The toll it all takes

Yesterday was almost the day I lost it. I felt it rising from my gut, felt the
squeezing in my throat, the tingling in my jaw, the burning in each eye – but I fought it. Like I’ve been fighting it for 19 months. And, of course, I won.

It will happen, though. I will fall apart briefly, dramatically, and (hopefully) in private. Because I am sad. I am exhausted. I am only one small person beneath a very large, very frightening thumb.

It has occurred to me that I am no longer a person. A short time ago I was a DJ in a nightclub, spinning music and pouring drinks and getting paid to be the life of the party. While I was still a very private person – my career offered a huge social outlet and I spent time with other grown-ups and enjoyed every moment of my job.

I had “friends.” Most of which were customers or coworkers. Now the people who sought my friendship then are nowhere to be found. People I considered “best friends”. The people who I thought mattered. The people I trusted. I am bitter, hurt, and disappointed. For as many hearts as I toyed with – I genuinely cared for my friends and NEVER imagined I would be forgotten in my very first time of obvious need.

But I am a full-time caregiver as well as a mother now. I am no longer able to offer the fun and entertainment I once did. I had no idea the desire to maintain a friendship ended there. This is all building inside like a volcano – all attributing to my near melt-down. You see…

Yesterday, Poppy was supposed to go in for a sedated (general anesthesia = scary) MRI of her head to check for hydrocephalus, ICP, Chiari malformation, and agenesis of the corpus collossum, and any other malformations that could be contributing to her central apnea. All very intimidating. Given the string of bad news appointments lately, the MRI and its potential findings had been troubling me since the moment I scheduled it. But Poppy came down with a respiratory infection… So I had to cancel it. A slight relief smothered in prolonged dread and nausea.

Going under general anesthesia is never a small risk for my little. Her airways are tiny, her heart in need of repair, and all of the unknown causes of other unknown things about the ins and outs of my tiniest treasure.

Recently, Poppy’s ENT said he would like to put a tracheostomy “on the table.” I’m not even ready to acknowledge it. I know a large percentage of children with Apert Syndrome have trachs. I’ve always known it was out there, somewhere – but it is unsettling, and panic-inducing to even think of it at this stage. I almost wish she had been trached from the beginning. Adjusting to it now seems impossible and unfair.

Since starting oxygen while sleeping – new hurdles have popped up. First, how in the world do I keep the nasal cannula on her, let alone on correctly?! Toddlers do NOT appreciate tubes around their faces and up their tiny noses. Ever. I’m also beginning to wonder how much more per month for electricity I’ll be handing over with this beast running 16 hours a day.

I’ve saved the best for last:) This past weekend we went camping! For two whole nights. I am so grateful for my friend, Traci, who orchestrates these shenanigans that I would never have the time or whim to bring to fruition. Poppy LOVED camping. Kieran had a blast, and I even found myself relaxing and enjoying the gorgeous sights and sounds of Trillium Lake. This small getaway has given me hope for a few normal things in life.

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5 thoughts on “The toll it all takes

  1. Noel, your strength and endurance are amazing. I watch, read, see pictures, and follow Poppy’s growth, your trials and triumphs as an outsider looking in. Traci is a wonderful soul, she has been all of her life. In the meantime, never give up. If there is anything I can do, feel free to message me. I wish I had more words of wisdom, and the heartache over lost friends is a tough one…. BUT… Please know that there are those on the sidelines rooting for you and your babies and who will try to help as we can. Best wishes, and hoping for some peace for you. Kelly

  2. Everytime I stop by for updates on Poppy, I read about you getting stronger and stronger. Leaving the superficial friends behind means you are making more room for meaningful friends ahead. I’m inspired by the fierce love you have and your unwillingness to buckle under this pressure. It’s clear how grateful you are to have them and I hope you can see how lucky they are to have you.

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