Chapter 5: It Took Me Four Years To Not Cry On His Birthday.
(from the manuscript in preparation “Beyond the Puffy Eyes”)
It took me 4 years to not cry on his birthday, there was just so much to work through. And what I had to work through, apart from learning what Keith needs developmentally, is really to come to a place where I am no longer fearful of the unknown. No longer fearful of being in a position where tomorrow seems bleak to almost everyone around me, and to admit that to myself especially, and yet be able to crawl and climb myself to a vantage point of possibility, and from whatever inner reserve I can muster, turn that possibility into a vision and then while exhausted, learn to squeeze out another inner reserve within the inner reserve to work tirelessly to turn that vision into reality. We come to roadblocks with special needs children every day (Keith took 2.5 years of physio therapy to walk and at 4 years old he has undergone 3.5 years of speech therapy, yet he still struggles to say with clarity “Mommy”) and truly – we come to points, lasting months, even years, where we don’t see the obvious path and or even any light at the end of the tunnel!
Some people encounter such roadblocks or are so close to such pits of despair maybe once or twice dramatically in their lives. A special needs child, and the family, encounter this as one dramatic event, and then a lifetime of daily reminders of this dramatic event. Many run (especially the parents), some stay but stagnate in pain, some build a fortress of bitterness, some build a fortress of bliss, some fall headlong into the pits and spiral into total helplessness; many just give up with a self-determinedly clear conscience that this is “as good as it gets” for these “special” children (typically unknowingly bearing an underlying attitude that special children are a different class of lesser than human beings). There is another way – of adventure and opportunity for growth and discoveries.
It is how we respond to the dramatic event that determines whether it is a negative or a positive event, or indeed continues to remain a negative or a positive event. This makes or breaks the quality of life for the special child and the families, as a special needs child is a life-changing and a lifelong event.
And then, eureka – something clicks: To walk this journey, I’ve learnt to turn on and shine the light exactly where we are, and for as long as we need to be there, and to not be afraid of the bittersweet of life, and to do the necessary work and cultivate the reserve within the many layers of inner reserves in order to distil the nectar for the next step. I realise now, what a lovely blessing that is. Because every day is unchartered. Every day is an adventure. Every day I must not just be satisfied with not easily discouraged but to be downright courageous, and wake up every morning with an audacious resolute to hold the unquestioningly positive vision for my child and to do the necessary work tirelessly and with abundant joy in order to translate the vision into reality. And to be brave enough to let go, modify and renew my vision of yesterday on a daily basis, i.e. to walk on the edge, where it is a journey of no known roadmaps, and each step determining the structure of the next. And each step, a leap – of faith.
Special parents don’t have the luxury of time for experts to figure for our children what is the best practice or what is the latest research or what is a prescribed paradigm or programme as we lose one generation of experience and knowledge-building if we adopt the wait till I figure out what-is-the-answer approach. Policyholders, medical professionals, developmental experts and pedagogists may be able to adopt the wait-and-see approach in order to better study their policies and/or research, but for parents, that so-called one generation of missed possibility is our child. So as parents, we have to jump in for our children and BE the research material, BE the so-called experiment that no one dares to undertake, and BE the ones that fall and get criticised, BE the ones that pick ourselves up and get documented by the so-called authorities as a positive data point in research. But to us, this is our lives. We are living it. It is choosing between a life of joy or despair for us – we cannot wait for the “perfect” answer. We cannot wait for the so-called bell curve and then be told we are the outliers – that researchers can’t even chart us on the bell curve. That’s how in the extremes we are. Children with Down syndrome are multiply, multiply challenged in every way you want to choose to see it. And multiply, multiply able in every way you want to choose to see it. Down syndrome cannot be experienced from a distance. Every child with Down syndrome is an enigma beyond rational comprehension; when allowed, every child with Down syndrome is a living treasure trove to experiences and insights unimaginable.
And the approach that I stumbled upon, ironically, is the one right before our eyes. Our child. The approach is simply to be led by the child. To not be afraid to be led by the child. And to truly walk WITH the child.
If each of the special child, family and member of society can experience this and learn to keep walking where there are no guarantees and to allow our children – special or typically developing – to lead us into adventure – it’s the best gift or “skill” or “tool” that we can receive, cultivate and impart for anyone. It is a journey of no longer needing known roadmaps, because – we have arrived. To be with our child.
I am truly learning to walk this journey as a daily celebration and it is hearts and good souls such as family, friends and colleagues who jump in and walk with us to shine the light on us when we are weary, that keep us going and growing. It is not a journey of burden or help or a society problem to be resolved. It is just simply a very unusual walk on the edge of extremes and discoveries, truly off the beaten path – of daring, of camaraderie, of failings, of forgiveness, of u-turns, of discoveries, and of love. Not love as a notional concept, but a walk of joyful work spurred by unconditional love. And until we get on our hands and knees to truly BE PRESENT with and for a special child, we haven’t even begun this walk yet.
Special needs children can accomplish many, many levels of growth beyond what we can imagine and along with it, everyone who walks with them and through that, transform the quality of society and humanity that believes and supports this possibility. However, the early steps are beyond difficult, and that is where we need those with the greatest and heartiest strength and love to carry the special children and the families, and to just jump in and be with us- to hold our hands as we figure where we are, to shine on the light where we first land in a place of seeming darkness, and then to scoop or boot us to take the first real step into the wildest adventure anyone can imagine, to be a parent – on our hands and knees with our children. No need for great elaborations of grand plans or solutions, just be with us. The grand vision cannot be a reality, until we undertake the full resolve to commit to actions. With all that you are – head, heart, soul – take the plunge with us – jump in. Remember, the destination is already right in front of us – the child.
We need you to live at the edge of extremes, with us.
for Keith Cham, a child like any other child
Sept 18, 2011