Coping (and blame)

Nobody can prepare you for a journey like this.  When you're a new parent, you struggle with unfounded fears of worst case scenarios like falling when you're walking down the stairs, having your child fall from a perfectly secured high chair, or being in a horrific car accident.  And it scares you to a point that defies logic.

Then you wake up one morning and watch your baby being overtaken; his tiny, beautiful body becoming unresponsive, doctors in a panic, and feel the tears streaming down your face as your brain struggles to comprehend what is happening.  Then you survive the first hospital stay, and the second, and the third, fourth, fifth, and sixth... and you're still not sure how to explain your thoughts or emotions.

Dad and I spend a lot of time not talking about how awful this is.  We try to live each moment to the fullest with our family. But I think we both know that in the back of our minds, it is always lurking.  The biggest question is WHY.  Sure, we have a diagnosis now, but that will never satisfy our minds because it's not the real question.  It's not, why is his body reacting this way... it's why him?  He is innocent.  Why him?  It's not fair.

In the beginning we threw out many, many speculative ideas about what could have caused or contributed to this.  We blamed illness, people, pets, vaccinations, doctors, ourselves... and we fight blaming ourselves still.  In my mind, I know that the condition was always there... lurking, just like our negative emotions and questions.  None of the things I just listed helped Lennon, they probably all contributed to his "early presentation."  But I look at videos of my handsome baby boy from 1 year ago and I WISH that he could still do the things he could do then... and I hate myself for missing the way he was when he is still right here.


As far as coping goes, Dad and I have very different ways of dealing with things. He throws himself into cards, and when he explained why, I was a lot more forgiving of the time he spends at the computer or "with the guys."  It's ok for him to yell about a suck out, a fish, or a bad beat.  It's ok for him to channel his anger into cards because they don't have feelings.  When he's having an especially difficult day, he'll play cards so that he doesn't yell at me or the kids.  And honestly, if it weren't yelling, it would be crying, which is super-scary for all of us because Dad is our pillar, stoic and strong.

I haven't really found my way of separating myself from the stress. I struggle with it all the time.  Sometimes talking about it helps, other times it sucks me into the void.  My mind doesn't stay far from the illness for long. I'm constantly called back to it with each feeding and round of medication.  So if any of you readers are here for advice from me, I'm probably not a good example.  Things I should probably do: allow others to help more, ask for a break when I need it, force myself to engage in a hobby (even if it's only 30 minutes each evening.)  The one thing I'm sort of good at throwing myself into is grading/lesson plans.  We all know thinking about my students (other children) isn't exactly stress free.

The last thing I'll add today is that even though that stress is there, we are still okay, even though we're broken at the same time.  As Lennon says, "Cookie!"