Love and Loathe

This photo... while a simple x-ray to you, speaks volumes to me. 
It is an image I both love and loathe.
It is Gracie's spine and was taken on March 19th, 2015.

I love it because it is possible. 
Five years ago (and all the years before that), no one would have believed that this x-ray of Gracie's spine (and more) would be possible.  Five years ago, she was clinging to life, battling four rounds of septic shock in a matter of five months.  Five years ago, the doctors told us (more than once) to prepare for the worst.  That her little body couldn't take much more.  Five years ago, I sat at Gracie's bedside and though I begged her to fight, I also gave her permission to stop.  Actually, if I am being totally honest, I also begged her to stop because it felt so selfish to beg her to fight.  I prayed (though I don't really know to who or how) to let her rest, to take her if that meant that the constant pain, sickness and suffering would go away.  If you don't understand how I could think that about my own child, I don't really care.  You haven't walked in my shoes and you sure as heck haven't walked in hers.  Until your child has coded (on multiple occasions over several years), until you've left the room to simply go to the bathroom and come back to find a crash cart and eleven people working on her, until you've been told to expect the worst time and time again, until you've read and signed DNR paperwork, you can't possibly understand where we were five years ago... or nine years ago... or nearly twelve years ago.  But, that's another post on its own... back to why I love this image.  I love it because it is possible. 

I love it because it shows, in all her glory, how bionic Gracie is. 
She is totally bionic (and she'll be more bionic soon).  Don't be jealous that you're not bionic... she earned this multi-million dollar, one of a kind body.  She fought harder than anyone I know to keep that bionic body.  But in this image, you can see evidence of battle wounds, equipment, hardware... the whole shebang is there, not covered by anything.  The only thing you can't see here are the dozens of scars... and the scars are a lot harder to look at than her x-ray image... the inside is just cool and super bionic.  My daughter is badass. 

I love it because it shows her perfect little child-sized muffin top.
Gracie has fought hard for every pound and every inch of growth her entire life.  I have counted every calorie and every milliliter of hydration that has entered her body since the day she was born.   Just two and a half years ago she was 29 pounds.  Today, she is a healthy 52+ pounds (and counting).  She is growing and gaining and that is nothing short of a miracle.  The amount of tears shed over her feeding issues could solve the drought in California... the number of times she begged (and still does) not to eat, the GI issues, the central nervous system issues, the autonomic issues... the list is long and dense.  Those little rolls of chub are a medal - - a badge of honor.  And they are an insurance policy... they represent the extra weight she needs to be able to put up her next big fight.  And that, I am sad to say, brings me to all the reasons I loathe this image.

I loathe this image because it shows the imperfection in Gracie's spine... the imperfection that must now be repaired. 
It shows her scoliosis.  It shows her hip rotation.  It shows evidence of her kyphosis.  It shows what still needs to be fixed.  The curve, while bad, isn't as bad as many.  But what these conditions are doing to her heart and lungs and general well-being are, without question, bad. The damage that has been done cannot be undone by straightening her out (she won't ever be totally straight).  What we do, by straightening her spine - - fusing it with hardware and keeping it permanently straight (and making Gracie more bionic) - - is prevent further deterioration.  We stop additional damage to vital organs and nerves. We give her body the best chance possible to continue this epic fight it has so valiantly, so tirelessly, fought. 

She needs this surgery.  We've known that since she was a baby.  It's not news.  We've been prolonging this for quite some time.  Two years ago her new surgeon (whom we've now grown to really love and respect) recommended we do it that summer.  We asked for some time to let her grow, feel as well as she can (by Gracie's standards, of course), gain some weight... just time.  He, of course, had to go by our decision, as it is ultimately ours.  But he did so while expressing that if the curve progresses, the damage does, too.  Our decision was the right one.  She has gained a ton of weight, has grown a few inches, and, until just six months ago, her back remained fairly stable.  But in the last six months there's been change.  I knew it before I saw the x-ray.  I could see it in her posture.  The time has come.  And I am terrified. 

I loathe this image because it brings to the surface every emotion I've been suppressing regarding this surgery.  Until last Thursday, I was able to tuck those emotions into a compartment called "not today."  My "not today" section is rather large, but it is also useful.  It allows me to be in survival mode when needed, dealing with only the things I have to "today" and leaving the rest to reside safely there until I have time to stress over them, worry about them, harp over them, be angry about them... whatever the case may be.  It's where I stick the crap I don't need to worry about at that given moment.  It's how I stay (somewhat) sane.  I cannot suppress this anymore. This has permanently come out of my "not today" compartment and is screaming loud and clear at me every waking moment.  And surgery won't be until September... it gives us plenty of time to do all the pre-op clearances (and there are many, after all, you don't become bionic and badass without seeing a whole team of specialists) and give Gracie her summer to be in the swimming pool as much as possible.  But, even with six months to go, these emotions are out of that safe compartment and I am terrified on so many levels.

How do we make her understand that she will go in feeling "fine" and come out miserable for weeks, even months, on end?  How do we help her comprehend the gravity of the facts - - that she will spend approximately two weeks in the PICU, she will be on pain medication for another six weeks, she will be forced to wear a brace, she won't be able to go to school, she will need rigorous physical therapy?  We can't.  Not fully.  She won't understand and that just breaks my heart.

How do we subject her to the numerous risks... so many... too many... too grim... to list here.  I can't wrap my head around any of it.  I can't bear to think of the what-ifs.  But, we also can't bear to think of the what-ifs if she doesn't have the surgery.  It is all terrifying and I loathe it.

But the thing that terrifies me the most, is the potential psychological ramifications for Gracie.  She has a way of moving her body, of exercising, of just "being" that is very specific.  We call a lot of what she does "Gracie Yoga."  Her little "bionic" body might not be able to walk independently, but she sure can do some truly amazing things with it.   Her core, even with all the new, extra padding around her middle, is stronger than mine... and dare I say, yours!  (If I was smarter, I would spend 30 minutes a day copying what she does... I could make an ab workout podcast and become an internet sensation!)  Often, the way she moves her body, provides her comfort, stability and the proprioceptive input she so badly needs given all her other sensory deficits.  Her way of moving and positioning is the very thing that she can do to self-soothe. But, all this positioning and work that she does will be impossible once she has the surgery.  I will say it again... "Gracie Yoga" will no longer be possible once she has her spine surgery.  While she is the most resilient person I know and the most strong-willed, taking that power and comfort from her and replacing it with, what will be for a while, unbearable discomfort and total lack of knowledge of her own body, sounds barbaric and brutal - - because it is. 

There is nothing John nor I can do to prepare her for that.  There is nothing we can do to prepare ourselves for that.  We can't know what anything will look like on the other side of this surgery.   My "not today" compartment has been ripped open and too much stuff came flying out. I am terrified to my very core... and that, I loathe.