Recently a dear friend shared with me her experience after renting a scooter at a museum for a tour with Jackson. I found what she said to be extremely on point and agreed with everything she said.

THINGS I LEARNED WHEN I RENTED A SCOOTER:

1) Always looking up at people is exasperating
2) Signs in front of museum artifacts are not easily read from scooter height
3) Most people were kind and moved out of my way
4) It’s frustrating to not get the full experience because some areas required stairs to access
5) The access elevators are claustrophobically small 

6) Some people stare…….. rudely.
7) All thresholds are not created equal
8) I was blessed because I could get out of my scooter whenever I wanted
9) Batteries can die
10) Reverse is scary
11) Stairways next to ramps are frightening. What if I didn’t see them and accidentally drove my scooter onto them…. in reverse!!???
12) I loved sharing the experience with Jackson. It helps me understand him better.
13) You have the most adventurous son who does not let his inability to walk limit him 

LASTLY-

14) It should be a required course taught in every middle school- Scooter 101. Followed by a required high school course, Scooter 201.

I wonder.

As I look at your sixteen year old self I wonder to myself…

I wonder how tall you would be without 11 years of daily steroid use that stunted your growth.

I wonder how it would feel if you got your drivers license and I was a passenger while you drove.

I wonder what it would be like if you didn’t do a driving simulation to see what hand controls/adaptations were available. I wonder if you didn’t have that appointment with a callous and crude OT that belitted you and asked you “can you even hold a steering wheel” and then told you that driving wasn’t  in the cards for you; I wonder where you would be driving to on a Saturday night.

I wonder what it would be like to not have conversations with you where you tell me that your soul is pure and maybe that’s why you don’t have to be on this Earth for long.

I wonder what it would be like to see you run around or ride an e-bike. I wonder what it would be like to not watch your legs shake consistently while you simply try to stand up.

I wonder what it would be like to freely travel the world with you without a million worries if there will be a handicap vehicle available, if there are ramps, or if the location is accessible.

I wonder what it would feel like if the world was accessible.

Just kidding…that would be illegal!

My dear sweet boy just turned 12.

And with every fiber of my being I cannot express what this age, more than any of his other birthdays, has made me feel like. See I’m the Mom who posts the “Happy Birthday” on social media at midnight the day of.  But this year, I just couldn’t. It’s been 5 days since I have been wondering why I just couldn’t get myself to do it. And then I figured it out.    

THIS IS WHY-

Friday was an ordinary day, but it was also an absolute milestone of a day.

 I was feeling the complete and utter excitement that although Jackson is affected with Duchenne Muscular Dystrophy, for the most part he is doing well and is still able to walk and is healthy.

 It was also the lump in my throat and the pit in my stomach of the realization that he is getting older. It felt like a hit to the stomach, you know the kind… where you get the wind knocked out of you. It was the worry that with each passing year he is nearing the age that so many DMD boys lose their battle.

It was the reminder that due to various difficulties we are unable to have full baseline data on the condition of his heart. It’s the fear of this Covid-19 pandemic causing him respiratory issues. See, for DMD boys, cardiac and pulmonary issues are what takes them down. It’s the realization that this past year DMD has really reared its ugly head. It has caused many changes within Jackson.  We are noticing his facial features exhibiting Cushing’s Syndrome (from chronic steroid use), a stop in his growth, and severe concerns about his bone health with the recent news of his osteoporosis. It’s hearing his doctor say that is he takes a fall, he may never walk again. It’s driving across state lines to pick out and order a handicap accessible van. It’s re-designing a home so that he has a space that’s completely wheelchair friendly so he feel’s safe and secure. It’s so many things when you have a child with DMD.

And then it was the beautiful smile on his face when he woke up to see a house decorated by his little brother with balloons everywhere. It was the joy of him and I building a cake together to see JUST HOW TALL  we could make it before it collapsed (we got to 6 layers), it was making his favorite meal of stuffed shells together, it was the excitement of him opening his presents to reveal dinosaurs, platypus’, pokemons, and board games. It was him cheering that he even got some cash. It was the combination of a brutal and beautiful day…….Brutiful.

And then he came over and gave me a hug and said “Thank you Mom for making my birthday so special” and that was all it took. My heart just about burst with love. Because although I feel all those other feelings, the greatest of them all is LOVE.

Happy 12^th birthday to my beautiful boy.