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Twenty Twenty

If you would have told me in January of twenty twenty that by December, our life would look like it does currently, I would have laughed.

I mean, how silly is it to think of social distancing, masking up, and quarantining?

Like really?


Here we are...

wearing masks, staying 6 feet apart and living in complete isolation from others.

I dont know about you, but when we started this year,


I had this idea that it was going to be a year of, just like its title, 'perfect vision'....

a year that things would make a little more sense,

a year we would feel included, assisted, and loved unconditionally.

a year that would be less focused on heartbreak and duchenne and more focused on joy and life itself, despite duchenne.

I had "this" idea.

I hate those.

Clearly, that idea has since gone up in massive flames.

Twenty twenty has been everything but perfect.

It has been a year of completely imperfect, actually.

a year that NOTHING has made sense.

a year we have been unincluded, unassisted, and unloved.

a year solely focused on our heartbreak and the horrible reality of duchenne.

a year with such little joy and daily prayers of going Home.

Twenty twenty, has been a year.

To say I am ready for a new year is an understatement.

honestly, I dont know what a new year is going to change, but it feels hopeful.

And right now, hopeful is the best feeling I got.

There is this amazing non-profit organization we are lucky enough to be part of called Hopekids, and their 'motto' is "hope is a powerful medicine"... and honestly, right now, I fully understand those five simple words.

my hope in the simple new year, is the only medicine keeping me going.

my hope in the new year is the only thing to look forward to.

my hope is the only thing Ive got.

Please tell me you can kind of relate?

As I look back on this year of less than perfect, I am deeply saddened and at the very same time, I am slightly empowered.

Like seriously, being quarantined at home, alone, most days, no outside contact or conversation with anyone, with three kids, two wheelchairs, and a damn dog has been so brutal that it has forced me to become my own version of supernatural.

There were many days I didnt think I was going to survive, like no joke, when I finally made it to 8pm and sat on the couch I just cried tears of joy that I made it thru another day and my children wouldnt grow up without a mom. Some days, I think I cried tears of shock, because I literally was so surprised I did it over and over again and over again.

and there are people who dont believe in God...

honestly, God is the only reason I am here, typing, right this minute.

Twenty twenty, a year to end.

I think for us, one of the hardest things we have had to endure this year, has been abandonment within the course of the quarantine.

I feel this is slightly part of duchenne, I mean, clearly isolation with a rare disease, especially one that comes with SO much baggage, equipment and heartache...its only natural to feel isolated at times...its only natural to change course of normal and loose people along the way...i get that. kinda.

however, the abandonment of people, who promised to stay, who insisted they would stay, who have been part of your life for basically as long as you can remember...that abandonment, is a hurt like no other...especially because of duchenne.

because of duchenne, these people, SHOULD WANT TO STAY.

beacuse of duchenne, these people, SHOULD BE HERE.

yet, 10 months in and basically every single person who started this year with us, is not ending it with us.

And that, seriously freaking hurts more than anyone could even begin to understand.

it hurts more than masks, distance, and isolation combined.

You'd think I would be used to it...


but honestly, Im not.

It still freaking hurts.

and these days, it hurts much worse because now, it also hurts my kids.

So back to being deeply saddened, yet, slightly empowered...

out of abandonment, i have discovered boundaries.

and the year of 2021, is going to be full of them.

not only to protect my heart,

but mostly to protect my kids hearts.

my kids already have it hard enough, and now to deal with covid AND abandonment of people who claimed to love them, its simply too much for their little hearts.


here's to the end of a perfectly imperfect year.

and to the hope we can have as we impatiently wait for the new one.

with new masks, new rules, new ways, and new boundaries.

happy new year.


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