Friday, October 26

Tiny no more

Recently I have been trying to do some sorting out. As happens when you have a small child, odd tiny socks and vests you never bought breed and end up EVERYWHERE. Today I found a wee bootie wedged behind the clothes horse and was momentarily caught stock still at it's size. It was so small. Yet it was easily that for a 3 month old child; needless to say it fitted mine up until around her first birthday. When I find these small items of clothing aimed at the first few months of life, I then have to further pinch myself to remember my baby was even smaller. Seriously small. At 1090g (just under 2lb 6oz), little bigger than my hands. Her eyes barely open, unable to breathe for herself and so frail. Her first picture a few hours after birth is a little shocking. I treasure it, but it is not a cute baby picture by any means. I love it because she is my baby but I can't quite imagine it on a board with other baby pictures of squashy newborns or even pictures later down the line of NICU.

When I find tiny things, I always have a pull to go back to our NICU memory box and find her first nappy, first small, even for doll's clothing. I find it staggering to look at them and think that baby, my baby survived and thrived. That babies, some half her weight can too. I can't explain the pull to keep looking at these things, keep reminding myself. In many ways it is like poking at an open wound. God, it hurts when I think of the pain and suffering she has been through. The mental pain and suffering I and my family have been through. The scars we are left with.

I find myself afraid of forgetting, alongside paradoxically being desperate to move on. It has defined things for so long and is really my only experience of motherhood. For so long I wished we could have been one of the average statistics, the "normal", the tears-free, the one where you knew your baby would be there the next morning. Now two years down the line, we are in a little limbo. In part, it is oceans away. In part it is still with us every day in form of some problems or delays or memories. In a strange and not-entirely welcome way it has become my normal, which is what I think I am afraid of letting go of. Instead of doing all the things I expected to do as a mother, I did lots of hospital based things and seeked out people in similar situations for vital support. Now we are in a position to mix and match effectively, I find I often flounder. It feels disloyal, like we are turning our back on all we went through that made sure I had the daughter I have here today. Which is so silly; we all know children grow up, lives move on and people grow with change. Being able to do some "normal" things is homage to the doctors and nurses who fought alongside my special girl.

Sometimes prematurity, illness or additonal needs feels like a secret world, one you can only imagine until you suddenly have the key and being in that walled place is a thousand times more overwhelming and vivid. In some ways, life will never be the same again. "Prematurity is an experience no one really thinks about when they embark upon the adventure of parenthood. And it’s not one anyone wants. But once fate flings such a twist our way, we find ourselves part of the secret society we never asked to pledge." Finding tiny keepsakes feels like a mascot of this new club, a lifelong allegiance with a terrifying induction. It is less about clothes, or first dummies, just that these firsts are so different to the firsts we might have anticipated. But they are still firsts, to be cherished alongside the grievances. But it isn't easy. For the first year, I so wanted to forget. Now I can't bear the thought of forgetting.

1 comment:

  1. Amy, have I ever shared with you the story/poem/note I have posted on Facebook called "Holland"? A friend shared it with me when I was first struggling to even begin to come to terms with the circumstances of Adam's birth and what we were facing for the future. Hopefully, it might help you too as you're trying to work out the next step on your journey. Char x


    Emily Perl Kingsley.
    c1987 by Emily Perl Kingsley. All rights reserved
    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
    But there's been a change in the flight plan. They've landed in Holland and there you must stay.
    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.