Trisomy 13 children are forever just that; children. Research suggests that the maximum developmental age of someone with trisomy 13 is about 2 years old. This means that no matter how long they are able to live, they will likely never grow up mentally or indeed physically beyond that of an average 2 year-old child.
Whilst on the surface, this may sound like an incredibly grim assessment, and don't get me wrong, it is certainly grim. For those parents and carers lucky enough to be granted time with these beautiful children, comes a truly wonderful blessing. It is something that has been heralded as one of the most divine qualities to ever grace humanity. Something that binds us all together in reverence of it. That brings many of us closer to God upon witnessing it.
I speak of the gift... of Innocence.
Among the most universally adored things in life are newborn babies, puppies, and kittens. All of these beautiful beings have one key quality in common; they are all the epitome of innocence. They all trigger our innate instinct to protect, to love, and to cherish.
We all, of course, start out as innocent little babies. However, as much as my mother still thinks of me and my brothers as her babies, we are, in fact, fully grown adult males, with all of the complicated intricacies and psychological baggage of any adult living in our complex modern world. Unlike my brothers and I, Trisomy 13 children never truly outgrow their innocence. They continue to trigger that same loving protective instinct in us, forever. They remain in this perfect state of childlike innocence until the inevitable day comes that we are forced to let them go.
Trisomy 13 children will never commit a single crime, nor injure or wrong another living thing. They'll never have to apologise for their hurtful words, or make amends for their careless actions. Nobody will ever think of them as anything but the kindest, most genuine, most deserving of love and affection, of anyone they have ever or will ever meet.
They are the most innocent among us. Our trisomy angels.
In addition to this first wonderful gift, is another that many of us struggle with ourselves on a daily basis. It is something that so many aspire to, but never quite achieve. Something that Trisomy 13 children are born into, and unintentionally maintain throughout their entire lives.
It is the gift... of simplicity.
The life is a trisomy child is one of utmost simplicity. It has been said that Trisomy children appear to exist in their own little bubbles. It's a bubble that is very much separate from our complex adult world. A bubble that allows them to live in peace, unaffected by current events and dramas, uninterested in political circumstances or financial pressures, and unencumbered by the stresses and strains of the world that surrounds them.
The life of a trisomy child may appear, to some, to be one of low quality. A life not worth living. But I can assure you, that their lives are always very much worth living. They certainly are repetitive, lacking in much of the excitement, variety, and opportunity of the lives most of us lead or wish to lead. But they are often extraordinarily happy, content, and comfortable. They are full of unconditional love, unbridled affection, and as many joyous moments that parents and carers can possibly fit into them.
Their lives are constrained in the best possible way. They live in each moment, for each moment. Never looking back in regret, nor forward in painful yearning. They are as present as any yogi, as enlightened as any monk, and more at peace than you or I could ever hope to be.
They are the simplest among us. Our trisomy darlings.
As the parent of a trisomy 13 child, it, of course, breaks my heart to know that my son will never regale me stories about his day at school. He'll never come running into our house and throw his jacket on the floor for me to pick up after him. He'll never tell me a secret, ask me to read him a story, or even tell me he loves me. But I gain solace in the knowledge that I'll never have to scold or punish him. I'll never have to be the bad guy, to hear him tell me he hates me, or to listen to his cries when I take away something he loves.
My son will never leave home. I will never have to watch him close the front door behind him and worry of all the things that may befall him in the big wide world. I will never have to sit by the phone waiting for his call, counting the moments that pass and praying that he is somewhere safe and warm. Because each and every minute of every day of his life, I will know exactly where he is. I'll know he is safe and warm at home, I'll know that his mum is watching him closely, making sure he's comfortable, well-fed and as happy as possible. With this knowledge, I can go out into the world on his behalf, brave the dangers for him, and come home to him as soon as possible.
Our beautiful innocent trisomy children, living their precious simple lives. They ask for nothing from us, yet we cannot help but give them so much.
To be any part, let alone a most important part, of a trisomy child's life is to partake in something so very special. The responsibility is one of immense and unyielding encumbrance, but the privilege is one that I would not personally trade for anything on earth.
I feel so blessed each and every day I rest my head on my pillow knowing that my son has made it through just one more day. That I've continued to be deserving of his smile, his laughter, and his love. And that I've succeeded in filling his time with as much joy and comfort as I could possibly manage.
I am a lucky man; a lucky father. All of us trisomy parents are lucky. We have been blessed with the rare opportunity to meet our children, to hold them, take them home, and to make a start on carving out a life for them. We all know the horrific statistics on survival rates for trisomy children, and we pray with every ounce of our beings that our children are the exception. We have no idea how long we'll get to spend with them, when our time may suddenly run out, and so we grab hold of every moment, squeeze it tightly, and fight as hard as we can to make their lives as perfect as they deserve them to be.
They are truly the most pure of souls. Their presence can light up the darkest of rooms, can brighten the saddest of days. And make us parents, feel like the most blessed, luckiest people to ever live.
And that, for me, is the wonderful reality of having a trisomy child.
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