she was, on her knees, head forward with her arms splayed out and twisted. It really caught me off guard, we both ran to pick her up. Iced her head, then she seemed fine, tired but fine. She ended up taking a nap soon after with AJ and I took Gray to soccer.
A few hours later, she seemed fine. I asked if she wanted to go for a bike ride, she did. We thought it would be fun for her to ride in the bike trailer and for Gray to scoot along with AJ and Mags. Again, everything started off great. Mags was so happy to ride. AJ had the hardest part of towing the bike trailer uphill, but it was fun. Until it wasn’t. About 15 minutes into the bike ride. I was walking along side Gray, while AJ rode up and down the street with Mags. A car came, so we stopped and pulled over to the side, trying to teach Gray to be aware of cars etc. I was standing with Gray as the car passed us. AJ was maybe 8-10 feet behind us. All of a sudden, I saw Mags lips turn dark blue, almost black, then she slumped over. It was a seizure. I yelled to AJ and he rode the bike up to me, so I could help her. After a moment with her I could see the seizure wasn’t stopping. So AJ started counting so we could know how long it was taking. Thirty seconds went by, the color returned to her lips and her seizure stopped. That was it. We decided to go home. AJ rode back with Mags, while I walked back with Gray.
The rest of the day, Magnolia’s breathing was really erratic and she was very emotional. It was a wonky day.
Later, after the kids were asleep. AJ and I talked about her seizure and how fast it happened. We discussed what we would have done if her seizure didn’t stop. I think we probably have a little PTSD from our last year of seizures, especially the three months where her seizures were out of control and there was a constant feeling of life or death. It’s unsettling.
We discussed how he would have had to ride back to the house with her seizing, how he would have had to get her out of the trailer, then get inside and get the emergency seizure meds, by himself, while I ran back carrying our son and his scooter, hopefully getting there in time to help if either of them needed it. If you are thinking, why are you discussing this? It’s because we have to. This past year, with every big seizure, after Magnolia was okay, we learned, we discussed and we problem solved for future seizures. Because we knew that moments matter.
The funny/not so funny thing is, we always have Mag’s emergency seizure medication with us. It’s in her backpack that we take everywhere. We don’t go anywhere without it. This was different, we were just biking through the neighborhood for a few minutes. What are the odds? She hasn’t had a big seizure in months.
We also realized, Mag’s fall earlier in the day, was probably a seizure. How odd her body was positioned, it had to have been a seizure. This made both of us really sad, because one of our biggest worries and concerns when Mags started having seizures was, will she just fall and hurt herself? The answer is yes, it can happen and it sucks. We live our lives moment to moment but also on high alert.
Here is us 15 minutes before her seizure, having a great time. Enjoying this moment.
If your doctor ever prescribes you Flagyl, know that you are about to imbibe a nasty liquid. Everyday for the past two weeks we had to basically hold a pep rally in order for her to take her belly medication. “Yay Maggie, Go Maggie, You can do it! Give me an M!” There were plenty of incentives, candy, gingerlale and wine (kidding I offered her a pina colada, I know how to parent) for her to take this medicine. Everyday twice a day it was a struggle. We got to the point that she would just cry and clench her teeth and push our hands away. But we got through it and guess what. Her belly is a bit better. After 9 months of having a bad belly! I’ll take this as a win! Give me a W! Give me an I! Give me an N! Go team Magnolia!
We still need to get bloodwork done but both her GI specialist and Epilepsy Neurologist specialist are happy with the results. So her neurologist also lessened her seizure medication again. Cross your fingers! We need to get rid of this brain fog symptom.
Never a dull day around here, now we focus on getting her to use her computer again. She is trying, but yesterday she was having a hard time navigating. I asked her if she remembered where the word she was looking for was. She didn’t remember. Is this a symptom of her seizure medication or does she not remember because she wasn’t using her computer, so she forgot. I’m not sure, but we will be modeling and putting a huge focus of our summer break on Mags communication. Let’s hope she gains it back, life is just better when she can communicate. Communication gives her confidence. Confidence can go a long way. Confidence makes for a happy kid, which makes for a happy mommy.
And fun instagram filters make for a happy kid.