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| My first ever photo of me with my son just a few hours after this birth |
Fortunately, there's another question parents can ask themselves: How much joy can I possibly fit into my child's life before they are taken from me? This question is the one you want to be asking yourself on a daily basis, as the parent of a trisomy child. The other question is the one that just sits in the background at all times. It's the one you know deep in your heart, in the back of your mind; the one that slowly tears you apart bit by bit, ripping tiny pieces out of you, forcing the tears from your eyes at random times throughout the week; the question you'll want more than anything else to ignore, to forget, to be given a happy answer to; the one that you'll always know you did your best to answer sensibly, in his/her best interest, with no motivation other than what is good and right for your child. It's the one that you'll constantly be reminded of no matter how hard you try to forget.
This is the reality of having a trisomy child.
Unfortunately, becoming intimately acquainted with the mortality of their child is only the first brutal piece of reality facing a trisomy parent. If they are lucky enough to ever be able to take their child home from hospital, it is highly likely that they will need to provide 24 hour care resembling that of a hospital or hospice until the inevitable never-timely fated death of their child. Whilst much of their time together may consist of routine care-giving and regular bonding, playing, loving time spent between parent and child, because problems with fundamental bodily functions such as breathing and swallowing are both extremely common among trisomy children, parents will, at some point, likely witness numerous near-death episodes via aspiration and/or asphyxiation. These panic-inducing highly stressful episodes can be as rare as once or twice in the child's life, or as often as multiple times daily for extended periods, depending on the child's condition. This is the surface level reality of a trisomy parent.
Take one step down into the deep well of the trisomy life, and you'll find another massive challenge facing trisomy parents; selecting the best life-sustaining treatment options for their child. As heart defects such as VSD, PDA and ASD are very common in trisomy children, major invasive heart surgery is something that will need to be considered by many parents. Unfortunately, it is rarely as simple as scheduling the surgery with the local hospital. Hospitals often have varying policies and attitudes with regard to trisomy children, and some will either not be capable of performing the complex surgery required, or will have a policy against intervening with trisomy children (or both); classifying major surgeries as 'life-extension' procedures, rather than simply necessary life-saving surgery. Trisomy is, after all, 'incompatible with life'.
The next step brings into view the long term prospects of the child. If immediately life-threatening problems are able to be resolved, and the child is able thrive (relatively speaking), parents will still face the fact that their child's mental and physical abilities will forever be strictly limited. This is not to say that all children are born equal with the same maximum capabilities - far from it - but regardless of how intelligent, mobile, generally capable the child is, they will never even vaguely resemble a healthy non-trisomy child. Their proficiency in all areas will always be plotted on a severely handicapped plane that pits them against themselves and other trisomy children, as well as children who have been inflicted with some of the other most severe handicaps known to mankind. This is one part of the reality that no trisomy parent is capable of escaping, no matter how many prayers they say or wishes they hold, or how much time and energy they devote to teaching, guiding and (re-)habilitating their child.
It is, I'm sure you'll agree, an intensely unfair, unequivocally brutal reality.
The good news, and there is, in fact, a plethora of good news, is that trisomy children are forever the embodiment of pure and absolutely beautiful innocence; as though they were born in Peter Pan's Never-Land, and never took a single step outside of that world for their entire lives. They exist in a bubble of that innocence, which is filled with joy, pleasure, excitement, and the most cotton covered contentment you can possibly imagine. Parents and carers play a vital role in creating a loving environment in which this fragile little bubble has the chance to exist, and they are also the lucky beneficiaries of all the joy that pours forth from it. Of course, within the bubble there is pain, cries, screams, tears and discomfort; all of which are real, regular and often horrific, but those times of sadness, for them and for their parents, only serve to make their smiles just that little bit sweeter for anyone lucky enough to be a part of them.
As a trisomy father, I cannot tell you that anything in this world means more to me than the smile of my son as he spots me out of the corner of his eye during one of his midnight semi-wake-up sessions. As his pacifier wiggles in and out of his mouth, he hears his daddy's voice or sees his daddy's face approach him, and a tiny little smile crosses his lips; it is the single most joyous moment of my life each and every time I'm blessed enough to have it bestowed on me. It makes all the brutal realities worthwhile, even negated. And that, for me, is the true reality of having a trisomy child.
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| My son's incredibly infectious smile (just over 2 years old) |
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