'My little fighter with down syndrome'

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FEATURE

I often think about how lucky I am to have Christian in my life, writes NSM Irene Kuo. Especially when his health often hangs in the balance…

It wasn’t that long ago I was counting down days and nights like a little child until, finally, there were no more sleeps and I was actually waking up to Christmas Day. And I was excited at the thought of my family coming to our place for a celebration and a feast starting at 4pm. With my son Christian (now 20 months) going to hospital every four to six weeks over the previous six months because of his recurrent bronchiolitis and pneumonia, I especially looked forward to this day to be at home with my family, my loved ones.

However, with Christian’s body temperature at 38.6 degrees and the fact he was looking very tired from trying to catch his breath, I doubted he could make the celebration. I said to myself: ‘I have been through enough hospital trips, please just not on Christmas Day.’ But knowing Christian’s condition was getting worse, I quickly packed my hospital bag and got ready for a trip to the Emergency Department. True to my mother’s instinct, Christian was in for another hospital stay for monitoring and oxygen therapy. There was only Christian in the paediatric ward on the night of Christmas Day. The nurses, who all knew Christian very well by now, let me go home for a while so that I could spend some time with the rest of my family.

Being a mum of a child with a chronic illness and constant hospital stays, there is no time for pity and grief. I have learnt to deal with one day at a time and, sometimes, even one moment at a time. You also get to know who your true friends are – those who will always be there offering practical advice and genuine care about Christian’s situation. Staying in a room enclosed and isolated with four walls requires strong mentality and endless patience to sustain me through those sleepless nights when Christian is really sick and needs my constant attention and care. Faith has held me together during these tough moments, and it also humbles me to realise that human life is precious and valuable. There is a bigger person out there who governs every breath of life and puts purpose behind every situation.

As usual, Christian was put on an IV drip through his nasal passages for antibiotics and oxygen supply on the third night, following the results of a chest X-ray. With my heart aching seeing what Christian had to go through once again, I quickly put on my strong mummy amour to be ready for him in the battle that was sure to come. After settling Christian to sleep I quickly seized my opportunity to rest for the night. After a good night’s sleep I woke up to nurses coming in and out of our room reporting to the doctor about Christian’s increasing body temperature. My instinct immediately sparked an alarm that something was not right. The doctor rushed in instructing the nurse to add another type of antibiotics to the drip. I thought to myself, ‘How come they are adding more antibiotics this time? How come Christian is looking lethargic and just wanted to sleep?’

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I was advised later on that Christian’s right lung had failed. I was in complete shock at hearing the news that almost gave me a panic attack. It was as if I had sank in the deep ocean and was not able to get back up. I picked him up and held him in my arms tightly; his head was rested on my shoulder as if he was telling me, ‘Mummy, I am too tired to fight’. I just wanted to hold him as long as I could because I didn’t know what else I could do to make him better, and I didn’t know how long I could hold him for. I wanted to remember every moment of him resting in my arms.

I was shouting in my heart: ‘Christian, come on, you can do it! Together we can make it through!’ At this moment I realised that I loved my son more than life, more than doing well at schools, studying a degree at university or having a great marriage. This critical moment had put life in perspective for me.

I called my husband Andy who was at church with my daughters to tell him that Christian was in a critical condition. Andy told me to come home and have a rest and he would stay at the hospital with Christian. I went home with a heavy heart trying to lie down and have a rest. Knowing that it was too hard for me to fall asleep I got up and tried to get my mind busy with some household chores.

Later, as I was driving back to the hospital, I was full of fear and imagined all the possibilities that would happen and how I would react. Then, as I entered the Christian’s room, he was sitting up in up in the cot wide awake and crying. The doctor advised us that Christian had turned the corner and was out of critical condition. Once again Christian had proved himself a fighter. I shouted with joy being able to hear his every breath, laughter and tears.

Through Christian’s illnesses I came to know that life is precious and yet can be vulnerable. I have learnt to make every moment count while I am with my three beautiful children. As long as there is love, there is faith and hope.

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I would like to thank the most wonderful and capable team of nurses in the paediatric ward at Hornsby hospital for always making life easier for me and Christian during the tough hospital stays. Also, my dear friends Clare, Kevin, Ping, Daniel, Betty, Yen, Mavis, Tina, Colin, Jesenie, Eumi, Meryl and Sabrina (the best nanny on earth) for offering endless support and prayers. My special and one-in-a-million neighbour, who was willing to drive all the way to the Blue Mountains hospital to take me and Christian home just because they simply cared. My most caring and loving sisters, Grace and Joyce, for always offering homecooked meals and babysitting while Christian is sick in the hospital. My mother-in-law who loves her grandchildren dearly and always taking care of everything for me while I am at the hospital with Christian. Most importantly of all, my husband and best friend Andy, for always reminding me to have hope and faith in God, my beautiful daughters Melanie and Chloe, for always being responsible and helpful because they don’t want Mummy to worry about them, and for showering their little brother Christian with lots of hugs and kisses during good times and tough times.

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Read another story Irene wrote about her son Christian:

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