Think Pink

I'm having a sad, contemplative day...I learned that a friend I hold dear has been diagnosed with breast cancer. She doesn't live near and we're not in frequent touch, but I love her. I don't know much about her condition other than it was detected early and she's having surgery tomorrow. Dan and were just talking about her this past weekend as I read him tofu recipes (she and her husband are vegan) in hopes of inticing him to not eat as much meat...They're a family that is always in our hearts but we don't often do a good job of just calling to say Hi or emailing...it goes both ways and they're never far from our thoughts. It's hard to hear such news. It's the kind of news that makes you want to wrap your arms around your friends and whisper confidently that everything will be fine. (and it will by the way...). It's hard to be far away and want to say "anything you need"...because you mean it and you'd be there if you could...

Reminder

The two have been popping up in my mind this week...Since reading Elizabeth McCracken's recent memoir, An Exact Replica of a Figment of My Imagination, I've relived both my pregnancies over and over. Only the first went to term. Cole. Both seemed normal, yet both had their individual traumatic outcomes. Elizabeth's memoir chronicles her two pregnancies, her first, heartbreaking, stillborn, and second, joyful, a healthy boy. I felt a kinship to her experience because I've found that atypical births are uncomfortable and untouchable for most people. You find yourself in another part of the hospital, away from the mothers who have healthy babies. Understandably, in my head, yet not in my heart, no one knows what to say to you or how to approach you. Your path will be different.

Raising Cole has been a day to day, hour to hour, minute to minute learning experience. His development doesn't resemble the milestones outlined in parenting guides. Along with playdates and outings, his days, from eight weeks old to present, include things like physical therapy, occupational therapy, feeding therapy. His daily routine includes stretching and powerful medications. Things like chosing a book to read or selecting a toy or game to play with often take countless guesses and I'm fairly certain don't always end up with the correct guess. He's just patient and relents with the next best. He handles his life with grace. There's a sort of inate acceptance of his condition and of his limits that allows him to move beyond them and to continually surprise with new actions, interests, words, abilities. He amazes me every day.

The other thing that provoked my thoughts of motherhood was Jenny McCarthy guesting on Oprah a few days ago, talking about Warrior Mothers. I know many, not just mothers, but fathers too. And not only parents of children with needs. Inspiring moms and dads who continually show their children respect, interest and guidance with the perfect blend of love, authority and understanding. Some of the battles are different for parents with children who have special needs. We find ourselves becoming verse with medical terms, with education law, and we develop an unspoken kinship with other families who brave the same. Before having Cole, I had never heard of an IEP. I was unaware of the various schools of therapy. I didn't know what an AAC (Augmentative & Assistive Communication) device was. Now I'm learning to program and personalize one...and Cole is learning to better communicate with it.

His life opened mine up in ways I could not have imagined. But when I remember, relive, his birth, I still find the emotions fresh and tangible. When, after a couple of extremely uncertain days, one of the doctors actually said "tomorrow" in reference to a test that they'd run, and I thought, "there will be a tomorrow?", I finally breathed. And continue to do so daily!

The Boy Turned Seven

I find it hard to believe that I have been Cole's mom for seven years! Longer, if you include pregnancy, which I personally do include since I had the great fortune to spend every breathing second with him during those months. Cole's come so far since his grand traumatic entry to this world. He celebrated his 7th with twenty friends in our backyard doing crazy experiments and watching a wonderfully amusing science show put on by Dan and our friend Muse. The kids were in stitches and then completely wild banshees running around with cups full of disgusting goo and worms and bugs and electric green slime. I made Cole's cake...a horrible crumbling tower of red velvet volcano cake held together by absurd amounts of chocolate frosting oozing with red and sparkling orange lava! It was a definite kid hit! The whole party seemed fun. I remember my mom putting together home parties for my brother and I...There's something so nice about being at your own house with your friends and family and just playing...We didn't do anything fancy but the kids were happy, engaged and crazed the whole time. They made Sharpie marker tie-dyed "lab coats" to wear during the science stuff. Having the craft ended up being a terrific ice-breaker for new friends to ease into the festivities and gave the children something to do while everyone arrived. All in all a success...The boy loved it!

Day One

I've moved my blog...Today is the first day of the new one. As a means of (re)introduction, I am a mom, first and foremost. I have an almost seven year old boy, Cole, who is the inspiration of my every move. He was born with cerebral palsy. His disabilities are largely physical. Cognatively, he is bright. He has a well developed sense of humor and an incredible determination. Every movement requires effort on his part and he handles this lot with a grace beyond his years. He is in the first grade at a school where he is fully included. He's never been anything but included. We have done our best to allow him to lead a life not unlike his peers. He is the beat of my heart.

Besides being Cole's mom, I am an ever evolving woman...Typically, much to the chargrin of my husband, I refer to myself as a girl...I'm not sure why that is? A mad desire to recapture my youth? No! Not that my youth was all that terrible. The formative, most impressionable years were spent in the 70's...I was fortunate to grow up during the most active, interesting, provocative years of punk rock. I'm told that the music of your youth is the music you continue to love throughout the years. True! On those rare occasions I find myself alone in the car, the old punk rock blasts and I do my best impersonations of Poly Styrene, Johnny Lydon, and the like. Yes, I am the weird mom in the minivan singing and bouncing about...

My old blog was largely posts about what runs though my head and updates on what Cole is up to. I initially started it as a means of keeping in touch with out of town friends and family when Cole was having a surgery a couple of years ago...Of course, I got hooked on writing and emptying my head of all of the gunk so after a couple of months without much output...I'm back.