Everyday I try to focus on the positive. I thought I would share some of my positivity with you. Here’s 10 moments during this pandemic that have made me realize, life isn’t so bad.
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Top 10 Positive moments
“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”– William Arthur Ward
We’re excited for a time when we can all get through this and we can get back to normal. For us, however, and for my family, we aren’t convinced that time will ever come. You see, my daughter has Rett Syndrome – it’s a rare neurological disease that among other things severely impacts her breathing. She was diagnosed more than six years ago and every year since has been learning about how to adapt. Now, in 2020, in addition to it all, there’s a pandemic we have to learn to adapt to as well.
Everything we know about Covid tells us if Maggie gets it, she could die, or at the least, struggle immensely. So normal to us is going to be very different from most people’s normal. We have to do everything in our power to prevent her from contracting the disease which is why normal to us may never actually be normal again, in part because we live in Los Angeles, a densely populated major city with cases of Covid yet to be under control.
We have seen first hand the aisles of grocery stores emptying of essential goods and the stress of that experience was mentally straining. Even more taxing has been the constant calculation of Magnolia’s seizure, breathing and anxiety medications. We have had to scurry around town finding places that had them in stock and had to consistently make sure we had enough and backup, in case, for whatever reason, production became complicated. Back up of her medications, however was difficult, in some cases to find and in others because the pharmacist can only make a 30 day supply at any given time. It’s hard to have back up of a medication that expires every 30 days.
As it has been for all families with small kids, days have been long. Magnolia gets up around 5:30 AM, she goes to bed around 7:30PM. Gray wakes up around 6:30/7 am, and goes to bed around 8:30/9 pm. Since both of them need full attention in order to attend and participate in school, each of us would have to take on the responsibility of teaching. In most two parent households, one parent could focus on schooling while the other could manage their work from home schedule, or if the kids are old enough, they can attend to the Zooms themselves. For us, we had to divide and conquer to be successful.
Now that school is out, our focus has shifted to what happens next. Covid 19 has thrown us through a loop. The pandemic has drained both of us at times, emotionally, physically and mentally. There are so many extra things to think about when you have a kid with complex issues, some of them being issues that could put her life in danger if she caught Covid 19.
We haven’t been near other people in almost 100 days. All of our food gets delivered to us, and washed before it comes into the house. AJ has become our pool guy, our gardener, our daughter’s teacher, and our primary bread winner. I am a preschool teacher, physical therapist, occupational therapist, speech therapist (we rotate being Maggie’s therapists), dog trainer, short order cook and housekeeper. We have to take on those responsibilities because we cannot risk any of those people catching the virus and bringing it into our cone of protection – the perimeter of our yard.
This past school year was the first year Magnolia was truly healthy enough to go back to school in a classroom. This was such a big decision. Last year, we felt it could be happening so we looked at various schools, school districts and possible moves, so she would be in the right place for her. It’s difficult to figure out and advocate for her, she is complex. She can’t use her hands, which limits her abilities, tremendously. She needs to have a full time aide, for caregiving, safety, communication and assistance with education. Not an easy task. She doesn’t use her Tobii eyegaze computer all of the time or with 100% accuracy, so she may seem to some unintelligent, which is far from the truth. She is smart and she needs an education system that understands her. We found that at Temple Beth Hillel. The TBH community welcomed her and us with open arms. Mags started school in October 2019 and she loved it. We decided we would have her go through their program, through 6th grade. For the first time in 7 years, she was in the right place, things were comfortable, she was thriving.
Grayden is in preschool at TBH. He needs extra attention at times, when life is harder at home with Mags. The teachers, staff and parents in his classroom were willingly stepping in to give him support. Which in turn, was support for us all. Not having him in his preschool program has been difficult since it was a respite for him, from Rett Syndrome. He was thriving.
AJ is finishing up his 4th movie which is also his directorial debut. After years of hard work, life was falling into place. He was thriving.
After 9 years focused mainly on kids, I was finally getting a chance to get back to my passion of writing and with both kids at school during the day, I was accomplishing more than I ever had. It felt like we were all thriving.
Then Covid happened. And now, questions about what’s next abound. Will we ever be comfortable letting Maggie go back to school? If the people in her class aren’t 100% safe, and I don’t expect people in more typical situations to be as diligent we need to be, how can we send Maggie to a class that has some risk? For that matter, can we send our four year old son back to school? Preschool kids are not known for their sanitation so it’s going to be hard for us to fully trust the herd on keeping him safe and by extension, our daughter safe. Not everyone is in this same situation, and that includes other families with kids with Rett. The truth is because of Maggie’s particular set of Rett symptoms, we’ve taken it upon ourselves to be extra diligent.
As a result, they are both home from school and most likely being homeschooled for the next year. The reward of sending Gray to school, doesn’t outweigh the risk of putting Maggies’ life in danger. Magnolia might not be able to go back to school in a classroom for a couple of years. Her immune system just isn’t as strong as others. We’ve dealt with the consequences of her getting sick, unstoppable seizures and hospitalizations. The measures they implement to keep kids safe will be based on educated guesses, but Maggie can’t be a guinea pig. She is in a good place now, we want to keep her there. Gray might not be able to go to school next year because we can’t risk him bringing home infections to Mags. AJ might not be able to work on a set for awhile since most Film/TV sets would require too many people for it to be safe, or risk getting sick. That will greatly diminish his work prospects. In the past, he’s done plenty of consulting for startup video companies and digital strategy work, but he will have to rebuild, again. My writing, well, it just doesn’t support us.
We have short term safety concerns that are very real, but how will our short term decisions affect the long term development of our kids or the trajectory of our own lives? Does it really matter if our 4th grader takes a gap year? We certainly don’t think there’s much harm in our son missing a year of pre school, especially if we fill it up with experiences he’ll remember for a lifetime. If AJ has to resort to remote working, or find a new career that doesn’t require 50 people to be in a room together in order to make the work happen, how much of a financial hit will we take?
And, what if there is no treatment or vaccine for two years? We are all too familiar with the pace that science actually goes. The stops, the starts. The promises and the failures. Yes, there are thousands of more scientists focused on this than there are on my daughter’s little rare disease, but there are no guarantees that treatments or vaccines will come soon. In 2007 they were able to prove Rett Syndrome was reversible in a laboratory. Since then the science community has been aggressively trying to figure out how they could translate that research into humans. It’s been 13 years.
While things may return to some semblance of what they were as people push aside the risks that won’t directly impact them, that can’t be our world. Our world is just -going to have to get smaller. We don’t know what tomorrow will bring or what normal looks like any more, but whatever normal is, it’s going to be different for us. That’s ok, though – our family has had to learn about being different once before.
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.
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.
Maggie is a full time job. Technically she’s a full time job for 3 people. And even then, it’s a lot. This weekend, Jenny took Grayden out of town for his spring break. I can only assume they’ve been busy doing keg stands and hitting up foam parties while I’ve been home alone with Maggie. Sometimes those weekends can be very draining. Especially recently, her mood has been sour and she’d been alternating between crying and hyperventilating, coupled with seizures and a complete refusal to eat. It’s been exhausting. She’s been reticent to use her computer, unwilling to do any school work, too tired to really commit to her therapies. We’ve been beaten by Rett for a few months now and waiting for the light at the end of the tunnel has been trying. Jenny told me they would stay back and I considered taking her up on the offer, but, at the same time, it’s important to remember that Grayden needs to get away from all the stress of Rett Syndrome every now and again as well. And, since I had just had a refreshing weekend away last weekend, I was ready for what I assumed would be a challenge.
Maggie and I had seen a GI specialist earlier in the week and she prescribed a short term treatment plan and suggested taking it easy over the weekend. So, instead of filling our dance card up with friends and activities, we stayed in, watched movies, baked croissants, but mostly, I just listened to her. We get wound up in our obligations, and often fall back on the idea that she can’t control her body, so we need to direct her at all times. But, with no where to go and no one to see, this weekend was different. There was no rushing out the door or hurrying to get orthotics on her feet. Instead, I followed her lead for a change. I assumed her actions were deliberate, instead of a result of a neurological malfunction. It seems like a no-brainer, but it’s a tough thing to remember. She wanders and spins and skips all day long, so I’m not always fully convinced she’s intending to do the thing she’s doing.
The first night we ate dinner together. She was having mashed potatoes and turkey. I was having Matzo Ball Soup. Well, I was having Matzo Ball soup. She was refusing to eat, again. I’d offer mashed potatoes, avocado, mac and cheese, anything that any kid would enjoy. But she refused. And I thought, “I guess this is another night where she doesn’t eat dinner.”
Then, “Tap tap,” Maggie tapped my soup with her hand, signifying that was something she wanted. So I gave her a bite of my soup. And another and another, until she ate it all up. It was probably the first full meal she had had in weeks. She smiled at me, relieved that I waited for her, relieved that I listened to her. When she finished, I asked if she was done. She turned to me to signify a yes and scooted down off her chair. She walked to the couch and sat down. “Are you saying you want to watch a movie?” I asked her. She giggled. I said, “you should take a bath first and then we’ll watch,” and I proceeded to lift her, as I do every night. But she went limp. She was not moving from that spot. I apologized for trying to force her to do something she wasn’t ready for. We sat and watched a movie and when it was done, she stood up and walked to the bath as if to say, “on my time, dad.”
The next day she slept in and when she woke up she was smiling. She didn’t feel 100% but she was smiling. When she sat at her computer she asked me if we could go bowling. We had a 20 minute conversation about bowling, exclusively using her eye gaze computer, which was a thing we have done maybe once and talked about probably never. I promised I would take her. I followed her lead all day and as she fell asleep that night, nestled in my arms (it’s the only way she really falls asleep), she looked up at me and smiled until she couldn’t keep her eyes open anymore.
On Sunday friends ended up coming over intending to swim. Her stomach had been upset and though swimming was on the agenda, she didn’t want to swim. She protested getting into her bathing suit and I figured it would pass when she got in the water. A few minutes into the swim she came to me, staring, purposefully at me, silently demanding that we get out of the pool. I helped her out and her attitude changed, appreciative, once again, I had “heard” what she was communicating to me. When her friends were done we played games, again, using her eye gaze. Months had gone by without her using it significantly and prior to that, her one word sentences with the computer required some mental gymnastics on our part to make sense of her intentions. Her peers still struggle to understand what she’s trying to say, but when they came to the table she said, “what’s up” and engaged with them for, possibly, the first time in their lives. They had been asking questions about Rett Syndrome all day, and I could see their excitement to finally be talking to Maggie, after years of struggling to understand her.
I’m not saying I want Jenny and Grayden to leave town every weekend. But next time they do, I’ll be prepared, but not necessarily for it to be work,
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.
Sometimes the smallest of moments show us the beauty of life. Those same moments can also be heart wrenching. I had one of those moments this past weekend. It was simple, it was nothing, it was beautiful, it was brutal. As a family, we were leaving our friend’s house. We were walking to the elevator of their apartment building. AJ and Magnolia were walking ahead, I was walking with Gray, while he was scooting. I was so impressed with his scooter skills. He just got it for his birthday. AJ told him once, how to use it. And that was that. Gray was able to balance, push with one foot, lift his foot up, use his foot as a brake and navigate. It was awesome.
Magnolia had a scooter when she was the same age. Three years old. Three years old is when Rett took over. We kept pushing her to use the scooter, we would have her hold on, while we put our hands over hers. She could balance, but we did everything else. As I watched Gray, the memories of Magnolia came flooding back. I had to take a deep breath. Remind myself, that isn’t where we are. It happened. At this moment, we are here. Gray is riding his scooter down the hallway, having a blast. Magnolia is walking with her daddy. She is walking and she has fought for that skill. She may not be able to ride a scooter, but she can do so much. Ahem, balance on a skateboard. Our lives are complex. We are navigating them, the best we can. There is camaraderie within the Rett community around the accepted fact that Rett parents live with grief. It comes in waves. We live moment to moment and we have no real choice what that moment will be.
As a parent of a child with a complex disorder, sometimes we have to choose positivity because life isn’t choosing it for us. Our lives are brutally beautiful.
Grayden at 3 years old, living his best life.
Magnolia at 3 years old, taking on a Rett life, but making it her best life.