The Person

What my previous blogs don't tell you is that Willow was an extremely, outrageously, uniquely cool baby.
It's an affliction of parents that we think our kids are the greatest, unrivaled. Forgive me for believing this wholeheartedly of my own child. I know I am extremely biased. I was always going to adore her, her extreme gorgeousness didn't increase that adoration, nor did her placid and joyful nature. I'd have loved her to the ends of the earth anyway. But just for the sake of painting you a picture, let me tell you a little more about Willow and maybe you can share a little piece of my delight in her.
There was something powerful about my daughter, something unrelated to me, a thing I can't claim as a reflection of me or anyone else. In fact, I often felt like Willow was in a sphere altogether removed from everyone around her. In hindsight I seriously wonder if it was because she was destined for a short life, that she was already half in 'heaven' even while she was the flesh and blood child in my arms, or perhaps she was surrounded by something felt but unseen. Whatever it was, I cannot explain the effect she had on people. She was born with enormous eyes. She was chubby cheeked and button nosed. She was cute, beautiful, but it was more than that.
All those who met her doted on her. Not a cheek-pinching, doe-eyed, baby-talking doting, but doting with a kind of attachment I could completely understand, being her mother, but one I also marveled at. Nurses in the cardiac ward of the children's hospital would call dibs on being her carer each shift. They bought her clothes and toys, carried her off for long cuddles or to rock her to sleep in their arms. I distinctly remember one nurse looking wistfully into Willow's eyes and saying, though she'd never used the word for another person before, that she thought Willow was divine. I remember the moment because it seemed so right. She touched people, made them marvel at her in some strange way and it is beyond me to explain that. I can only guess what it was that drew people to her.
Yes, I'm bragging, but you'll remember I said all of this had nothing to do with me. People tend to brag about their kids in a subtle way of providing a favourable reflection of themselves. I don't believe Willow got her magic from either Bill or I, I just believe she was born with it.
Some people call it 'having an old soul'. Willow was a baby, she learned to giggle and suck her toes and she soiled her nappy like everyone else does in the early years, but her soul was very old indeed.
I suppose it's actually harder to paint this picture than I thought. You would have had to have met her to get that strange feeling I always had around her, the feeling others had as well- a feeling of being near something other. I have met other children like this and all of them have since passed away, and maybe that says something.
Willow was also very smart. One of the things we were warned about when we found out she had HLHS was that babies with her condition were often less mentally advanced than their healthy peers. I don't know how she ever would have gone with algebra, but there was a definite wisdom about the way she silently watched people, laying very still, or the way she would stop her own crying and study me closely if I was upset, or the way her entire personality would burn like a bush fire the second she was away from the hospital. During our stays in Ronald Macdonald house Willow came alive with babbling and singing and maniacal giggling. She knew she was away from the place where she would feel pain, away from constant temperature checks, needles and general disturbances. Even the timing of her death seemed somehow self designed. She had held on through constant deterioration until both my parents, and Bill's mum and sister were in Sydney, been strong enough to open her eyes for one last look around, and then passed away the next morning. I strongly believe in the power of Willow's soul and I have enormous respect for her. Even just the fact that such a very special baby girl came to me, chose me to be her mum... Well, it is the biggest compliment in the world.
I'm sure you can imagine Willow's dad and I were her biggest fans. She taught us both countless important lessons during her life and had us firmly wrapped around her little fingers. I can't speak for Bill, but I can say that for myself, I felt complete with her in my life. Nothing else seemed to matter but getting her through the hard times and enjoying her personality in the good times. The hardest times were when I couldn't hold her at all, could only watch as she battled on alone.
All I remember of the first 5 days before Willow's Norwood operation is being in pain, physically and emotionally. Willow was sedated and confused, she often forced her puffy eyes open to stare at my face in a sleepy and bewildered way that reduced me to tears every time. All I could blubber was 'hey baby' over and over, because no other words would escape me. Bill, my Mum and I took turns to rub her leg and whisper lovings into the oxygen tank over her head. I couldn't be with her as much as I wanted because I was healing after the birth and quite literally exhausted.
Watching her wheeled into surgery was like taking a beating. Our first days together were so unsatisfying, so lonely and unlike motherhood that the idea of losing her in surgery was not only terrifying but seemed incredibly cruel. Any mother can understand the instinctual impulse to hold your child, to nurse them at birth, to be in contact with them always. I cannot explain the agony of the forced separation of those first days. I wonder if it's like the feeling for those who have lost a limb and yet still sense the phantom arm or leg, can still feel their fingers and toes. What a haunting and disturbing sensation that must be. I physically needed to hold my daughter but was unable and my body ached because of it.
I went through that pain many times during Willow's life. Now she's gone the pain is different because she is no longer suffering, I don't have that animal instinct to swat away the prodding hands, grab my child and bolt down the halls away from the threat of harm. It's a very different longing, I wouldn't say better or worse.
So. If you haven't been there, done that, this next bit will sound melodramatic. Willow was my other half. I've heard the term soul mate tossed around so much, it sounds so Hallmark. I'd never have used the term myself except that several months ago I read something that totally clicked with me, that a soul mate is not your ideal partner or a best friend who just instinctively 'gets' you, a soul mate is the person in your life who teaches you the most important, the greatest and often the hardest lessons, the one who helps you to grow. Your soul mate could be your worst enemy, your dad, your dog. Whatever. Mine was Willow.
I try to live by her example and be courageous. Willow never sulked. She would smile, tears still welling in her eyes, the second the needle was out, or as soon as the pain subsided. She was a very joyful child despite her circumstances. A very, wickedly cool little kid.