But I thought we were going to Italy?

Last Friday, Colton had an anaphylactic response to his first exposure to scrambled eggs.  No one has said the exact words, “Your son almost died” but when they review his ER chart from 7/5/2019 at 2:25pm, I hear them say, “His response was quite severe.  I’m very glad you got to the hospital when you did.”

When I thought about my life with Colton, a severe food allergy was not in the plan.  But this is now our daily reality.  And as I’m discovering, we are not alone.

Eventually, I want to share how it all happened so should you ever need to know, you’ll be more equipped to identify and react than I was. But as I start to recall all the details on paper, I freeze.  And so for now, I’ll share this poem that I can’t stop thinking about.

Welcome to Holland, by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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Why I Cried Last Thursday

I haven’t shared much about this part of Colton’s story but the more I do, the more I’m discovering the vast net of support, shared exhaustion and encouragement.

I know I have it generally good.  I am healthy, employed, married (and actually like who I’m married to), and have two beautiful children.  We live in a home we love, have a wide net of friends, and vacations planned.  But that doesn’t mean my life feels easy right now.  Actually, this is probably one of the most difficult seasons I’ve ever experienced.

Colton has all kinds of issues with his mouth: three upper lip ties, a posterior tongue tie,  and a high, extra-sensitive palate which causes hyperactive gag reflex. All of this has resulted in lots of tension in his face (homeboy can suck in his bottom lip so hard you can’t even tell it’s still there).  He’ll be six months old tomorrow and we were just diagnosed a few weeks ago.  Over time, these issues have made eating increasingly more difficult.

addie and colton

We made jokes early on about his disinterest in pacifiers. He did not like the bottles we used effortlessly with Addie (or the 8 different kinds we tried after that). And then came the big, flashing sign — his early weight gain tapered off and by the time he was four months old, he had dropped to the 6th percentile.  Our pediatrician didn’t seem too concerned but my mommy radar was going bonkers.  On my drive home, I called Tyler and then immediately called a lactation consultant.  What is happening?  Why is he waking up so often to eat yet dropping off the charts?

I say this delicately because I know his health is generally outstanding and we are truly grateful for that. But this has been hard. Watching your kid nearly fall off a growth chart when your one job is to help him grow SUCKS.

Before we were properly diagnosed, I tried EVERYTHING to figure this little boy out.  (If you know me even remotely well, this will not surprise you.) I had Addie sleeping through the night at 8 weeks so this felt so confusing, unsettling and if I’m honest, I was pretty frustrated. I read all the blogs, all the books, prayed all the prayers. Maybe he’s too cold at night? Maybe he’s too hot? Let’s unswaddle one arm.  Let’s let him cry.  Maybe if I held him while standing rather than rocking, he’d settle.  What if our bedtime routine isn’t consistent enough? Maybe I should take more fenugreek? Should we move him back into our room? Did we travel too early and push him too hard? Maybe if I buy EVERY SINGLE PACIFIER that Target sells, I’ll find one he likes!

I would get so excited sometimes, thinking I was onto something with a little tweak to how we cared for him which just feels foolish now. I was so desperate. Waking up five times a night for six months was/is not fun but looking at his little limbs and the numbers on the scale is heartbreaking.

We now realize that he was taking less and less milk over time as a result of fatigue and the physical limitations of his mouth composition so in turn, I was producing less and less. And when we learned this, we could have chosen to switch to formula but this kid won’t take more than an ounce or so from a bottle.  So here we are.

After a four week wait, we reached the week of our appointment with a specialist.  This doctor was going to take two hours to fully diagnose the issues at hand and we’d walk out with a plan in place.  THANK GOD.  And then… he got sick.  And because of the number of infants in the clinic’s waiting room, we couldn’t keep our appointment.  Another three weeks until the next opening.

We finally saw the specialist last week and she took two and half hours studying Colton, talking us through her diagnosis and ultimately, we decided to move forward with the first of two recommended procedures.  While it was difficult to watch him be held down, poked and clipped, the moment I cried came when the procedure was over.  His cry… it sounded different.  Rounder, fuller.  My son’s cry had changed because he could actually lift his upper lips the way other babies can.  I lost it.  I think because it gave me hope that he wouldn’t be hungry all the time anymore.

No parent should have to watch their kid be hungry and not have a solution to remedy the problem.  Not Jenn in Seattle.  Not the single mom across the world.  Not the dad next door.  I have a renewed fire in me for feeding children everywhere.

His next procedure is in an hour and I am a mixing pot of feelings.  I’m terrified it won’t make any difference.  I am hopeful that it will.  I am disheartened that we didn’t catch this sooner (yet who can I find fault with?  Myself?  His pediatrician? The multiple wellness consults we got at the hospital when he was first born?  There’s no clear culprit in situations like this.)

I don’t need any pity — that’s not why I’m writing this.  I think I would like you to join me in keeping hope alive though.  Colton is hungry.  We are tired.  I need to be reminded that it’s all going to be okay and we are doing enough.

kissing colton