So much love

his roar is silenced
but his memory is loud
sweet, gentle lion

When it occurred to me one day that our family was a member of the Special Needs Club, I wanted to deny it. I think I might have even blogged about denying it. It wasn't a club I wanted to be part of. I didn't want to connect with other special needs parents. I didn't want to connect with other trach parents. I didn't want to know that NICUs and PICUs existed. I wanted to close my eyes and go back to where I had been before. Ignorant. I didn't want to know that children are sick and hurt. I didn't want to know babies die from cancer or suffocate from occluded trachs. I wanted to seclude my family in a tight bubble and wait for it all to go away. For things to go back to normal. For things to be OK again.

And then I realized that it didn't matter how much I denied it. It didn't matter how much I tried to make true things untrue. These were the facts: my son had newly diagnosed special needs. I had questions about children with special needs, how to navigate complicated systems of hospitals and diagnoses and trauma.

I had – and still have – an immense support system, but I needed to be part of the club. I needed to talk to people who have been there. Done that.

So when I stepped tentatively into the special needs club, it was purely for selfish reasons. I needed help. I needed advice. I needed people who could say things didn't have to be normal again because the new normal was OK, too.

I knew that when I joined the club I would make friends and fall in love with their children. I would follow their stories and worry for them and try to offer advice and solace when I could.

Again, purely selfishly, I was afraid of this. I was afraid to make friends and to get to know their kids. I was afraid of seeing others in pain like we were in pain – but even worse, I was afraid of seeing others in even more difficult circumstances. I was very afraid.

But the divide was broached. I met wonderful, selfless, hilarious people. Most of them I only know online. They, and their children, have shown me what it really means to be strong and to fight and to love and to win battles declared lost years ago.

Very rarely do I get a chance to meet these people in person, because the Special Needs club is often a club where the fragility of the kids requires separation from others.

And yet, I met my friend Michelle. In person. And through Michelle I met her son, Lev. A lion of a kid. And through Lev, I learned to stop being such a selfish asshole. Getting close to families of sick children is not a burden like I feared, it is a gift. Knowing little boys like Lev opens your heart to dizzying depths. Seeing their strength, the strength of their families, is something that everyone should be so lucky to experience.

The pettiness of the world slips away when you know a boy like Lev. Each breath, each step, each smile, is a fucking battle of persistence and stamina and sheer force of will. Every grin amidst tubes and wires and doctors is a middle finger to circumstance.

I conquer you, that smile says. I am a lion and you are a mouse, medical establishment. I am a force not easily contained. I roar in your face and show you who's in control. I drink your milkshake.

This morning I got a message that sweet, strong, persistent, amazing, miraculous Lev has moved on from this world of pain and struggle. And as I watch a friend's world shatter into infinite pieces, I want to offer solace. I want to offer a message that Lev changed me. He changed everyone who knew him. He was in this world for a terribly short time, but in that short time he made his mark. An indelible mark in the hearts of so, so many.

Sweet Michelle and Jason and Joss.

Sweet lion, Lev.

Even though you are silent, your roar still echoes. It touches everyone.

And we roar for you. Because of you. With you.

Sweet lion, Lev. Sweet boy.

Thank you.

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4 thoughts on “So much love

  1. Beautiful post, Kari. My husband and I quietly joined a support group/chatboard on behalf of our son, who cannot yet type (in English, anyway). We held out for a long time, hoping that we didn’t need to join that club. But now we realize that my son’s health issues are going to be a part of our lives for a long time… or forever.
    Our next step will be to introduce Lil L and participate. And that step is coming sooner than we’d hoped.
    At the best of times, I see that I’m not shrinking from my duties as Lil L’s mom. At the best of times, I truly recognize the Normal moments and appreciate them instead of taking them for granted. And I relish the great moments. Now, more than ever, I repeat Viv Savage’s (of Spinal Tap fame) creed: “Have… a good time… all the time.”
    At the lowest times, I wonder why we have to be cognizant of the fragility of life. I doubt that anyone’s really ready for that.
    So, here’s to Lev, the lion that lived and loved on Earth and touched many deeply. I wish I could have met him. I could have learned a lot from him.

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  2. Yes. here’s to Lev, and everyone who carries on like him and for him. Thank you for this post, and please convey my sympathy to his family.

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  3. I’ve typed and deleted about three times now- I’m not sure what to say. But I wanted to let you know what a moving tribute that was. It’s almost impossible to find anything to say about the loss of a child that could even express a sliver of it. So, I’ll just say, “thank you” (to you, a wonderful writer) for words that help us understand the beauty and strength of that little boy. He deserves that; his family does too. Much love, thoughts and prayers to Lev’s friends and family

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