Friday, January 28, 2011

Today, Liljana would have been seven.






Seven years ago today I gave birth to Liljana O’Connor. The only time I’ve managed to slip in the remotest inkling of Slavic heritage in to any of my children’s names.  The Gaelic side soon took over, stomped their feet and it was all I could do to keep the rest from being called niamff, ruadhri or shiovion. All lovely names but they look funny (and I still can't spell them).

She came out, pink and screaming, aims flailing about like she was about to feel pretty pissed about being being yanked out like that. Except that she wasn't yanked. Nor was she supposed to be screaming and pink.

She was born at 23 weeks 6 days. That one day makes a difference. The tipping point of revive-or-not on our Australian shores is generally regarded to be 24 weeks. I went in to labour at 23 weeks and 3 days. I tried my damndest to keep her in but my cervix was having none of it. So out she came. I remember it, totally. I remember it all, despite the shock.  


She was 550g and perfect in her form. The weight of a tub of butter, but I didn’t see that. All I saw was perfect eyes, a head of hair the Kardashians would be proud of, ten fingers and ten toes. She was angelic. It is not what many would expect. I had no preconceived ideas. But I know it is not what many would expect.

She sounded like she had a mighty fine set up lungs on her too. But truth was she didn’t. Lungs are the main reason our premmie babies struggle so much to stay alive…

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I went in to labour not many days before. We were camping.

I’m not a camper. I’m a wrap-myself-in-a-doona-in-a-comfy-bed kinda chick. But it was hubby’s birthday and he was keen.  At 12 weeks I'd climbed Uluru, at 22 weeks I’d completed the Milford trek in New Zealand. For someone with a  bun cooking I was looking and feeling pretty healthy. I refused to eat anything that hadn’t been washed and re-washed 32 times and I’d drunk one Breezer in 5 months. I was serious about doing all I could for the baby on the inside but on the outside, life carried on relatively normally.

And then I felt some pain. An inkling. My back was a little sore. I was at work and I was feeling  strange. Something was wrong. I called the hospital.  I went in. The midwife checked me over. She didn’t check my cervix. But all was fine. She was careful. She was thorough. But she didn’t check my cervix. The doctor came in to have a chat. Looks like all ok she said. But she didn’t check my cervix either.

That night I got everything ready for my trip and went to bed. I woke up with a cramp. Damn constipation I thought. It comes with the preggers. A few cramps overnight and I was proud that I managed to just ride them out. Damn Serbian stoicness.

We hit the camping ground that we were sharing with friends. I wondered off on my own a lot. Damn constipation I thought again. I spent too much time hunched over on a stool by myself.  I complained very very little. All part of being preggers right? Right through to the next day. The pain came and went. Right through til about midday when I walked in to the water and the pain subsided. Strange I thought. I called the hospital again. You should come in they said. My stoicness, my stubbornness nearly held me back. My stupid Balkan stubbornness. But the pain was still there - except for when I was in the water. I couldn’t spend the next 14 hours sitting in the sea. So we packed everything up and got to the car. I lay my head in my partners lap as someone else drove. The car clock was directly in my line of sight. 40 minutes in the car. 40 minutes of watching the clock as I felt that stabbing pain, on the dot, every 5 minutes. 


Wholly fuck I thought. I’m in fucking labour. I’m in fucking labour. I couldn’t talk.

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Liljana spent 2 months in neo-natal intensive care.  I can’t put in to words what it’s like. I could try and say it's a mix of sterile metal, warm bodies and fairy dust. A magical place where magic things happen, and wonderful people come and go.  Where babies come and go. And sometimes babies die.

It is the place where Liljana was cared for, prodded, watched, nudged along, prodded again, held, nurtured, loved. Loved oh so very very much. I have no words to do justice to the compassion and commitment the nurses, the doctors, the other parents showed.

It was my haven. It was where I retreated to every day. Where Liljana and I got to hang with each other. Where I got to watch and hold her. As long as I washed my hands every 13 steps and almost always with the confines of a humidicrib between us. I could  spend the whole day there. The whole night there. It was all I wanted to do. Friends were caring, compassionate. But I didn’t want them. I was harsh towards many of them. I wanted my Liljana and I wanted her to grow and get better. She was strong as an Ox. She grew, boosted along by my breast milk which I was expressing around the clock. A regular little mechanical cow I was. Proudly I pumped and pumped and pumped. She was taking the steroids and I felt like I was on them. One foot in front of the other. Not flailing once.  She passed scans, tests. No brain bleeds. No apparent eye damage.  She overcame and came through a stef infection that was supposed to take her in hours. An infection that drew her grandparents from across the country to come and say goodbye. But she defied them and beat that stef infection off with pure tenacity. Balkan stubbornness. Her lungs , her weakest point, were being helped along with steroids.

Neo-natal intenstive care. Fairy dust was sprinkled all around her.

And then she died.

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Liljana was defying the trend of bubs born at her gestation (such a horrible word) right from the moment they pulled her out.

They told me at the delivery that they would lay her on my chest, and if she was took any breaths, at all, they would let her drift away on my chest. The expectation was that she would lay on me for the few minutes that she was likely to survive on her own.

But she defied them. She screamed, she turned pink, she flailed her pretty little chicken arms. “We’re sorry Di, we really want to give her a chance, she is remarkable – let us try and help her”.  A combination of euphoria and panic all around me. For my part there was only euphoria. Help her, yes, yes! My baby. My baby was going to make it.

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Two months in and they were tossing up whether to perform a tiny little operation.  In her favour was that she had doubled in weight. Not in her favour was that she had taken a turn a few days before, where they had to revive her. No-one was sure why but she’d come through. We had said all along, if she was going to be kept alive for the sake of being kept alive we were against it. Support her own fight yes. But force it? No. If she was ready to go, she was ready to go. 

They decided to perform the operation. They had been waiting for her to double her weight and she had. We waited in the waiting room.

The doctor walked in. It had only been 10 minutes. His eyes were red raw, his chest heaved and his sadness was palpable. It engulfed us. He didn’t need to talk. We knew. We went in to the theatre and watched our Liljana leave us. She had passed away during the anaesthetic and they kept her artificially breathing til we got there. Reacted? Too weak? Who knows. Cyndi Laupers True Colours played on the radio. Rory picked up Liljana and let out an almighty scream. He held her and cried a primal cry like I have never heard him cry before ..or since.

You with the sad eyes
don't be discouraged
oh I realize
it's hard to take courage
in a world full of people
you can lose sight of it all
and the darkness inside you
can make you fell so small

But I see your true colors
shining through
I see your true colors
and that's why I love you
so don't be afraid to let them show
your true colors
true colors are beautiful
like a rainbow

Show me a smile then
don't be unhappy, can't remember
when I last saw you laughing
if this world makes you crazy
and you've taken all you can bear
you call me up
because you know I'll be there


I sat in the corner and howled and howled like the weak incapable person I was. My baby. My beautiful baby. My beautiful Liljana was gone.

Fuck you god, fuck you universe, fuck you air and earth and sand and all that makes us who we are only to rip us apart bit by bit.

But not those amazing nurses and doctors in intensive care. You cried with us. You did everything with us. For the care and love you showed my little girl. My god. I have no words. NO. WORDS. I will never, ever, forget you. And I will never forget that each of you came to her funeral. 

They might as well have shut down the hospital. 

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They say when you have a baby born too early that your friends will shy away. Won’t know what to say, whether to congratulate you or not. This was not our experience. Our phone did not stop ringing, the flowers did not stop arriving, the love for us and for Liljana came wrapped up at the hospital ward from the moment she was born. From all but one person. Just one out of what felt like hundreds of remarkable and wonderful well wishers. I won’t forget any of you either. And I thank you from the bottom of my heart.

Today I caught up with some friends at the park with Isabella  -  my spunky little girl who I went into labour with exactly ten months later. 12 months to the day after I went in to labour with Liljana. Isabella, who turned 6 yesterday.

Liljana would have been 7 today I said. And then I started to cry.  I rarely cry for Liljana these days.

I cried. And I cry. My little girl would have been seven.

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Rory called me this morning. It’s Lily’s birthday today he says. I know I answer. He rarely mentions Lily either, except for when he has been drinking and he may let out that he thinks about her every day. Do you still do that I ask him. Every day he says. She will be my last thought before I die he says quietly. We don’t know what to say to each other. Each of us feels our pain on the inside.  If he was there with me, I would embrace him. He’s not there. I embrace my Isabella who smiles her magical smile up at me.

---------------------

How many children do you have people ask me. 3 I say out loud.

4, I say to myself.

But not today.  Today I will say it out loud. I have 4.

I have Liljana, Isabella, Cormac and Hamish.  They are all so very beautiful, amazing and wonderful.

Liljana isn’t here. But she is here with me. And with Rory. And with all those that remember her. And I know my dear beautiful friends that many of you do.

Today you would have been 7 Liljana. I miss you and I ache for you. I ache for you so very very much.

So very much.

86 comments:

  1. That moved me to tears. I'm thinking of you today. xx

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  2. I have a lump in my throat reading this. I'm so sorry for your loss. She sounds like a fighter, a trooper, and I wish she was still here for you

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  3. Thank you so much for sharing the story of your little trooper. She fought so hard to stay with you, and even though she is gone the love you all have for each other is palpable. Love and hugs to you and your clan D xxxx

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  4. I am crying with you and for you.
    I can see how beautiful she was through your words. xxx

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  5. amazing, so well written and heartfelt i miscarried at 12 weeks but nothing like holding your little girl . yes you have 4 children just as i have 3..

    happy birthday little one :)

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  6. A beautiful post. Full of love and gratitude and heartbreak. Thank you for sharing her with us. Thank you.

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  7. Thank you for sharing. Balling my eyes. My nephew was born at 26 weeks.
    Your one beautiful Mams x

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  8. This made me cry like nothing else. Di you have reminded me of how frail life can be and how precious life is.
    Thank you for sharing the story of your beautiful daughters oh so short life.
    Xx
    S

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  9. Tears pouring down my face Di, partly sorrow, partly admiration, partly in awe of what you have written.
    I can feel the love and I know she felt your love too. xx

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  10. That was absolutely beautiful. I had no idea. She sounds like one amazingly strong little girl to hold on the way she did. I'm so sorry she couldn't stay longer.

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  11. I have 3. And I've never cried like the time I held him.

    Fuck the universe indeed.

    Happy birthday to Liljana.

    Another brilliant post. Once again you make my heart soar and break at the same time. Just like life. Happy to know you.

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  12. Only those who have been there will know this, but in the scheme of things, in the loss of a child, there are always those who have been through something harder. We cling to such thoughts, to give perspective to untenable loss.

    My Jack was stillborn at 32 weeks. We got to hold him, spend a day holding his perfect little body, but we never saw him open his eyes, take a breath - he was gone before he arrived.

    I said at the time and, reading your incredible post, revisited those feelings all over again, that it would have been even harder to have seen him alive first. To have known him, heard him, and then to lose him. Infinitely harder.

    My love to you, soul sister, and your beautiful little battler Liljana. xxx

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  13. Di, I had no idea.

    To say that I am balling my eyes out is an understatement.

    You, you never fail to amaze me.

    I wish I could hug you.

    xxx

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  14. A beautiful post for a beautiful little girl. So sorry she's not here to celebrate her birthday. Thinking of you.

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  15. Thank you for being brave and strong and wonderful and sharing your journey. I have a daughter who would have been 7 this year as well.Your story reached out and grabbed me, and made me ache for you , your beautiful Liljana, for the world's loss at such an indomitable spirit taken too soon
    xoxo lovefrom another Mom in the trenches of heart ache

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  16. That was incredibly beautiful. I am in tears. Thank you for sharing her story. Happy Birthday Liljana xx

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  17. Oh gosh this made me cry big tears. A beautiful post for your little lady, I wish she could have stayed longer. xx

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  18. Sweetheart, that has absolutely broken my heart.

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  19. I wish I could have hugged you today. Xxx

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  20. Oh Di... I am reading this at work and tears are falling down my face. I was right there with you through all of this. I felt all the love and all the pain. What an amazing little girl and what an amazing mom you are. xo

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  21. Just a beautiful post, filled most of all with love.
    Thank you, and happy birthday dear Liljana.

    M2Mx

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  22. Di, you write so beautifully and from your heart. I'm lying in bed reading this and crying big tears for you and Rory.
    I haven't known you that long, but you are one of the toughest broads I've ever met (that's a compliment!) I never hear you complain about anything except about how your work takes up too much of your family time.
    No one expects you to be stoic all the time. There are moments where you can let go and your friends won't think any less of you...
    N x

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  23. Much love to you and your family x
    She may not be with us, but as long as she's constantly remembered by the ones that love her, she's never gone xx
    *bighugs*

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  24. Oh so beautiful. A beautiful post for your darling girl.

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  25. Hugs Di and one for Rory too. Your post is a beautiful tribute to your Liljana.

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  26. Oh Di. I am lost for words. Never am. I didn't know this and I am so sorry you and Rory had to go through this. I didn't know.

    Love you. Bern xx

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  27. Di, my thoughts and love are with you. My closest friend also lost her child after he was born at 24 weeks, she got to be a mother to him for 2 weeks, I got to meet him the day after he was born, so tiny but strong. Love again to you all, Angela xx

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  28. Oh my. Such love. Happy Birthday, Liljana.

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  29. Happy birthday Angel Liljana xo

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  30. OH darling, I am so sorry for your loss, but so glad your brave little girl fought so hard to stay with her family. Thank you for sharing, and I wish I could give you a big hug right now. xo

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  31. Di, You write so beautifully. My heart is heavy, yet also light with hope and spirit. Happy Birthday to your gorgeous girl. Love and big arms wrapping around you and your family x

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  32. Oh how I ache for you, enduring such a horrendous loss. However the memory lives on in your beautiful tribute, such a perfectly poignant post xx

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  33. It's my first stop by your beautiful place here and I know I will be back - your heart, your love, your own fight is evident and I am crying for your loss. With MUCH love to you and the loves in your life. xxxx

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  34. I'm crying tears for you Di, for your family and most of all for brave Liljana and all our other babies that went before their time. Beautifully written; achingly sad. Bless you xx

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  35. That is quite possibly the most beautiful and heartbreaking post I have ever read. Love to you all on your Angel Liljanas birthday. You are amazing.

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  36. That was such a beautiful and heartbreaking post x

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  37. Wow. Amazing post. Thank you SO much for sharing xo

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  38. This post was beautifully written. Your angel, as mine are always with us with a warm and loving heart.

    Here from AMB.

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  39. I am so sorry your lost your precious little girl. I am 25 weeks pregnant today and I just couldn't even begin to imagine your pain <3

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  40. that was such a beautiful post full of love. Happy birthday to Liljana

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  41. I hardly know what to say. Such beautiful writing, but I can feel the pain that still lies behind it. Celebrate your beautiful Lily, and the fight that she showed. Happy birthday Liljana.

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  42. Thank you for sharing this Di. I don't know what to say except that the ache in my heart hasn't ever gone away and I am so humbled by your incredible life. With love always, you and your family are always in my thoughts and in my heart. Stepha. xoxo

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  43. Di, beautifully sad. The family read and wept. Thinking of you and Rory. XXXX

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  44. and what a lucky girl she was to be born to such wonderful parents.

    Four, always four children you have. One is waiting for you to meet again one day.

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  45. Crying for you and your amazing family. I'm so very sorry for the loss of your beautiful baby girl Liljana. Sending love to you.

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  46. I gasped and tried to read through your post. Such strong emotional words. Birthday Blessings Liljana.

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  47. Beautiful beautiful post. Thankyou for letting us share her too. xx

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  48. What an amazing girl, your daughter Liljana.
    I am crying with you.

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  49. What a great way to celebrate what a special girl your Liljana was. I'm so glad that you had a good experience at the hospital and with your family and friends. Thank you for sharing your story.
    Happy birthday to your daughter.

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  50. Thankyou so much for sharing. I too lost my baby daughter. She was 4 months old. At 3 months old she went to hospital and tragically never came home. So much of what you have written was so real for me. I too can still hear that primal scream of pain and I too struggle with how to answer how many children I have. I hope that I can be as open and honest as you have been with my own blog and thankyou once again for a post that is raw and honest and real.

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  51. Oh, so sad but truly this is one of the most beautiful tributes I've ever read.
    Thankyou for sharing her story.

    I lost my son to SIDS at 48 days old, 14 years ago.
    I can so relate to what your husband said -- "she will be my last thought before I die."
    Our babies might be gone but they will never be forgotten.

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  52. What an amazing post. I soooo wish your sweet girl was here, right now with you. Thank you so much for sharing this beautiful, raw, sad, heart wrenching story with us all.

    And...what I came here for was to congratulate you on your win over at the Fibro. You soooo deserve this prize. Enjoy!

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  53. My god this has made me cry. You're an amazing writer, and I hope this story will help others in your same situation; it's a gift to share your beautiful writing.
    Happy birthday to Liljana.

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  54. Di, mother of four and dear friend of many fortunate people, you are such a blessing to us all, a teacher (whether you like it or not), and such a empowering strength - a mirror of your little angel Liljana.
    She was truly beautiful and she is living in you and Rory every day and I can't see either of you without seeing her. You are indeed a rare treasure in this world for imparting. Thank you will never be enough.
    I send love to those people out there who have so mercilessly experienced the loss of a child and pray they find some comfort in your precious words. For me you bring perspective, humility and a timely reminder of what our lives are in truth about. One day you shall meet again.
    Happy 7th birthday Liljana.

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  55. Oh Di, I've just read this post about Liljana. I've been crying. She was beautiful.. I'll always remember meeting her in the hospital. I was there having a check up and you took me in to the intensive care area to meet her. She was tiny but perfectly formed and gorgeous. Elly x

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  56. I cried reading this. I cannot begin to fathom how you feel.

    Happy birthday (I know I am late) to your beautiful Liljana.

    I want you to know that what you wrote gave me new appreciation for my 2 daughters, whom I will forever cherish more thanks to your heart wrenching story.

    Take care. xx

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  57. Dianne, I lick the salt of the tears I cry for your grief. This is heartbreaking and yet beautiful too. I am so sad, and so sorry that you had to go through this. Rory and You. I will post no platitudes, there are none, except that you are loved, your daugther was so incredibly loved in her short time here.

    You both are so amazing, and strong, and beautiful as parents. I can say no more, save to say as I have said before, Di, you have to get your work out. Please send this to a magazine, Woman's Weekly. There are many woman who may have been through this pain, in need of your articulate skills to help them grieve too.

    Big love and big kisses and Happy, Happy Birthday to your beautiful angel, flying around there with the fairy dust still sprinkled all about her xxxxxxxxxxxxxxxxxxxx

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  58. So sad; made me cry too.

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  59. Thanks for writing this, you write so beautifully. Your husbands thoughts about Lily made me cry. I also have a son who passed away after four and a half months in NICU. It was his anniversary on Monday. He had Down Syndrome but he was full term, it was Pulmonary Hypertension that took his life.

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  60. I'm visiting your blog for the first time after meeting you at conference. My baby got have a snuggle with you.
    Thank you for sharing such a heart wrenching story, I have tears streaming down my cheeks. Much love to you.

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  61. Hi gorgeous girl.... I was so excited to catch up with you after all these years on FB, which lead me to this post and my heart broke reading about Ljiljana. I am even sadder that so many years have passed since we've been in touch and I wasn't able to be there for you and your family.

    thinking of you
    Natasha xx

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  62. Hi Di, We met at the ABC (I am Al Tait's sister). I wanted to come and check out your blog - I had hoped that you had felt inspired enough to write again?

    Instead I found this heart-wrenching story of a little girl lost and my heart aches for your loss and your pain.

    You definitely have four kids Di. I hope you find the strength to stop whispering that. x

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  63. Hi Di, I've just found your blog. Your post about your dear Ljiljana is heart wrenching, but so beautifully written. Thank you so much for sharing your story. xx

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  64. Oh Di.

    You are ... magnificent. You are a beautiful Soul, in the world. My heart to your heart, as I read this and cried tonight.

    Love.
    -eden
    xox

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  65. It’s like you read my mind! You seem to know so much about this, like you wrote the book in it or something. I think that you could do with some pictures to drive the message home a bit, but other than that, this is great blog. A great read. Ill definitely be back.

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  66. Thank you. Thank you for your story and for the courage to have told us.

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  67. I am not one of those people who shed a tear easily. But here I am weeping. xx

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  68. Beautiful, like a rainbow. xxx

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  69. I just stumbled upon your blog and this is the first post I've read. I'm in tears and I'm so sorry for your loss.

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  70. Gosh this post i just beautiful.
    So beautifully written and so full of love.


    M2M

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  71. This made me cry. You wrote so beautifully, straight from the heart. I wish things could have been different.

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  72. You write so beautifully. Happy birthday Liljana.

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  73. Dear Liljana O’Connor in tradition of your ancestry I would just like to say Lá breithe sona, Srećan rođendan & Happy Birthday.

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