Changes...
I like change. Sounds strange but I like it. I get bored pretty easily so being on the move ALL the time with Maggie was perfect. I never knew which direction she was headed but I knew it would be pretty unpredictable.
When she was a toddler she could run fast! I mean, kick off my flip flops, because I had to RUN to catch her. She would be walking on the sidewalk then bolt into the road. She would look back at me because she knew she wasn't allowed to do that.
Change brings direction. It gives a new purpose. I would get a new diagnosis and run with it. I would research, take classes, join support groups, and seek 2nd and even 3rd opinions. I welcomed change as the kids were growing up. Now as they get older and Maggie has journeyed home, I am not as fond of change. I know that God is in control and has a plan for me. I pray for his guidance daily. I pray for his strength to silence all that is going on around me and in my head. I focus on my faith. Please Lord, what is the change I need in my life?
When Maggie started high school, I knew she would put in her 4 years and be done. Students with disabilities have the opportunity to stay in school until their 22nd birthday, if appropriate. I never wanted this for Mags. I knew God gave her to us to raise her and help her have a quality life. So, to us, that meant she would put in the "average" school time that was required by law. We planned on having Maggie graduate in 4 years then I would quit my job to stay home with her and do life together as an adult with severe disabilities. This would be a huge change that we were trying to plan for. It would be a huge change. I stayed home with my kids until they were all in school full time. I teach so I was able to be home after school with them and off with them for holidays and summer. It all made sense to us.
Maggie's doctors would tell us at check ups that we should write a book/manual for parents of kids with disabilities. Her doctors liked that we were fully in and ready for anything that was thrown our way. Scott and I never thought about writing a manual but looking back, I wish I took notes. For those who know me, my brain is a little unorganized. Scott is linear. He is awesome putting words down on a page that flow and make sense. My brain is not at all like that. I like to be thrown curve balls and try to do something great with it. Maggie dying is the biggest curve ball of all so far and now I am not really sure what to do with it.
Maggie's death was, is, and will always be devasting. Yes, it's a change that I NEVER planned for. I kept the idea of SUDEP (Sudden unexpected death in epilepsy) tucked deep in my file cabinet of a brain but tried never to think about it. Talking to other parents, doctors, support groups, SUDEP never was the topic of discussion. Maggie had so many medical pieces in place, I didn't think SUDEP would be the thing to take her from us.
Maggie had a lot of pulmonary problems that truly made me nervous. This was a big reason she had nursing. For example, Maggie would aspirate when she seized. Any liquid in her mouth then would go into her lungs, she couldn't cough strong enough to get the fluids out of her lungs, then she would develop pneumonia. This was the problem we were having more than seizures alone. This was a change that was really difficult for Maggie. Because of the aspiration and pneumonia, she was not permitted to drink liquids. She had a feeding tube for all her hydration needs. We got pretty good at watching Mag's really close. She would steal people's water bottles, pop, anything that was a drink she couldn't have. Maggie hated that change.
So looking at change since November 19th....The biggest change to note. Maggie passed away. Wait a minute! I didn't see this coming. No warning, no sickness, no nothing! As I think I mentioned in some previous blogs, Maggie had a Gastrology appt., Neurology, and a well check all within 3 weeks of each other. All the docs said she looked good! Nothing stood out that should alarm us for us to watch for. Neuro even checked her VNS (Vagal Nerve Stimulator) and it had not recorded any seizures. This was an alarm for me. Normally, neuro tell me at what time she's having the most seizures, but there was no pattern to report. I took this a sign. I didn't know what it meant, but I remember thinking, wow, nothing to report, I wonder what that means.
My favorite day used to be Saturdays. Scott would go to the gym early, kids were still at college, and I would get morning cuddle time and cartoons with Mags until the nurses should up for their shift. Mary Kate was home for a change because she had to go to work early that day. I had walked her out as she was leaving as I waited for my coffee. I think I was eating up Mag's Oatmeal too. She LOVED oatmeal. But November 19th would change my life. It would slap me in the face! Maggie would not wake up, Mary Kate would not go into work, Dan would be forced to come home from college and I would never get my Saturday morning cuddles and cartoons again. Instead, that day Mary Kate had to call 9-1-1 and help me try to revive Maggie. Dan got the call we had discussed but never that would come to reality, and instead of joining us for cuddle time, he rushed to the hospital to see if Mags was ok. She wasn't. There would be no ICU. There would be no more new diagnosis. There would be no more shopping with Maggie. BIG CHANGE! I didn't like this and I still don't.
So what else could I change that I could control? My job. I have taught special education to high school aged students for the last 10+ years. I love my kids, but it was a tough year. It was hard to see her friends in the hall every day. It was hard not having her not wheel into my classroom at the end of the day with Kat. So I thought about getting out of education...then...an internal job posting...there was an open position at the kindergarten level. I would apply. Why not! I absolutely love that age. I always planned on teaching tiny humans. This was the time to make a big change. I am now a kindergarten teacher! Change that I look forward to. My family and friends knew I needed a career change. They didn't see this coming but are super excited for me.
I have been asking God for direction and strength. I know that I have been put on this earth to share my gifts of love and patience for children. I have always clung to the verse in the bible where Jesus tells the disciples to let the children come to him (Matthew 19:14 (NIV)). I feel that I am going to be able to put some of the energy and excitement that I used to have with Maggie into my new position. I think Mags would want me to keep sharing love and sunshine for all kids. I am ready.
