I have mixed emotions when I travel away from Jenny, Maggie and Gray. On one hand, things are hard at home and it’s a struggle to stay on top of everything when both of us are home, making me feeling guilty to leave Jenny to handle everything herself . On the other hand, there are still important things we need to do.
We made a documentary about our life with Rett Syndrome with the goal of sharing our story on a larger platform than this blog and Facebook. Part of that strategy includes film festivals around the country and world. We had the opportunity to screen at the Vail Film Festival a few months back and today I’m in Minnesota to share the film with the Catalyst Content crowd.
When we made the movie, we hoped it would be uplifting, and on some level it is. But it’s also hard to watch and hard to talk about with people, especially strangers. We really open our lives up for people to see and I didn’t realize how vulnerable that would make me feel standing in front of people who have just been introduced to the hardest parts of our lives. I try to disassociate as the subject of the movie and present solely as the filmmaker, but that’s not really possible. At the Vail screenings, Jenny cried. Here in Duluth, I’ll be standing up there alone.
Awareness of the disease may not translate directly into major dollars for research, but it does make me feel like I’m doing something. I tell myself it’s an important thing to do – that I have to be here to tell people about my experience with Rett Syndrome – to answer questions. I have a particular set of skills that makes building awareness something I’m capable of doing, so I’m going to keep doing it.
As it turned out, Maggie, Gray and Jenny had to flee fires in LA. She wasn’t eating, and the air quality was awful, so a weekend with Grammy and Pops seemed like it’d be a good idea. As it turns out, her eating didn’t get better and she spent one of those weekend nights in the hospital with an IV, confirming our fears that a feeding tube is now something that we can no longer hold off.
While Jenny had to deal with a mountain of trouble for the kids, I was evangelizing Maggie’s story in Minnesota. Until there’s a cure, all four of us will be putting out fires every day and sharing Maggie’s story to whoever will listen.
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.
Before Rett Syndrome, before hospital visits and a scary diagnosis. We were just a tiny family dealing with ordinary issues. I thought I would do a flashback post to when Magnolia was one year old and we went to Aruba. Some of you have read this before, but I still find it one of our funniest and grossest vacations.
Happy New Year 2011! All I’m wishing for this year is good health for my family and friends. It really is amazing how much I take having good health for granted. Especially being healthy while traveling. AJ, Maggie and I went to Texas for a week, then to Aruba for a week during the Holidays. We had a great time visiting with family, but Maggie woke up with a stomach virus on New Year’s Day and that is where the craziness begins.
It is heart wrenching watching your one year old vomit non stop and not be able to explain to her what is happening. AJ and I spent all of the day on January 1st holding Maggie and cleaning up vomit. At one point during the day, Maggie threw up, then just looked at me and signed “All Done”. That’s right, she was officially over being sick. She didn’t like it and wanted it to stop. Besides the fact that I’m glad we have been teaching her baby sign language and in that moment she could actually tell me how she was feeling, my heart broke for her. After vomiting all day, it was a relief when we were able to get her to fall asleep for the night. Of course, I was too scared to let her be by herself, so I spent the night next to her crib sleeping with my eyes open (not really sleeping, but reading one of Chelsea Handler’s books). On January 2nd I got up with Maggie early in the morning, she was doing much better, YAY! Now if only I had Chelsea Handler’s book editor’s email, I found quite a few spelling errors in her book, which seemed unacceptable…unless lounge is actually spelled longue, in which case, my apologies to Ms. Handler.
Since Maggie was feeling better, I felt relieved that we were traveling back to Los Angeles. We’ve been gone for 2 weeks and AJ and I both are getting a little anxious to get back. We finish packing our bags, go to lunch, then pack it up and go to the airport. Maggie is doing well, she hasn’t thrown up and is extremely playful. We are ecstatic, because traveling with a toddler can be tough, but traveling with a sick toddler is a nightmare. Of course, I was focused on Maggie all day and wasn’t really paying attention to any other signs around me. Such as, after lunch AJ mentions to me that his stomach hurt a little bit. He seemed fine and was ready to go, so I just ignored it. Also, he’s an adult and can take care of himself. We get to the airport, go through two security checks, customs and get to the gate. Maggie begins to get really fussy, this could be another sign of what is about to happen. She had skipped her nap, so I assume she was just really tired. We board the plane, we get Maggie settled, she is fussy for the entire time we are on the tarmac. All I can think is, let’s go! Once the plane gets moving, she will fall asleep, hopefully. There is one problem (that I know of), since Maggie has been throwing up I can’t give her any milk. This means I can’t give her a bottle to soothe her during take off, slight problem, but I’ve got water in a bottle and some cheerios, so I figure I’m good to go. I look at AJ and he looks like crap. He tells me he is beginning to feel bad, I tell him just take care of yourself, get some rest and I’ll take care of Maggie. Again, ignoring the signs.
And so it begins…as we taxi from the gate, I am focused on Maggie. I happen to glance at AJ and he begins to puke…in his hands (not his finest moment). I grab a vomit bag and he vomits into the bag, fills the bag, literally to the top. I’m conflicted, I can’t help him, Maggie is crying and I need to focus on her. I tell him to go to the bathroom as soon as he can. He says he feels better, of course now I want to vomit because it was absolutely disgusting how much he just puked. We are not kissing for awhile…at least until he brushes his teeth and rinses his mouth out with alcohol. Maggie is still crying, so I cave in and give her a bottle with formula. She is relieved, drinks it then falls asleep.
For the next hour, I try to help AJ, but I’m starting to feel like crap. Maggie is asleep and all I can think is, please stay asleep for the next four hours. Until we get to the States. Then the unimaginable begins to happen. AJ goes to the bathroom to puke for maybe the 5th time during that first hour. I look at Maggie and something doesn’t look right. OMG, she is about to start puking while she is asleep. I pull her out of her car seat, she wakes up, looks at me and then I feel it. Maggie has diarrhea…explosive diarrhea, that has filled her diaper and is now pouring out of the back of her diaper and onto me. YOU HAVE GOT TO BE KIDDING ME! This can’t get any worse! I wave down a Flight Attendant. She helps me by carrying my stuff to the back, so I can change Maggie. She then says to me, “You have to change her in the bathroom, but there’s not a changing table, and we don’t have any water in the faucets”. She also says, “I don’t know what your family has, but we need to quarantine you to one bathroom, but you can’t stand in the back galley because I can’t have you contaminate any food.” So AJ is in one bathroom puking, and the flight attendant wants to not contaminate the other one, but also doesn’t want me in the back galley. At the same time, I can’t walk back through the plane, because I’M COVERED IN DIARRHEA! I guess she wanted me to take a step outside, I gladly would have put on a parachute and sailed down to a tropical island with a hospital, but I didn’t know it was an option or I would have packed my parachute.
Since Aj is still puking, I begin to awkwardly change Maggie in the other bathroom. This has completely upset the flight attendant, but I nicely explain to her, that this isn’t my ideal situation either, but this is happening. She then proceeds to tell everyone that comes to the back that both bathrooms have been contaminated and they probably want to use the bathrooms at the front of the plane. In the long run, this ends up to be a blessing.
After I balance a diarrhea covered Maggie on the bathroom toilet lid and clean her up using all my wipes and a water bottle. (Just call me Mom MacGyver) I leave the bathroom give her to AJ and he takes her back to our seats, I try to clean myself up as much as possible, then I head back to our seats as well. Of course, I had to take my dress off because it was covered in diarrhea. Thankfully, I was wearing a pair of leggings and a tank top underneath. Problem is, my tank top is a burnout tank top. You know, see through. So here I am in Target leggings, a see through tank top, a black bra and carrying a trash bag full of clothes that are covered in vomit and diarrhea. I’m sure the sight of me was disgusting but the smell must have been rancid. I casually stumble back to my seat.
At this point, I have hit my limit its been 2.5 hours of constant vomiting from AJ and Maggie’s diarrhea explosion was my final straw. I sit down next to AJ, inform him he needs to be okay, because I’m not. Right then, I begin vomiting. For the next two hours, I am lucky enough to have my own personal bathroom in the back of the plane. No one will go near the bathroom, myself or AJ. We look like the walking dead. There is no doubt if this illness is airborne, the entire plane got sick from it. I’m surprised they haven’t wrapped us in plastic and called the CDC.
The plane finally lands in Atlanta, I’ve run out of vomit bags and politely ask the guy next to me for his. At this point, all six people in the rows in front of us, jump to give us their bags, the three people in the row right next to us, scurry to find their bags and the two rows behind us also begin to find their vomit bags. Clearly, we have made an impression.
After the worst plane ride imaginable, it was with great relief that we landed in Atlanta. AJ and I just looked at each other and breathed a sigh of relief. Of course, the relief was for mere moments, because we had to get off the plane, change our tickets, and get to a hotel. Yes, these seem like simple tasks, but both AJ and I are weak (in the moment), sick (unbelievably so) and barely holding it together (understandably so).
While everyone else exits the plane, we game plan, mostly because we wouldn’t be able to move if we wanted to. How are we going to do this? We have a carseat, stroller, a push wagon (for Maggie to push around), two carry ons, a backpack, my purse and a baby! When we are at our best, this isn’t an easy task. We settled on a plan and jumped into action. Well, stumbled into action. I carried Maggie in the Ergo (basically a front holding baby carrier), my purse, and one bag. I’ve got the important cargo. AJ put on the backpack, attached the carseat to the carry on, and grabbed the stroller from the gate. In other words, he’s got all the rest of the cargo.
As I walk up the ramp and pass the gate area where our stroller is sitting, I notice the wagon isn’t with it. I’m typically thrifty, but right now all I could think was “Screw it! Just keep moving.” At the end of the ramp, I am about to throw up again, I sit in the seats closest to the gate, while everyone stares at me as if I’m carrying a virus that could wipe out Atlanta. Of course, as far as we know, this could be true.
AJ comes up the ramp and looks worse than I feel. That, to my mind, scares the heck out of me about how I look, cause I feel miserable. We are a sight! The flight crew tells us we have to change our tickets at another gate. So here we go, shuffling through the terminal. I kept having to tell myself not to vomit before suddenly being stricken with fear that I would pass out and fall on Maggie. I’m so weak, I’m actually seeing spots. Must. Sit. Now. I find a seat and plop down. I tell AJ to go on without me. He does. Jerk.
He makes it to the counter where he is like the 15th person in line. 15 people! I can’t make it through 15 people! And I’m sitting down. AJ’s never going to make it. Next time I look up, he’s holding himself up on the stantions – can’t be comfortable or stable. Please don’t fall over. I look up again. He’s got his head down on the counter. Progress.
Through this, I’m sitting down, debating breaking out one of the 10 vomit bags I’m carrying in my purse. Running to the bathroom with all of our stuff isn’t an option. If it’s gonna happen, it’s gonna happen here. I’ve put Maggie down to let her crawl around a little bit despite the fact I don’t have the energy to chase after her. As soon as I do, I hear gasps all around me. Not kidding, one lady screamed. I look at Maggie and the back of her jammies are bright red. What is happening!!!! Is she bleeding out of her back?!? I quickly pick her up and look in side her diaper. All I can think is, please…please, a cut, a scrape. Please don’t be bleeding from your bootie! I do the thing that mom’s do…I smell her clothes. Sugary. Sweet. Thank God. It’s Gatorade. She sat in Gatorade. I loudly announce to everyone around me, my child is fine, she sat in Gatorade. I, literally, hear several…”Thank Gods”. One lady sees my situation and tries to help me put Maggie in the stroller, but Maggie decides this is the time for a full blown meltdown. Thankfully, AJ walks over with good news – Delta set us up in a hotel and rebooked us the next day for no charge. He also has bad news – our bags were booked through to LA and since they didn’t get sick, they didn’t have to get off the plane in Atlanta. Lucky bags. So we have nothing to change into. Great AJ buys ugly Atlanta sweatshirts. I notice there is a perimeter around us, that no one seems to be entering. Of course there is, we look like hell, smell like vomit and diarrhea and our baby looks like she has blood coming out of her tiny little butt. I wouldn’t come near us either.
We head to baggage claim. I can’t get on a tram – more motion would not sit well – and the moving walkways are making me nauseous. Everything is making me nauseous, but those, in particular, were making me miserable. We walk, through “the world’s busiest airport” for what seems like FOREVER. Our terminal to ground transportation is the farthest distance one can be between two points at the Hartsfield Airport. Phew Feeling like death and exercising. Everyone’s favorite combination.
At baggage claim we ask someone with an Atlanta Airport badge where taxis are. He directs us to the shuttle. We ask someone else. Same response. AJ pleads with the man. “We’ve got a baby and we just need to get to the hotel. Please, where are the Taxis?” he says. “I can take you,” says the man. I think if I was in the right state of mind, I would have said no and kept looking for the taxis, but we were exhausted, sick and smelly. Not to mention it is 40 degrees outside and we are in diarhhea and vomit covered beachwear, so we take him up on the offer. This was before Uber and Lyft, so jumping into a stranger’s car, was less common. Now people will jump into a stranger’s car without hesitation. At this point, now this would typically be the part of the story where we all end up wrapped in plastic in someone’s basement, but it all worked out and we made it to our new home in Atlanta, called Holiday Inn Express.
We were relieved until we found out, the Holiday Inn Express, apparently doesn’t have cribs. This is not ideal when you’re talking about a sick, sleepless, mobile baby. We did what we could and I built a crib/pen for Maggie with the room furniture, complete with its own electrical socket. Not ideal at all. Thankfully she was too sick to explore the deathtraps.
AJ was somehow able to stand straight up without vomiting, so I sent him to WalMart to buy us some meds, clothes and pedialite.While he was out, I discovered a laundry room in the hotel and decide to wash all of our clothes. I don’t have anything to wear that isn’t covered in vomit or diarrhea except my scarf. So I make a lovely sheer scarf dress out of the scarf and walk to the laundry room. With no underwear to wear, so I was quite the site. Nobody saw me, but if they had, they would have thought I was a hooker. Since this was my only option, I was fine with my new hooker look, especially since I had to take Maggie with me. A hooker with a baby, also known as, an off-duty hooker. Once I get to the laundry room, I realize I am short 1 quarter, and my wallet (AJ) is out at Walmart. Maggie and I take the elevator back to our room, get her ready for bed, finally I get Maggie to sleep and collapse next to her on the floor. I’m not usually one to sleep on hotel floors, but my standards are a bit low at the moment. While she sleeps I lay there, trying not to vomit. Still wearing my lovely scarf dress and using a bathroom towel as a blanket. AJ returns from Walmart, leans over and says “At least it doesn’t really get worse than this.” (oh ,the foreshadowing)
The next morning, I have a fever and can’t keep my eyes open for the entire morning. AJ does laundry and Maggie has constant diarrhea every 15 minutes. We keep debating taking her to the hospital versus getting on the plane. AJ takes Maggie around for a walk and when they return she seems to be better. We probably should have gone to the hospital, but neither of us is in a fully functional state of mind.
We pack up, deciding to fly to LA. We just want to get home. All ready to go, AJ picks up Maggie and she pukes all over him and his newly clean clothes. At this point, he decides to wear the black pants he bought for me at Walmart. He picks them up and puts them on. The pants are a size 26W/28W. AJ thought that was the waist size. I am a size 6/8! So is he. He puts the pants on, folds and wraps the waist. I am crying laughing. He looks like a poor Arabian Knight. On a daily basis, AJ isn’t that adventurous with his fashion. Mostly preppy. We decide he has to wear his jeans that smell like vomit…again. We leave the pants in the hotel room.
At the airport we just sit and wait. Our heads are spinning, so much has happened in the last 36 hours. We board our plane and we both just want everything to be okay. I’m still sick and Maggie is sick. At least AJ is feeling better. There’s hope, we can see light at the end of the very long tunnel. As the plane takes off, Maggie falls asleep, I fall asleep. I woke up 3 hours into the flight, with one hour left. I look over and see Maggie is still asleep, AJ is asleep, so I cry. I cry because I’m thankful that she has slept through the entire flight. I cry because the last 36 hours have been a living nightmare. I cry because we are almost home, we did it. From here on out, things are smooth. We find our bags, Delta was holding them for us. A nice gentleman gives us his SUV cab because we had more stuff than him. We get home and Maggie wakes up and squeals with delight because she sees her room. The past 72 hours for her, have been hell. Remember, she was sick while we were in Aruba too. It is completely understandable that she wants to be home. Our dog Gilmore is ecstatic that we are home. He probably thinks he has been neglected while we were gone and probably thought he was going through hell. Gilmore has always been somewhat of a narcissist.
After all of this, taking a long trip intimidated me. Then when we thought we were ready to try again, Mags was diagnosed with Rett Syndrome. Then Epilepsy. So here we are. Seven years later and we decided to make a trip back to Aruba. Now with Magnolia having Rett Syndrome and Epilepsy, there is so much more medically to manage. BUT, this time our trip turned out calm, relaxing and adventurous in all the right ways. Some times you just have to go for it! Even if your last trip to Aruba turned into the the CDC meets the Walking Dead. What can I say, we love family adventures, we just prefer them to include a little less vomit, diarrhea and strange Caribbean viruses.
Lastly, I would like to apologize to the entire Delta flight flying from Aruba to Atlanta in January 2011. There is no doubt the majority of those people got sick. Although, I’d like to say its not entirely our fault. The fact that the plane didn’t have any running water, in order for people to wash their hands, that’s on Delta.
We love to travel. It has been immensely harder for us the past five years. Since flying became so hard,the past couple of years we have really tried to incorporate more family adventures that involved driving. We have had some really fun experiences from San Diego to Mammoth mountain and I will always love road trips. Since both sides of our families live in different states, there are times we have to travel by air. Especially during the holidays. There have been plenty of times that we have had to cancel trips. There are also plenty of trips we just didn’t even bother planning, because we knew it wasn’t possible.
Over the past few years, one of the biggest hurdles has been having to fly with two adults, out of necessity. I’ve flown with one or the other kid by myself, but it was just 1:1. Two kids that both need help, just didn’t seem doable. Gray will be 3 years old soon and he is now fully capable. Sure, he can get grumpy or tired. He’s 3. Of course he still needs an adult to accompany him, but he’s fine. Magnolia, still needs full attention. At any time she could have a meltdown, seizure, breathing issue, need help eating, drinking, etc. It’s much harder for her. Until this last flight, I couldn’t comprehend flying with both kids, it just didn’t seem doable, it wasn’t doable.
Last night, I barely slept, I was anxious, but a different anxious. For some reason, I knew everything would be fine. AJ had to leave for NYC for work, so he scheduled our flight before his. He wanted to help get us through security and to the gate. It worked. As we boarded the plane, I told myself. Whatever happens, happens. It’s going to be okay. As long as Magnolia’s health is fine, everything else is a piece of cake. As we took our seats, I handed out Magnolia’s Hope cards to the surrounding passengers. The cards give a little bit of information about Mags and Rett Syndrome. After I handed out the cards and passengers read them, everyone had this sense of kindness. Empathy if you will. I could feel it. Usually I feel people’s stress, their annoyance, not this time. The passenger behind us, immediately stood to put my carry on bag away. The passengers next to us, smiled and greeted both Mags and Gray, while I got our the rest of our stuff organized and situated. The passengers in front of us, thanked me for letting them know that she would be kicking the seat, told me not to worry about it. (Of course I did, I held her legs down quite a bit from kicking). At various times during the flight, flight attendants and passengers were willing to help. Ironically, we needed very little. At one point, Mags and I went to the restroom and Gray wanted to stay in his seat. The couple next to me, agreed to watch him. If he got upset, they promised to bring him to the restroom. He didn’t get upset, he just watched his show. When I got back he said, “Mags did you pee? I don’t have to yet.” We were fine. We did it. I filed solo with both kids. Did we have some hiccups, sure. Mags had some breathing issues and her body was a little out of sorts. The kids were both up at 5:30AM and neither napped during the flight. Everything was manageable. Then, Mags got a little emotional at the end of the flight. I couldn’t figure out why. I kept trying to figure it out. “Does your belly hurt?” “Do you need to go to the bathroom?” “Are you hungry?””Tired?” None of it. She cried for a few minutes, then suddenly stopped. Once we got home, as we walked to our front door, Gray asked where daddy was. Then he asked where Grammy and Pops were. Right then I knew, Magnolia was just missing her family, just like every other 8 year old girl would.
I am so glad that we were able to go on so many fun adventures over the holidays. We traveled to Aruba, then Texas, then back to California. We are happy, exhausted, and content. Traveling to amazing places and adventures is great, being with family is even better.
Also, thank you to the passengers, flight attendants, pilots, airport employees, Uber drivers, and everyone else that we came in contact with that chose to be kind. When you don’t understand a situation and you choose to be kind, you may not know, but you make the world a better place for everyone, especially Magnolia.
AJ travel solo with Mags to Atlanta to see a Rett Specialist. This is how our 3 weeks away began.
I travel solo with both kids to fly back home while AJ travels for work. This is how our 3 weeks away ended.
Gray wants to be like his big sister, he wears a headset and rides in her chair. He does it because its fun, She does it because its a necessity. It’s the little things that make a big difference in travel and in life.
We are definitely Team Magnolia when we travel.
I have a skater girl, surfer girl, extreme sport loving girl. I could not love her more. She may not have all of the abilities, but she has the heart. Last year, when she asked for a skateboard on her Tobii eyegaze tech computer. I thought she had made a mistake. Hello? Presume competence mom! She meant it. So immediately I try to find the exact skateboard for her. Then try to figure out how we can adapt it to her. She was adamant that she wanted a skateboard not a scooter. Which really, either way, there was going to be a lot of adapting. As per usual, Magnolia proved me wrong. No adapting necessary, just some reassurance and faith. Of course, dad is always up to the challenge. At the start of the summer, he told Mags, he would teach her. So AJ and Magnolia have been going to the park. If you see them, you will find the most inspiring little girl geared up and trying to skate.
The other thing Mags told us she wanted to do for the summer was go to surf camp. We live in Los Angeles, you would think this would be easy. I searched and searched and found nothing that would work for her. I just didn’t bring it up again. Then I kept seeing social media posts of friends with kids Magnolia’s age, all in surf camps. Dammit! Its not fair. Its all she wanted. So we decided we would create a surf camp for her. We planned a family vacation to La Jolla Shores (San Diego) booked her private surf lessons with Surf Divas for all the days we were there. Mags was thrilled. Surf Divas was amazing. This was her third year to surf with them and we are always happy. I think we just found a family tradition. Surf camp! Bonus, we also met up with another Rett family from Texas that happened to be vacationing in La Jolla. They signed their daughter Catherine up to surf with Magnolia. It truly was a memorable experience.
Look, as far as I’m concerned, our motto is, “Live Big”. She will be able to do anything she wants to do. I’m starting to feel, we have set ourselves up for some extreme situations, but I’m all in. Just let me get a little bit of research in, but then she will reach for the stars.
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…
We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. I went and checked on the pool before lunch and it was 70 degrees, aka too cold to swim. So we had to cancel. While Mags and I were eating lunch, she kept navigating on her Tobii to Farm on her computer. So I modeled “What about the Farm? She replied “Farm, Farm, Farm, want.” So I modeled. “I want to go to Farm.” I was so happy she was trying to use her computer and not for the quick easy answers, which she has been doing a little more, but for something she actually wanted to do. So we looked up the closest farm and off we went. It was small but both kids were happy. We were there an hour, fed the sheep and goats, and bought a fresh watermelon and corn. Success! Here’s us getting Mags to feed the goats even though she didn’t want to get too close. Pretty much nailed the family selfie too.
Sunday we took a spur of the moment trip to Ojai. We visited some friends there. Ojai is such a peaceful and fun small town to visit, we should go more often. Or at least I should. Kidding, my family can join me. We ate, we swam, we walked around, we ate, then drove back to LA. Fun day! If you remember, the fires this past year surrounded Ojai, and you can see there is regrowth happening already. Last year the hills behind us were all on fire, but this year, to quote a Jurassic World slogan, life finds a way.
Monday was Memorial Day. We had planned to meet our friends at the beach. My weather app said it was going to be 68 degrees. I was tentative about a chilly beach but we packed it up and met them for the afternoon. It was warm where we sat, but closer to the water was chilly. Gray didn’t care, he chased the waves and wanted to play with daddy. Every time Mags and I walked to the water, she would turn around and head back to our where are stuff was. It was too chilly for her. She is so skinny, she gets cold easily. I have to remember warmer beach clothes for her. She would rather sit under the tent and eat watermelon. So that’s what we did. We had girl time. (outfits not necessarily worn in this order, lol)
I didn’t have Mag’s arm braces on her while we were at the beach and she seems so tight. Do you put braces on your Rett kids at the beach? I guess they are washable. I need to think about this, we plan on going to the beach a lot this summer. Maybe one brace is a beach brace, then leave another one as a dry brace? I’m up for suggestions.
#magnoliashope #rettsyndrome #parentsaretired
We are committed to giving Maggie typical experiences and a life full of incredible memories. She deserves it and it’s one thing that keeps our life feeling typical as well.
We have been planning to go on a ski trip for awhile. We are skiers, or at least, we were in our former lives. Now, we are people who like to ski once every year or two. With kids it’s even harder. With Rett Syndrome we thought it’d be even more impossible. But, about a year ago, the Ramirez family, Mike and Shoshanna, reached out to us. Their daughter, Marlowe, was diagnosed with Rett Syndrome and they came across Maggie’s videos. Mike happens to be a coach on the US Snowboarding team so when his schedule opened up and we found out his family would be in Mammoth, we all decided we would meet up there.
Mike texted AJ while we were on our way to Mammoth. Marlowe was in the hospital with pneumonia. She had been there all week. They were supposed to drive on Friday as well, but life with Rett can change your plans in an instant. As it turns out, she was feeling better and was able to make the trip the next day.
On our way to meet them, I tried to record a video, but I kept crying. So AJ and Steph made fun of me. I couldn’t help it, I was so excited to meet the Ramirez family, and to see Maggie ski. I love skiing and to be able to see Maggie do it, was just really special.
The best part. Maggie loved skiing! She was screaming with joy while going down the mountain. Her smile, laugh and screams are infectious. I’m not going to lie. I cried on our last run down the mountain. It was really a beautiful weekend. Our lows may be really low, but our highs are even higher. Maggie and Marlowe brought us together for a memorable weekend. It was anything but a typical experience, but only because it was so incredible.
Whenever we want to do something big and fun that typical kids get to do, it takes careful planning. We spend most of the time wondering if we’re crazy for making her do some of these things, and the rest of the time worrying that she’ll hate it. But we’re dedicated to making sure her childhood is no different than anyone else’s childhood. So, if it creates a little more stress for us, so be it.
One of her favorite radio stations is the Kidz Bop station. It’s current songs covered by kids. It’s not awful, it allows us to stay up to date with current music, and Maggie loves it. They started announcing upcoming concerts a few months ago and we knew we had to take her. But, Maggie doesn’t love crowds. Or loud music. She wouldn’t stay in her seat and she might melt down requiring us to leave, wasting whatever money tickets would be. The concert is late, past her bedtime, and if she’s too tired, too hot or too frustrated, she may experience some seizure activity. Plus the venue is outdoors in the sun. These are some of our worries for something as simple as a two hour show intended for kids.
We take it one step at a time. Before mentioning anything about it to Maggie, we research – the venue, the space, wondering what our options. As it turns out tickets are available for handicapped kids at a discounted rate. Though Maggie isn’t in a wheelchair, her push chair acts as one on intense outings, so we can make use of wheelchair seating. Taking a look at the map of the venue, there’s seats out of the way, back in the mezzanine, where volume is less likely to be a concern. Double check.
We started using ear plugs at crowded events, and that’s really helped mitigate her frustration, but even so, 1000 screaming children is at a decibel level that can pierce through almost anything and there’s only one real cure for Maggie in those situations – french fries. Looking at the menu from the venue, that’s on the list! Triple check. Maybe we can go to this after all!
We check the weather app – a perfect 70 degrees at the time of the show. OK fine! Let’s tell Maggie. For weeks we talk to her about it, explain to her what she should expect and every day it’s palpable how she’s getting more and more excited. We push her bedtime a little here and there so staying up late isn’t an issue. And concert day, what would you know, she could not stop screaming in joy.
It seems to us the key to a successful outing with a special needs kid – preparation. You have to prepare the kid for what’s about to happen, prepare with all the gear and adaptive equipment you might need, and prepare yourself that the kid might have the time of their life!