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
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.
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…
October is Rett Syndrome awareness month, but apparently so is February for Team Magnolia’s Hope. Wow, just wow! I am speechless with the amount of support, love, community, awareness and fundraising we just received this past month. It almost seems as if it was planned, but it wasn’t. The good deeds and love just kept pouring in and I’m speechless. Actually, not really. I’m happy, I’m proud, I’m thankful, I’m grateful and I’m overwhelmed with hope.
Living life with Rett Syndrome isn’t an easy one. We are constantly balancing our chaotic daily lives with the dream of a cure. Our community of friends, family and strangers has stepped up, time and time again. Thank you! Thank you! Thank you! So much happened in February, I’m going to try and recap each special event and moment.
First, we started off the month with the Soupergirl campaign. If you remember, this campaign was built by Sara and Marilyn the mother/ daughter duo who live in Washington DC and own a shop called Soupergirl. Check out their shop, click on the link….They wanted to bring awareness and raise money for Rett Syndrome because they have been touched by Maggie’s story. Again, we have never met them, but they just proved that you don’t have to know someone to stand up and fight for them. They personify the definition of, kindness of strangers. So blessed and grateful for their support and campaign. We will meet one day and there will be hugs and tears over a bowl of delicious soup, I’m sure of it. Thank you Sara and Marilyn from the bottom of our hearts.
Secondly, Maggie’s cousins in NYC put on their 2nd annual Gaga for a cure for Rett. They are ages 9-14 and took it upon themselves to bring awareness, fundraise and do everything they can for Maggie. Maggie has cousins, 2nd cousins, aunts and uncles pulling for her and doing everything they can to help us fundraise to a cure. I am so proud of these kids for their tenacity, empathy and love for their cousin Magnolia. Its pretty awesome to see kids become advocates.
Then, Reverse Rett Austin happened. I had some old friends from high school come out and support, it was wonderful to see them. Then…My family showed up in full force. It was amazing. Aunts, Uncles, cousins, second cousins, and so many more. It truly was awesome and heartwarming. I couldn’t be more proud of my family. They have been there when it mattered most, showed up to donate, fundraise, emotional support. I’m overwhelmed by the love and support. And my parents! They came out in full force and I’m so thankful for their generosity, support and love. Also, I’m wondering when we are going to Puerto Vallarta? Thank you everyone, I love all of you dearly. Oh, and Reverse Rett Austin raised over $140K!!!! What?! Such an amazing job by all of the Rett families involved. Everyone should be so proud. This event was spearheaded by Rachel and Jason Rothschild and I’m truly honored to know them and I am inspired by their tenacity to fundraise for the NYC event and now the Austin event. Neither would have happened if they didn’t do it. Its families like theirs which have put us in the position to cure Rett. Much love and thanks to you guys. Thank you!
Then, a dear friend of my sister’s, Linda Buffington, contacted me and wanted to fundraise for Rett. Linda is a teacher and I am passionate about the education initiative at GP2C. So we decided Girl Power 2 Cure was an awesome fit to raise awareness and fundraise for. Linda put together a Rodan and Fields party and asked people to donate to our fundraising page for the Disney Princess/Girl Power 2 Cure half marathon. This was such a gift, without her I wouldn’t have been able to raise what we did and we met our goal because of it as well. Truly grateful.
Then, the Olympics happened and AJ put together a video of Maggie and her buddy Marlowe skiing with Olympic Snowboarding Gold medalist,Jamie Anderson. It was such an amazing experience for her and really for all of us. It was pure luck that this day happened. Thank you Jamie Anderson for coming out and spending the time to snowboard with Magnolia and Marlowe. We will treasure this day. Hope to see you again. Also, check out More4Marlowe on Facebook and support Marlowe’s family on their journey with Rett Syndrome. Follow Jamie on insta @jamieanderson or Twitter @JamieAsnow
Finally, Team Magnolia met up with Girl Power 2 Cure to run the Disney Princess half marathon in Orlando, FL Team Magnolia consisted of Jenny(me), my niece Kaylen and her boyfriend Tyler. What an amazing weekend. We met our fundraising goal, thank you to everyone who donated and fundraised (hugs to Linda Buffington). I’ll recap this entire weekend in another blog. I’m just so proud and thankful for Kaylen and Tyler. We had a great time and it was just a wonderful experience seeing these two young adults, feeling empowered to change the world. Their life’s journey as adults is just beginning and honestly, they will do great things.
So much happened this month. Fundraising, awareness, exhaustion, Rett life, typical life, travel and I gave a speech. Life is crazy. Our life is crazy on steroids, but our family and friends keep showing up, showing up and showing up. Just so you know, I see you showing up across the country, we feel your love and Maggie knows it too. Thank you. We are grateful.
Also, Gray turned 2! In the midst of this chaotic month of travel. AJ had to single parent while I was gone twice, and Gray decided to stage dive out of his crib and not nap or sleep. #life #stayathomedad
Ending February like……