To My Fellow Parent of a Child With Disabilities
I recently stumbled upon a blog about how to best deal with obnoxiously competitive, unsupportive and overly critical fellow parents (well, mothers specifically). I found myself a little bewildered and really had a hard time relating to the sentiments on the page. Apparently, it seems, birthing technique, feeding methods, diets, clothing, school selection, after school activities and overall parenting styles are just some of the areas for fierce comparison and the topics of morning tea gossip sessions amongst many.
But I am an outsider to this world — something for which I am very thankful. And I am not alone. I am a parent. I am a mother. And I have you, a friend with different priorities. Priorities like mine. Priorities that are less distracting.
My 6-year-old son has an ultra rare genetic condition associated with a physical and intellectual disability, complex medical needs and communication challenges. Our world revolves around medical and therapy appointments, periods of illness-induced confinement or hospitalization, medication schedules and squeezing in some fun and play activities when we can. Even in our parallel universe I can see there is room for a competitive streak to blossom, but at least in my experience, it does not.
When you get the latest model off-road wheelchair for your daughter, I am so genuinely happy for the freedom and fun it will bring her. When my son vocalizes for the first time at 4 years of age, you cheer with me for the potential communication channels this may open. When you secure that highly sought after appointment with the leading specialist in your child’s condition, you can hear the applause from us all. When your teenager has a seizure-free week on a new drug trial, we all start throwing virtual high fives. And when tragedy strikes and one of our babies loses their life’s fight, we hold each other up in communal grief and celebrate all they were.
Some of the greatest lessons my son and your child have taught me are:
That being unique or different is an asset to be cherished.
That individual achievement is deeply personal.
That love cannot be measured.
That fragility can lead to true strength.
That challenges foster empathy and understanding.
That when life and death live close together; when daily effortful battles take place to breathe, sit, sleep, gesture; when the receiving of bad news is a regular occurrence; foolish competition is utterly pointless.
So I want to thank you for listening and understanding and for bravely daring to share the deepest of previously unspoken fears and the most ecstatic of little and big highs. I appreciate our respectful differences of opinion and the wider scope of the world they bring. Having good company on this path relieves the exhaustion and provides valuable space for friendship, joy and excitement — company that values others in high regard, rather than competes against it.
At the start of this journey I could not have dreamt that such a community existed. I am truly grateful to have found you. And in return, I have your back anytime you need it.