For the Record

Perhaps in trying to project optimism I have come off as lackadaisical with regard to Marissa's upcoming surgery.  I want to make something blatantly clear.  There is NOTHING easy about letting people whisk your child off to an OR and cut into some portion of her body and it does not get easier the second, third, fourth or thirtieth time it happens.  I am physically sick to my stomach in the days and hours leading up to surgery, while she's in the OR and for a day or two following.  Simply put, there are about a million things that can go wrong and the more often a child has surgery and the more body systems that are involved, the greater risk that at some point something WILL go wrong.  I am an intelligent person, perhaps too medically educated for my own good, and I know the risks.  I view Marissa as a very strong child in spite of her diagnoses and obstacles, but was reminded recently by her neurosurgeon (whom I respect more than anyone I know) that she is, indeed, extraordinarily fragile.  That said, I go about my days and I try to approach each new procedure with a positive attitude.  Deep down, though, please know that I am scared to my core.  I have visions of her surgeons walking out of the OR with heads hung low coming to bear unthinkable news.  Still, I push those deep to the recesses of my subconscious and replace them with visions of my holding her tight while she fights through the recovery from anesthesia and the weeks to sometimes months of physical and emotional recovery following.  I remain positive and put positive energy out into the universe because that's what we're supposed to do, right?  I don't often talk openly about my fears or the 'what ifs' because on some level perhaps hearing them outloud makes me worry that they might be more likely to come true.

I've racked my brain trying to figure out why things with regard Marissa seem different.  Why does it seem to me that if it were someone else's child that others would be dropping everything to come running to offer support but with Marissa it seems business as usual.  Is it just my perception or have people just grown accustomed to her being in the hospital and having surgery?  I wonder if because we chose her and we chose to put ourselves in this "situation" it is less tragic than if she would've been born to us and therefore people feel we're stronger or more equipt to deal with these things.  Perhaps I've unintentionally pushed people away.  Whatever the reason, the truth is I feel guilty when I have to ask for help so I try really hard not to do it.   People have busy lives and they certainly don't owe us anything.  I don't expect anyone to want to drop everything and come running just because we need help.  Still, sometimes I think it'd be nice to know that there was an unconditional offer of help out there.  That doesn't mean when help or support is offered I don't appreciate it,  I just don't want to be a burden and I don't want to feel like by accepting help we've ruined someone's day or weekend or whatever.  I'm overly sensitive that way, it's one of my flaws, I know.

At the risk of sounding like a big whiner and complainer, let me say that I am grateful and totally appreciative of everyone who does offer up prayers and well wishes.  We always receive comments on Facebook and here on the blog, text messages, emails and even a few phone calls when we're hospitalized and having surgery and the love and support mean the world to us.  I'm always amazed by the support we receive from our virtual family and especially the 'strangers' who truly get it and who I know would, if they could, jump on a plane and be by my side in an instant.

Marissa is tentatively scheduled for surgery next Friday, April 1st, pending the results of a few more tests she will have today.  The plan is for ENT to take a look at her throat, remove any new cysts that have grown, dilate her subglottic airway again if necessary; Neurosurgery to evaluate her ventricular shunts if necessary; General Surgery to assist with the placement of the distal shunt catheter into the gall bladder.  It SHOULD be a relatively quick, uncomplicated procedure necessitating a relatively short stay in the hospital.  I will, as always try to keep everyone updated.