I have chosen to tell this part of my story so you will have a better idea of where I have been. There is so much more to my story, and of course there is no end. This is not a story of my feelings or grief but more about the facts. This is the story of Thomas' Mum, me, Julie.
I became Thomas' mother when I was 42 years old. We live in Melbourne Australia. I was already the mother of three boys aged 23, 21 and 11. Thomas' Father has no other children so he was an eagerly awaited baby, we were all very excited.
Thomas was born at 37 weeks and 5 days. He lived for 19 weeks and 2 days. His whole life was lived in the Neonatal Intensive Care Unit at the Royal Children's Hospital. Thomas was born with Down Syndrome, he also had a birth defect called TOF/OA which is repairable with major surgery. TOF/OA is normally repaired within 48 hours of birth but because Thomas had a complication called Pulmonary Hypertension the repair had to be put off. While we were waiting for a better time to do the surgery, a number of other conditions were revealed such as a floppy airway, requiring a Tracheostomy, he contracted Pneumonia, Meningitis and Cellulitis, he had fluid collecting in his chest called Chylothorax and other related things. He was connected to a ventilator with oxygen support his whole life, he also had a G-tube for feeding and a replogle tube for suction. He was monitored every 15 minutes of every hour for the 135 days he lived. We waited 17 weeks for him to be well enough to survive surgery.
Thomas had surgery to repair the OA part of his TOF/OA on the 12th Feb 2008, he was not strong enough to bounce back after the surgery, the pulmonary hypertension had become a extremely severe condition, Thomas was requiring more and more respiratory support and huge volumes of oxygen to support him. He progressed to the point of no return and his little body started to shut down. We made the decision to remove his life support and allow him to die in a peaceful setting with us talking to him and holding him as he passed. There were no beeping machines or busy hospital noises that had been his environment for four and a half months just us and a nurse, with a Doctor on standby.
We shared Communion with Thomas before he died. He had never had a drop of food or drink pass his lips in his whole life, I gave him a taste of the juice that we were using as a symbol of the wine and his eyes flew open in amazement. We sang songs and held him and loved him, then after some Morphine to make him a little drowsy, we took the breathing tube away and he sleepily stopped breathing, his heart stopped beating soon afterwards. It was the last day of summer 2008, a leap year, February 29th.
You might want to stop reading at this point. The rest of my story is about how we prepared ourselves and Thomas for his burial, and about his service.
After he died the nurse took his last remaining peripheral line out, we undressed him and bathed him. we dressed him again and put him back into bed with all of his teddies and his snuggly rainbow blanket and left him for the evening. We went home, it was our plan to return the next day and see him again, and pick up all of his belongings and say goodbye to the friends that we had made. The nurses were wonderful and encouraged us to do whatever felt right to us, they also suggested that we could consider some things that other people had done in the past. Some people had taken their baby home one last time, taken them for a walk in their pram, stayed overnight in one of the family suites with their baby.
When we went back in the next day, Thomas was bought up from the Mortuary for us to hold him again. The nurses put some heating packs on him to warm his little body a bit. They bought him to us in a pram, still wrapped in his snuggly rainbow blanket. I liked the fact that they had bought him up in a pram, It was his only experience of being in a pram.
Thomas' thanksgiving service was held at the cemetery where he is buried. He was buried in a little bright red casket, we threw little sprigs of Rosemary in the grave with him, Rosemary is for remembrance. His casket is so small it fits sideways across the top end of our burial plot. When my husband and I are buried he will be right there at our heads. I don't remember much from his service, I was given a DVD of it, but I haven't watched it. Maybe I will one day, I probably won't though.
So you hung in there and have read this far. I understand what it takes to listen to this story. I am grateful and thank you for honoring Thomas and our family by doing so. I hope you leave this page with peace in your heart. Thank you.
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