Living life with MS (or any chronic disease) will get you noticed — and that was one of my biggest fears! But you can decide how others perceive you: as a meek victim with a large assortment of medical devices or an adventurous soul filled with joy, strength and courage to overcome even the toughest challenges.
I was diagnosed with Multiple Sclerosis just after marriage. I knew I wanted children, but with this diagnosis I had to wonder. I was blessed with an amazing neurologist who diagnosed me. She encouraged me to get healthy and start a family, if that was most important to me. And that is exactly what I did. The most incredible thing with MS, for many people when you are pregnant the MS symptoms seem to disappear. No one in the medical community seems to understand why that happens. But it happens often.
I was blessed with a son first, and many years later, a daughter. They are the joy of my life, and I am forever grateful that I am a Mom! I enjoyed every step as my kids grew. But when they were little, we spent much of our time at home because of my limitations. I made arrangements as they got older to involve them with other kids and more activities. But the biggest thing I loved to do with my kids was reading. And that is a gift for life.
About the time my son was 10 and my daughter was 3, we decided to take a huge family trip (in my eyes) to Walt Disney World. I arranged to rent a motorized Scooter for the very first time in my life. We chose to stay at the park, and maximize our visit. One day, my husband and son decided to go ride the ‘big guy’ rides and we girls stayed back to relax by the pool. This is the day that is emblazoned in my memory!
My young daughter was wearing her bright inflated yellow floaty-bands on her arms and I was riding around in my new scooter. I had everything I needed attached to me with a waist pouch: (2005 cell phone, cash, drivers license, point & shoot camera, etc) We also had a tall colorful see-thru Disney water bottle with a tall firm straw and a bright blue lanyard attached for ease of use. The bottle often dangled on the scooter handlebars. And, I was busy doing my best to learn how to control my movements with the new scooter.
Out of the blue, my adorable young daughter reaches up with a big smile on her face and pulls the water bottle toward her for a drink. This was like a scene from a crazy children’s movie where one action effects another and another. Sooooo, when she pulled on the bottle, the lanyard pulled on the scooter handle, which pulled on the power lever, which immediately escorted the scooter forward at a turbo pace… straight into the swimming pool with a loud KER-SPLASH, with me sitting on it with a totally stunned and wet face!
OMG!!! Now what?!?! Thank God, I was fine, and so was everyone else. I was sure counting my blessings. But it quickly became very clear that the scooter was going nowhere, and nice folks nearby helped me out of the pool. Before we knew it, the boys were back but were totally confused because they noticed the scooter was missing and there were lots and lots of wet objects laying around the room attempting to dry out. I insisted they tell us all about the guys day out before I explained any of our morning. My son was in total glory explaining the excitement and fun they had moving at a faster pace than with Mom. (One of the many amazing things that Disney does for guests with a handicap, is that I could easily ride the park buses with a scooter (totally amazing to me) and in the park, those with wheelchairs, scooter, or other mobility challenges were automatically moved to the front of the line. That was a true honor and blessing that my kids loved, but I felt unworthy because I saw many young kids so much worse off than I was.)
When the time came for me to start explaining the GIRLS morning, our daughter decided that she wanted to explain the story from her point of view. My photo-savvy husband was prepared and had the video camera turned on and was recording as she started talking. Thank goodness the video camera had been left in the room, because it still worked. So her cute little voice starts explaining and she quickly gets to…
“and then “Whoop. Mommy and ‘cooter’ are in the Pool! Just like that.”
Our son starts breaking out in laugher in the background. The whole family just starts laughing and I begin to relax a little. And in my family, that story goes down with the best of vacation memories.
Bottom line: Regardless of your circumstances, Find Joy in Life! Laugh at Yourself and Find Beauty in the little things.