A window into life with a multiply-challenged child as thrown open by his
over-educated, over-tired, trying-to-not-screw-it-up-mother.
Tuesday, December 6, 2011
Anyone that has ever grown up with a sibling or two or three, knows that since you don't really have a choice in the matter, you learn to take the good with the bad and vice versa.(Or you just travel a lot...!) Even hitting the lottery has its pros and cons, so why should a guarranteed lifelong relationship be any different? A fantasy is always a fantasy until you have to start living it. In an ideal universe the lessons created by the rivalries, negotiations, hair-pulling, head-locks and finger-pointing of a sibling relationship should balance out with and give way to a more benefical, loving, and productive set of social and emotional experiences...Ideally....and then the sky falls down, if only temporarily and then "ideally" doesn't seem like such a good idea anymore.
I have to honestly say that while I still harbor a place in my consciousness that remains heartbroken over the loss of a typical, (read: ideal/fantasy) "brother" experience for my two daughters, I am unfailingly curious to observe their lives as they get older with Max in their orbit. Sometimes I wonder...Will they be more empathetic with others? Will they be drawn into the complex medical and neurological aspects of our dinner conversations and make career choices accordingly? Will they be OK inviting teenage friends over to the house if Max is present? Will they hold a grudge against him or me for the kinds of compromises our family is required to make? Yes...These are silly musings and somewhat unproductive. This is their life and they will make the best of it as we all try to do. However, I experience a joyful little leap of my heart when I feel like I can connect certain, more altruistic behavior in the girls with their direct relationship with Max. Like learning more than one language from birth, their role, as citizens of the globe that are tolerant of our human differences, will be natural. Max has given them a gift and neither of them know it.
It is hard enough for me as a grown,fully mature,(at least I like to think),adult to reconcile the efforts I put into my relationship with Maxwell vs. what he is able to reciprocate. I sometimes cringe when the girls try to elicit a reaction from Max and get nothing in return, or worse, a piercing cry of confusion. I worry. Will they try again? And then from out of nowhere, I hear my 6 year old explain to a friend visiting for a playdate that Max caught a virus and that his ears and eyes are broken, but that, "He's just Max"and "He's my brother." Or I watch my 3 year old strap her giant pink hippopotamus into Max's wheelchair and try to feed it dinner, after first wheeling it around the house of course. I regularly underestimate the girls capacity to recieve and decipher unspoken emotional messages, facial expressions and the volumes that are hidden in a tone of a voice or cry...and I remind myself that Max is indeed lucky.