gif89a February 20th, 2006 | Ophelia

February 20th, 2006

It was a shame that the Pediatrician had to spoil my fun. It started the next morning when Poppy was driving to the Hospital with Me-Mum (my Grandma). The Pediatrician called Poppy and said that he would like to speak with him and Mamma ‘together’ when poppy arrived. I was lying in my crib minding my own business and doing a very good impersonation of a normal health baby when the Pediatrician completely blew my cover. He told my parents that he thought I had Down’s syndrome.

This was a quite a shock for all of us. If you had said I had five legs, it would have had the same effect. Neither Mamma nor Poppy knew much about Down’s syndrome although that was going to change very quickly. It turns out that I was a complete surprise to everyone. None of my tests during the pregnancy had shown that I had this condition. My blood tests were normal and my ultrasound didn’t show any heart problems. If I had been given an amniocentesis where they stick a needle into the sac around me and take a little tissue, my secret would have been out, but they didn’t. However, I seemed to be doing pretty well and nobody thought I had any major health problems other than this giant black mark that the Pediatrician had put on my hospital record. They were wrong again.

That same day, another doctor called a Pediatric Cardiologist came to check me out. He put a funny probe on my chest and took a long hard look at my tiny heart. He was not happy. And so for the second time in two days, I was the bringer of bad news. This time it turns out that not only did I have Down’s syndrome (as if that was not a big enough Downer!) but I now I also had hole in my heart which needed to be fixed. I was full of surprises.

Dr. Snyder, the cardiologist, sat down that evening and explained to Mamma and Poppy that I had a hole in my heart called an atrio-ventricular canal and that it would need to be closed. Before my surgery, I needed to put on some weight and the plan would be to fix my hole in about three months. Wrong again.

Whilst all this was going on, I think that Mamma and Poppy were both a little down and trying to cope with me and all the problems I might give them. If the truth be told, I think they were feeling a little sorry for themselves. I think some parents would have kept on feeling that way but here I finally managed to get lucky.

Poppy thought about this for a while. He looked me up on the Internet to find out about Down’s syndrome. I was being Googled for the first time in my life. It should tickle but it doesn’t. He figured out that when life gives you lemons you should make lemonade and as the Italians say, ‘Not everything bad comes to harm you’ (Non ogni male viene a nuocere).

One of his favorites saying was to look for solutions when you had a problem. When he was feeling very down he would say ‘Poor me, poor me, pour me another’. Feeling sorry for yourself just doesn’t make you feel better, it made you feel worse. GBS said something similar.

‘People are always blaming their circumstances for what they are. I don’t believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.’
George Bernard Shaw

Although the biggest surprise I still had in my back pocket was that I looked nothing like a lemon and I wasn’t the least bit bad. But my parents didn’t know that yet.

The next morning, Poppy came into the Hospital room and sat down opposite Mamma in her bed and explained that their job was to be my advocates. I was only two days old but I already had my own home-team pinch-hitting for me. Life was getting better by the day.
The day after that, I went home.

I wasn’t a very loud baby. I didn’t smile, tell jokes or make small talk. In fact, I spent most of my time eating and sleeping. And yet it seems that I was developing a very large group of friends of which many adults would be envious. My Pastor, Pastor Horne, from the local church, brought me a yellow rose. I had lots of presents and flowers and everybody wanted to see me. I was considered ‘adorable’. I had friends and family in Connecticut, Texas, Glasgow, Liverpool, London and Ipswich.

Everything would have been fine, basking in all of this adulation, except that I was steadily getting more and more pooped. Despite all the help of my cardiologist, the prayers, good wishes and the drugs to keep to keep my lungs clear, I was having a tough time drinking my bottle without getting short of breath and falling asleep.
And so, instead of the original plan for surgery at three months I was fast-tracked to April 12th. Hopefully I would be fast tracked for Airport check-ins too.

JAN MODEST QUAEGEBEUR, MD, DR. ‘Q’

My surgeon was Doctor ‘Q’. He came from Belgium but he operated at the Children’s
Hospital at Columbia Presbyterian Hospital and at the Heart Hospital in Monaco. I don’t know when he was last in Belgium. He traveled to Monaco every month leaving on a Saturday and returning ten days later on a Tuesday. Poppy did the same sort of thing, except to London. I think all of these surgeons are a little meshuga.

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