Landing in Holland when you wanted to go to Rome
I vividly remember the moment in all its mundane details. It was the early hours of March 2018, and I was at my room at the Marriot Times Square, New York. I was running through the talking points for the workshop I was to facilitate when I received a call from my wife, Deepa. Usually, I try to be curt during such moments of deep work. But not this time, for I was eager to hear my 31-days old daughter back home who just came home after two weeks in neo-natal ICU due to her premature birth. But all is well now, and we were looking forward to getting back to the ‘business’ of bringing up a baby. “Vish….I need to tell you something” said Deepa in a sombre voice which was quite unusual for her as she belongs to the category of people who are ‘irritatingly always happy’ for no cause. “We have a challenge in our lives. I met the doctor yesterday, and he said that Meera has Down’s Syndrome……”. I don’t remember anything that Deepa said after the words’ Down Syndrome’; for my mind was racing to identify what category of ‘disability’ this is.
I vaguely remember Deepa oscillating between sobbing and sounding brave. I cut the call by saying that I will cut short my visit and come back as soon as possible. I work in an inclusive school, and it was quotidian for me to meet children with varying intellectual disabilities. Still, I wasn’t sure of the Down Syndrome’s specific category of disability. I quickly googled Down Syndrome only to confirm the fears I had in my mind. The google images of children with mongloid faces, the intellectual impairment and other congenital health issues crushed my lungs. I was gasping for breath and was sweating in the otherwise cold room. I let the tears burst out but couldn’t indulge myself for more than a few minutes as my colleague was waiting down at the lobby. I composed myself and walked down to meet her and got on with the workshop. I was cursing as to why I should know this bad news just before this critical workshop. But it dawned on me that Deepa met the doctor over 14 hours before and she resisted calling me so that my sleep was not ruined! I finished the workshop, got my tickets preponed and was desperate to get back home. Deepa and self have been married for over a decade. We choose not to have children as we were too individualistic about our freedom. It was only in the 11th year of our marriage that we got around the idea of having a child (Actually it was Bliss, our Indie pup we had adopted, who convinced us!). The recurring thought in my head was that a special needs daughter was Nature’s sweet revenge on two selfish individuals. I was angry at ourselves, angry at the doctors for not diagnosing at the time of pregnancy. The 18-hour fly back to India was excruciating for I wanted to embrace Deepa and Meera and assure them that all will be well. I used the flight time to read three books on Down Syndrome to get a lay of the land and have all the answers ready for Deepa. I reached home at 2 am, and fortunately, both Deepa and Meera were awake for the night feeding. I held Meera delicately and assuringly, like the Redeemer. Meera made fleeting eye contact and clasped my left little finger tightly. And with her clasp came crashing my deep-rooted identity as the protector. For at that moment, Meera made me realise that it was not me who was holding Meera. It was she was who was holding me.
It has been two years since Meera has been with us, but it has been a lifetime of learnings, reconditioning and acceptance. We still are dealing with the medical exigencies for Meera, including open heart surgery and a multitude of therapies to get Meera close to even the basic of developmental milestones. But life, for Deepa and self, has been lighter, joyful and extraordinarily beautiful. We feel younger, purposeful, and we sweat the small stuff way too less. A lot of parents of children with special needs struggle in the first few years to find their new equilibrium and often with a heavy personal toll. We were lucky, but I wish someone had told us a few things at the outset about this extraordinary journey. So here is our listicle on things we wished we knew two years back.
Discover new relationships. Build your tribe
The one thing that helped us sail through the uncharted path was the extraordinary support extended by people around us. You will also discover new bonds and new champions for your Child with special needs. A deeper meaning enters some of your family relationships which have otherwise been transactional. The first person we reached out when learnt of our Daughter’s condition was not our parents or siblings but my sister-in-law. She was the first one who dropped everything and provided the holding space of love and acceptance. We found strangers across geographies who gave their time, opened their homes, shared their intimate personal struggles with us and supported Meera as a close family would do. We realised that many parents had walked the path before and they have cleared the way for many to follow. There was some pain in recalibrating our social networks and relationships. Still, we surely did come out richer, wiser and more grateful. This newly formed tribe will reassure you that all is not bad and in time, all will be well.
Assume positive intentions
Many of our friends and family genuinely didn’t know how to respond to Meera’s condition. Their response at times seemed like apathy or worse judgemental. But we quickly realised that it is unfair to expect understanding and empathy from all our loved ones. As much as Meera’s needs support, our families also need support on how to deal with Meera. We developed a communication strategy, vocabulary list and a FAQ list on Meera’s condition. We also learnt not to over-interpret what our loved ones say or didn’t say. Above all, we assumed positive intentions in everything people said or did.
Don’t judge yourself by your thoughts
Our mind has a mind of its own. Especially when it is confronted with existential fears of the foggy future of your Child. In the initial few months when Meera was diagnosed with congenital heart issues, feelings for Meera’s death as the solution was common. I was ashamed and felt guilty about such thoughts, but I soon realised these are just random ramblings of any mind, and they don’t reflect on what I genuinely feel for Meera. These thoughts are also more about me and my loss and not about her. I also learnt that many parents go through these feelings and thus, it is crucial that we permit ourselves to be human.
Have High expectations. Even if you are the only person
Theologist define faith as having an unflinching belief in something you cant see. Parents of special needs children will experience faith more than any spiritual seeker would. Most doctors, largely coloured by their past experience, may have an insipid vision of your Child. Your therapists and teachers may give up. But the only North Star that will help your Child help realise her potential is your faith in her. Your belief that one day, irrespective of her natural limitations, will triumph over Nature. You are the only champion for her, and no one else will have the sense of urgency and depth of patience you will have.
Contracted Perspective of time. Be in the Now
One of the unintended gifts of parenting a child with special needs is that you are forced to be in the Now — something even the best of meditators would take lifetimes to experience. Best-selling author and psychologist Jordan Peterson talks about this in his best seller book ’12 Rules of Life’ when he meditates on his daughters debilitating health issue. It is very difficult to think into the future when you have a child dealing with issues everyday. The only way you move into the future is by doing what can be done today and getting rooted in the now. You don’t think of 3 months or 6 months, you just think about the therapies and interventions you need to do today. You believe, to your last bone, in the practice of Power of everyday effort.
Relax if you don’t have all the answers. Let Her divinity guide you
One of the most trying times for us was when Meera underwent open heart surgery. Naturally so, we were unduly worried about the outcome of the procedure and its side effects on Meera’s brain, and a myriad other problems my mind projected. Two days after the surgery, I walked into the ICU to see Meera for the first time after she is off the ventilator. Only to witness one of the most beautiful things I have ever seen in my life. Sedated but seated like an emperor on an elevated pillow, with arms spread out like a saviour of the world, with near-perfect full moon roundness of the face, and a glowing skin only to be faded by the utterly cute pinkish lips. Not sure if it is the focus lights to keep her warm, or the divinity inside expressing herself — she looked like the life-giving goddess in the otherwise insipid ICU room. May be it was the sedation or the inherent wisdom in her — she looked like she knows much more than us. Experientially I felt for the first time that when don’t have answers. And when we are gripped by fear, Meera is the light that will guide us.
Even the most prepared minds can’t deal with your infant struggling with pain. Like Arun Shourie expounds in his book ‘Does He Know a Mother’s Heart?’ on his Son with cerebral palsy, one cannot rationalise why a baby has to go through horrors like a painful surgery or a life-debilitating disease. But often, the solution just lies in surrendering to the wisdom of your Child to guide you.
Recognise your true loss: The loss of ‘our idea’ of perfection
Emily Perl Kingsley, better known as the co-creator of Sesame Street, wrote an inspiring essay after she mothered a Son with Downs Syndrome. Titled, ‘Welcome to Holland’, the essay became a guiding light to generations of parents of Children with disabilities. The essay talks about how you prepared for a holiday in Rome and boarded a flight for Rome. And when the flight landed, you are told that you are in Holland. All your and your family’s preparation to tour Rome have gone waste, and now you are unprepared in Holland. But she reminds us that Holland may not be Rome, but it is still beautiful with tulips, windmills and even Rembrandt! Often, the pain of parenting a Child with special needs is not about the Child, but about the loss of our idea of perfection in our Children. Letting go of this idea of perfection is not just pragmatic, but also being fair to the uniqueness of our Children. My Child will never be like another typical Child, may never do things other Children may do. But that is the whole point. She will do what she is meant to do, what she likes to do and what she finds meaningful. It may not fit into a societal peg but will stand out in her own right.
Come to think of it; these points are not just valid for parenting a special child. But for any child. There is nothing special about a special needs Child. They are just different. What makes it special is the Parent’s capacity to let go, learn, embrace the uncertainty, champion for your Child against all the odds. And above all, make life as ordinary as possible for our extraordinary children.
