The Truth about Tomorrow..

Tonight I am dreading tommorrow.....

I have been dreading it for years now.

Honestly, Ive been fearing it .

and m not ashamed to admit that at all....

This was not a part of parenting I EVER imagined having to accept.

This is not a part of parenting anyone ever dreams about.

Tomorrow we go for Sophias offical wheelchair consulatation...

and I dont want to go.

Id do anything to not HAVE to go.

Somehow it feels like an admission of defeat..

Which is utterly rediculous, I know. But it doesnt take away that lump Ive been trying to swallow all weekend. It doesnt change anything about the way I feel. I want so badly to be able to whole heartedly embrace this as just anoouther tool. but just something about it is just so.... heavy....

Lately its been hard for me to write on here. Because ive been so unsure of my own emotions and I dont want to come across as crazy... But honestly thats doing a HUGE disservice to the other moms who are going through this same issues. I did this so I could help people understand what its like to walk in our shoes.... not so I could look like I have my shit together all the time.

Im human too.

So im going to try to work through this with you guys . openly.

I hate this.

I hate that my daughter has to sit 80% of her day.

I hate that her legs work and her brain works but they dont work together yet... YET ...

I hate that I hate this all so much.

I hate that this damn stupid chair brought up so much that I was sure I was over.

I hate that she works so hard everyday to do what comes so easily to others...

I hate that she is forced to live her life in slow motion.

I hate that people will see her chair and assume shell never walk

I hate that people will see her in her chair and pitty us.

I hate that people will see her in her chair and assume.

I hate that people will see her in her chair and let fear STOP them from asking questions.

I hate that no matter what I feel like I could have done something to avoid this day.

I have that I feel like i need to avoid this day.

but most of all I hate people feeling sorry for me , for us...I hate being a spectical for assumption.

For a long time I could get away with taking sophia out and brusing off well meaning strangers with " shes shy " or " shes tiered" or " she likes to ignore poeple" when sophia wouldnt make eye contact or coo or smile at random people, like "typical" babies do.. I didnt have to be a rare disease advocate AND remember my grocery list....

Now its getting to the point where shes not a baby, people expect certian behavior from her because i guess she doesnt " look disabled "

( or so ive been told, whatever that is supposed to mean)

I take her out and I HAVE TO use a form of adaptive equiment (ie: her tula carrier or her go to seat) and people NEVER miss with a dumb comment " oh shes going to be a spoiled one huh?" or " whats wrong she doesnt want to walk" its like poeple subcontiusly loose all sence of socail acceptability in the face of a disabled child.... its madening.

Sometimes I can be kind and say something clever to avoid any hurt feelings..

Other days I just flat out say " yeah she cant walk... she has a rare condition...but it sure would be nice to see her run wild around this store I tell yha" because seriously theres only so much shit one mom can take and I dont feel baad for making them feel awkward..

I dont walk up to you in walmart and say " oh it must have been laundry day" or " i seee someone doesnt own a mirror"... So WHY is it ok that random people feel the need to comment on my choice of child transport...?!?!? and all this aggrivation is just with a damn carrier and a go to seat... can u imagine what kinda crap ill get with a little pink wheelchair ? i dont mind talking about sophias issues. I LOVE the chance to help people understand her. but dont be rude. Ask dont assume... it makes all the difference.

I feel that same terrifying indescribable thing I felt the day before we picked up the hearing aids sophia had to use ....

what if im just not mom enough to do this right. ?

but really is there a right way to accept this kind of change?

I dont thik there is. Maybe thats why I have kept coming up short on finding an answer.

because there really is no question...

it is what it is

We will get up ealy. have our coffee. not talk about how much we dont want to go ( even though we BOTH will be thinking it). We will get sophia packed into the car and take the longest ten minute ride you can imagine... it always hits me hardest in the car for some reason...

Tomorrow will mark yet another day where there is a before, and an after.. just another wave crashing into our shores..

I dont know how ill feel tomorrow.

I dont know how ill feel when see her in those chairs.

Right now from here it feels so scary and perminant...

like if I let her get a chair: im saying I lost hope...

But truth be told if I could have seen what was in front of us from the start id probuby have died from a heart attack. Im capable of much more then I realize...

I dont know how we are going to do this.

But I DO know that we will be there tomorrow as a family.

taking it head on. making the hard chioces.

Because that is what we do for sophia.

anything . and everything.

regaurdless to how we feel abut it.

my acceptance will catch up . I have faith, it always does.

and as long as I have faith, my families love and sophias trust...

I can do anything she needs me to do.