When my daughter turns 18 I will remind her weekly to play the lottery. If there ever was a child who embodied the phrase “what are the chances?” it’s her. What were the chances she’d be born with a cleft palate? What are the chances it would be a complicated form of the cleft malformation called “Pierre Robin Syndrome? What are the chances she’d end up with colic as a child … and that it would continue into her childhood as a form of ADHD? But wait, we’re not done quite yet, after all this how likely would it be that things would get much worse? Bring on the motor / vocal tics that are now 3 short months away from being “officially” diagnosed as Tourettes Syndrome. I’m not sure who this journey has been harder on, me or her. I’m not sure at what point I lost myself in her, the days and years blur one into the other with the sole purpose of survival. I think I’m finally coming to terms with the reality that having a child with a disability is emotionally disabling.
So many things other parents take for granted cause me anxiety attacks. Hiring a babysitter – what if she can’t handle her!. Going to school – what if people make fun of her? Is she blinking too much? Has she cleared her throat too much – another tic?? Going to a social event? What if she is bouncing off the walls?! Did I remember her meds? Am I doing this right? Is she going to be ok? People don’t get it, when I say I don’t have a babysitter. People don’t get it when I say that my daughter MUST be in bed by 8:30. They don’t get that without structure, and routine and enough sleep my child can not function. It’s NOT as easy as “let her stay up just this once”. Her late nights affect my entire family for days. So please, don’t criticize me when I forego a night out, or for not having a readily available supply of child care that can accommodate our needs…you can’t possibly understand how much of everything I do is not in reality what I would chose to be doing.
Over the years I’ve developed a sense of unfounded urgency, and an obsession with being in control that often tears apart the fragile seams of my sanity. For years I have not been able to focus on the things I love. Writing. Photography. Reading. Hobbies aside, I find it hard to focus on life in general and as a result my friendships, my career and my ideals have repeatedly been compromised in favour of our small, complicated universe. I’ve learned to take the judgements and criticisms in stride after all, I don’t make it easy for people to get close to me. I often become defensive and angry or emotionally retarded, completely incapable of anything short of a complicated blubbering of nonsense – over spilled milk as the saying goes. I hear of people having mental breakdowns, and I think to myself that I’m quite certain I’ve had several. I suppose if I was looking at myself, with no knowledge of my own reality I would judge myself just as harshly – I too would see the stone cold “angry” everyone seems to focus on for so long that they miss the red rimmed eyes caused by yet another emotionally draining ‘behavioural’ episode.
Parents in general, face an unprecedented expectation to measure up. In fact, it seems as though the minute you announce you are pregnant there are hard and fast rules that MUST be followed – the competition is fierce even in infancy when gushing mothers sit around musing about how fabulous, and smart and quick their children are. Children too, are born with a duffle bag of expectations and obligations for how they should behave, and think and be. Sometimes the rules don’t apply. Sometimes expectations must be modified to suit the situation, and we are forced to realign our own preconceived notions of how we hoped, I dare say wholeheartedly believed our own children would be. It’s hard to let go of the ideal and face the reality. Some moms thrive in their new role as “SOCIAL ADVOCATE FOR THE CAUSE”. They quickly adjust and go on to run successful fundraising, and awareness campaigns, championing whatever disability or disorder their child struggles with. I’m simply not one of those mothers. I wish I was but frankly…I’m so tired to be.
Maybe one day I’ll get there. One day I will come to a full and complete acceptance of my situation, losing all desire to change it. I will not feel the knot in my stomach, dreading how she will behave at social functions. I won’t feel the need to helicopter parent or worry that people will not like her. One day my heart won’t break yet again, when I see a new tic develop (just before a dance recital!). I hope to God one day I will be able to escape the worry that suffocates me like a noose around my neck…one day.
People often meet Andraya and exclaim –”Her condition is not that bad!! it could be much worse!”, or, “Oh wow…I didn’t even know!”. Let me tell you, “not that bad”, to a parent of a child with any kind of disability is bad. Discrediting it won’t make it go away and it certainly won’t make us feel any better. In many ways I am blessed. She has her health, she has spunk, she has lots of friends who love her and she has more life coursing through her tiny little veins than anyone else I’ve ever met. She is my little firecracker, and on a day to day I don’t even stop to think about the challenges she must face as she grows. Kids are mean, life is mean and it is in the stillness and quiet of my post bedtime house that that old familiar, numbing fear sets in and the tears start to flow. I can not protect her from what may come. My reality is that I will spend the rest of my life consumed with trying to do just that.
Still waters run deep, hiding the turbulent waters that lie beneath.
