We have a son with Down Syndrome. There are a lot of things to get my head around. ‘Special needs’ is aptly named. I’m figuring out what Jacob’s special needs will be. Some we can anticipate, like physical development, but even within that category, some are harder to fathom.
There are a lot of tests in these early days. Hearing, eyesight, muscular development… Heart issues are top of the list, and we get a lucky break with that one. Tens of times his heart is listened to, and finally we have an echocardiogram in Crumlin in February to determine that his ticker is tickety boo, thank you God. But there are always another dozen things to think about, so the high quickly gives way to ‘What’s next on the list?’ The list gets forgotten pretty sharpish on the Friday before Christmas however.
But rewind. Tuesday Dec 18th, 2008. He’s just a month old. We’re expecting this to be a strange sort of Christmas anyway. A new person has just arrived at Hotel Us, booking in for a long stay, and he’s got a lot of unique requirements. The house is upside down. We’re not feeling very Christmassy. Just in need of a shower most of the time, and tired all of the time. And then he contracts bronchiolitis. The maternity hospital confirms our own diagnosis. Ok. No biggie. Andrew, who’s three, had bronchiolitis, so how bad can it be for Jacob?
As the days pass he’s listless. By Friday, December 21st, Dee is worried. I come home early. He’s off his food and very pale, sleeping all the time. That evening at about nine I manage to get two ounces of formula into him. He seems to respond, is a little livelier. I’m feeling very pleased with myself (I shouldn’t be) and off I go to walk the dog. By ten o’clock I’m back. One look at Dee and I see naked terror in her eyes. Jacob is white and limp. His breathing has slowed dramatically. We rush to Temple Street Children’s Hospital. It takes six minutes. A swarm of nurses and doctors is onto him at once. He’s put on oxygen. Blood is taken. X rays are taken. We stand in shock. Time might be standing still now, or it might have speeded up dramatically. I cannot say. I’m standing outside it, looking at people dressed in white, strangers on whom our son’s life suddenly depends. I did not expect to be here, but ‘special needs’ is a very big phrase. The doctors look quite serious, yet incredibly sympathetic. It’s the sympathetic bit that scares me most, frankly. A dam bursts inside and I fall apart for a ten minute spell. Dee and I hold each other, feeling useless. But after what feels like a year spent in a vacuum, Jacob starts to stabilise. He’ll be kept in. He has had ‘a near miss,’ we are told. Dee later reads ‘significant life threatening event’ on his chart. Two phrases which I will not soon forget.
After ten days our Jacob comes home, healthy and ready to resume his position as most popular new member of the household. Christmas 2007 does indeed end up being somewhat different, but that’s another chapter.
Two final items here.
The first is the lesson I learned. Jacob’s Down Syndrome, and the fact that he was born over two weeks early, meant that his lungs were not quite as robust as another kid’s might be. It left him more receptive to bronchiolitis. It also made it much harder for him to fight it the way his brother Andrew had done two years earlier. Furthermore, his energy levels were woefully depleted. My thinking was ‘We must get some food into him,’ and I was delighted to get two ounces of formula into him on the night he was hospitalised. Wrong thinking. The energy he needed to ingest and try to digest that formula was energy he badly needed for breathing. It was already super-tough for him thanks to the bronchiolitis, and I made it worse. Everybody lived, but I still feel guilty about that.
Lastly some huge thank yous. To all of the wonderful staff at the kids’ hospital. Amazing people, and truly humbling human beings. If you have been in the zone of depending for life on the goodness of strangers, you will understand. Another huge thank you to our wonderful neighbours who stepped selflessly into our lives on that horrible night. One or two came all the way with us, and there were at least five people who I will not name but who certainly acted with selfless concern. You did not hesitate in our hour of special needs. We will not forget you.