So many flaps to go before I sleep...
Hey out there- Faithful Four- thanks for the comments. Yesterday was one of those days where acts of simple human kindness made me weep.
It started when I risked looking at my blog at work, right in my space 2 feet from the 2 people who sit right next to me. I'd promised myself I wouldn't do that, having just returned from 2 weeks off. But then I realized that actually I'm still sick and wouldn't be back at work if I had any sick time left. And part of What The Doctor Ordered is blogging (my inner doctor that is!) and god knows, one of my new resolutions in my Change-My-Life-Regime is to follow my Inner Doctor's orders.
I truly panicked (how the hell do you spell that- panic, panics, panicked- paniced??) when I sat at my desk (which had been relocated while I was gone and all my stuff packed in a box. So that what was previously a system- though completely disorganized- became just a mess). But I didn't panic about the chaos- it was just the being there. Having to try and focus on something besides the pressure around my heart, the terror I still feel remembering when my blood pressure crashed in the hospital, the way I could see my husband getting so tiny tiny and far away and I was crying "I can't see you, help me" and I felt so desperate not to leave him and then when I came back into my body it was like I'd been somewhere really far away and seen something I couldn't forget but don't want to remember.
My husband is not a happy man- never has been. His struggle with depression makes mine look like a picnic. I'll never forget the helpless look in his eyes- I think there was terror right behind it but I just remember wondering why he wasn't doing anything to bring me back from where ever I was disappearing.
I think my whole damn life I've been looking for somebody to "bring me back" from where I'd disappeared. I didn't have the worst childhood, nowhere near it. Some parts of it were great fun and a LOT of it was hysterically funny. But it was a childhood you had to survive and I can remember always having had this feeling of being divided- of having a me living in the world physically but the REAL me, all kind of lost in the tunnel inside me wanting to get out but having no idea how.
Maybe that's part of blogging to me. Blogging and avoiding my binge foods- they go together. Maybe this is a way of me trying to have my body and my soul in the same space at the same time. I love the sound of my fingers pressing down the keys. The little tip-tap of my fingernails, the feeling of pushing gently and having letters appear and then words and then sentences and then feelings and then things I didn't even know I had to say are being said and words are coming back to me from people who don't know me but for reasons I can't begin to understand, are encouraging me on my way- giving me a hope I can barely hold by myself.
I gave up hope for my body a long time ago I think. After I lost my third pregnancy I decided what I'd always feared was true- that my body had been too damaged to do something good like bring forth life-or anything like health. And then I had my boys, who both had special needs and there hasn't been a lot of time to let myself think about what had been done to my body 35 years ago- there was early intervention to do, physcial therapy, speech therapy, sign language to learn, cardiologists to interview, open heart surgery to get through, services to fight for, therapists to research and find and somehow pay for and old wonderful friends who didn't quite know how to welcome a babies they hadn't expected and family who mean well but haven't a clue what it is like day in and day out.
And what is it like? I suppose it's really like everyone elses mothering with some extra complications thrown in the batter. I make it sound so hard, it sounds like I'm complaining and I try never to do that and yet I'm afraid I do all the time and I really wish I knew how to let people know that this is so hard I can hardly do it another day and yet I wouldn't undo it for anything.
I know more now than I ever thought I could about love- about love without conditions, love without the usual "rewards"- the dance recitals, the stellar report cards, the gaggles of friends, the birthday party invitations and sleep overs, the playdates, the school awards, the lead in the school play, the instruments played, the family history shared, traditions passed on. It's still all so new to me. Every day it's new to me all over again and maybe that's just what motherhood is.
This Saturday Walker has been invited to his first Christmas party just for children with special needs. He swims with special olympics now and that's how they got his name I guess. Santa is going to come and give Walker a Batman toy which I called and requested as the invitation instructed me to do. It has been both heartwarming and heartbreaking to spend my Sunday nights at Special Olypmics watching Walker swim with all the other children and adults who want just as much as I do to be seen and noticed, to have an audience, an admiring public, fans, awards, recognition. Love.
It is heartwarming because week after week young people put on their bathing suits and get in a pool with children they don't know and help them-in whatever way they are able- to move from one end of a pool to the other in preparation for a swim meet in March in which everyone will swim and everyone will win. And it is heartwarming because for free these young people give up a sunday night to sometimes be drooled on, in my sons case thrown up on, and always with a smile and a cheer, hugs and jokes and silly little rhymes made out of children's names and songs to swim in rhythm with and an invaluable gift given to every mother sitting poolside.
It is heartbreaking because I am there. Because I am a mother there- not a volunteer. I am sitting on the bench talking with the other mothers about school battles, medical battles, marriage battles, sibling battles, family battles, friend battles. The never ending battle of making a place for children our culture does not really see the value in making a central place for.
And I am one of the luckiest ones there. Walker with his little tow head and his splashing, dog-paddling glee is a favorite. He can walk into the pool by himself, he can pretty much swim, his heart defect is all fixed up, he doesn't have seizures, he can eat, he's pretty much toilet trained, and he can talk and tell me, "No mommy, bad mommy, kill my friend bird. Bird alive fly sky. Bad mommy kill bird" when he catches me preparing our Thanksgiving turkey! And he answered me for the first time the other night when I prayed as I do every night, "Thank you God for Walker", then kissed him and said, "I love you Walker" he said, "ov too ommy" and I thought my heart would melt and that was my dance recital, straight A report card and lead in the play all rolled into one nobody-will-everknow-it-happened moment in the dark by the side of the bed of this little boy I have been given to love and bless and be blessed by.
I know that to be true. That he is really the gift to me. Some gifts it takes a long time to realize how perfect they really are when they're not at all the gift we really wanted.
Tomorrow we start our Advent calendar at home which is always a challenge as Walker throws huge tantrums when he can't open all 24 things on Day 1. Waiting is hard. Waiting for the gift at the end to be revealed is a hard, sometimes painful, process. For Walker- no less for all of us.
I love Advent and I have especially loved it since Walker was born. I am certainly no VIrgin Mary and Walker is certainly no Christ child. But I am comforted to think that I walk a path with so many unseen mothers past and present. And not just mothers of children with extra chromosomes. Brian is a teenager at my church anxioudly awaiting a lung donor to save him from the CF he has battled for so long. His mother didn't know the moment he was born what a long slog she was in for. And she surely didn't know what joy she was in for. Brian's family holds onto seemingly simple moments that most of us wouldn't even notice had taken place,much less consider nearly miraculous if only because we are still alive to experience them...
I sure the VIrgin Mary had no desire to end up unmarried and pregnant- if you believe the story- with the child of God. That makes having a baby with an extra chromosome seem downright mundane- comparitively uneventful. Mary couldn't have known what awaited her or her son. Not the wisdom,not the miracles, and certainly not the suffering. But as it came to her she lived it and walked on being the mother of a child she'd probably wished had just been a crooked tax-collector with hoardes of children instead of a man saying crazy things like "take up your mat and walk' and "turn the other cheek" and "I am the bread of life" and "your faith has made you well. Go in peace" and "forgive them, they know not what they do". I am sure Mary just wished for some quiet well-behaved young man taking her to temple and making sacrifices as expected instead of clearing the place out in a rage. But we do not get what we expect and what I am beginning to realize- which is both frightening and exhilirating- is that my guess is we don't really even truly know what it is we've gotten.
I am like Walker really. In my own way I am pulling, pulling, pulling- trying to get the rest of the flaps of my calendar open before their time. I am so at the very beginning of this motherhood journey- walking with these children who have so many complicated needs, carrying my own very complicated unmet needs and I just want to know if any of the flaps coming up are going to hold some really nice surprises. But of course I can't know. I can't open the flaps and even if I could I wouldn't know the meaning of what they held until long after I'd been living what I found there.
It isn't fast enough. It all takes too long to live into. I keep wanting some certainty, a glimpse into the future- and I want to know that future will hold happiness for Walker- particularly after I am no longer here to kiss his blonde head at night and press my lips into the flat space between his eyes that I have grown to love- it feels like peace to me- that very same flat space that made me cry out in resigned recognition in the delivery room. I didn't know what I had delivered.
I am still finding out. And most of the time I am surprised by the joy. The sorrow I expected. The joy is a complete and utter surprise. And blessing.
Welcome to advent- no matter your faith or lack thereof. Even when we don't acknowledge Advent I believe it is unfolding around us- we're alway on for the ride whether we know it or not.
3:02:40 PM 
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