12/24/2023
I always have very mixed feelings on posting about Megan’s medical journey on social media. Mostly because she is 21 and it is up to her how she wants to share this piece of her life with others. However, after one of my professors commented on one of my papers with the question “what would you want people to know about living with disabilities?” I felt like it was the right time to share an update. It is hard. It is just hard sometimes. She rarely complains, smiles all the time, and acts like it’s no big deal for the sake of making others comfortable. Of course, she is incredibly happy and does genuinely feel this way, but still sometimes it’s hard.
No one understands what she goes through on a day to day basis. No one has even heard of most of her conditions. They don’t understand why she can’t walk well, why her hand won’t open up, why she can’t eat solid foods, or gets dizzy and lightheaded. Ehlers Danlos Syndrome is no joke. This past Monday we traveled to yet another hospital in Rhode Island where a world renowned neurosurgeon performed surgery on Megan’s spinal cord. Occult tethered cord can happen in EDS. This will hopefully stop the worsening of her neuromuscular symptoms. After surgery, she had to lay flat for 24 hours. Then her task was to work on sitting up again. The goal was to go 15 degrees per hour but after the first 15 degrees, Megan’s body protested. The migraines, vision issues, and nausea all kicked in. The next day after tons of IV meds and fluids, she was feeling a little better so PT came to work with her. They finally got to standing and she fainted (we decided there will be a support group for the PTs Megan has traumatized over the last 4 years). So back to the bed she went. Little by little she did progress to walking a short distance. Finally we were discharged yesterday, but needed to stay in a hotel halfway because they didn’t want her in the car sitting up that long. So last night we stayed in the hotel we were in 1.5 years ago for her big MALS surgery in Stamford, CT. Today we will make the rest of the trip back home just in time for Christmas. She will use her walker for awhile until she is better healed.
She said to me it would be nice to have a break from school where I wasn’t recovering from surgery the whole time. Last spring break was her gastric pacemaker surgery, which was at least close to home but still a 3 day hospital stay. It is impossible to describe what all this entails but anything that requires a 5 day hospital stay is the real deal.
Watching your children suffer and not being able to fix it still the hardest but I’ve become really good at just sitting in the pain with her and letting her know she doesn’t have to be strong for my sake. I can handle it and it’s not her job to take care of me. I share this extra bit because I think it’s so important for us parents to learn that we need to be there for our kids and not the other way around. I have an incredible support system which helps me be the best version of myself for her. I’ll always be grateful for what this illness has taught us. Life is about so much more than the silly things (gifts, sports, which college you go to, if you go to college). It’s about relationships. That’s the key to living a good life. Still this kid amazes me with the way she handles herself through this journey. With grace, gratitude, grit like you wouldn’t believe, and somehow still manages to be a kid who doesn’t put her dishes in the dishwasher and goes out to the bars with her friends. We weren’t sure we would make it back by Christmas but it looks like we got a Christmas miracle after all. Merry Christmas and happy holidays to all of our friends and family!
