withdraw.

as with anything, a withdraw of any said thing, is never easy.

a withdraw in its very nature, is difficult.

to withdraw from drugs, alcohol, money, people, society, traditions, pasts, ect...it always seems to be far from easy...to remove that said thing, from whatever your 'normal' with that said thing had been, is very, very hard.

so, when my sweet fifteen year old son, who lives with Duchenne Muscular Dystrophy, asked if he could withdraw from a clinical trial...that, we have now invested over two years of our life, blood, sweat, money, tears, muscle, and energy into, i was a bit taken back...

for a few seconds, a bit speechless.. (which these days, seems to me more often than not)..

i didnt really know what to say,

i wasnt sure how to feel about it either.

because, if im being honest, deep down I was feeling the same way.

i wanted to withdraw too.

i was having my very own set of reservations...

but,

if you know me,

you know, im no quiter...

so,

I just kept shoving those reservations to the side...

i mean, this trial, at the beginning...had so much promise....gave us so much HOPE.

i didnt want to give up on that.

just the thought, that this drug MIGHT preserve some of the muscle function my first born still had...and all the possibilites for Jax, my younger son who also lives with Duchenne...

how in the world could i just withdraw from that?

who was i to question science.

who was i to question doctors.

who was i to question THE experts.

afterall, we long for a cure, an end to this awful disease....

so i led with one response...

why?

simple, yet to the point.

and then the truth I was afraid of, the reality I also seemed to be witnessing before my very own eyes,

"because I just dont think its helping me, i actually think its making me worse."

knife right to the heart.

ugh...

yep, i think that too son, but of course not out loud did i say that.

but then it hit me....

WHO AM I?

WHO AM I?

i am this kids' God chosen freaking mother.

i am exactly the one who should be questioning science, doctors and the experts.

i am THE expert.

(my name should be Karen.) lol

so, if not ME, then WHO!?

and my intuition has never been wrong before, why would it be now?

after that first infusion this year, which was his first confirmed dose of medication, i felt something was different about the recovery time...

i shoved it to the side...

and then the second infusion this year, which again, something felt off, and the one day recovery time, turned to a couple days and noticeable new weaknesses...

i shoved it to the other side...

and then, that third infusion this year...that was it for me, that one day of recovery turned into almost a week AND very noticeable new weaknesses...

i couldnt shove it anywhere...

and now, he couldnt even drink from his water bottle by himself, cant wash his hair, can barely get his hand to his face to itch his nose without using his other hand to assist or ask someone to help...

yes, this also is in part because he lives with duchenne muscular dystrophy...i know.

but the intuition is also REAL.

and then the schedule opened for the fourth infusion, and i wrestled with myself...i couldnt shove my reservations anywhere...

we had to schedule, the time frames are so slim for these things, his decision seemed to be made...

yet,

like a drug withdraw,

withdrawing from something that has been a normal part of our life for so long, that has these promises to make something feel 'better', to help us in some way...whether that be an illusion of help as when getting high or the idea of playing God and curing a disease...

the withdraw is just never easy...

even when the intuition is there,

and all signs point to the solution.

so then it really began,

my mind starting racing, the arguments and conversations i was having in my head, the concerns, the fears, the thoughts, the assumptions, all the shouldas, wouldas, couldas, the denial, the rationalizing, the lies, the truths, the hopelessness...the literal weight of the world on my chest...

and also the look on his sweet, innocent, beautiful face...

and i realized his eyes watched me and waited for my response, and i knew, he would do whatever i told him to do...and i knew this was a defying moment in both of our lives,

so, I simply said,

I trust you, you gotta tell me what you want to do, and I will do whatever you think.

so i began to type a message to the coordinator of our withdraw, and then erased it, typed it, and erased it, typed, confirmed with mason again, typed again, erased again, confirmed again, and then typed again THE words,

'he has decided, yes, he wants to withdraw....'

and almost instantly, that weight on my chest, was lifted.

not only for me, but also for him.

i could just sense it.

it was literal instant relief...for us both.

see, what I am learning, is no, withdrawing from anything is never easy, but most of the time, it is necessary.

necessary for our growth, our health, our healing, our happiness...

to withdraw from something or someone, doesn't have to be the end,

it could, perhaps, just be, a very new beginning.

today, friends, we officially went thru the withdraw process.

it was emotional.

i am so disappointed, so sad, so freaking defeated...

but,

also,

as i am so proud and at peace.

and as i sat in these appointments and listened to this child of mine stand up for himself and share the reasons why he has made this decision and what HE was feeling and experiencing...I have never felt more convinced that it was the right move for us.

he knows himself better than anyone, and although I might just be the expert God chose to be a mom of this child, it is very evident, that this child of mine was the expert God chose to teach me a few things about life that i have been missing for quite some time.

when we dont have the courage to withdraw, we can fail to remember what is REALLY important, losing sight of all the precious things that do actually matter.

so friends, what might you need a good withdraw from?

perhaps, this is the exact moment God chose, for you to make that decision.

i hope you will.

xo