Latest / The Letterbox Podcast / To My Baby | Letter 1: A Family’s NICU Story

Transcript

To My Baby | Letter 1: A Family’s NICU Story · The Letterbox Podcast

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  Hello and welcome back to the Letterbox podcast, the place
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  where people share the real letters that they've written
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  about things that matter most to them.
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  September is Niku Awareness Month.
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  That's something that some of you may not have come across
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  before and for others is a huge part of your life.
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  This month is a time to raise awareness for neonatal care and
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  perhaps most importantly, to recognise the babies and
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  families whose lives have changed by those first days,
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  weeks and months in hospital. To mark it, the Letterbox
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  podcast is showing something a little different.
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  For the next 7 days I will be sharing 7 letters from one mum,
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  each written to a different person or part of her family's
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  experience of Niku. When Doctor Catherine first said
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  that she wanted to write for the podcast, I think she knew it
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  wouldn't just be one letter. There was clearly too much to
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  say, too many emotions to put into a single letter, and too
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  many people's lives who've been touched by their time in
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  hospital who deserve to be acknowledged.
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  Catherine is a clinical psychologist, writer and mum of
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  two. Her daughter was diagnosed with
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  a serious congenital heart disease just hours after an
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  emergency birth. She'd stopped growing during
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  pregnancy and was born at a low birth weight, requiring
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  significant support at birth. At just two weeks old, she was
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  readmitted to a high dependency unit.
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  Catherine's professional and writing work now focuses on
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  supporting families navigating serious childhood illness, and
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  over the next 7 letters, she shares a glimpse into what that
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  experience was like, not just for her, but for the people who
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  were around it too. There will be letters to the
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  babies at the heart of it, to those who cared for the family
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  and to the parents as they are before and after their
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  experiences of Niku. So before I share Catherine's
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  first letter with you, make sure that you are pressing that
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  follow button wherever you are listening.
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  Not only so that you don't miss any of these incredible letters
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  that we're going to be sharing over the next seven days, but to
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  show your awareness and support for the babies, families, carers
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  and those working and supporting anyone who has an experience of
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  having an unwell baby. So here it is, read and written
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  by Catherine, the letter she's written to her daughter.
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  Dear baby girl, welcome to the world.
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  It's not quite how any of us imagined it or planned it to be.
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  I feel strange. I know I love you.
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  I couldn't love you more. But everything isn't fitted
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  together like it should and the puzzle is all jumbled up.
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  Maybe we've lost some of the pieces.
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  I remember the first time they found something wrong.
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  You were just hours old, 8 maybe, And they came around to
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  do the newborn cheques and found your oxygen levels weren't quite
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  right. There was a murmur, and for some
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  reason I had this strange optimistic feeling that
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  everything was going to be fine. It was such a dichotomy from
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  when your brother was born. With him, I was so anxious, even
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  while everyone reassured me that all the tests were normal.
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  With you I wasn't worried. And then nothing was normal.
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  Your hip check came back wrong too.
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  Dysplasia. Another little piece breaking
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  away from the picture I thought we were going to have.
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  And then the diagnosis. Long words.
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  New medications, new teams, cardiologists, liaison nurses,
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  people we were told we would get to know for years and years.
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  People we would sometimes see more than our friends.
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  And then I remember the doctor saying she will need surgery.
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  And I just let the tears come. I wasn't really scared I would
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  lose you then. I was just desperately sad that
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  you would have to go through all of this, that your tiny body
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  would have to know pain and procedures and hospitals before
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  it had even really known the world.
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  And somehow we started building a life around this new feeling
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  of terror. We still had to make normal life
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  happen. We tried baby girl.
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  I wanted so desperately for you to have what your brother had.
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  Baby classes, days in cafes, getting lost in each other,
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  watching you grow without constantly wondering when the
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  next appointment would be. Instead we spent hours in
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  hospital comforting you through procedures and wiping your tears
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  and then when you finally slept, allowing mine to drip onto you.
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  But we tried to make the hospital feel a little bit like
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  home. We kept our routines where we
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  could. We made bath time special.
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  I sang you the same songs every night.
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  Here comes the sun. I wanted you to know the rhythm
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  of us. I wanted you to feel loved and
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  comfortable and safe, even when everything around you was
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  unfamiliar. You were still my baby.
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  You were still having a childhood.
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  I wanted some of it to feel ordinary.
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  Every discharge felt like we were being handed our normal
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  life back, only to realise it didn't quite fit anymore.
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  I remember going back to baby group, new mums, different
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  children, having to reintroduce ourselves and tell the story
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  again and again. Being asked why you were so
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  small, if you were crawling yet how old you were.
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  Oh, is she really? Mine's younger than her and
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  she's bigger. Isn't she cute?
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  Isn't she gorgeous? Isn't she tiny?
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  And I would smile. Sometimes I explained, sometimes
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  I didn't. Sometimes I just agreed because
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  explaining everything felt like too much.
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  And sometimes I watched them desperately try to paddle out of
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  the conversation, reassuring me she's all right now.
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  Isn't she, though? No, not really.
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  It's lifelong. And suddenly there was this
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  enormous chasm between me and these other new mothers.
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  It felt like they had the ordinary version of motherhood
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  and I was standing somewhere else.
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  But the strange thing, baby girl, is that cousin was never
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  between me and you. Because you were never the thing
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  that was wrong. You were never the feet piece
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  that didn't fit. You were the most perfect thing
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  in all of it. I would still do anything to
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  trade places with you, to make it me whose life was in danger,
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  to make it my heart that was breaking, really breaking,
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  broken. I'm sorry that I couldn't do
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  more. I couldn't grow you right.
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  Or maybe I did something wrong. I'm not sure.
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  Probably not everyone will tell me no.
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  But it feels that way because underneath it all, I feel like
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  my responsibility was to make you, to grow you, and to keep
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  you safe and strong. And I'm sorry I couldn't do that
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  for you. But I will do anything and
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  everything that you need. I will learn.
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  I will ask the questions, I will understand the long words.
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  I will be here. Your brother is out of this
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  world, in love with you. Even while we were stuck far
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  away, separated by all of this, he couldn't wait to have you
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  home. He wasn't angry that you'd taken
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  me away or that Daddy wasn't always home.
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  He just wanted you to be OK. He couldn't wait to be your
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  proper Big Brother, to show you his toys, cuddle you, and share
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  goodnight stories with you. And I couldn't wait either.
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  You're clearly beautiful. Everybody says it and yes you
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  are, but I found myself getting annoyed when that's all people
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  saw because I wanted to say yes. She's beautiful but my God isn't
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  she strong? She is brave, courageous, calm.
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  She is so much more than beautiful.
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  You learnt to laugh in hospital, just a few months old at the
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  play therapist doing peekaboo between the cell like sides of
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  those cots. Before your surgeries, before
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  your sepsis, before things got really tough.
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  You always smiled, you were joyful even when it was hard.
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  Your little body kept fighting everything.
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  You just kept living. You are so tenacious and I was
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  never scared of your ability when you went into surgery
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  because I could see how you were going to take on this world, God
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  help it. You were a force to be reckoned
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  with and I'm glad of that. But I would still take it all
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  away. Of course I would.
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  Daddy would. Your grandparents would.
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  Probably even your brother would, because none of us want
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  to see you sore or risk not having a life with you here
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  anymore. You are precious.
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  You are so loved and we are in awe of you.
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  As you grow, I hope the clinics and hospital stays become fewer
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  and farther between. I hope people comment less on
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  how small you are or how blue you are.
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  And I hope this becomes less of your identity, less of what
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  people ask about, less of who you are.
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  Because you are so much more than all of this.
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  I can't wait to see all those other facets of you grow and
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  flourish. To watch you become more and
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  more yourself. To see everything you are emerge
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  beyond the wires and tubes and appointments and questions.
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  To bask in all that you are and all that you bring to this
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  world. We are so lucky to have you and
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  we are so, so proud of you. And that incredibly emotional
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  letter was Dear Baby by Doctor Catherine, the 1st letter in our
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  Seven Day Niku mini series. Thank you so much Catherine, for
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  sharing that letter and for reading it.
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  I know from speaking to her how emotional it was not just to
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  write these letters, but to actually sit down and say them
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  out loud. And you can tell that from the
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  way she reads it. I've spent a lot of time with
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  these letters over the last few weeks.
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  And I promised Catherine that I will help these reach as many
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  families as possible who might need to hear them, but also
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  reach as many people as possible who simply want to know more.
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  So if you could help me to do that, if you could follow the
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  podcast, if you could send this episode on to somebody else, we
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  will be so grateful. So make sure you come back
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  tomorrow for episode 2. Until then, all my love Lucy.