Recently I had an experience that reminded me of how we live our lives. How we do not subscribe to fear (although is would be easier to). How instead we choose to focus on the positive. How we seek out the joy. How we strive to live each day to the fullest. Lately, I have felt that after this incident, our joy was stripped from us. Leaving my heart hurting and heavy. My tears felt endless; my body weak. We took time to feel it and allowed it to sit with us. To feel the cascade of emotions that came along with it- anger, sadness, grief, despair. We slowly began to put ourselves back together. It has taken some time, but the sadness, pain, and grief don’t win. The grief can be there, tirelessly waiting, for another day. Not today. Today I will alchemize my pain into power. Why, because of HIM. He didn’t choose this, he is the one that lives with this disease each and every moment, and he doesn’t get down. He rises up, teaches me so much, and seeks joy in the simple.

Earth School curriculum is learning what works (what increases serenity) and what does not work (what increases suffering) – Liz Gilbert

I’ve attempted to write this more times than I care to admit. It’s been sitting in my bones for a year now.
At first I couldn’t write it because of disbelief. Then my mind kept going to years ago when Jackson was 4 & I had just gotten the diagnosis and I remember thinking “at what age will he stop waking?” And that thought plagued me for years. But then acceptance came along and the thought diminished *just* a little.
See Jackson was getting around incredibly well for having DMD, at age 15 he was still walking to the dinner table, able to walk to the bathroom, etc. And then a medication change didn’t go as I was told it would and within a few weeks…whoosh…there went his ability to walk. And it was beyond devastating. And the doctors said “theres’s no correlation”, but I knew there was. From watching him try to bear weight & watch his legs just tremble. From his scared “mom I just cant’t, I can’t do it, I can’t walk anymore”. Sixteen. Now I had my answer I had wondered about for so long. Sixteen is when it would happen. Right when you are getting a drivers license, gaining independence, and freedom…he had just lost so very much of his.
And the emotional discussions felt endless that he was bringing up, I questioned if I could handle one more of them. I almost broke the morning he told me “I had a dream last night that I could walk again”.

And then began another ‘new normal’…one that I thought I was just about prepared for; but I was mistaken. The emotional toll and the physical changes, the need for so much new equipment, and then learning how each one works to transfer him safely. I can now say…IT’S BEEN A YEAR.
And acceptance is finally something I am able to do. But please don’t beat yourself up or be hard on yourself if you too are going through a life challenge and you’re just not yet ready for the acceptance stage. I see you, you got this, keep going 

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.