Wednesday, August 17, 2016

Unexpected -Partly-Normalcy?

It's funny ( well not funny at all actually ! ) that when you have a kid who has some type of illness or condition it kinda trumps all the other normal sucky stuff in life too . You end up not noticing some of the other annoying stuff as you have this constant worry surrounding you all the time . Some of the good stuff you also don't get to feel as deeply as there is always this cloud surrounding experiences ; of uncertainly and worry . 

I know we have all felt this way for the last almost 3 yrs .
And of course it goes without saying there is a lot worse than scoliosis - a lot worse . But from talking to literally dozens of other parents about scoliosis it is a tough one as a chaotic disease with no predictability .You live scan by scan and day by day  with your kid in an awful brace for years and then you could do all that and still get spinal fusion surgery . However  give me and my kid scoliosis any day of the week over lots of other stuff - but still it is Beauty's reality and trumps a lot of other stuff in our life that is not health related . Lots of other stuff tends to fade into the background when health of a child is involved . It is hard to explain unless you have a kid who has a diagnosis with something health would then understand exactly what I mean

Well today we got to very unexpectedly feel normal !! What a shock ! After Friday's bad scoliosis news we all had an emotional weekend for sure ( some good talks came of it but just so hard ) 
Not even a fraction of our minds or brains or hearts would have predicated  that today we would actually have some good news at the spinecore  appt ( other day brace she wears ) 
For me and hubby and especially beauty- news would have been same or likely even worse as this doctor always see the X-rays as worse than the surgeon .

So we went with heavy hearts and almost did not even go as felt too hard . We had it on our minds that we wanted her at least out of day brace but knew that the expertise of the doctor may convince us otherwise . We knew we were facing an uphill battle and would leave upset as either Beauty would be stuck in day brace and we would be resentful of the outcome, or we would go  against doctor's very expert and professional advice and have her not in day brace and feel like crap and guilt ridden . 

But we got great news !!!! She looked at X-rays and spine and said she has improved a few degrees in curve!  ( never heard that before in the last years ! And that in her opinion had barely grown ( less than 1 cm ) and also that her risser sign was higher than 4 and was 4 plus 

And then she looked at the three of us and said " you are out"
And we said " out ? Out for what ?"

And she said " out of day brace !!!!!!"

Omg .. Let the pictures tell the story a little more 

All I know what my first thought in way home was that I could worry about normal things again . Or be happy . Smile more . Feel normal 

No more wearing and washing  and weaning and rashes and bruises and stains and hassles (in the day anyways!)

bye bye brace (and hello physio excercises for a lifetime) Do you see her posture even out of brace???? OMG

And if I felt like this inside imagine Beauty and how she must have felt ? ( hard to know with her as she is a girl of few words ) I just feel like now we can live a little more and a little lighter . Even if only part of bracing done that is half less then where we were Friday and the harder part gone as they day brace is a bigger issue for her . On my way home I started to allow myself to just have normal thoughts about life : groceries and boredom and rain and birthday parties . Food I shouldn't be eating and what earrings I wanted for my birthday .

I let the normal come in and it felt plain odd . And kinda plain good too . 

We stopped at Tim Horton's and I ate a strawberry shortcake muffin . Really ? During the week ? I started texting a couple of friends about some plain old normal things too . Odd 

And Beauty I could see just wants to get back to her normal . She is half way there with one brace off and free- and half a way to go 

With health stuff it's kinda like there is no time for it . No space in our lives . Life is hard enough without it . But when we are dealt those cards we have to find space for it and make it our new normal .. We don't have a choice . In the last few years we have had our share of health stuff and still do. A little break feels wonderful. Indulgent even

So today just felt good to get some good news and then be normal . To get to experience what that feels like again 

Until the next time of course . Until the next not normal . But for today and just now ? It feels heavenly to think of my daughter as free . And to selfishly thing of me as free a bit too . To be able to stop thinking of her so often and worrying so much and just get on with some of life on some ways . I will be thankful for this extra space in my brain for me !
I will take half of normal for sure

I want to go back to this me....

......and this serenity

and this me too...

and this  kinda laugh happiness (ps ironically  all these pics were taken through scoliosis times when I was forgetting-but somehow I still want to be back exactly there and her up there laughing

If I am honest.....I am ready to be free too