My How the Fears Change...

Yes. You read that correctly, fears. Sure, the years change and that’s inevitable. But as the years change, so have our fears. 

Four years ago, we brought our 4 lb 10 oz boy home from the hospital. Our fears were huge that day, as we were going from 24/7 observation, with medical professionals on watch and ready to intervene if need be, to home. Alone. With a heart monitor, which we both loved and hated. 

{Photo of a tiny Wyatt, in a car seat that looks ten sizes too big, with smiling parents on either side.}

The next year, we had just brought our guy home a few weeks before with a feeding tube. New fears surfaced with navigating the feeding tube world, fears about his potential sleep apnea, which was being treated with O2. So our guy has a few more medical devices. I think we might have wished that year we were just dealing with a heart monitor. Oh. We also added a hearing aid that year, too. (Thank goodness for photos, or I likely wouldn’t remember the details...) 

{Photo of Wyatt, in black and white, with a smirk on his face. His face has tiger stickers being used to hold his oxygen nasal cannula in place. He’s wearing a headband hearing aid.}

The following year, 2017, was much of a blur. That’s the year we spent a whole lot of time at the Hop. Our lives revolved around ER visits, blue spells, hospital trips, ICU stays, and specialist appointments. Oh and lots of tests. That year, we feared a trach was on the horizon. I remember New Year’s Eve of that year spending lots of time wishing for no trach and some “normalcy” in our lives. (Lori of now laughs about that thought... normalcy. Ha! Hadn’t Wyatt already proven that idea to be a farce?!)

{Photo of Wyatt, in black and white, giggling while his mom steals a kiss}

The fears last year seem to be much of a blur, as we were riding the high of Wyatt learning to sit independently. We had watched our guy grow even more, learn some new skills, spend some time in the hospital, and I think a lot of laughs along the way. That year, we remained in fear of the trach, but we also feared him starting school. Our medical team was very concerned about him being exposed to so many germs and we lived in fear of viral infections, knowing they could put us in the hospital. 

This year, the fears seem eerily different. They stem from a more developmental standpoint. The fears about his medical concerns are still very real, as his seizures haven’t been completely solved and he constantly changes the game on us, but there’s also a confidence, almost a comfort of knowing we can tackle things. 

Today as I’m typing this (maybe through tear stained eyes, I’ll never tell...), the fears are about his growing independence. As he’s climbing up the foam stairs and laughing and clapping when he reaches the couch, I fear him falling. As he pulls the dishes out of my cupboards, I fear things breaking (and having to drill child locks into my brand new cupboards!) on him. I fear as he grows more independent, he will learn his limitations. Which is heart breaking as a mom. One day he will know he’s different. And while we as parents will do whatever it takes to keep working towards full independence, what if he tires of the hard work? 

Fear is a funny beast. It’s consuming, it’s empowering. It’s real. 

Here’s to an amazing and incredible 2020. The last decade has been amazing for our family and we know the next one will be just as fantastic (with a few less hospital visits, please!). 

{video of Wyatt chatting away}