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A day in the life: a medically complex condition that is as unpredictable as the weather

Sunny skies

Being the parent to a medically complex child is as unpredictable as the weather. Meteorologists make all their best predictions and the weather is like “Psych! Instead of being sunny and 75 degrees, there’s a torrential downpour! The joke’s on you!”

Just as I have learned to not depend on weather predictions, I am slowly learning to flow with the unpredictability of our life. I now make plans expecting that they may be completely turned on their head.

It reminds me of a day a few months ago. Benjamin, my disabled son, was at his dad’s house for his parenting time. I had a million plans for a productive and also relaxing day. I started the day by performing a minor miracle: I got completely ready. I mean shower, makeup, hair and cute outfit! I felt like Superwoman.

Once ready I headed to a coffee shop to start checking things off my list. I was sharing with my social media friends about how getting ready was really helping my mental attitude. It is my hype time and puts me in a great mental space to face the day. I was feeling so great about my new revelation and how it was helping me.

The storm

A few short minutes after I ended my Instagram stories my phone rang. The nurse from Benjamin’s pre-school was on the other line. She told me Benjamin had a seizure, he was really out of sorts and to get there as soon as possible. My heart sank. My positive energy instantly turned to anxiety, tears and low-key panic. I called the co-parents. I internally spiralled about how fragile I must be if one phone call changed my entire mood. One change in my environment and everything inside of me flipped.

Why wasn’t I better able to adjust when things go wrong. I should be better at this, right?

With all this swirling around in my head, I turned my car around and started driving towards Benjamin’s pre-school. Again, today is not my parenting day, but thankfully I have the type of co-parenting relationship where we work together to do the absolute best for Benjamin. I was able to get there the fastest, so I was on my way. I was grateful for the 15 minutes it took me to get to the campus. Well, that is not completely true. A huge part of me wanted to be there as soon as I got the phone call. Teleportation please! Then another, much smaller, part of me was thankful I had the time to talk myself through the chaos swirling around inside of me.

I tried to bring my dysregulated nervous system to a more peaceful state so that I could be what Benjamin needed. He does not need my anxiety and my fear. He needs a steady heart and calm body. I wholeheartedly believe that he can feel the energy I come into the room with. When he is struggling all I want him to feel is completely safe and loved.

I walked into the classroom, wrapped my sweet boy in my arms and sat with him on the floor as he slept. This is the moment. I hope any anxiety inside of him releases as he nestles into me. I feel my anxiety leaving me and I hope it is doing the same for him. I live to be his safe space in moments like these. We sat there for a few minutes while I talked to the teachers and nurse before we headed to the car.

Ben and I headed to his dad’s house to cuddle and get ready for a video visit with his gastroenterologist. We could have cancelled the appointment, but it was an important conversation that would help us move forward in solving some puzzles with Ben’s health. So Ben sat in my arms while we talked to the doctor and tried to touch the screen every chance he got.

After the appointment and chatting with Benjamin’s (bonus) mom, Heather, I had to peel myself away from Benjamin so that I could leave. Leaving him is never easy and is especially hard when he isn’t feeling good. Walking out the front door when your child is hurting inside feels like pulling two attracted magnets away from each other. Thankfully, I trust his mom and dad so much that it makes leaving easier to do.

The calm after

Now the calm after the storm has arrived. It feels peaceful and eerie at the same time. I am back in my car and I feel like I should pick back up from where I left off. Everything is back to normal. Right? Ben is safe. He is being loved and comforted. There is nothing more for me to do. Right? Not. Right. Now I have to deal with the wreckage.

My body has been in survival mode and now it’s coming down. I start to feel the helplessness and pain of watching my child suffer.

Initially I don’t realise this is happening inside of me and I try to move on with my day. I try to think about what to do now. Except I can’t put any thoughts together. Every decision feels like an impossible one. That’s when it all connects and I know my day is done. There is nothing to accomplish except to grieve the pain of the morning. The tears start to stream down my face now. I scream and wail and wish it didn’t have to be this way. I get it all out and then rest until I feel ready to start again.

Tomorrow is a new day. While I wish there were infinite sunny days ahead, I will always and forever be Benjamin’s safe place through the storm.

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