This post will explore some unique challenges faced by parents of trisomy children. The subtext is "the difference between being the parent of a trisomy child, and being the parent of a healthy child".
Being the parent of any child is, without a doubt - and without exception - an incredibly challenging, time intensive and rewarding experience. Children bring such joy to our lives as parents, but they also require more attention and more mental and emotional energy than we're often able to give whilst maintaining a reasonable degree of sanity. In these ways, being the parent of a trisomy child, and being the parent of a healthy child are not all that dissimilar. There are, however, some important differences that make the experience of being a trisomy parent quite unique, quite different, and quite a lot more challenging in some key ways. This post is about 2 of those differences.
Carer first, parent second
One of my first thoughts upon getting my son home from hospital after his 3 month stay in the NICU was how much my living room now resembled the hospital ward from which he had just come. With medical devices and supplies strewn about the place, and the sound of my son’s breathing being regulated by a ventilator, I stood there feeling much more like a nurse, than a father. This feeling, whilst waning from time to time, would persist to some degree for my son’s entire life to date. The fact is that if I were to count up all of the interactions that I had, and still have, with my son on a daily basis, classifying each one as either medical in nature, or parental in nature, the former would be on top in every single instance.
From suctioning his tracheostomy tube, to feeding him via his PEG, to rehabilitation exercises, and diaper changes that require gloves, plastic sheets, and wash cycles with bleach; these tasks often take up a majority of our daily time spent together.
On the other hand, the time that I spend with my daughter is entirely parental. I’ve never had a single medical interaction with her in her entire 10 month life. She has taken perhaps 3 trips to a hospital, 2 of which were vaccinations, and one of which was her own birth. My son, however, has spent 3 months in the ICU and GCU wards, he’s had a tracheotomy, PEG surgery, he’s had open heart surgery and a 1 month stay in hospital for that, he’s had a slew of brain scans, regular heart and lung ultrasounds, at least 50 blood tests, monthly vaccinations for the first year of his life, minor procedures and tests done on his ears, xrays, MRI scans, attends regular physical rehabilitation sessions, and has spent more time in hospital waiting rooms, wards and beds than anybody I’ve ever known in my life, and he’s not even 3 years old.
The fact that I feel like a carer first, and a parent second, is not merely a product of the time I spend interacting with my children. It’s also a product of what I think about, and what I worry about when I look at my children...
Awareness of Mortality
One hopelessly sad part of a trisomy parent’s life, is being constantly reminded of the mortality of our children. This reminder comes in a variety of forms, some of which are perhaps avoidable, and others; an inherent feature of the trisomy life.
One form comes via the trisomy social world. It is an immutable fact that the life expectancy of a trisomy child is much much shorter than that of a healthy child. As a result, the social circle of a trisomy parent is often filled with a combination of parents who still have their children by their sides, and sadly, those who do not. Receiving news of any death is always an unsettling experience; the death of a child being invariably at the most horrendous end of the spectrum. However, as a trisomy parent, this news is not of the death of just any child; it is the death of a child of about the same age, and suffering from exactly the same illness as your child. It is a reminder of the mortality of your child of such potency and ferocity that it is simply impossible to ignore. It is a loud-speaker, blaring at full force, right in your ear, boring it’s way into your soul... screaming, “Your child will die too”.
Another reminder comes in the form of every single possible illness or even behavioural change in a trisomy child. A trisomy parent is conditioned since the birth of their child, to watch them as closely as possible for any sign of illness or decline. I recall when I first brought my son home from the hospital after his birth, his doctor gave us strict instructions to immediately bring him back to the hospital at the earliest sign of a simple cold. They worried THAT much about his fragile life that a mere cold may cause him to lose it. It was a stark warning indeed.
To be honest, not a week goes by in our household when I don’t glance casually at my son and silently wonder whether or not he is still with us. When I don’t touch his skin to make sure it still bears the warmth of life. When I don’t sit still and wait, watching for the rise and fall of his chest to prove to me that he’s still breathing. It doesn’t happen every single day, but it is a regular occurrence, something that my wife and I even joke about from time to time. It’s a brutal reality indeed, that something so grossly unfathomable to most parents, can become such a commonplace thought that we’re able to joke about it. But it is part of our reality; I cannot deny it.
This awareness of mortality has absolutely no place in my relationship with my daughter. A mere cold for her, is just that, a cold. A fever is a fever, and a change in her behaviour is almost always simply growth, normal development, certainly nothing to worry about. My awareness of her mortality is the same as that of my own - an inevitability, and a fact of life, but something that will in all reasonable likelihood not occur for an extremely long time. It sits very much in the background, nowhere near the foreground. It affects nothing in our lives, and plays no role in any decisions we made. It has never once led us to tears, nor brought us to our knees, or kept us frozen awake at night. It breaks my heart to say that the same cannot be said for my son.
However, there is one part of my children’s existences that differs in absolutely no way at all; and that is the love that I feel for them, the value that I place on their well being and happiness, and the high quality of life that I am absolutely committed to providing for them. Both of my children’s lives are worth living. Both deserve the best medical care possible. And both are guaranteed to have the love and support of their parents for as long as they live.
The differences arise in their physical and mental capabilities. They arise in the ways in which their parents care for them and interact with them. The fears and concerns their parents have for them. The parts of their future that hold promise, and the parts that decidedly do not.
But they are equally precious. Equally treasured. And equally loved.
And that, to me, is the true difference between my children; absolutely nothing at all.
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