I'm the mother of a childhood cancer survivor and the mother of a child with a brain injury -- Autistic Spectrum Disorder, ADHD, Tics Disorder and Trichotillomania.
Having cancer as a baby does not come with the benefit of understanding what has happened to you. I am not writing this to point out anyone has it worse with cancer, but as an adult you can at least come to terms with why you have lost your memory, why you have scars, why you are not the same anymore.
My child looks just like the next child except he bears a crooked smile and one eye that closes when he laughs. The most devastating battle scars are underneath. How do I explain he may never be the same? I don't, because I believe has the potential to be great.
The heartbreak is watching him deal with his scars every single day. The overwhelming anxiety he goes through. The hypersensitivity to something as simple as a pair of new socks. When anxiety gets too much aggression takes over and he hurts the people he loves.
The heartbreak is feeling helpless and broken knowing he may never have the working memory of an average adult. Broken that $12,000-worth of therapy produces an improvement, not a cure. Broken having to explain why, eight years after Chemo, he still feels like a hospital outpatient.
Broken asking why? Why receive a second chance at life only for it to be so hard to live. Broken thinking, could I have prevented this? What could I be doing differently today? Will it be like this forever? Broken picking up pieces of my son's hair off the floor.
I love my son, despite the parenting hardships I face, I cannot imagine my life without him. We live a very simple life as he home schools for half the week. My full-time career is on hold so I can dedicate myself to him. Life does get exhausting and often I'm in a hyper-vigilant state. Waiting for the next mood swing, waiting for the next phase of madness.
I am often unkempt and unslept, which is the official uniform for a battling ASD mum. The mum with a thousand labels and still no clarity. Having a brain injury diagnosis leaves me an even more complex issue to explain -- so I usually just don't bother. Let people think what they like.
This is now the skin I'm used to living in. I can perform considerably well for a person with such a full plate. Maybe the heartbreak of watching my son struggle is the force that drives me. The reason I take steps every day to build a better life.
No, I won't give those emotions that kind of credit. We build a better life together because of the admiration I have for his strength. He made it this far, he didn't give up. If he can do it. So can I.
Society is already split down the middle on a lot of these labels. Some supporting them completely. Some pretend to understand until they see a meltdown in a supermarket. Others wholeheartedly believe ASD is a lack of parenting.
Perhaps some of it is a lack of parenting. A symptom of exhaustion and heartbreak. Like I'm drowning in my own pool of anxiety. While people stand by and judge, I am trying to hard to raise him to be a kind, giving, strong young man.
Are you a special needs mum? Does this sound like you? Know this -- you are not alone.