Justin, Junior

Thursday, April 21, 2011

It Could Be Worse, I Guess...

...and, conversely, of course, it could be better, too.

Hello, Mother!
  One evening in March, as I was drying my son off after his bath, he did this weird eye thing, where he deliberately blinked and then rolled his eyes back into his head. He did it twice. I thought it was weird, but hey, my kid’s weird, and I honestly thought maybe he had gotten water in his eyes. And then, a few days later, he did it again. And as dumb as it seems, in retrospect, I thought, “Nerd. He’s discovered how to roll his eyes.”

But then he did it a third time. He was playing with a push toy - you know, the really annoying one that has all those plastic balls in it and makes that impossibly loud popping sound. He was pushing it around, and then he stopped, blinked his eyes once, very deliberately, and then his eyes rolled back into his head again. He repeated this three more times, and I called his father, and then his pediatrician.

His pediatrician referred us to a pediatric neurologist, and we had to wait more than a month to see him. The appointment was brief, and pretty harsh: Epilepsy.

I have spent the past month telling myself that I was probably going to hear that. And that I would be okay with it. That most kids outgrow epilepsy (in fact, the neurologist informed me that 80% of kids outgrow epilepsy when it manifests at this young of an age). That, as far as epilepsy goes, this whole blinking-eye-roll thing is pretty mild. He doesn’t convulse. He doesn’t asphyxiate or turn blue.

But…it was still hard not to cry when the neurologist said it.

Of course, as the doctor was questioning me about family medical history in general and Junior’s medical history in particular - for example, things like had my son ever had a head injury - Junior was walking around, banging his head against anything and everything. For whatever reason, he seemed to have forgotten how to duck, and insisted on trying to walk underneath the sink multiple times, hitting his head with each attempt, and I’m thinking, My God, how often does he hit his head?

“No, Doctor. No head injury.” Bang. Jesus.

So we have an MRI scheduled for the 10th, to “rule out any underlying brain abnormalities” that may be causing this. If there were ever words calculated to scare the hell out of any parent, those would be towards the top of the list. Of course, his development has been normal and the doctor said it was pretty routine…

But nothing about this seems routine to me. My baby has to be sedated for this procedure. I hate sedation. I’m confused and incredibly nauseated when I come out of it. I don’t want my boy to have to go through that. I don’t want there to be one minute where he’s left without me, surrounded by people he doesn’t know and bright lights and the thought of him being scared for even one instant upsets me far worse than the diagnosis of epilepsy does.

The reasonable part of me knows he’s going to be fine. He’s a healthy little boy, and surely if there were underlying brain abnormalities or damage, then I would know about it. He is smart and active and he is with me all the time.  I'm his mom.  I would know.  The fact that these seizures (there, I did it - I used the “S” word instead of referring to them as “episodes,” which is what I have been doing these past months) are triggered only when he is tired (they always happen before nap or bedtime) points strongly in the direction of epilepsy rather than anything else.

And the reasonable part of me also says that epilepsy is no big deal. We can handle it. Of course, we can handle it. Even if we couldn’t handle it, we would damn well find a way to handle it. That’s what parents do. This isn’t life altering. It’s a matter of keeping him off of stairs and away from swimming pools and playground equipment when he’s tired, so that if he seizes, he won’t get hurt. It’s a matter of learning what to do if the seizures ever do escalate. It’s five more minutes of instruction before leaving him with a sitter. When the neurologist asked how I felt about medicating him, I declined without hesitation. At this point, I feel that treating this with medication is far more detrimental than the seizures. So, he blinks weird and rolls his eyes funny and just sort of checks out for 10 to 15 seconds sometimes when he’s tired. It’s no big deal.

But oh, that mom part of me, that bone-deep, protective, howling mom-part of me feels like this is a big deal. I’m the mom who thinks a damn stomach bug is a big deal. This is my baby, my little boy, I would straight punch someone in the face for looking at him wrong, I would give him my heart if he needed it. I let him have the last M & M, the only Oreo, the final bite of ice cream every time, and his brain is misfiring on some level and I’m his mom and I can’t fix it. Why the fuck didn’t I become a neurologist? His neurologist has weird hair and cowboy boots. I have weird hair and cowboy boots. I should have become a neurologist.

OK. Mom freak-out complete. Moving on.

So, that’s where we’re at right now. MRI first, and when that comes back normal (because it will, because it has to), we’ll be scheduled for an EEG, where they’ll use some different techniques (flashing lights, hyperventilation) in order to try to induce a seizure so the neurologist can try to see what type of epilepsy Junior may have. And then…that’s it.

Writing this has actually made me feel better. There are things much worse and much scarier than epilepsy. And in all honesty, Junior has had cases of diarrhea that has had more of a profound impact on our daily life than his seizures do. I’m back to where I was a month ago, when I realized that the testing is more worrisome than the actual diagnosis. After all, there’s no learning how to “handle” his seizures - we’re already handling them. I will continue to do what I’ve been doing: trying to minimize his trigger, which, at this point, simply seems to be sleepiness. Easy enough…Lord knows we love naptime in the Kilgore household.

And I will get my little guy through these stupid tests with plenty of hugs and songs and kisses and maybe a vanilla ice cream cone from Sonic. And my husband will get me through these stupid tests with plenty of hugs and songs and kisses and maybe a vanilla ice cream cone from Sonic.

Wednesday, April 6, 2011

Lessons from my Dad

My Justins...
My dad was awesome. He was the kind of guy that could fix anything, even if he had never seen it before. If something exploded, imploded, shattered or collapsed - no problem. Dad would fix it (and on the off-chance he couldn't, he’d buy you a new one). He was good at every sport, faster and stronger than any other guy (even your dad), a gifted artist, oblivious of any wrongdoing on the part of his offspring (the way a good dad should be), a firm believer in never starting a fight but never being afraid to fight back, a champion of the underdog (and all dogs loved him). He had served his country as a paratrooper for the United States Army during Vietnam and had a great respect for others who chose to serve (as long as it wasn’t one of his kids and you didn't brag about it too much). He thought pregnant women were beautiful, and babies miraculous…and he would answer any question truthfully, as long as it didn’t have anything to do with sex. He worked hard and gave us everything, and never needed anything for himself.

It’s pretty safe to say that my brothers, sister and I all adored him. Dad taught us so many things - how to draw a hand, check your oil, make potato pancakes and how to nail a five-rail bank shot. He also taught us how unassuming and normal a hero can be, and how bravery is quiet.

He died of cancer in February of 2005. No one understands the devastation of losing a parent except those who have lost a parent. I don’t have the words to describe even the surface of pain and bewilderment you feel when you face the world fatherless (or motherless) for the first time, and realize that you have to face the world that way for the rest of your life. It sucks. Immensely.

But time really does pass, and softens the harsh edges of grief, and tempers the terror and anger and sorrow with distance. We all still cry sometimes when we talk about him, but it’s a different kind of sorrow - a “remember-when,” kinder, more mellow kind of grief, the type of tears that you can also smile through a little.

When I met (or re-met, considering we went to elementary school together) my husband, and realized that he was the one I wanted to spend my life with, even though I was incredibly happy and over-the-moon in love, I was still saddened by the fact that my husband and father never got to meet - I think they would have liked each other a great deal. When my brother walked me down the aisle and gave me away, I wanted with my whole heart for it to be my dad’s arm I was holding, but even through that, I was comforted in knowing how proud he would be of me, and how happy. And when the ceremony was over, before we joined our guests at the reception, I hugged my husband, cried a little, and said, “I wish my dad could be here today.”

And when my son was born, and I became a mother, I felt a whole new longing, wishing that my dad could see his grandson, and hold him, and see how awesome he is…and that my son could know how awesome his grandpa was. And before we let our family in to meet the newest member, I held my husband’s hand, hugged my son close, kissed his head, and cried a little as I said, “I wish my dad could be here today.”

As my son grows older and has developed relationships with his various family members, I try to picture how my dad would have fit into my son’s pantheon of adults he worships. He’s got aunts who spoil him and an uncle who adores him. He has two sets of grandparents on my husband’s side and my own mom - count ‘em up, people. That’s THREE grandmas. THREE. He’s got a great-grandma on his daddy’s side, too, so, as you can imagine, he lacks little in the spoiling department. I watch the way my son wraps his Papa Don (my father-in-law) around his chubby little finger, and I am so glad to see that, and how crazy his Papa Gary (my step-father-in-law) is for his “Buck,” but I don’t guess I’ll ever stop wishing that my dad was getting wrapped around one of those fingers, too.

My dad adored my sister’s kids, was certain that the sun rose and set on them, and they, in turn, were pretty sure he hung the moon. (So am I, for that matter.) And I am so glad that my dad got the chance to be a grandpa before he died. My niece and nephew were old enough to when he passed that they still remember him, and I hope, when my son is older, they can tell him stories about their Papa Jack and how much they loved him. And I will tell him myself that his grandpa would have adored him, as well…I just wish he were here to tell him himself.

The truth is, though, I wish my dad could be here every day. But he’s not. He wasn’t here to walk me down the aisle, or see the birth of my firstborn, and he won’t be here to see the next. This is a forever thing, this grieving we do, even tempered with time. But I tell you this - I still feel like the luckiest girl to have had the father I had for 25 years than any other dad for a hundred. And I will teach my son the things my father taught me: how to check the air in your tires and NEVER drive on a flat, that bragging is ugly, how to make the perfect buttered toast and how to knot a tie and to love Johnny Cash…and how the strongest of men are strong enough to be sweet and kind and tender.

Everything I know about being gentle in a harsh world I learned from him. Every man I ever meet is measured against him - that’s the legacy a good father leaves his daughters. And I am raising my son to be the kind of man my father would have loved and respected, because that’s the legacy a daughter leaves her father.