Where to begin..

He’s almost 2 and a half years old.

Beautifully. Wonderfully. Magically. He’s still here.

Even though two nights ago, he stayed awake for hours past his bedtime, screaming, yelling and cursing at me. (Yes, he swears but not in the conventional sense. It’s more of a gibberish word and a tone that’s absolutely meant to cuss you out.)  After demanding me to lie down beside his crib, he grabbed everything he could get his hands on, lobbed it over the rail and hit me squarely in the face. His aim was uncanny, or totally deliberate, I can’t decide.

And yet I wouldn’t trade it. I wouldn’t ask anyone else to do it for me or wish for it to stop. Because it can stop, so quickly. Despite living in a very carefully constructed bubble of daily denial, I fully realize our mortality. His mortality.

Sometimes, when he is asleep and I get into one of those destructive pensive moods, I forget that he’s still here. That he lives and breathes. It’s so easy to get consumed by the emptiness of having a sick child. The despair and constant grief that comes with living with a dying child.

There was a time I grieved for so much. For the baby I expected, the life I thought I should be living, the childhood I thought my daughter would have, for the future I thought was certain. It took me a long time to just understand that this reality was genuine; this was my life, regardless if I was prepared. I had better adapt and enjoy what small happinesses we have before it’s too late and I find myself drowning in possibilities that are not, and were not real.

I write and I cry in silence and then all of a sudden, he wakes, yelling for me, his dad or his sister, and I am pulled back into an alternate reality where he seems fine, he plays, he talks. He’s delightful and adorable. A tiny tyrant that demands pretzels and Lego but does it with the biggest grin. Besides, it’s not so bad. It’s just a few medications to give every 4 hours; it’s just a few choking spells that make you jump up and run to his side; it’s just the screaming frustration that he has because he can’t move around like his sister. It’s just the cool fingers and toes, the blue lips, the exhaustion from a few steps. But you smile and love and teach and play because you are the mom, and moms don’t stop. Somehow you have to power through it. You can’t stay in bed and cry. You can’t stay lying on the floor while the kids play around you (although you’ve given it an honest effort.) Now there are other people counting on you. If you stop, he stops and that is not an option.

So if I look like I haven’t slept in weeks, had a proper shower in days, shoved anything in my face except coffee and leftover Cheerios, it’s because I most likely haven’t. And I wouldn’t change a thing.

(Except maybe for a new heart. I’d take that.)


One thought on “Where to begin..

  1. Kristina,
    I’ve been there on the floor and I get it. I won’t offer platitudes of “it will be all right.” Hypoplastic left heart syndrome sucks. I hope your son will be able to have surgery to repair it. He’s luck to have been born now, and not 10 or 20 years ago. There is more they can do to afford him a CHD-style healthy life.

    What I do know: The sun will come up every morning and you will have to be up with it. You will put one foot in front of another and do what needs to be done, sometimes with total engagement, sometimes in such haze that when it’s all done, you won’t remember it. (Like, “How did the car get in the garage and the groceries in the fridge? Kind of scary that I can’t remember driving home.”) And you will experience the kind of love that only heart babies give.

    BUT…you MUST take care of yourself. Find a regular yoga class and someone to watch your baby for an hour while you go. Or just go for a walk, alone, every day. (Alone can be while he sleeps in the stroller, you know.) Or put them in the swings at the park and push–swinging meditation. Plan healthy meals full of food you enjoy, and cook them with that gorgeous daughter of yours. If you don’t, you’ll crash and burn and none of you needs that.

    And more unsolicited advice, if you haven’t already, get your state’s Early Intervention people to assess him and get all the services you can. Now. PT, OT, DT, whatever they recommend. The state pays the bill and CHD babies, though no one will tell you this because the research is slow coming, are at risk for learning disabilities more than other kids. The HUGE benefit is also to you–these therapists will come to your house (Yay!! Another adult to talk to) and while you’ll want to observe and participate, the best ones will also say, “Mom, you look beat. Go rest while I do therapy today.” Charlotte’s therapists were my lifeline. They were the only grownups who saw all her potential and didn’t start the conversation by asking about her health. In other words, rather than reminding me that she was sick, they reminded me to envision a life when she might be well.

    Good luck. And keep writing. It helps.

    Liked by 1 person

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