Happy 21st My Baby K

What do you do when your child turns 21? Maybe a party? Perhaps reminisce over a job well done with your husband and those significant in your life.

What do you do when that child isn’t with you anymore?  This is something I have never known.

Do you grieve even more horribly than before? Do you fall into the depths of depression wishing that things were not the way they are?

Do you keep yourself busy and try to ignore the day?

Do you celebrate the birthday that would have been?

For the last 4 1/2 years I just haven’t known. I know people will say you do what you feel, but this doesn’t really help me. Nothing feels right.

21 years ago my beautiful girl was born. I knew thing were not right straight away, they wouldn’t let me hold her. They lied, and said that she was fine, but because I had needed an emergency caesarean she would be looked after in the nursery. I begged that she be allowed to stay with me, even with the epidural in, I tried to pull myself with my arms up to sitting while they stitched my stomach. I was quickly ordered to lie back down and stop being silly.

Every hour through the night I asked the nurses to bring my baby, every hour they told me lies. She is not maintaining her body temperature, she doesn’t have great colour. We are keeping her so that you can get some sleep. At about 3.00am they told me that she had stopped breathing and she may not survive.

How is it that my healthy, full term baby, of 8 pounds is hanging on so thinly to life. The baby I haven’t even held.

I am wheeled down to see her, through all the tubes, machines and monitors I see my gorgeous first born daughter. We have named her Kaela Elisia. I still can’t even touch her.

She is the biggest, fattest, healthiest baby in level 3 neonatal intensive care… ironically she is also probably the one who is the least likely to survive, and the most likely to the highest level of support needs during her short life.

Thankfully my daughter was a fighter. I adored my gorgeous girl and although she never spoke, I always knew exactly what she needed. She was never able to walk, but that’s okay because I loved to carry her around with me anyway. She couldn’t sit upright by herself, but she could cuddle into the corner of a lounge with me just fine. She was the happiest little girl, even total strangers smiled at us in the street.

Her first birthday was a mixture of emotions for me. My baby was still precariously hanging onto life. I was more grateful for the year I had spent with her than for any other year of my life to date. However, internally I already grieved for the day I would lose her. I grieved for her lost future. She would never speak, eat (tube feed), sit up, walk, play with other children, marry, have children, have health, have a life! I didn’t know what the future would hold.

I decided to ignore the grief and my broken heart and just celebrate!

It had to be the biggest first birthday party I could manage with a sick, disabled child. Our party completely took over the grass hill on the North side of Bondi Beach. Every family member and friend was there to celebrate with us.

That party and the support of family was what allowed me to take a deep breath in and just look at the positives, the fact that I had a future with my baby. There was no more wishing for what might have been. We just celebrated for what we had, a gorgeous happy girl who would fight all her life for a short stay with us. I had a wonderful family who only saw the positives, who gave me strength.

From that moment I took the grief and push it aside to be dealt with at a later date. A day when she didn’t need me anymore.  We had too much to deal with.  The most heart wrenching surgeries you could imagine enduring, learning how to inject my baby with Valium if she continued to have an epileptic fit and stopped breathing before and ambulance arrived, dressing her stomar, physio to stop her limbs curling as her limbs grew and the tendons, and ligaments didn’t.

My baby passed away just before her 16th birthday. She was still the same as the day she was born, only bigger. She had a double bed, so I could jump in with her if she was ill. She was still the most gentle, happy soul.  Naturally everyone loved her.

So now it is her 21st birthday, I only feel loss. Loss for the baby I had. Loss for the person she was, loss for the person she may have been.

I don’t know what to do on this day each year. I can’t go to the cemetery, as I can’t bare to remember her that way. I don’t believe in God or heaven so there is placating me with those myths.  Intellectually I want to spend the day adoring my four other gorgeous children . Mentally I want to just curl up in a ball and cry for my eldest baby girl.

So what do I do?

For the moment, it is a glass of wine, some tears and this story.  Next year, and all the years after I think it will try and plan something special for the other children. I will choose to try and block some of the emotion.  I am told it gets easier but I just don’t know how this could be true.

I haven’t been able to post images due to a technical problem. I will come back to it when the problem is resolved so I can provided a proper memorial to my little girl.

Kaela Elisa

18th Feb 1991 – 13th Oct 2006

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  1. There are no answers love just know we all miss our beautiful little Kaela, she taught us so much.x

  2. I am at a loss for words. I don’t believe there is anything more tough to endure than the loss of a child. I don’t believe that with time it gets better, I just believe we find new ways to move on with life. I am so sorry for you and all that you have been through and the enormous loss you have felt and will continue to feel. I don’t believe Kaela is gone, I believe she is in heaven where she has everything she missed out on here on earth. I’m sure everyone in your family is grieving as you approach her 21st birthday, but none more than her mother and I am so sorry for you. xx

  3. Thinking of you, your little angel was special to us all.

  4. You and I have so much in common Julie, it’s uncanny. My son was born a year later or just under… a genetic condition. Looked healthy on the day of his birth, and apgar score of 9. Very sick by day 12 and severely dehydrated. I’m very lucky that he is still here, he will be 21 next January. But it’s so much harder since he left home as I can’t keep an eye on him like I did and I do get very stressed at times still. Always concerned that something dreadful will happen. I think it’s only normal. I sent a link to his story in email.

    Take care of yourself. I think you should do something special on your daughters birthday…she would only want you to be smiling and remembering the good times on her special day.

  5. Thank you so much for your thoughts and kind words.

    It means so much to be coming from three mums.

    You never know exactly how much you are opening your heart up when you choose to have a child.

    Even healthy children give mum’s so much to worry about, as you would all know!

    I am pleased I wrote the story, it was really nice to share 🙂

    …but I would not have had it any other way 🙂

  6. Thanks Donna,
    You are a fantastic mum and aunty. I hope you liked my tribute to K

  7. Kaela Elisa is looking down at us as we speak, she was strong and she would like to see her family strong and continue to celebrate the beautiful times you spent with her. We all miss her.

  8. Hey little sister..

    Wow, for someone who always has so much to say, I find myself at a lose for words, and wanting to be very quiet.. Lisa and I are both crying on the bed, and I find myself thinking..

    Wow has it been so long.. 1991.. Such a bright little star she was..

    I remember sitting on your couch holding her, playing with a squeakily toy frog, cause she seemed to like that at Sir Thomas Michelle Rd.

    Or Singing her Metallica when she was crying, okay perhaps it was not as effective as Tori, but.. We work with what we have.

    Love you very much Little Sister..

    That is about all I can say little one, Love you very much..!

    T & L

  9. Dear Julie,

    I think that this post is such a beautiful way to remember the life of your daughter. Reading this brought a tear to my eye. I want to go over and give you a big fat hug right now.

    NOTHING in this world can ever, ever compare to a Mother’s love for her child, just as you’ve shown Kaela and your other children. I’m sure Kaela was very happy to have YOU as her mother and that in many ways, she was able to show love to others because she was first shown love from you, too. Her life is a true testament of courage and strength and I’m sure each day with her felt like the biggest blessing of all. You should be proud to say that your beautiful daughter, Kaela, has touched more people in her 16 years of life than most of us ever could in our whole lives, even till this day.

    I have so much respect for you and other mothers out there who’s had the same experience. I’ve never read such an honest, heartfelt and emotionally raw post and I applaud your courage to share this. I don’t think it’s fair to say that I understand your pain but I hope you know that your post has really touched me and many others out there right now. Cheers to many more celebrations to commemorate the wonderful life that Kaela has led on earth. It’s painful but it’s a joyous thing. Take care.


  10. Beautiful post Julie and it brought tears to my eyes because I know from talking to you how much she meant to you. This post just brought it to words beautifully.

  11. big hugs to you and your family. memories are meant to be kept and some in drawers and brought out at times. stay strong.

  12. What a lucky little girl to have you as her mother Julie.

  13. Julie, I am typing this through tears, and I am totally lost for words. I have no idea what I would do, how to mark the day. Wine would probably on the cards as well as tears, and I would hope smiles that you got to spend a little more time than expected with your daughter, that was obviously a fighter.

  14. Oh this is such a big story, and such huge questions. Maybe crying for a good long while each birthday is a good thing to do. How very, very hard to have a first baby who was so unwell straight away and for so long, and then to lose her. These special children open our hearts in ways the typically developing one’s don’t, is my experience anyway. I was so lucky to have a healthy baby first and to find out about the developmental problems later… and he was and is physically healthy, what a gift.

    I’m not a religious person at all, but with all the people I love who have passed away, I choose to visualise them now with people they love and who loved them; my grandparents and my dad I see as young children being looked after; my friend Gino is still sailing and skiing… who knows what happens after death but images of my loved ones being carde for is incredibly comforting.

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