Sadly, I've been back on that "roller coaster" of emotions...
you probably know the ones. If you're reading as a parent to a child with extra medical needs and a list of expectations that you could write a test cheat sheet for on one finger, you definitely do. The extremely high moments of beaming pride for the littlest feats your child masters, even with extremely limited abilities and a very grim initial diagnosis... and then there is the bottoming out, when you feel like all strings you've firmly attached to hope are being clipped all at one time.
I'm sure the ride is similar for us all, I'm actually told it's "normal" when parenting a child with any special needs (I don't exactly believe in any sort of "normal" these days)... but, somehow right now I feel that my own roller coaster ride must not have met the guidelines for safety or speed and has left the track on a completely different journey.
The repercussions of those emotions = blog-writer's block... it's gone & I'm back to giving my blog more of my passion-filled time. I still have the passion, just momentarily lost my desire to share it.
Let me give you the short version of my most recent ride:
A little over a week ago, that ugly "s" word grabbed hold of my sweet 'lil man and did not want to let go without two hefty doses of rescue medications. I HATE seizures, but unfortunately watched my normally happy boy succumb to some of the most intense seizures he has ever had in his little life. One may have been tolerable, but he had many... then many less intense ones too which landed him with a mini-vacation over a span of four days at our local Naval Hospital pediatrics ward.
These nasty episodes we had been so lucky to avoid for a couple of years, for the most part. I was completely naive to think that my 'lil man would be that "ONE" child living with a hydranencephaly diagnosis that would not endure these dates with such bodily violence. It made me physically ill to watch... after they were under control, I still was not. My stomach turns, my brain doesn't stop churning either... and I had a few moments where I wasn't entirely sure that I was being a selfless mommy, that some of those medical "professionals" were right and that there was no reason for any of this to be happening...
It's amazing the crazy scenarios that run through your head when you're watching these things happen to your own little boy, the one you are so accustomed to watching beam with the biggest smile on the planet... full of nothing less than pure joy and life, and always sharing that joy with everyone that he meets along his way.
Those seizures changed him. 11 days later & I swear that they did, not that anyone else aside from me would notice.
Those first days, hardest days I have endured... I felt, for the first time, like I was actually helplessly watching him die. He was unresponsive, his eyes rolled up in to his head so far that all the doctors could see were the whites of his eyes. His limbs were completely limp, when he was awake... the very few moments he was, he could barely hold his eyes open and definitely couldn't move his arms or legs, let alone his head. The scariest part was that I wasn't scared... extremely sad, but not scared. That only made me mad.
I almost thought for a second that I may be ok with him joining the angels, that was only a fleeting second. Let me assure you that while I know he would be complete once he does... I want to be selfish for many more years, as long as he's "healthy" and keep him here with me. Then I was so angry... again.
The anger actually began before the seizures now that I think about it, almost as if my mommy-instinct knew something was happening. I should've been thrilled that he had made so many new accomplishments between preschool, physical and craniosacral therapies. Instead, I felt cheated out of being completely prideful of that "typical" list of prideful things. The most silly one, the fact that he couldn't throw a temper tantrum like a 2-year old should!
I found myself hanging on to the "it's not fair" special needs mommy sign... that I wasn't allowed to beam with pride over him potty training or learning to be more active at the park. Instead I had been happy that he could hold his head up for minutes unassisted instead of seconds. It's getting harder, he's getting older. He is supposed to be doing so much more, we are supposed to be running around at the playground not hopeful that his wheelchair will get here this week so that he's not slouched in a misproportioned stroller.
Back to sitting in one of the most uncomfortable chairs next to my lethargic baby boy in the hospital room, doing crosswords on my phone and trying to act like I'm being positive when presenting updates to my friends and family. I want to be positive all of the time, for some reason I cannot always find my positive... so, I fake it. I must fake it well when I need to, but most of the time the optimism is alive in there.
Then he loses "friends" from our hydranencephaly network of families... this time wee, little 7-month old Robert. There is another jab to the gut with a machete... may he fly high and play amongst the angels and send some peace to his loved ones he left behind on Earth.
Fortunately, those 11 days have passed and my AMAZING 'lil man is back to school and having his very first spring program today with his class. They're singing and dancing (as much as a class of 2-4 year olds can) to Katy Perry's Firework: