You cant find this feeling or this moment when you are in the thick of complex health care issues. I couldnt have found and felt this feeling whilst we were fighting to keep our son alive. You just are on complete critical care mode, so finding the clarity of the place your loved one exists in this old fashioned society we exist in, it cant be established in my opinion until you have some space to stop and resonate in your own surroundings and admire/watch/exist in your child’s world. Not our world. the world that they exist in. thats the one we have to sit in. stop, pause and expand what the process of life from birth to death are. why do we follow the same pattern? who does it and who doesnt? who is happy and who is unhappy? why do we do the things we do? why do we have goals of which exist for other humans on this earth? what if it was actually just a script and we should be tearing it up? writing a new story for each spirit and soul we exist in? what if.
This clarity comes from time to think. Not a lot, but many moments of why does he have to learn to read? why does he have to learn to drive? why why why? all the hmmm moments as a parent we have in the developmental delay space. but what if they or he or she or all of us dont need to do all the things we are told to do.
This moment arises at another part in the mix that we call disability parenting. Its a moment that is a little bit “transcending” if thats a correct way to explain it. When you think, live in a straight generic lines kind of world and work/operate in the straight line generic rules of how you think, you thought, exist in…. well this moment doesnt exist for you yet. Its when you stop. pause. and think outside the generic ordinary common traditional meaning of what we do as humans, that you might start to pull a string. a string which unravels in your mind.
what if. what if the school, job, partner up, mortgage, retire, holiday, relax and grandkids “type” life isnt actually the goal. what if its actually far more earthy and far more broad? what is life isnt about old milestones, old goals of our parents, our peers, our neighbours. what if its about laughter, safety, shelter, love, simple joys, moments, health and just our day to day happiness. Not the big stressful boring “everyone else does it that way” kind of life. What if the child that goes to university and buys a house and engages a partner and has kids and all that, what if thats generic and a bit bland. predictable, stale, maybe even boring. what if having the child and young adult and future adult of the world who sees life in one meal at a time, the colours on his shoes, the weather and its impact on his day and feels all the emotions like an explosion or a beautiful firecracker in his soul, what if he’s the beautiful progressive hybrid human who has dropped all the worries of the old world and built a spirit inside a special rare diamond like human form?
maybe we are the lucky parents. we got the diamond, your child is beautiful but more like the amethyst. lots of them and still shiny and pretty and amazing to hold and shine. But we got the rare pink diamond. the one which is so amazing to even just be in the presence of, the gem that makes us feel so beautiful with all its pure clarity.
what if. I think he is the diamond. i think he is the lucky one. i think the rest of us are chained to the rules of a boring bland generic world, but our beautiful special diamond peers, children, whoever… they are the ones we should be grateful to even see in front of our eyes. so rare. so amazing. so special, you wont ever know or see or feel potentially what they do. we can only dream of such amazing skills, to be the person they are/
we, they, us in this special disability, special needs , extra needs whatever you call it. neurodivergent world. we are the special ones, we have the hybrid, we have the limited editions. sorry for the “normal” world, we can let you see and feel and imagine what it might be like to be in this world. but you wont ever be truly. sorry you really missed out on something wonderful, but you can keep trying your best to be as beautiful as pink diamond, but in fact you can always just sparkle in your best amethyst kind of way.
I have started to feel a little bit elite. i am happy for those around me who are happy for their own lives and those of their healthy ordinary children, but i cant help but feel a little bit luckier, like we got gifted the more extensional experience. We have the moment which make your heart, soul and brain explode with extreme emotions of every kind, almost every moment of every day. its a wild beautiful ride. never boring, always different, sometimes absolutely exhausting but never dull or predictable. We could have had the amethyst, but we won the genetic lottery and we got the pink diamond. If you are gentle and kind, you can spend some time with us and feel some of the special rare moments we have every day.
A Journey to Joy 