J-Bear and Me

learning to navigate the world, j-bear style

The Unbearable What-Ifs

So, to those catching up with the story of our intrepid hero J, he has had staring spells since he was just the smallest of guys. This isn’t just “oh he’s off daydreaming”, this is he’s asleep with his eyes open and completely checked out. The light is gone from his gaze when it happens, it’s really disconcerting. They never last longer than maybe 30 seconds but still… They’re a thing. They don’t happen daily but when they do, they startle the dickens out of me.

His developmental pediatrician suggested we follow-up on these by getting a 24 hour EEG. This means hooking little man up to many leads and being in patient. So that’s what we started out with at noon on Monday. It is now almost 8pm on Tuesday and we are finally home. We got a sort of episode on the study and it showed nothing overtly abnormal, so they cut us loose. The full study will be read over the coming weeks because, hello, that’s a lot of data.

Anyway, as you sit in a hospital room watching a machine take measurements of things you have nothing but the most vague comprehension of, your brain goes strange places. What if he did have a seizure disorder? What would this mean to our lives? What’s does this mean for his future? What if, what if, what if…

But no matter what, it all came back to the same thing: I was still going home with my sweet boy. Overall, my son has rude good health on his side. If he has a seizure disorder of any shape, I’d still have my son. I’d still have my little gregarious bear and we’d face whatever was handed us head on.

I saw a poem entitled “I’d Still Choose You” that was written about parents of special needs kids and their children and gosh… Maybe it makes me a hateful person but I barely skimmed the poem before getting so angry I closed the screen. There is no magnanimous decision involved in being a parent to the child you were given. This is a relationship you enter into blindly. There’s no kicking the tires, there’s no checking the teeth, there’s no Kid-fax before you receive your son or daughter, even via adoption no matter how many things you go through – You’re either which way entering into a relationship with another human being, and we’re a bunch of constantly changing, constantly evolving creatures. I signed on to love the child I carried whatever that may call for. I entered into that whole heartedly, and continue to be whole heartedly in that mindset to this day.

I signed up for Jacob. I did not know what that entirely meant at the time, but I signed up as enthusiastically as a child goes after sweets. I get no major awards for this, I get no special head pats from God or the universe… I get him.

There’s nothing in this world better than that. Anyone who has seen his humor, his sweetness and just the light he exudes as he wanders through this world can plainly see… That’s a pretty awesome gift. I’m pretty lucky, really. Even when it’s hard.

If you steal pictures like this you aren't nice

We make long days look fun, right?

3 Comments

  1. Another incredibly true observation… . But, as the mother and wife of cancer patients, I can truly emphasize with the incredible anxiety that goes with all the tests and all the waiting for results. The only advice I can give is to try (the operative word here) not to imagine “bad” scenarios – the mind is a dangerous thing, and, as you know it can bring you to some scary places. Just trust that whatever the results…. it will BE OK…..you’ve already got what you need …..LOVE!

    • Cancer is such a … ugh. I had no idea your husband was also dealing with it 🙁 Yeah I am an utter pro at worst case scenario imagining. It’s taken a lot of years and now medication too to be able to go “alright, that’s the worst thing, let’s have an awareness of it but focus on where we are today”. The person for whom J is named taught me so, so many of these great lessons in capturing today and having faith. I don’t speak of her (and won’t mention her in detail) because she deserves her privacy but man… Let’s just say she was wise beyond her years and then some. 🙂 Faith and love, it’s all we’ve got some days and isn’t it a wonder how when you take a deep breath and look around, it really is enough!

  2. Wow, I am so impressed with your reflections. It is so good, and powerful, to focus on the positives. Hang in there as you wait for the results. The fact that they let you go right away is a good sign.

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