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