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Trach t-shirt c/o Stoma Stoma  

Trach t-shirt c/o Stoma Stoma  

I am still in the diaper changing season of my life. Thankfully, that season will be ending soon, but here I am after nine years, wiping butts and polluting the earth, one Pamper at a time. And, I'm not proud of polluting, but I also know I'm not warrior enough to do cloth diapers right now. I have a sister who has used cloth diapers for nearly three kids in three years and she's just waaaaay more like Jesus than I am and it's fine. She's just a dang warrior like that. 

Recently, I was changing Avery’s diaper and dodging roundhouse kicks to the face when she burst out into the biggest grin (nothing says Thank you for keeping me clean and dry like assault). I spotted a shiny, white speck and rushed to investigate, but stopped myself just in time, because, hello, you were just changing her diaperSo, I paused, scrubbed my digits and then peeled her lips back to inspect this new pearly, mouth accessory.  

“Ah! A new tooth! You did it! You grew a new tooth!” I squealed with delight, clapping my hands like a kid who has just been handed an unlocked IPhone with Kids YouTube capabilities.  

If I never hear “Johnny, Johnny, Yes, Papa”, I will not be sad... in fact, I will be FREAKING THRILLED. Turns out, average kids and special needs kids love to listen to Johnny Johnny and Daddy Shark Do Do Do Do Do Do equally as much. So, having a special needs baby has not spared me from this torture. Life is really, really not fair. 

Back to Avery’s mouth... Did I seriously just cheer about teething? She grew a tooth, not a 3D heart. Calm down, woman.

But what you don’t know, is that because of her craniofacial syndrome,  growing teeth is really hard. Avery has to fit a normal amount of teeth into a narrow, profoundly disfunctional, nearly clefted space. AND she has to grow unusually shaped teeth at that. 

Was I just complainig about Kids YouTube as the reason life isn’t fair? I take it back. I take it all back. Teething with a cranio syndrome is actually not fair. 

So, teeth are a big deal around here, but they haven’t always been. I’m fairly positive I didn’t scream and cheer for all the other teeth that have erupted under my care. I’m pretty sure I thought, Oh, that’s why you’ve been an absolute jerk to me for the last five days. Congrats. Now get your life together. There was no clapping, no fanfare for Lolly’s teeth or Macson’s teeth - just expectation. I expected them to develop naturally. I expected them to be normal, so I did not cheer. 

And as I inspected Avery’s new tooth, I thought, OMG, you poor dear. How sad that you have to be exited about something so LAME. And then, OMG, how amazing that you’re excited about something so lame. What if people lived each day squealing and cheering for all the things they just expect? What if we all stopped taking every good and normal and average thing for granted and started cheering about teeth and having the money to buy diapers and a house in which to wipe butts and inspect teeth? You go ahead and squeal, girl. Be DELIGHTED by all the little moments.  

Being Avery’s mom has been a gift for so many reasons, not the least of which has been my newfound ability to be delighted by teeth. It’s my new appreciation for every bite of food that she swallows that puts us one step closer to making her g-tube obsolete. It’s the fact that each new word she says makes my heart sing and every new gross motor skill mastered makes me weep with happiness. 

And life as a special needs mom is really freaking hard, but it’s also equally BEAUTIFUL and THRILLING and MAGNIFICANT, because three years ago, I wouldn’t have found so much joy in all these little things that are all actually big things if we take a closer look. I would have missed the opportunity to be so grateful, so moved by the mundane.  

So, I guess what I’m saying is be open to being moved this week. Be open to being moved by how deftly your kids’ fingers fly across that IPad screen - ten perfect fingers with a perfect brain that controls them. Be moved by how lucky we are to have snacks to feed our babies, even if they crumble 80% of those snack on the floors. Marvel at their teeth that know how to chew and lungs that easily inhale and exhale. 

Be moved that your adult child is alive to get themselves into a mess and cry with joy that they still call YOU to hold them when their world is crumbling. That is so incredibly special. 

Be excited. Be grateful. Squeal with delight, if you can. And if you can't, that's okay too. Sometimes we're too tired to be anything but hanging on by the skin of our teeth, waiting for the day to be over and the rest of us are here for you. But when you CAN, be moved, sisters, be moved. There is so much beauty happening right under our noses. Don't miss it. 

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