Sunday, December 28, 2008

The First Real Scare

And there we were, going along; waxing rhapsodic about diaper changes and then the house of cards comes down. I had only slightly understood what a house of cards is. I am now intimately familiar with this architecture. It’s funny, there’s no foundation.

I’ve been quiet on this page since the earliest December because we have been in the hospital. Our Willa, ever the adrenaline fiend, thought she would give us a good ole fashioned scare and teach us a Christmas lesson of love and gratitude. Didn’t particularly need the lesson but thanks anyway baby.

The morning of December 5th I awoke to the voice of my husband saying, “Oh my God.” This has not boded well in the past. For good reason. And now we had this sight to rocket us up and down to Philadelphia to Children’s Hospital at 6 am: she kicked out her g-tube overnight and the stoma had healed over. She smiled.

Long story short, g-tube was replaced in office by surgeon, sadly not in her stomach and the two feeds we emptied into her abdominal cavity combined with her meds produced a very unfortunate reaction. The baby went blue, her pupils would not react to light, she would not respond to me and she went very quiet.

She had emergency surgery to fix the tube and clean out her abdomen but by then she was a mess. She required a blood transfusion, she spiked a temp of 104 degrees, she wasn’t breathing and her heart rate was through the roof. She was also in terrible terrible pain.

It was the first time we were scared for her life and it was a singular experience to put it mildly. Colin and I stood like scarecrows at the foot of her bed while the doctors worked on her, tubes and wires leeched to her tiny frail body. She looked like a doll thrown into a thicket of brambles and just as unreachable. A piece of my heart broke off.

We then spent two weeks rebuilding, slowly slowly recalibrating everything. Her meds, her feeds, her calorie counts. Rather than bouncing back there were bouncelets. But she’s home, smiling again and she picked up a few new tricks in the hospital.

She’s yelling. Baby’s first vocalizations of any great volume. Willa yells, then looks at us with the greatest wonder. “Yes, you did that” we say and again, always, with her whole face, eyes and body, she smiles.

Our Christmas lessons of love and gratitude? Love your children and be thankful for them. They can be taken away. It’s that simple. The piece of my heart that broke off took its own journey this month. It came back to me carrying a suitcase plastered with foreign stickers of exotic locales. But it came back. We all did. And I am so very very happy.

Tuesday, December 2, 2008

The Center Falls Apart, The Diaper Cannot Hold

I have managed to avoid the scatological in my musings here but this mum can stay mum no longer. I spend the predawn hours, covered, her ass to my elbow in poop. I knew parenting required its pound of flesh, and pee, and vomit with the inner workings of various mucus membranes being common parlance of my day. But we’re talking about bowel movements here that are beyond the realm of all that is holy. She’s 14 pounds. That’s it. Our cats are larger and in no way capable of this level of production.

A lot of my time is spent teasing out what’s Costello, what’s Willa and what’s random. There are all the medical considerations and then the developmental. We see so much through a doctor’s lens, or a therapist’s. Days are spent addressing issues that have nothing to do with parenting per se. We are bunkered in what I imagine mission controls the world over must look like: charts, important telephone calls coming in, a vague but persistent sense of threat.

But in those morning moments, wherein all is disgusting and bleary and bad smelling I feel most a mom. I suppose this is just to say, parenting is gross. Really really gross. It’s something we all share whether our kids have a syndrome or not. It’s the universal. If you had told me when I was on my three month’s bed rest that these were to be the moments I would cherish…well… let’s just say you might not have been invited back.

But they are. I do cherish them. She fusses, she relaxes, she wants me to kiss her feet and then she may actually, if I’m lucky, fall to sleep for a while: warm, comforted, freshly diapered and sweet smelling once again. I love her. I mean I love her with a passion that I have never felt. Even if at the same time I am desperate to wash my hands.

It’s the feeling of inclusion that most strikes me. When you have a baby that there are no books on you find a real challenge in recognizing yourself in anything. The books just do not cover this. I asked every doctor I met in the hospital in the beginning the same question over and over again. “Should I be reading parenting books? Or do they just not apply?” They never gave me an answer. None of them, and I asked many many doctors.

But how could they answer that? They didn’t know what I was really asking. My true question was, “Am I a mother? Is she a child? Are we just those simple things too?” I didn’t realize it at the time but that’s what I wanted to know. I had paged through my What to Expect and I just wasn’t finding anything applicable. I trolled Amazon for books with the keywords “disability, special needs, Costello Syndrome” to no avail.

I was an outsider amongst outsiders. My daughter did not have Down’s, did not have Cerebral Palsy, no Autism, no Noonan’s. If you had told me when Willa was in the NICU that these were to be the syndromes I would envy…well…let’s just say you might not have made it out of the room alive.

But sometimes I do. And again, it’s for the inclusion they offer. For a knowing nod of the head once in a while in a waiting room, for a doctor’s experience and for the absence of the following common exchange, “She has Costello Syndrome.” “Huh. I’ve never heard of that…”

And then there was poop. We all know poop. It’s something to laugh about with other moms. They have nothing to feel weird about nor intimidated by, not wanting to say the wrong thing, not knowing where to put their eyes, or how much to ask, not wishing to offend. We all of us belong in the “parenting is gross” moments and I thank God for them.

Diaper changes.

Yet again, who knew?