Behind starburst eyes

Our new version of “normal”

on March 19, 2015

I sit here typing while he sleeps beside me. We’re at home now, but the watching never truly stops. I’ve been watching him so carefully for 3 days now. Watching his chest expand and contract with every breathe. Watching to see if there’s still a tug at his trachea from struggling to breathe. Watching as he cries in fear for me while I hold him during treatments. Watching him wake startled and shake as different alarms and announcements pull him from sleep time and time again. But I also watch as he sings the Spiderman theme song with the amazing nurse and paramedics. And I watch him smile at me and tell me he loves it in the hospital because he gets to have me all to himself, and be so excited to see his dad, nana, siblings, auntie and uncle (even though his siblings means he has to “share” me again lol)

The doctors say he has Asthma. It’s what filled his right lung with striations of fluid and made it so difficult for him to breathe. He’s to be on inhalers every day for the next 6 weeks at least, and another inhaler whenever he’s struggling to breathe. We have an “action plan” for if/when he gets an attack again, including if it’s like this one or worse. We now have a doctor that will be following him until adulthood specifically for his Asthma. And I have one more thing to watch him for, one more medicine to carry, one more fear in my heart.

When I’ve heard the word Asthma before I didn’t realize it was a big deal, I didn’t know you could die from an attack. I blame my mother for that lol. She has asthma and as a little girl she told me all sorts of things so I wouldn’t worry. Like that if she was really sick from it the worst that could happen is she’d pass out and her lungs would “re-start” themselves. She told me that as long as she had an inhaler she’d never get really bad. As I grew older I never thought to question the comforting things she’d told me. I never thought to look deeper or to even examine what she’d told me with my own knowledge of anatomy and physiology. Instead I held onto her answers because it meant she was always going to be okay. That was and to be truthful still is something I desperately need to believe in. Only now I need to know the truth about asthma. I need to know that it can be fatal, and it can be difficult to control. It can also be managed, and (for some children at least) can be something that is outgrown eventually.

The morning he was admitted to the hospital I had already used ventolin and it hadn’t helped him at all. His attacks may not always be able to be controlled by simply using an inhaler. We might be visiting the pediatrics ward again. So with this knowledge I am altering our version of normal. It now includes inhalers, actions plans, respiratory therapists, an additional doctor for his healthcare team and possibly an O2 saturation monitor for at home to check his levels if I see him struggling to assess better if we should drive him to the hospital or if we need to call for an ambulance instead. But it will still include trips to the library and Airzone, unbirthday parties and fakey doodle restaurant nights. It will still include swimming lessons and songs, visits with friends and random adventures. Through it all, as always it will include love and an ever watchful momma who’s added one more thing to always watch for.

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