This is my favourite time of year. Both of my children were due to be born on the 7th of March, though neither of them came on time. Caitlin’s labour was 72 hours and nearly ended in a c section, though I resisted. Her heart rate kept dropping at every contraction. She was finally pulled out by vonteuse with the cord wrapped twice around her neck. Felix was born by emergency cesarean 10 minutes after I took the first tablet to induce labour. I started a Braxton Hick (I had already been having them day and night for 3 months) which kept going without release. Previously, this was a regular occurence, sometimes the ‘hick’ would last 10-15 minutes. But of course, because of the concern over Felix’s heart defects I was already strapped up to a foetal monitor and the computer said it was a ‘hyper contraction’ because it went on and on. The midwife hit a button, the room filled with people and despite my cries of ‘But it’s just a Braxton Hick!! I was crashing through doors on a gurney, being asked if I had any wobbly teeth. Still, I look forward to March for the feeling of excitement, freshness and potential that the change in light and temperature brings.
But with ideas of birth, I also had to face death this Spring. My amazing childhood friend Emma Fitzpatrick died on the 27th of February. She was my age with two young children and had been diagnosed with Motor Neurone Disease in 2010. This is one of the cruellest of illnesses. It is terminal and life expectancy from diagnosis is 3 to 5 years. It does not affect the senses but rather the ability of the brain to send messages to the muscles disintegrates. So while brain function, sight, taste, hearing and sensation of being touched remain intact, the rest of the body shuts down so that the person is left entombed in their own flesh. Emma was unusual in that her ability to speak was the first thing to go, followed swiftly by her limbs. She communicated through an Eyegaze computer which she controlled with eye movement. I only saw her once since her diagnosis, about 18 months ago, but we were in touch through email and she kept the most amazing blog which you can read here https://shapeshiftingemma.wordpress.com/. She lived in Kinsale in Ireland, surrounded by the love of an amazing family, group of friends and a team of carers. Her ability to endure with dignity and incredible insight was an inspiration. When the chips were really down in my life, I always thought of Emma, and felt lucky that at least I could hug my children, dance around the kitchen, shout and scream and laugh if I needed to. I think of her every day.
Felix turned 6 last Tuesday. I took a moment to reflect on how far he has come in a year. He was discharged from hospital on his 5th birthday (March 10th, 2014) after the previous year of trauma, (see posts from July 2013) and has not been back in since, apart from routine check ups. He is surpassing expectations from all professionals in his progress and his general good health. 18 months ago, we thought that a heart transplant was on the horizon. Now he is walking, playing, eating, attending school full-time. He is really well and happy.
So, where are we now exactly? Felix no longer gets any feed through his tube. Eggies are still numero uno. I have lost count of how many to date, but maybe somewhere not far off 700 eggs in eight months. He has them for most breakfasts, but he only takes them to school for ‘back-up’ lunch 2 days a week. There are various meals on the menu the rest of the week which he enjoys. School is the only place he will eat carrot now, (mine don’t taste right) and that, apart from potatoes as chips or roasties, and the occasional nibble on a corn cob, is all the vegetable he will eat. I don’t know if I mentioned before that Felix has been diagnosed with severe red/green colour blindness, which goes part way to explain his reluctance to eat any green veg or red fruit. He has often said in the past that spinach/broccoli looked like poo, and in fact to him, it does, look here to see http://www.neitzvision.com/content/colorblindworld.html, also http://facweb.cs.depaul.edu/sgrais/colorvisiondefi.htm
Currently, for dinner, he mostly eats the family meal. Or at least bits and pieces of it. This is sometimes followed by eggies, but often not. He eats a packet of cheese and onion crisps every day and a plain tortilla wrap at least 5 times week. His current top favourite foods are home-made smoked salmon sushi (twice a week), chicken from a chicken and veg stir fry (he refuses the veg or the rice) with fiery hot pepper sauce dotted on, japanese noodles from a packet with sesame oil (basically posh pot noodle, but 450cal a packet so what’s not to like??) which he would happily eat for breakfast lunch and dinner, but we only allow it a couple of times a week as the salt content is pretty high.
He is having daily physiotherapy in school to help with his hypermobility and with his upper body strength. He was gaining weight and muscle really well for a few months, then in early February got a stinker of a snotty cold with a chesty cough. Though he was tired, we still sent him to school, and he was fine, but his appetite went down the pan which is his usual reaction to a virus. He lost about 700 hard-won grammes. He is slowly getting back up there, with the scales finally saying 16kg again after hovering back around 15.5 for a while (he was 16.3 in early January). Though I don’t actually weigh him any more as it is just too stressful. Shap does it and tells me only if it is good news. Though I really don’t know why we bother as it wouldn’t change anything we are doing.
I am really desperate to get rid of the gastrostomy tube for good. As Felix is totally refusing to even consider taking his medicines by mouth, it needs to stay for the time being. It doesn’t help that Felix sees it as part of his body and can’t imagine life without it. He was 8 months old when it was placed. Taking Markus’ lead on how he weaned Felix the last time, (highlighting all the things he was missing out on by not eating), I tried listing all the disadvantages of keeping it. I told him that It means that someone has to ‘fiddle’ with his tummy 3-4 times a day. Apart from pushing medicines down the tube with a syringe, the site needs to be cleaned with warm water and cotton pads and barrier cream applied twice a day. It leaks and gets infected needing visits to the GP and having swabs taken and antibiotics given. It is prone to thrush being a dark wet area which yeast loves. It is irritating, often being a bit itchy and a bit sore at the same time. It often leaks and while this used to cause him hysterical distress, he now calmly deals with it himself. But it still is an annoyance. And there are other incidental things like sleep-overs at friends, restrictions at PE.. The list could go on. But he said that he doesn’t care about all the negative stuff. He has decided it is a part of his identity. ‘Mum, I can’t have it gone because that is what makes me different and I like to be different’. So we are working along with school to try to find other things that make him special and different. We are trying to move him on from the identity of being a sick kid.
Last week, as he sat on the toilet before he got into the bath he looked down at his naked torso and said ‘Oh no, my scars are gone, I want them back!’. They are actually still there, but no longer red and raised. They are becoming pale silvery affairs. I quite mischievously said ‘Oh don’t worry Felix, you will need plenty more operations so you will get lots more scars’ He was quite pleased about that!! I think his relationship to all that has happened over the last few years is quite complex. On the one hand, it was very traumatic but on the other hand, he was the focus of so many adult’s attention for so long that he may have become a little addicted to the feeling. A bit like giving birth. Over time, all you really remember is the good stuff, the pain of labour fades away.