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.

This pandemic has been challenging for many in numerous ways. The complete change of routine, staying home, and creating a new normal. Self-quarantine comes with its own challenges as well. Having an immuno-compromised child is frightening on a normal day to day level, you throw in the mix a virus that is not clearly understood that infects at a high rate and that’s enough to scare any parent into not leaving their home. As most of humanity would say, there is now a BEFORE PANDEMIC and AFTER PANDEMIC viewpoint. For me…that couldn’t be more accurate for our situation. The pandemic came with all its own set of difficulties, but one in particular has made me feel knocked completely upside down. Unsure of where top and bottom even are. I have struggled trying to navigate this and felt lost each day.

See, when Jackson was first diagnosed with Duchenne Muscular Dystrophy (DMD) back in 2012 at the age of 4; life as I knew it completely changed. It began being filled with understanding genetics, finding a neuromuscular center, the top physicians, reading endless articles, and constantly traveling to various appointments. I knew that sometime down the road I would be faced with major transitions (which I self admittedly do not do well with).

Not only was the pandemic a major shock to me, but what hit me so much harder was that little did I know, the major transition that I was keeping in the back of my mind for years, was on its way to our home. It was happening fast and furiously… and it hit me like a tornado.

Over the last few months I have spent day in and day out with Jackson, watching his body weaken…his mobility decrease…and silently crying my way through it.

I was not ready for this, even though the literature told me he would lose his ability to walk years ago, he has always defied the odds. Knowing it was something that was going to be so very difficult to get through, my brain just blocked out the knowledge of this event happening and viewed it as an eventual…not something looming on the horizon.

Watching Jackson struggling to do things like climb a stair, take his dog out to the bathroom, get into the bathtub has been brutal. Watching Duchenne unravel his muscles has been heartbreaking. It comes with a whole set of emotions, that come in like a fury. Anger, sadness, frustration, and hurt. It is balanced with spontaneous hugs and amazing moments.

I have spent the better half of the last two months trying to navigate my way through this new path. I have spent countless hours reading articles, reaching out to other DMD families, trying to make a plan of attack for ramps in the house, meeting with specialists to pick out his power wheelchair, designing a handicap accessible van, and the list goes on and on.

I have felt scared and alone in this journey. I have lost too much sleep to measure. My anxiety has heightened to a new level. See I am the type of person who likes to make a plan and then sets forth to implement it. I felt completely unable to do that with the weight of this. I was taking it one day at a time. Trying to not overwhelm myself with any unnecessary information. Turning a blind eye to the media, because that was too negative and draining. Trying to find a few minutes a day to quietly cry in the bathroom. Then putting on a brave face, a smile, and pushing through the pain.

I knew this moment would come. I don’t think anyone is ever ready for it. I have been dreading it for the last EIGHT YEARS. One very early morning I came to the realization of why it was hurting so bad. I allowed myself a huge cry/scream fest. I realized that it was hurting so much because that is grief. I was trying so hard to get to the acceptance phase, but the grief process doesn’t work linearly like that. It is more like a rollercoaster….the ones that i hate that just have a lap bar….and you never feel safe and secure in it. I was having daily ups and downs and working through it. I felt like a toddler who was having a meltdown and was kicking stones and dragging their feet walking down a path they didn’t want to be on. At the end of the path was acceptance…and I knew I had to get there. I just had no idea how difficult it would be.

So I’m still taking it one day at a time. I can feel my strength increasing. I know that I am making lots of progress in this path, it can just be hard to see sometimes . I gain my strength from looking at that boy, who i swear is 10 times stronger than I’ll ever hope to be. I easily get frustrated with myself. I tell myself to stop having a pity party. That he is the one experiencing this disease process. And after those thoughts pass, I then give myself a pass and tell myself that it hurts so bad because I am looking at the whole picture. I’m knowing the end of the story and that is quite frightening. I tell myself that yes he is going through it physically and emotionally, and i am going through it in a different sense- but still right there with him.

As this path elongates, the pain will surely prevail. Having important empathetic people in my life that come, stay, and don’t necessarily try to understand my path, but just walk beside me are the greatest gifts. This journey will not be an easy one…but I’m trying my hardest to do it with a little humor, grace, and lots of strength. I know that we will get through this.

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.