There is a belief in China that when a child is born, an "invisible red thread" connects the child's soul to all the people: past, present and future, who will play a part in that child's life. If you subscribe to this belief, it was simply destiny that my Chinese born daughter is beside me on this journey.
Initially, upon learning of my diagnosis, I was devastated by the thought that she would have to witness my eventual decline and lose her mom much sooner than seemed fair. The question of why...why would God have joined us only to bring such pain and grief to a child? I have no answer to that question, only deep sorrow surrounding the reality of it.
Although she and I do not share any biological connection, there are so many ways in which I see myself in her. I guess it has always been a question of nature vs. nurture, but there is a connection between us that I've always felt but never expected would play out in this way.
I remember the day vividly in my mind’s eye; it was my eighth birthday, I was sitting on a bench in front of the five story apartment building we lived in waiting for my parents. In my hands a brand new red transistor radio, a gift I received that very day. While my attention was clearly on my new toy, I do recall my thoughts as I noticed my parents walking out of the building. It's likely that this was not something new I'd seen, but for the first time my usually self centered focus, turned toward them, and processed what was happening. Why did my mom need to hold onto my dad's arm so tightly? Why couldn't she walk on her own? Was someone going to explain this to me?
She was diagnosed right after I was born; it was neurological and by the time my eight year old brain noticed, it looked a lot like what I am currently emulating today. It was not ALS but there were a lot of symptomatic similarities that played out in a gradual progression of decline that a child could miss. Sadly, we lost her when I was just 16 years old. My daughter recently began to ask how old my mom was when she died, and I dance around the subject, because I cannot bring myself to tell her, that she was the very same age I am today.
So, here I sit with both the perspective of a mom frustrated by the reality of her physical limitations, and the memory of what it was like to be eight, and realize my mom was different, but not in a good way...
I've been told that my story is uniquely my own; it is not my mom's story or my daughter's story, and that my experience as a child provides an awareness my mom didn't have. I pray that awareness evokes wisdom, patience, and understanding as we travel this path together; I would not have chosen this for her...