Another mom mentioned in her blog that the social worker warned her that some people in your life would withdraw from you when you suddenly find yourself with a special needs child. Another friend, who's currently fighting cancer said something similar about how some of the people closest to you suddenly disappear when you are in crisis, and some folks who might have only been acquaintances become your most indispensible companions. I've been thinking about this a lot. And grieving. I keep circling back to my last communication with my oldest (former) friend in town...Dear Kinn,
We are really shocked and saddened to hear about this, I had no idea this happened to your family. Wife2 and I will be keeping you in our thoughts.
Buddy
RE: what's new?
Hey Buddy,
Did you go see Punisher when she was in town? I guess you haven’t heard about Bo.
So, when Bo was born in June, he was dehydrating very badly and not regaining his birth weight. He was kept in the NICU for 3 weeks, but the neonatologists couldn’t figure out what was wrong with him. So then he was transferred to the University of Michigan via ambulance, where he stayed for an additional 2 weeks. It turns out that he has an incredibly rare and life-limiting condition known as microvillous inclusion disease. Basically, he doesn’t have enough surface area in his intestines to absorb enough nutrients to live. UM docs said that he had a 25% chance of making it to 1, and <1%>
... I would trade this friend for Bo a million times over, if that is what the equation asks for. But does it? I am so sad about this loss. And so grateful for Bo. My heart still has this echoing ache when I look at Bo and think about how different my life is, the people I've lost, the goals I've modified, the empty space in my heart this friend used to live in. I am living "a life less ordinary." And now I really know what that phrase means, too. Bo has given me so much; all the world, a new life, hope, courage, friendship and joy.
Only, sometimes, breaking away from the old world into the new is just such a painful transition. And the surprising sources we find our sacrifices originate from can catch you off guard. These things all fall under the shadow of Bo. It is a little disorienting, a little lonely, a little scary... and then, this sunburst of abundance settles into your heart.
And there but for the grace of God go we.
4 comments:
It's funny, I had people fall away when I had Connor. He cried a lot the first year - no one (well a lot of people) wanted us around. But this ended, and I take a breath and think how much more intense this is for you, how Bo will get stronger and more "normal" (in the limited eyes of others) but there will always be this shadow.
I am so sorry for the break in your life of this missing person and I can only hope that there will be others that will fill that empty space in a much fuller way. I'd like to say that people just have a hard time dealing with things...blah blah blah... survivor guilt... blah blah blah. but seriously at a certain point you just have to buck up and be there for someone as they change. YOu are a different person now, no ways around it, and this person mourning for the loss of you is very self centered. I imagine they resent you for changing, and you had to change, adapt, survive.
I am not telling you anything you don't already know. I guess I am just comiserating (sp?) with you. I am sending hugs - like always - wishing you weren't dealing with this sorrow.
Well you've got Jennie and I for the forseable future, whether you like it or not. At least maybe till Bo figures out how to ask for knock-knock jokes one after the other for hours on end. I think I told my niece here about 80 jokes today and she can talk enough that I know what "more nog-nog joges, WEN!" means. Their loss, I say, more Bo for all of us.
thank you so much for sharing this with us, sweetie. i mourn your loss of your friend and cheer for you for all that you've undertaken with boo boo at the same time. is there no better meaning for bittersweet? i suppose there are many...
we love you. !!!!
Your post has really touched me, I cannot even begin to imagine the stress, worry and exhaustion you experience providing for Bo's medical needs as well as all of the regular baby's mama stuff. I feel connected to you reading your blog and honored that you to share your insight.
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