Life can change so quickly

Life can change at a moments notice. We try to take each day as it comes and make the most of it. There is no other way to put it, some days are just wonky. Sunday was wonky.

Both of our kids are getting over colds. We decided to take it easy this weekend, because we are traveling soon and we really wanted them to get better. Sunday had different plans.

The day started off strange and just got stranger and harder for Magnolia as it went on. The first incident happened right after breakfast. I was walking to the kitchen, Magnolia was walking right behind me, all of a sudden I heard a thud. I turned around and she was on the floor. She had fallen and hit her head. She was also in a very strange position. Usually if she falls, she instinctually puts her hands out to protect herself or stop herself from falling. We’ve actually had to work on this a lot, but she does it. But there she was, on her knees, head forward with her arms splayed out and twisted. It really caught me off guard, we both ran to pick her up. Iced her head, then she seemed fine, tired but fine. She ended up taking a nap soon after with AJ and I took Gray to soccer.

A few hours later, she seemed fine. I asked if she wanted to go for a bike ride, she did. We thought it would be fun for her to ride in the bike trailer and for Gray to scoot along with AJ and Mags. Again, everything started off great. Mags was so happy to ride. AJ had the hardest part of towing the bike trailer uphill, but it was fun. Until it wasn’t. About 15 minutes into the bike ride. I was walking along side Gray, while AJ rode up and down the street with Mags. A car came, so we stopped and pulled over to the side, trying to teach Gray to be aware of cars etc. I was standing with Gray as the car passed us. AJ was maybe 8-10 feet behind us. All of a sudden, I saw Mags lips turn dark blue, almost black, then she slumped over. It was a seizure. I yelled to AJ and he rode the bike up to me, so I could help her. After a moment with her I could see the seizure wasn’t stopping. So AJ started counting so we could know how long it was taking. Thirty seconds went by, the color returned to her lips and her seizure stopped. That was it. We decided to go home. AJ rode back with Mags, while I walked back with Gray.

The rest of the day, Magnolia’s breathing was really erratic and she was very emotional. It was a wonky day.

Later, after the kids were asleep. AJ and I talked about her seizure and how fast it happened. We discussed what we would have done if her seizure didn’t stop. I think we probably have a little PTSD from our last year of seizures, especially the three months where her seizures were out of control and there was a constant feeling of life or death. It’s unsettling.

We discussed how he would have had to ride back to the house with her seizing, how he would have had to get her out of the trailer, then get inside and get the emergency seizure meds, by himself, while I ran back carrying our son and his scooter, hopefully getting there in time to help if either of them needed it. If you are thinking, why are you discussing this? It’s because we have to. This past year, with every big seizure, after Magnolia was okay, we learned, we discussed and we problem solved for future seizures.  Because we knew that moments matter.

The funny/not so funny thing is, we always have Mag’s emergency seizure medication with us. It’s in her backpack that we take everywhere. We don’t go anywhere without it. This was different, we were just biking through the neighborhood for a few minutes. What are the odds? She hasn’t had a big seizure in months.

We also realized, Mag’s fall earlier in the day, was probably a seizure. How odd her body was positioned, it had to have been a seizure. This made both of us really sad, because one of our biggest worries and concerns when Mags started having seizures was, will she just fall and hurt herself? The answer is yes, it can happen and it sucks. We live our lives moment to moment but also on high alert.

Here is us 15 minutes before her seizure, having a great time. Enjoying this moment.

4 thoughts on “Life can change so quickly

  • Oh gosh, that’s so scary. Reading this kicked in my seizure PTSD too! I’m so sorry and I 100% understand all you were feeling and the way you were making plans on what to do “if”…been there! Hope that’s all you see for a long time!!! ❤️

  • So sorry this happened. It is horrible that rett does not leave her alone.

    We will beat rett out of everyone’s life real soon. That day is coming and then we will celebrate. Love you guys mom

    • Thanks Ellen. We are hopeful a cure gets here sooner than later. For her sake, for ours and everyone else that Rett Syndrome affects.

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