The unimaginable

Right before Little One started school, I began having irrational thoughts about leaving my "medically-complex" child(a term coined by a good friend with another medically-complex child) alone with strangers.

And steps.

And a big climbing structure.

And other volatile 3-year olds with easy access to heavy, wooden blocks. (Little did I know who would be the volatile one.)

I thought of all the potential emergencies that could befall her and then imagined every possible way I couldn't get to her if I needed to. Lost keys. No gas. Dead cell phone battery. (Need I mention that her school is probably not even a mile away? I know, I know.)

The first day I had to leave her, she was happily playing on the playground. I was standing at the gate, eyes glued to all the possible dangers for my somewhat (but not really so much any more) motor-skill delayed preschooler. I had written her medical history and issues on the emergency forms, but had never spoken to her teacher about them. I didn't want her to be judged because she has "Syndrome" written in her medical files. But at the same time, I wanted her teacher to keep a special eye on her. A catch-22.

I decided to err on the side of caution. Her teacher, a woman I have known for several years, was standing next to me. Perhaps understanding that sometimes that first day is more about the parents separating from their children than the children separating from their parents.

I mentioned her gross motor delays and my fear that she would try things she wasn't capable of yet because she was keeping up with the other kids. I talked about her poor balance and the fact she falls a lot and doesn't do well on uneven surfaces. And slowly, part of her story started to unravel. Not enough that I was uncomfortable, but enough that I could see her teacher understood that while she is perfectly "normal," she may need some extra attention.

And in the telling of Little One's story, her teacher told a story of her own. About her own son, now 16, who is medically-complex and had spent more time than a kid should at Children's Hospital. We had even seen some of the same doctors. While my heart went out to her and her son for all they had been through, I felt a sense of relief.

This is another mother in The Club. She understands my fears. She knows my child. Not specifically, but understands the need to challenge and yet nurture her in perhaps a different way than other kids. To keep an extra special eye on her. By the time I left my baby on that playground, I knew that she was in sure and capable hands.

This week, however, her teacher, that member of my club, lost her child.

He had medical issues, but nothing that could possibly have prepared her for his sudden, shocking and untimely death.

My heart has been bleeding these last few days. I never met her son, and I really only have just begun to know her well, but any mother can begin to imagine the searing pain, ripping your very heart right out of your chest, that must come with losing a child.

I let it puddle around me and then I need to shut it off, push it away for awhile. If I kept her in the forefront of my mind, I couldn't function.

It is every mother's worst nightmare, and yet, for those whose children are medically-complex, it is something that you can never allow to wander too far from your mind. The rare complication that could take your child's life. What are the symptoms? Would you know it's happening? Would you get to the hospital in time? What if your keys were lost? Or your car out of gas? Or your cell phone dead?

All these questions, all the what ifs, will hang in this mother's mind forever. But it will never change what happened. The worst thing that she could imagine, that she feared and yet was never far from her mind, happened. Her baby died. She couldn't save him.