Hi little boy,

I remember the first time I held you in my arms. You were only 5 months old and you were hooked up to all these machines, lots of beeps and boops, but your eyes were bright and we stared at each other quietly. You’ve always had expressive hands, a sassy left hand, a fist that you would stare out for hours, even now, sometimes we catch you twiddling your thumbs at dinner, as if we’re boring you.

I remember the first time I tried to give you a bottle, you coughed, and I burst into tears, probably giving the speech therapist who was coaching me some doubts about whether I was cut out for this.

Those were my first tears over you and I have cried many, many times since then.

Dr Seuss could write a book about how many times I’ve cried.

She’s cried in the hall, the office, the car

In front of doctors, aides, and the man from afar,

She’s cried while you’re sleeping and crawling and eating,

She’s cried when it’s sunny or rainy or sleeting.

Oh, the places she’s cried, if you counted them up,

It’d be like a million. That’s alot!

yup

When you left the NICU, after us having slept there for a full 48 hours and me basically moving in and walking around in my underwear, you greeted the light and wind and cold that met you when the elevator doors opened with vomit and screaming and your machines going nuts. And I cried.

I spent the first six weeks of you being at home, crying, trying to learn the ropes of having a baby on oxygen.

I’ve cried at every single one of your hospital stays. I cried when they told us that you had to sleep on a CPAP machine.

I remember the dinner party we hosted shortly after that wretched, screeching machine came home. You had fallen asleep and I went back to put you on it and couldn’t figure out the headgear and ended up having a meltdown in front of old family friends.

I cried when you had seizures before. I cried when the high dose of steroids they gave you for 8 weeks turned you into a screaming Hulk baby who would only eat when brother played his trombone (“Play louder, The Kid. I don’t care if you’re tired. We’re only halfway through this bowl of food!”). 

I’ve cried about your slow developmental progress.  I cried when your occupational therapist showed me you could sit on your own for the first time (at two years old). Not all the tears are sad.

I’ve cried from lack of sleep and from lack of control.

Most of my blogs about you are when I’m at my wits end. Like this one or this one or this one.

Your health has instigated so many crises that have brought me to the end of myself. 

There’s no way we can do this! This is impossible. I’m being crushed under the weight of all of this. We cannot possibly have all the physical and emotional energy that we need to deal with this. This is it. Goodbye, cruel world! 

And yet, here we are.

Last week, you got another diagnosis. A scary one- Lennox-Gastaut Syndrome, which is a very rare and tricky-to-treat form of epilepsy. I had a panic attack and then promptly numbed all of my emotions.

Until today when I made the grave mistake of googling it and now I’ve been crying for 8 hours straight. The prognosis is grim. When I think about the quality of our life that awaits us- yours and ours- I just feel an impending sense of doom, like our car is stuck on railroad tracks and the doors won’t unlock and all we can do is watch this looming locomotive chug towards us.

I wrote this Letter to Scared Parents back in December of 2012 and god, part of me wants to reach back in time and smack myself. IT’S NOT SO EASY, YOU IDIOT.

No, none of this is easy, but to be fair, we were never promised easy.

I know that I get to feel how I feel. And how I feel right now is fucking terrified. And I might feel that way for a long time. And I might feel that way some days and feel perfectly fine others. I know that.

I asked a friend today who’s in a similar locked-car-on-a-railroad-track kind of situation where her hope is and she said, “I feel that {the train’s a-coming} way too. But I know that a hard complicated life can also be very rich. I can hold it in two hands.”

Well, good grief. The wisdom in that is enough to make me want to retreat to a cave and meditate on it for the next year.

Here’s the God’s honest truth, dude. Your health issues sometimes make me want to scream and cry and lose my shit.

Maybe not sometimes, maybe all the times.

But

You have enriched our life so much. Where would we be without your weird faces to break the tension when I’m fighting with your brother? Who would share food with the dog and rub macaroni in her fur? Who would give us such tight hugs that, for a moment, our bodies feel as if they are one?

Who would teach me that I’m stronger and more resilient than I ever dreamed possible?

Who would teach me to marvel at the small things, the sitting-ups and the drinking-out-of-sippy-cups?

Who would teach me that I don’t really have control over anything, even though I love pretending like I do?

You have given me good gifts, even in the midst of heartbreak and chaos and crying. There is no reason why that should change now.

We have done hard things before and we will do them again.

We’re still here.

I love you more than you will ever probably be able to comprehend.

-Your mama