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Writer's pictureLeanne Menzo

Checking Boxes

Dear Addie,

And there we were, the second day of school and sitting in an after-hours pediatric urgent care waiting room. Not exactly where either of us wanted to be (you more so than me, I’m sure.) There were three other families besides us there that day. The parents all feverishly filling out paperwork, stopping frequently reminding their children of “inside voices”. The kids all squirmed in their seats playing - two of them with iPads and one with an action figure toy. Perspective is always a funny thing and oddly enough I wanted to be in their shoes. I would’ve given anything to have had to remind you of your volume and had you squirming in your seat playing with something. There was nothing of the sort for us. You were hunched over, still, holding a bowl and silent. I was rubbing your back, paying close attention to your breathing, and praying somehow, we were next to be seen. In reality, we waited 15 minutes, but as any parent will tell you - when your child is in distress it feels like an eternity.

This is my least favorite part of our journey. The endless toilet training, diapers, meltdowns, even anger - the most helpless I ever feel is when you’re sick. Luckily, it’s not often, but when it happens it takes you out. There is never a “Mommy I don’t feel good” or “Mommy my tummy hurts” not even close. It’s a game of deciphering behaviors and observation. For kids like you that don’t feel pain in the same way and struggle to communicate, it can be scary for all involved. And just like what has brought us to where we were on this day, the behaviors often have a 50/50 shot at being something else. I’m not going to lie, with a lurking potentially life-threatening virus affecting more and more of our youth in this area, hospitals at full capacity, and having suffered the loss of family to its evil already – my mind was tiptoeing into some dark places.

Now before I begin the rest of this adventure, I like to say I fully respect, appreciate and value the opinions and help of all medical professionals from doctors to nurses, but as the old saying goes…If you’ve met one person with autism, you’ve done just that, “one” person with autism. The disorder is a spectrum meaning no one is the same and there are varying degrees of severity. So, if you state your child has autism, all you can prepare for is that this is somehow going to be different from a typical appointment. In your situation they are about to find out there is going to be a tremendous lack of communication and you are not in the mood to be touched. But I digress...

Having finally made it back to a room, the nurse starts to what I call “check the boxes.” Your temp was high, your heart rate was faster than normal, but your oxygen intake was good. One out of three Ad…

With a brief history of events from the last few weeks including where we’ve been, and who we’ve seen – common covid protocol these days, and my parental observations of changing behavior, we settled in to wait for the doctor. Having zero energy to climb up on the exam table, you curled up on the bench and fell asleep. It didn’t take long before I noticed you were shivering and now had goosebumps all over your arms – the chills were setting in. Not being as prepared as maybe I should’ve been, with a sweatshirt and also not being at a hospital (where they can magically produce those just out of the dryer feeling blankets), I peeked my head out of the door and asked the nurses if there was anything I could cover you up with. After rummaging through the cabinets, a few exam gowns were gonna have to work for now. You seemingly welcomed the makeshift paper blanket and went back to sleep. You looked every ounce of miserable.


Before too long the doctor had come in and it was time to get a closer look and checking off some more boxes. She listened to your breathing with the stethoscope and you even took deep breaths when asked – honestly something I had never seen you do before. All sounded good, so next she wanted to look in your ears. I was thinking ok, this is when it’s going to get interesting, traditionally being a struggle, to say the least. Nope, not today, predictable unpredictable per usual you just sat there and let it happen, ears were good – check.

Next up your throat. Ok, so this is when things took a turn… you wouldn’t open your mouth for anything. Your lips were pressed together so tightly like you were holding a best friends secret and you weren’t about to give it up. She brought out a tongue depressor and successfully snuck it in your mouth, but you just bit down hard on it commencing in a fierce game of tug of war for her to get it back.

Throat box = unchecked.

Next up, feeling the abdomen for any tenderness. Well, here’s the thing with this, you without a doubt hate your belly button touched, not gonna lie it’s a little odd in my opinion, but you always have your entire life. So, when she got close to it you almost threw a Mike Tyson left hook straight for her face leaving yet another box unchecked as it could’ve been something internally wrong or just a sensory belly button issue. Hard to tell, and I’m guessing the doctor at this point was suddenly grateful for her reflexes!

OK, so with a series of checked and unchecked boxes and you sitting there in all your miserableness, it was time to administer Tylenol for your fever (which they allowed me to do because I give you liquid meds daily and you trust me), and a flurry of tests (with my approval) to rule out anything serious.

First up, a COVID test. A test I hope and pray we never have to do again, a strep test – also not a test I want to repeat, wrapping up with a blood test checking white blood count for anything internally suspicious. Taking 4 people total to successfully complete any and all of these tests – all commenting on just how strong you were.

Check please.

Mentally, physically and emotionally exhausted we headed home to wait for the results.

The longest two days of our lives and your test results all came back negative. This was just a (wicked) stomach virus and rest, Tylenol, rest, hydration, and did I say rest - were key to letting this run its course. Once again, some unusual perspective kicked in and suddenly, I was relieved and oddly happy, not that you were sick, but for this illness just being a stomach virus when it could’ve potentially been so much worse.

You went from your bed to our craft room couch settling into the same position every day for 6 days straight. 6 days Ad! 6 whole days! You went from eating dinner on Monday night to not eating again until Sunday morning. I was counting wet diapers measuring hydration like I did when you were a newborn. Your fever finally broke Thursday night and then a full-body rash followed. Something that looked like every ounce of itchy madness didn’t seem to be affecting you in that way, with you still just primarily not being hungry or thirsty and just extremely fatigued. Saturday night I was convinced that if you weren’t any better in the morning an ER visit just may be necessary if anything to push fluids - dehydration was starting to become a big worry for us now. In full disclosure I went to bed Saturday night preparing myself for what I was convinced was to be an inevitable hospital visit the following day - literally our last resort of where we wanted to be with or without a pandemic.

Sunday morning came and you slept in until about 10:30. Came downstairs and didn’t resort to our usual craft room couch position, but sat on the living room couch instead with the rest of the family. Daddy asked if you wanted a waffle and you obliged, in a weak, soft voice “a waffle yeah.” There was no rash or fever, you were hungry, keeping food down, and actually smiling. It was all over. It was finally done.


Addie my heart broke for you this week and I’m sorry I couldn’t make it better faster for you, but we are so thankful that you fought through this and are all smiles again.

It’s over baby girl and we are all breathing a little bit easier now.

Love,

Mom

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