This morning on the Q, I listened to an interview with Ian Brown, who has released a new book The Boy In the Moon: A Father's Search For His Disabled Son.
I haven't read it yet, but now it's on my TBR list (To Be Read). Some of the interview was quite shocking, or should I say, disturbing. He talks about his moments in parenting where he felt pure despair. Of helplessness at the sheer magnitude of how much work was involved in raising his son, Walker. He described moments where he contemplated suicide and considered flying his son with him out West, to end their lives. Then the thought of all the stuff he would be lugging with him through an airport, the contraptions and apparatus that assist with Walker’s disability, the sheer exhaustion in transporting them all to another place, that if he could survive that experience, then he could survive anything.
I can relate to that feeling. Not the suicide. I have truly never even considered that life could be so difficult or bleak to choose that route. But the feeling of that gigantic mountain of tasks, of logistical planning & scheduling, of never-ending obstacles and of navigating the minefield of administrative details that go hand in hand with parenting children with disabilities, those are feelings I can relate to. Not to mention the years of never having a full night’s sleep, a way of life that J and I hope to never go back to.
I remember when the twins were still small enough to be carried in the infant car seats. Jake was only 19 mos old when they were born, so he was but a little toddler who still wanted to be carried when we went out. I remember thinking about the morning ahead, when I would have to drive Jake to his morning pre-school. The thought of how I would pack up the three kids and physically manage the carrying of them all to the car, with all their stuff, all while trying not to leave anyone unattended (impossible task!) – I was exhausted before even having left the house! I constantly debated not even going out, just because the job seemed so great. This of course, was even before the manifestations of their autism had really impacted our daily lives.
Had I known then, what we would be up against and how much more difficult life would get, I probably would have considered running away. But bailing isn’t an option. You push up your sleeves, no matter how tired you are, no matter how sad or emotionally spent, and you get the job done. We know it has to be done, so we do it.
I am anxious to read this book. I respect Brown’s honesty and frankness in talking about the feelings that most of us parents don’t want to acknowledge because it would feel like a betrayal to our ‘disabled’ children.
I also found this link about the book:
Wanna do a co-read?