disability
Waves of crashing emotions
If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of grief. Now most days I wouldn’t say there is grief, just a wave of sadness, and also not everyday. Most days, I’m fine. All things considered, I think that’s pretty good. I didn’t think I’d get to this place.
The reality is, emotionally we live moment to moment. When the good outweighs the bad, we’ve had a great day. It’s when the bad moments start to outweigh the good ones, that’s when we start to wave the white flag.
I’ve been thinking about this a lot. I am tired of the tease of calm waters. The past couple of years have no doubt been hard. Waves of symptoms affecting Magnolia. If it’s not seizures, it’s breathing issues, or GI issues, or balance issues, or unexplained pain, or her body weakening and tightening, her hands have mostly stopped functioning with constant wringing, the list goes on. Rett is relentless, but then we get moments and we breathe lighter. A little bit of weight lifts off our shoulders. Then those moments turn to weeks. We are in awe, we enjoy the reprieve, we hope it stays. We celebrate medicines working. We adventure. Then it stops. We watch daily as symptoms slowly return. The waves start crashing bigger again.
I try not to compare Magnolia to others afflicted with Rett Syndrome. Sometimes its curiosity, sometimes its jealousy, sometimes it’s survival. What is that mom doing that I’m not? I’ll reach out for advice. Usually when I reach out, I find out, they are drowning too or they are in their own dingy rowing like crazy trying to stay ahead of the next crashing wave. I’ve realized, every family is in their own small boat, making sure they are wearing life jackets, because the waves of Rett are relentless. Nobody has found land, not yet anyway. Until we find land, we will keep trying to live our lives as best as we can in our dinghies. #dinghylife #rettlife
Diagnosis Day – Five years later
On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger.
The last five years have been the most difficult in my life. I’ve watched my daughter lose skills, regress, have seizures, need CPR and be hospitalized. That has been her life, at least that is what Rett has done to her.
At the same time, she has fought for her lost skills. She has pushed herself mentally and also physically. She has overcome relentless side effects of many medications. She has screamed in agony, squealed triumphantly and shown strength, immeasurably. She wakes up every morning with a smile, in the hopes that today will be better.
She has had five more birthdays.
She endures. She fights. She inspires. She is beyond brave.
There are days, weeks, and months that are unrelenting. She gets knocked down, she gets up. She is fighting Rett Syndrome like she is Ronda Rousey. I’m just her trainer on the sidelines. I wish I could just tag her out and take her place, but I can’t. All I can do is help her, give her strength, give her love and be her voice.
She is my warrior girl.
Chaotic and fun summer travel
A recipe for a crazy but fun summer vacation.
Ingredients
One crazy independent toddler
One amazing and strong kid with Rett,
One busy, multitasking and exhausted dad
One overwhelmed but happy mom
Directions
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…
