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