It’s my husbands second night shift of his regular 4-day work tour, which means I’m alone in bed trying to fall asleep. I can clearly hear my daughter’s home ventilator from down the hallway, and I just lie awake staring at the bedroom ceiling listening to the sound of her breathing. Tears are streaming down my face – but I stay exactly where I am as I don’t want to embarrass myself in front of the homecare nurse, nor wake my daughter up just so I can cuddle with her to make me feel better. Not since the eve of her tracheostomy surgery has body filled with this intense anger, and ask the myself the ever popular question “why us?”
Just a few hours earlier I had put daughter Evanna to bed, but while disconnecting her from the living room ventilator to carry her up the stairs to her bedroom vent like we do every night – something was triggered, and I felt this overwhelming sense of being a prisoner in my own home.
It had been an abnormal week where I only worked one day out of the house nor had any medical appointments booked, so “cabin fever” was raging its ugly head. Though I thoroughly enjoy the odd lazy day at home with nothing to do but binge on Netflix and play with my daughter – the social butterfly in me likes to get out often and enjoy life whenever I can. I’ve been able to keep myself heavily distracted the last few months with lots of personal plans, but “family fun” pictures posted by Facebook and Instagram friends have been flooding my newsfeeds, and they’ve been little sharp reminders of our current but severe limitations.
When I use to picture what our family life would be like when my husband and I talked about having kids, I envisioned trips to the local pool, summer fun at splash pads, fun little weekend getaways in the mountains, and the casual outing to ice cream shops while exploring downtown – things considered everyday normal occurrences for the average family. I couldn’t wait to receive our invitation to local mom + baby playdates and build some bonds with other mamas as we compare notes and share tips with one another. I never imagined that something so simple would be significantly impacted by the shear fact that it takes no less than TWO people to pack our daughter up, walk out of the house and load her into our vehicle.
EVERY . SINGLE . MOMENT. that our daughter spends outside our home is measured in battery life of our home ventilator + suction machine – if we have access to electrical outlet, and how many oxygen tanks we need to pack. On average, we currently go through a LARGE portable oxygen tank within 3-4 hours, and for safety purposes we always pack an extra 2 tanks in our trunk for emergency purposes only (ie. car accidently breaking down, get stuck in traffic, etc). So a simple afternoon out of the house means we are packing a total 4-5 large oxygen tanks, along with the rest of our medical equipment into our little SUV in order to keep our child alive and healthy. This doesn’t include our emergency trach kit, an emergency bagger in the very unlikely chance we experience mechanical failure of the vent, feeding pump and formula (which she receives every 4 hours), soothers, regular toddler toys and the almighty tablet (which we somewhat consider medically necessary, as it’s a major tool we can use to calm our daughter down and bring her out of an oxygen desaturation).
I distinctly remember learning about the term “quality of life” in high school, but never did I expect to actually experience a reality where obtaining it was something we would have to work really hard to achieve. While our quality of life has indeed improved since from our year long hospital admission, our life is still greatly controlled by life saving machines and the restrictions they place on even the most mundane tasks. There are moments that terms like “house bound” and “house arrest” feel so very real, and I have absolutely felt trapped by our very situation. I often mourn the idea that we could never go on a family vacation due to oxygen alone, and an entire day trip would mean packing a minimum 10 large oxygen tanks.
I’ve experienced countless moments where I wonder if and when this situation (ie. being “housebound”) will one day actually impact my medically fragile child, and worry about it on a constant basis. The months continue to pass us by, and things have continued to remain unchanged – so my anxiety about it and her quality of life continues to build. Right now she is still so blissfully unaware of everything and is the happiest little girl I know…. I just pray that we can either get to a point that we can either sprint off the home ventilator or wean off oxygen before she realizes these intense limitations she has just in order to LIVE and breathe on a daily basis.
Something will eventually give. I guess I’m just afraid of what that “something” will be. The possibilities range from finally able to make decreases and sprinting off the ventilator, weaning oxygen, to even her walking (meaning I can easily carry her vent and oxygen by myself and no longer require having to count on someone just so we can venture outside our home) – to the complete opposite of Evanna getting increasingly sick and we lose her. It overwhelmingly angers me that with the reality of her prognoses, we currently can’t “live life to the fullest”, and emotions like guilt + sadness live like a large lump in my throat more often than I would like. I grow both impatient but increasingly afraid of the future. I want to press both the “fast forward” and “pause” button at the same time, and just wish someone could prepare me for what’s to come – a crystal ball would be really nice right about now.
I know – motherhood isn’t easy, but this particular “season” has been very hard to say the least, and I earnestly hope that we will be blessed moving forward and strengthened by everything we’ve had to endure. Our limitations and hardships are beyond exhausting (both emotionally + mentally), and I both crave and yearn for the normalcy that everyone around me gets to live. For the most part, we carry on day-to-day without giving it too much thought, but the days I do ponder about it, it comes at me like a bag of bricks and breaks me down a little. All I can do is try and pick up the pieces, glue myself back together and be the best mother I can be to the most deserving girl in the world – my daughter. I won’t give up and we will continue to press forward to the best of our ability – just as we’ve always done before.