hey EVERYONE!
its been a minute....
actually, its been almost a year.
but whos really keeping track?
we are back.
wish i could say "and better than ever.."
but,
with duchenne,
that just isnt reality.
but, yes, we are back,
and still alive....
still surviving,
still going,
still trusting,
still fighting,
still doing,
still being,
is that good enough?
i like to think thats great enough.... <*Insert trophy please*>
so...here we are.
back and as good as we can be.
isnt it crazy to think about one year?
like,
one year, is only 365 days,
yet,
it can can feel SO long,
and,
at the exact same time,
we blink, and its literally over.
alot can happen in one year,
alot can change,
alot can vanish,
alot can be discovered,
alot can be determined,
alot can be conquered.
this past year for us was met with alot of change,
alot of loss,
alot of discovery, determination and conquering,
this past year, was longer and shorter than anyone could ever really grasp.
see, when you're living with progressive disease, the days are so long and so freaking hard and you are loosing so much so fast, that all you can do is wish it would end, hurry up, go faster...you wake up and after completing the 100 tasks and wiping the 100 tears all before 7am, all you want to do is get back in bed, the day to end.
yet, at the exact same time, living with a progressive disease is so heartbreaking, you just wish time would stop, you dream of going back to the 'good ole days' you find yourself getting caught up in the fantasy of 'how it used to be' only 365 days ago, and you beg God to just go back, slow it the hell down, and give you one freaking moment to just be.
hurry up.
no wait.
go faster.
no, slow down.
its like that idea of a double edge sword.
or things that have no other explanation than that of "bitter-sweet".
duchenne is like that,
it has these two sides, and it really makes living each one of the 365 days so much more challenging.
it makes one year feel like an eternity and an hour are the exact same amount of time.
and somehow, in the mess of it all, as you hover between eternity and an hour,
you have to choose exactly how you want your clock to tick...
how you want to spend your time,
the long days and the short days...
how you want your year to look at the end of it,
regardless of the progressive disease.
and over this past year, we have really had to decide if we wanted duchenne to be a life sentence or a death sentence for our family.
and i know that sounds harsh,
but in our home, we live in the here and now...so we are honest and truthful, and we know the reality of duchenne.
and yes, we are so hopeful for an end to come, a cure to be found,
BUT,
we dont live in that hope,
we live in the TODAY.
and every single day, we have to choose how TODAY is going to end.
and at some point we just had to decide if duchenne was going to put us to death every damn day,
OR
if it was just going be a part of our life, every damn day.
a death sentence?
or
a life sentence?
for the past year, we have CHOSEN a life sentence.
and we are trying our best, to make the life sentence as LIVE worthy as possible.
as we approach World Duchenne Day on September 7th, it is my hope that we can all come together and learn what a LIVE worthy life is.
See, a day such as World Duchenne Day, cant solely be focused on asking people for money to fight duchenne...
we need to understand that a cure is not all duchenne needs,
duchenne needs more people willing to change the death sentence to a life sentence and in order to do that, we need people funding things that help these kids and adults living with duchenne to really LIVE!!!
a life sentence needs a life wort living, regardless of a progressive disease.
a life sentence needs a year full of fun, laughter, excitement, compassion, unity!!
a life sentence needs YOU to DO SOMETHING.
Will you?
This year, to DO SOMETHING is simple:
1.) Wear RED on Sept 7th and share a photo on social media with World Duchenne Day #.
2.) Sign up to walk with us at the annual Hopewalk on October 14th or donate to our team! https://give.hopekids.org/team/521294
**Hopekids has provided our boys, our family and so many others a way to LIVE out their life sentence and I hope you can see why we are choosing to donate to them this year!
Friends, even without a progressive disease, how are you spending your time?
your day?
your year?
a life sentence?
or
a death sentence?
just #DoSomething to make it all a bit more LIVE worthy.
thanks for reading.
thanks for supporting.
thanks for loving.
thanks for caring.
thanks for doing something.
xo