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.

When Halloween came around this year we were all set with our costumes. Jackson was dressing up as Perry the Platypus and yes it was a homemade costume that my dear friend made for him! It was a replica of his favorite stuffed animal, a beanie boo named Perry.

Little brother was going as an inflatable dinosaur. I was going to be a skeleton, but that day during clinicals, I had one of the worst days of the year and came home in tears. I most definitely didn’t want to go out in the terrible weather we were having that day, which was high winds and rain, to go trick or treating. I sat the boys down and we discussed our options. They quickly both agreed that they didn’t want to deal with the weather either and would like to pass out candy.

Once the time came, they happily handed out candy and then about 3 minutes in…little brother realized that he wanted to just run to a couple nearby houses to trick or treat. He did that and Jackson and I continued to pass out candy. About 4 minutes after that Jackson saw kids running around outside and noticed that the rain had stopped. He asked if he could then go trick or treating.

So I forfeited my costume for warm clothes, Jackson and his little brother forfeited their costumes because 1) an inflatable costume + high winds= TROUBLE. and 2) a homemade platypus costume once wet will be like dragging heavy material around. So we got out our old costumes and Jackson grabbed my old dinosaur costume and his little brother grabbed Jackson’s old corgi costume. We headed out in the cold and wind and within 5 minutes it began to rain again. I had jackson’s new mobility scooter with me and let him know that whenever he needed it, it would be available.

We walked around the neighborhood for about 20 minutes and Jackson began getting very fatigued. He took a rest in the stroller and I pushed him around for the rest of the night. What happened after that became quite interesting to me. As I pushed him up to the various houses people made random comments like “can he get out of there” (they didn’t want to have to walk off their porch). Another person said, “ahhhh…i don’t want to walk over there because my socks will get wet”. This happened over and over again. To the point that little brother began getting the candy for his brother. Then Jackson just gave up. He said “forget it, i want to go home”.

We began heading home and we were cold, wet, and tired. As we rounded the last road there were a few houses with their lights on. Little brother ran to one and I kept pushing Jackson. Then all of a sudden I looked up and saw an older gentleman walking not only out of his house and onto the porch, but walked all the way down his driveway. He came right up to the boys and told them to pick as much candy as they wanted. Jackson took one. He said to take more, but Jackson insisted on just one. I thanked him and we made the trek home.

It was such a simple, yet profound thing that this gentleman did. He was observant and although he didn’t know the situation, he could tell that something was different. And here’s the biggest part…..HE DID SOMETHING ABOUT IT.

The simple act of making the situation easier and not drawing attention to it. Just acting and making such an impact in our life.

This man probably had no idea how it impacted us since Halloween. I have thought about it constantly and how when the holidays rolled around I wanted to do something as a ‘Thank You’. So I recently got some chocolate chip cookies together and made a little gift basket up and wrote down the story in a card to deliver. I went over to the house and knocked on the door. A man answered and I wasn’t sure if it was the same person or not, so I introduced myself and asked if it was him that was there on that Halloween night. He said that it was his Father who had been there.

I told him that his Father is a good man and told him the story of what happened and how that simple act of kindness made such a significant impact on our lives. How grateful we were. He remarked “that’s my Dad”. Of course when I began talking about Jackson and his struggles with Duchenne Muscular Dystrophy I began crying. I then finished what I was saying, handed him the cookies and card…and by this point his 2 daughters had gathered to hear what was going on.

I am so very thankful that kindness can be found in negative situations. I am grateful to this man who went out of his way when he didn’t have to. I am also glad that i took the time to acknowledge this individual and hope that others can become aware and less ignorant when they see someone who may be different and instead of judging or turning away, they lean into the situation and try to help in any way possible.