This is a boing blog title as I feel I don’t have a
creative bone in my body right now. This Easter weekend I am not much in the
festive mood. I am trying to be though.
A Jehovah witness nearly cornering me in my own driveway
today while I was talking three minutes for myself soaking up the sun and reading
a magazine really did me in.This was really really really not cool. Pretty please go away and never
ever come back?
Tonight we are trying to find an Easter movie to watch
and Netflix has nothing except Charlie Brown’s Easter.Pitiful Maybe I should have
asked the missionaries to stay a little longer and teach us about Easter?
Both of these incidents have led me to the same conclusion.
I am not in a mood for any holidays right now. Not even for chocolate-although
our big Easter hunt is tomorrow.Hopefully tonight some festivity will make its
way into my soul.
Right
now we are consumed with scoliosis. I try to accept and make
peace and be ok. I try to make it all beautiful. But it is hard. Really really
really hard sometimes. It’s hard to watch this constant obstacle make its way
into my daughter’s formally peaceful and
easier life. It’s hard to watch my girl at this already difficult age have to
struggle to often both physically and mentally deal with this. This weekend I
am in a bad place about it all.
We got the new protocol on Friday. The new night brace. I
feel like no one around me understands. I don’t see how anyone really could remotely
understand what this is like.
You see when you have a kid who has something like
this-it just never goes away…it is like a heavy weight that you constantly
carry…it totally sucks. While everyone around you seems to come in and out of happiness
and sadness and obstacles and joys –just like you used to..you daughter will
always have scoliosis and always have to deal with this. You are alone with
this.
It’s hard enough having a 12 yr old girl with an attitude
and very hormonal. Throw in a night brace that literally rotates the spine to
100 percent correction for 8 hrs.…and then who can barely sit up in the morning
after brace is off as she is so scared
her back will break in two.. who has to get up and put on yet another brace for
the entire day..it seems like too much.
And what has brought this bout of sadness on for me and
she this weekend? Struggle. Change. The new protocol. Anytime something shifts
it is so damn hard. We were finally getting usedd to the Spincor and now this.
We know it is the right thing to do, but no one ever said that the right thing
was the easy thing did they? And change with bracing is mental and physical
torture for her. My heart breaks juts watching what it does to her.
She is
such a trooper-but she has angry feeling about this. Who wouldn’t?
She wrote us a letter the other day that nearly broke my heart about how hard
all this is and how she can’t express it to us except for in writing. She can’t
talk about the letter. Scoliosis has taken my already difficult daughter in
many ways and hidden her inside of herself even more.
So Easter is hard this year. Yes it is.
Tomorrow we will do the Easter hunt….and have fun. We did
a cabane a Sucre with Hubbys family in the sun. But my heart is with scoliosis
and nothing and no one else.
And this week we will both go back to beautiful. Thursday
my company has invited Beauty to come do a presentation on scoliosis, on the
brace, she will show a video she made on the brace and do and in brace dance
and an out of brace dance. I expect it
will be one of the most memorable days of our family’s lifetime and probably the
most beautiful thing I have ever seen.
But despite that today I don’t feel “that I get to have
this beautiful” tonight I feel sad that “this is the way we have to achieve it”
Tonight is her first night in the brace all night. At the
lowest tightness that will increase over a 10 day period. I feel scared. Of
tonight..of the future..and everything that is ahead.
I feel scared that I will never ever again be able to
truly give a rats ass about spilled milk like I used to.
Tomorrow is a new day
Keeping it Real.
