Someone sent me the link to E’s blog (http://ourlittleseal.wordpress.com/). I read and cried. My heart breaks for her, for her son, for what I know lies in their future. Then I stopped and thought, but she’s not Jewish. She’s Irish. Like me. How is this possible? I did some research (oddly there’s comfort there — I know it’s sick, but it’s really who I am). 1 in 50 Irish Americans carries the “broken” gene that causes Tay-Sachs. 1 in 50. People of French Canadian descent also carry it. 1 in 50 sounds high to me. I grew up in an Irish American community — I had babies with a man of French Canadian descent.
What the hell? Why didn’t I know any of this? And why populations in Diaspora? Northern-European Jews, Irish-Americans, French-Canadians. Does the turmoil of flight, the detachment from home, cause something as fundamental as your DNA to fall apart? How fragile the human.
Are my children carrying this?
Have we simply dodged the proverbial bullet by having children with partners outside of the afflicted populations?
Random strands of whole DNA?
Does this silent poison live in my family’s genetics? Could this gene align with a future partner’s ill-fated DNA and create the profound loss for one of my children or grandchildren? Why isn’t everyone tested for this? At least when they get married?
I haven’t been doing any writing. My excuse has been that my life is overwhelming; work, home, kids. No space, no money, no time, no energy. Someone in my universe is always pulling at my heartstrings (I need to talk, to borrow a dollar, a ride); invading the bubble that I need to be able to write…
All of that sounds so hollow after reading E’s blog.
It sounds almost like hubris.
I have had horrific experiences with my children; broken neck (miraculously healed because of his age), traumatic brain injury (“the brain is a mysterious thing; he’ll either be a vegetable or he’ll die” Or he will recover and be fine, he’s fine — seriously), run over by an 18-wheeler (“She’s probably not going to make it to the hospital, so take a minute to say goodbye in the ambulance”), and IPH — whose road was the longest. 19 months of daily apnea episodes. 19 months of not knowing if he would take another breath. 19 months of not leaving his side. But I lived on the hope of “ors” and “probablys.” I lived with the hope that each breath taken got us closer to that safer tomorrow. Painful futures narrowly averted by dumb luck, the roll of the dice. I have had brief glimpses of what E’s future will be like — and I am too sad for tears.
And I have my children to hug today.
E’s blog is filled with some of the most heart-wrenchingly beautiful prose I have ever read; filled with honesty and passion. Filled with the courage to meet the moment head on. Her son is going to die — and I can’t write because it isn’t quiet enough? Because I’m worried about crazy sisters, an aging parent, money — life. Because I work too much, don’t sleep enough. Yeah. It all seems trite. I set up this new blog (yesterday). I had intended to post last night; but IPH has a term paper due about, of all things, the history of prejudice against the Jews. We did that last night and I’ll finish proofing this morning.
I am taking the opportunity that E is offering me to remind me that I am blessed throughout my struggles. The “struggles” I encounter are created by the richness of having the opportunity to move forward — against all odds — with healthy children and grandchildren. Despite my arrogance, hubris, and self-pity I am afforded the opportunity to move forward, flawed, but intact. I need to create that writing bubble and insist that others give me the space and opportunity to use it.
Like other people who know E, I have vowed to read her blog daily, to witness the heartbreak, to listen to her sobs, to respond when appropriate. To use her example of strength in my own life and be reminded how fragile the human is while reminding myself – through E – how profoundly strong the spirit.
Welcome to my new blog.