Latest / The Letterbox Podcast / Dear Medical Parents| Letter 6: A Family’s NICU Story & Tiny Tickers UK Blog Post

Transcript

Dear Medical Parents| Letter 6: A Family’s NICU Story & Tiny Tickers UK Blog Post · The Letterbox Podcast

0:00
Hello and welcome back to the Letterbox podcast.
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I'm Lucy. And this is a place where people
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share real letters that they've written about the things mean
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the most to them. Today is letter 6 of Catherine's
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story. By this point, we've heard
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Catherine write to the people who were there right beside her
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through her daughter's journey. But today's episode is slightly
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different. Alongside Catherine's letter,
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I'm also going to share with you a blog post that she wrote for
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Tiny Tickers. It's Auk charity supporting
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families affected by congenital heart disease.
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And it was this particular blog post that led to me and
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Catherine finding each other. And it's where Catherine's idea
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for this miniseries came about. So I just want to say thank you
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so much to Tiny Tickers for allowing Catherine to share the
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blog post as part of this series as well.
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So here it is, the letter that she has written to other parents
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going through a Niku journey, followed by the blog post she
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wrote for Tiny Tickers. Dear medical parents, Niku mums
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and dads, Piku mums and dads, parents of heart babies, parents
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whose children have been very, very sick.
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I'm sorry. I'm sorry that you're feeling
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all of the feelings, that you're terrified, that you're trying to
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stay calm, that you might feel like you can't quite access all
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of the emotion yet. That you might feel like you
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need to split yourself into 500 pieces so that you can be
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available to all of your children at once.
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That you're worrying about the child in front of you, the child
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at home, your partner, your family, and what all of this
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might mean for all of you. I'm sorry that sometimes you try
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to do something completely normal and realise you can't
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anymore. That maybe a song comes on and
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suddenly you can't listen to it because it takes you somewhere
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you weren't expecting to go and you're crying before you even
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understand why. That you look at your children
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together doing something maybe completely ordinary and
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completely lovely, and the emotion nearly knocks your
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breath out of you. That some days you do feel
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incredibly lucky, and some days you feel incredibly sad,
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sometimes both at once. I want you to know that there's
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a community here that sees you, that understands some of this
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strange, frightening, complicated world.
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It's not a club any of us wanted to join, but here we are.
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And perhaps if we're here, we can stand together.
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I originally wrote this letter for tiny Tickers for parents of
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heart babies, but as I wrote it, I realised that so much of what
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I was trying to say reaches beyond the CHD.
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It belongs to Niku parents, Piku parents, parents of children
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facing serious illness in all sorts of circumstances.
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So I wanted to share it here too, in the hope that it might
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reach someone who needs it. I don't think these letters are
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meant to be profound. They're not here to teach you
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anything. They're not instructions for how
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you should cope. They're not a guide for how you
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should or shouldn't feel, they're just simply an attempt
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to say, this is how it felt for me, this is what I noticed, this
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is what I struggled with, this is what I loved, this is what
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frightened me. And perhaps, if you recognise
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even a tiny part of yourself in them, it might make things feel
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a little less lonely. Because I'm finding this
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surprisingly tough to do. I'm used to hiding somewhere
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behind the veil of psychology in the space.
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I can talk about trauma, I can talk about uncertainty, I can
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make sense of experiences, and I can understand what's happened
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to me and to us as a family through my profession.
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There's something strangely safe about that.
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I can choose the parts I share, I can give them a framework.
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I can be the psychologist. But this feels different.
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This feels like stepping out from behind that veil.
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It feels vulnerable. It feels like opening up my
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heart and mind without the protection of professional
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language. And I'm not entirely sure what
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it feels like to do that yet. So I'm sharing these letters
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quite deliberately. Not because I have the answers.
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Not because I think our experience is more important
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than anyone else's, but because I know how lonely it can feel
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when you're living inside something that other people
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can't quite see. And if hearing someone else put
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words to even one small part of this makes you feel a little
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less alone, then they're worth sharing.
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So to the medical parents listening, I see you.
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I'm with you. And whether you wanted to be
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here or not, we're in this strange little club together.
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That was Catherine Theta to other parents going through a
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Niku journey. And now for the blog post that
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she wrote for Tiny Tickers. From my heart to yours, nobody
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prepared us for this. I never expected to write about
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this publicly, but here I am. Hours after our daughter was
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born, she was diagnosed with a congenital heart condition.
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In an instant, our family entered a world that most people
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never see. Hospital wards, surgeries,
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intensive care, uncertainty. And alongside all of that,
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trying to support her older sibling at home.
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Trying to keep something resembling family life intact.
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Trying to find the right words for things that no family ever
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expects to face. I'm a clinical psychologist.
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I've spent years supporting individuals and families through
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some of the most difficult experiences of their lives.
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And yet, knowing the psychology didn't stop me feeling it.
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The fear, the helplessness, the guilt of leaving one child to be
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with another. The particular exhaustion of
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holding everything together when falling apart just wasn't an
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option. The strain on our relationship,
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the uncertainty that settled somewhere deep and didn't shift
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for a very long time. I felt every bit of it.
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What my understanding did give me eventually, not immediately,
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was a framework, a way of making sense of what was happening
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inside me and inside our family. A way of knowing what to expect,
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and in the fullness of time, a way to begin to process it.
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That's the difference between knowing and understanding.
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And it's exactly why I'm writing the books I wish we'd had from
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the very beginning. There's so much focus, rightly
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so, on the medical journey, the diagnosis, the procedures, the
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surgeries, the follow up appointments.
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But so much less on this. The worry, the guilt, the grief,
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the separation, the uncertainty, the impact on siblings, the
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strain on relationships, the exhaustion of keeping it all
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together. The way fear can settle into
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your body and quietly become your baseline.
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These are the parts that don't come with a leaflet.
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These are the parts that families are often left to
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navigate alone, not through neglect, but through a system
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that is understandably focused on the physical.
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And yet, the emotional journey is happening alongside every
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single medical moment, quietly, relentlessly, often without a
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name. Here's what I do know, both
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professionally and personally. When our children are seriously
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ill, our nervous systems shift into survival mode.
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We stop thinking about the future, and we manage the next
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hour, the next ward round, the next surgery.
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We function at a level that, frankly, astonishes us in
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retrospect. We do this because we have to.
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But survival mode was never designed to last forever.
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And for so many heart families, it does.
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Long after the crisis, long after the surgery, long after
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the discharge, the nervous system keeps running in the same
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programme, scanning for danger, waiting for something to go
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wrong, braced for the next phone call, unable to fully exhale
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even when things are, for now, OK.
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This isn't weakness, this is not something wrong with you.
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This is a nervous system that learned to protect you and just
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never got told it was safe to stop.
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Understanding that even just naming it can make a difference.
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There's something specific I want to name here because it
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doesn't get talked about enough. The weight carried by the parent
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or parents holding everything together.
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You're managing your own terror while managing your child's
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care. You're present on the ward while
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worrying about the child at home.
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You're answering questions from well meaning family and friends
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whilst processing information you barely understand yourself.
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You're existing in two worlds simultaneously and there is no
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map for this. For many families, and this was
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true for us, there is also separation.
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One parent at the hospital, sometimes one parent at home,
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grandparents stepping in, everyone doing the most
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important thing they can do or feeling like they're failing at
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the other one. The relationship strains that
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come from this can be real. It's not a sign that anything is
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truly broken. It's a sign that you're both
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carrying something enormous separately, without a hand or
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time to hold. For others.
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It makes you feel stronger together immediately.
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Both matter, and it deserves to be named.
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I wish someone had told me that fear and love can exist in the
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same breath and neither cancels the other out.
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That functioning is not the same as fine.
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That the sibling at home who seems OK probably isn't.
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Not completely, and that's OK. That feeling grateful and
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devastated at the same time is not a contradiction.
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It's what it means to love a child who is so fragile that the
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emotional journey doesn't end when the medical crisis does.
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For many families, it's just the beginning.
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And that understanding what's happening both inside your body
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and inside your family doesn't make the pain disappear, but it
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does make it more bearable. It gives it shape, and shape
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when everything feels formless and terrifying is something to
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hold onto. These are the things I know,
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both from years of clinical practise and lived experience,
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that generally make a difference.
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Name what you're feeling, even imperfectly.
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You don't need the right words, You just need to say something
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out loud to someone safe, or even write it down.
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Naming an emotion even clumsily begins to regulate that nervous
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system. It moves the feeling from the
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body into language and that's where we can start to process
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it. Give yourself permission not to
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be OK. Functioning is not the same as
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coping. You can be doing everything that
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needs to be done and still be in enormous pain.
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Both things are true. Allowing yourself to acknowledge
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that even privately matters more than you might think.
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Remember the whole family, The sibling who is being so good,
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the partner who seems to be managing fine, the grandparent
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who keeps saying they're not worried or focusing on helping
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you out. Everyone in the family is
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affected. Everyone deserves space to feel
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it, even the ones who look like they're holding up, including
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you. I want to say something specific
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about siblings here, because this is something I felt acutely
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as a mum and as a psychologist who knew too much to be
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reassured by the things people say to reassure you.
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Our son was not yet 3 when his sister was diagnosed and people
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meant it kindly, they really did, when they said he'll be
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fine. He's too young to understand,
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but I knew differently. He didn't need to understand to
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feel it. He felt the separation from me,
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from his normal, from his dad, from his routine, from his mum
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who was suddenly somewhere else and then home but not quite
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present. He felt the anxiety in the
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adults around him, because children are exquisitely attuned
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to the emotional atmosphere around them, even when we think
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we're hiding it. He felt the absence of his
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sister without having the words or the understanding to make
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sense of where she was or why everything felt different.
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He was being beautifully cared for by his grandparents.
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He was loved and safe and looked after, and he was still
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experiencing something real. Both things were true
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simultaneously. He was largely OK and is now,
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but largely OK and completely unaffected are not the same
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thing. And I think we do siblings a
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disservice when we assume that because they're young or because
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they're being well cared for, cared for, or because they
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aren't asking difficult questions, that they aren't
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feeling the weight of what's happening in their family.
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They are in their bodies, in the behaviour, in the way they cling
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a little tighter or act out a little more or go very, very
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quiet. They just don't have the words
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for it yet. And I want to be really clear
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about something here, because I know how easy it is to read all
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of this and feel a fresh wave of guilt on top of everything else
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you're already carrying. Please don't.
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This isn't about failure. Not yours, not anyone's.
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Allowing your child to feel sadness, fear, or confusing
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emotions is not something that's gone wrong.
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It's not a sign that you've let them down.
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It is, in fact, an inevitable and even healthy part of being a
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small person in a family navigating something enormous.
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Children are not as fragile as we sometimes fear.
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They are remarkably emotionally capable, even the very young
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ones. What they need is not to be
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protected from every difficult feeling.
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What they need is someone to sit beside the minute, to name it
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gently, to say in whatever words fit their age.
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Something hard is happening here in our family, and it's OK to
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feel sad or worried or confused about it.
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I feel that way too sometimes. That simple act of naming and
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normalising is one of the most powerful things any parent can
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do. You don't need to have all the
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answers. You don't need to protect them
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from every hard emotion. You just need to let them know
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that their feelings make sense and that you are right there
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with them. Don't underestimate what your
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child can hold when they're supported to hold it, and don't
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underestimate what you can offer them, even in the middle of your
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own fear and even when you feel like you have nothing left.
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The fact that you're thinking about their emotional world at
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all, even while managing everything else, says everything
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about the kind of parent you are.
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With the right support, the right language, and a little
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knowledge about how children experience and process emotions,
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you can help your child navigate this together.
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And that togetherness, that honest, gentle, age appropriate
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conversation about hard things. Is it self protective for them
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and for you? Take care of your nervous
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system. Sleep when you can, eat when you
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remember. Accept help when it's offered,
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even when it feels easier to just say you're fine.
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Small acts of physical care genuinely help to regulate a
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nervous system that's under stress.
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It's not self indulgence, this is maintenance.
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You cannot pour from an empty cup and you are needed for the
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long haul. Seek support early, not just in
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crisis. Psychological support doesn't
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have to wait until you're at breaking point.
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In fact, it works better when it doesn't.
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Talking to someone, a psychologist, a registered
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counsellor, A trusted professional while you're in the
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middle of it can make an enormous difference to how you
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come through it and to who you are on the other side.
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You are not alone in this. Looking back now, I am struck by
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how much can change, how far a family can come, how much can be
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survived, processed, and eventually integrated into a
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life that still has joy in it, even if there are health
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challenges ahead. I'm also struck by how much
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difference it makes to feel less alone.
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And that's what Tiny Tickers offers Heart families, a
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community that understands your world in a way few others can,
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who know the particular texture of this fear without you having
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to explain it all again, who get it.
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Their groups and resources helped us as a family a lot, and
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it's what I hope the books I'm writing will offer too.
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Not answers, because some of this doesn't have any answers,
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but understanding companionship and the knowledge that what
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you're feeling makes complete sense because it does every bit
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of it. If any of this resonates with
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you, whether you're in the thick of it right now or processing
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something that happened months or years ago, I would love to
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hear from you. You are not alone.
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Another beautiful, moving, heart wrenching letter from Catherine.
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Catherine always said that she wanted these letters to reach
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the people who needed the most and to help people feel that
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they're not alone in these journeys.
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Like she said at the end of her letter, no one chooses to be on
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this journey. No one chooses to be part of.
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Like Catherine calls it this strange little club, but you are
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in it together. You are not alone.
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But there will be people out there who haven't yet found the
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support from other families. So please, let's help this
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letter travel. Let's help this episode get to
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as many people as possible because hopefully it will land
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with somebody who really could do with hearing it today.
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So thank you again to Catherine for another incredible episode.
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And again, two tiny tickers for allowing Catherine's writing to
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be heard on here as well. There was just one letter left
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to come from Catherine. And when we were planning the
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order of these letters, she said she was sure that this one
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needed to be the one to end the series.
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So please make sure you are pressing that follow button so
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you don't miss when Catherine's final letter goes live.
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If you have been listening along since the beginning, come back
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tomorrow for the final one. I will see you there.
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And if you've only just found this series, I really encourage
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you to go back to letter one. These letters are meant to be
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heard together. So thank you again to Catherine,
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to Tiny Tickers, and for all of you listening out there.
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I will be right back here tomorrow.
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Until then, I'm sending you all my love, Lucy.