When do we start planning the lives of our children? Is it when we conceive? Or is it earlier than that? Does everyone, unconsciously at least, absorb events, feelings, hopes and dreams, and hold them in a tiny part of their brains ready to transmit to those they may give birth to.
We may think, as a stroppy teenager, angry at the world that we will never speak to our children in the way our parents do to us. Or we will find a love in something so powerful that it absolutely has to be passed down to our children so they can exact the same pleasure we have from it.
However the hopes and wishes for our children manifest themselves in our minds there is always one enduring want – for them to be healthy. You often hear people comment when asked, probably for the millionth time, ‘Do you know what you’re having?’ that they don’t care as long as ‘it’s’ healthy.
And so, what happens, when your child isn’t healthy when they are born? Or are diagnosed with a life changing disease when they are still young and vulnerable? Do your ideals for their lives flash before your eyes, like time is said to do when on your deathbed? Do visions of what could’ve been dance and flicker before you when dealt with such a hand?
I should know. I should know because I have been there. I am that mum. I have sick children. And ever since their diagnosis I have been struggling to find the right way of describing how our lives have changed. How what we thought was before us was snatched and tarnished with the threat of a life changing and life threatening illness.
And until now I have found no way to explain how that feels. What their diagnosis has done to them, to my husband and I and to our family, who are all affected. But then, two nights ago, I watched a documentary on the Aurora Borealis, where the night sky is lit up by the most beautiful, natural lights in an awesome show of colour. And it got me thinking. Whenever I see the lights in photos, or on the television, they fill me with pleasure. One day I’d love to see them for real and experience nature at its most awe inspiring.
The journey there wouldn’t, of course, be stress free. Especially if I went with the children. There would be arguments along the way. We’d be oh so very tired when we got there, but would marvel at the relative ease with which we are now able to travel around the world. We’d laugh at the time our suitcases went missing and have fond memories of the time we caught a plane for our honeymoon and talked about doing this, seeing the Northern Lights, with our family complete. We’d be making the journey with a multitude of other people from all different countries and backgrounds. And there’d be a plan. A guide telling us what we needed to look out for and the best times to travel and see them. It would be an adventure and one that we would all be on together, with other people who, like us, would want to offer their children the very best experiences in life.
And then I took this dream and put it out of context. For not everyone gets to go to see the lights, even though they may want to. Some people are forced to watch fireworks instead. Something that is noisy, artificial, and dangerous. Fireworks have the ability to wow and hurt at the same time. They are not predictable. There isn’t just one destination where they can be seen – they are not always let off at the same time and in the same place.
My family wanted to see the Aurora Borealis, but instead we’ve been singled out to observe the fireworks. At first we watched from afar, not wanting to be herded in with the other people there. We watched the different colours and patterns and oohed and ahhed. But all the while believing this wasn’t go to be all we were going to see forever. We’d be allowed to go to the lights at some point. But then, over time, we were pushed deeper into the crowd. It didn’t matter if we closed our eyes to shut out the bright, artificial lights, or the noise – the fireworks were still there. And they had the ability to catch us off guard. Make us jump, like when a firework is set off at 5pm on the first of April instead of 5th November after it’s dark.
And fireworks burn. Scar. Leave you with physical injuries that, although they aren’t painful and raw forever, remain as a reminder of what happened and where you are. Where you can’t escape.
Some people in the crowd walk away from the fireworks. You can hear them scream, ‘I didn’t sign up for this shit,’ and as it’s all a bit loud and unpredictable, they go. To where I don’t know for I don’t believe you can fully ever leave the fireworks once you’ve been forced to go to the show. There’s always someone nearby ready to set one off and rock your world once more. It can be peaceful for a time, but never for ever.
And so at the moment, this is where my family is. We are repeatedly being surprised by loud noises and sudden fires, and even though we’ve remained relatively unscathed so far, it’s been bloody hard work. We have to tend to the field where the firework show is daily, and it’s tough fighting the fire to make sure we don’t get burnt. But we are doing it. We’re getting used to this new future. This new place we find ourselves in. The Firework Show. And The Northern Lights and all the hope and wonder they would’ve brought remain a distant memory. Nature has played us this cruel hand instead.
And all the while, the most important thing is to make sure the children enjoy the show. That not for one minute do they feel they are missing out on something more spectacular. So we embrace the show, buy them sparklers and candyfloss and take them on every single ride we can.
They know no different and for as long as I am fighting fireworks, I will fight to keep it that way.
Diagnosis: the identification of the nature of an illness or other problem by examination of the symptoms.
This time next Thursday, I will be sat at home with my fasting six year old, waiting to take him into hospital for a lobectomy. Surgery where he has to have part of his right lung removed because it is permanently collapsed, and what remains is a hot bed for mucus and bacteria.
This diagnosis and operation has been a very long time coming and, whilst I know that it needs to be done urgently before the rest of his lung is affected and he needs a more serious remedy, the preparation for a stay in hospital and surgery like this is not easy.
When my son was born he was a healthy baby weighing in at 8lbs 10oz. I had a normal delivery and we were home the next day. He fed well and after an initial scary weight loss continued to thrive. There were a few strange things that happened, which each of them on their own should not have rung alarm bells, but looking back now maybe were all connected. He failed his newborn hearing test, in itself not unusual, and soon after passed one at the hospital and was given the ok. He had reflux, as many babies do, but vomited blood one day when he was a couple of weeks old. The doctor checked him over and said it was nothing and a one off, which technically it was. Then at four months old he had an anoxic seizure. Again, he was referred to the hospital and checked over and they said it was a one off, which again, it was. (We did buy a breathing alarm for the cot after this, which thankfully never went off.) He had the usual coughs, colds and viruses, but nothing that required hospitalisation or more than one dose of antibiotics.
But he was always full of snot and mucus and had a permanent cough. It was present in the winter, spring and summer and was no worse day or night, but it was there and ever present and when he was two and a half was diagnosed with asthma. I remember telling my mum, right then and there after that diagnosis that he wasn’t asthmatic. That it was something else. But we trusted the doctors and gave him a brown preventative inhaler every day.
And he started to waste away.
Dark circles appeared under his eyes and he began to fade in front of us. He looked skeletal and every photo I have of him at that time I have had to delete because they broke my heart.
Again back to the doctors we went and he was put on protein shakes, as he was malnourished and failing to thrive. This was when the phlegm vomiting started. If he laughed, cried, ran too much or sometimes simply for no reason at all, he would cough until he threw up a yellowy grey pool of mucus. An urgent referral was made to a paediatrician, however the wait was for twelve weeks minimum.
We couldn’t imagine what would’ve happened had we have had to wait those twelve weeks and were so lucky that my husband had private health insurance. I spent over a day on the phone to various different people and ended up getting an appointment for the next week.
At that first appointment my son was checked over, had his chest and heart listened to and the initial thoughts were that maybe he had a cow’s milk protein allergy, reflux and possibly something wrong with his immune system. Bloods were taken, we were given Omeprazole for the reflux and advised to go dairy free, with a follow up appointment made for in a few months.
When we returned a couple of months later, I said that he was better, but not fixed. So we were referred to an ENT specialist who said maybe his tonsils needed to come out, but because he was not 100% convinced this was the problem and I did not want my son to have an unnecessary operation, we decided against it. The ENT doctor gave us some Flixonase for allergic rhinitis and off we went again, now with two different sorts of medication.
A few months later we were back and yes, again I said things were ok, the early morning marathons of coughing and retching were less frequent, but still I didn’t think we’d cracked it. So this time we were sent away with Montelukast to help my son’s lungs as the cough and phlegm vomiting were ever present.
I remember during this long period of time, when I was back and forth to the paediatrician, how frustrated my husband and I were. The paediatrician always said that with children they work very differently to how they do with adults in that they don’t do any investigative tests and work empirically. To us it seemed like they were just throwing medicines at us and I wondered if we’d still be going there in ten years time with our son now on a hundred different types of medication.
But what choice did we have other than to trust them and go with it? He was improving after all, and with each new medication we hoped we’d finally cracked it and solved the puzzle.
We returned again, a year ago, and this time we were given Certirizine, which is an anti-histamine.
The phlegm vomiting and cough all but disappeared and we started to reintroduce some dairy. He began to put on weight and had more energy than he’d had in a long time. The combination of the four different types of medication seemed to be working.
However in December, the paediatrician noticed that he had some clubbing of his fingernails, a sign of lung disease, and ordered an immediate chest x-ray, which showed a collapse of the lower lobe of his right lung.
Our son needed a four-week course of antibiotics in an attempt to re-inflate the lung. It didn’t work.
We were then referred to a respiratory paediatrician who told us some hard facts.
This could be congenital and he was born with a diseased lung. Or it could’ve happened from him having a nasty virus that damaged the lung. He could’ve aspirated something, which had caused the collapse. Or he may have a genetic condition called PCD, which had led to this happening.
There was so much to take in and the advice was that he would need antibiotics for the foreseeable future before having to undergo a bronchoscopy to look into his lung, followed by a two-week stay, on IV antibiotics, in hospital with vigorous physiotherapy to try and re-inflate it.
We spent three long weeks in the Children’s Hospital and he had IV antibiotics, two bronchoscopies and intensive physiotherapy all to no avail and so, at the next outpatients appointment, were sent for an immediate CT scan, which showed permanent damage to the lower lobe of the lung. It was never going to inflate fully again and needed to come out before it infected the rest of his otherwise healthy lung.
The operation is risky because the lung has been collapsed for so long and I’m dreading it, but that is where we are. He has on-going tests to try and determine the cause of the collapse, which we still don’t definitively know, however several results do point towards the genetic PCD condition, which has implications for his younger brother, who too coughs constantly.
He is a wonderful six-year old who has, remarkably, taken all of this in his stride. He hates cannulas (or ‘nasties’ as he calls them) but knows they need to be done, and if you ask him how he is he will tell you, in a very matter of fact way, that he has to have some of his lung chopped out, and that afterwards he will feel better and get all the presents in the world. Children are so resilient and are masters at not worrying about something unless they have to.
I could learn a lot from him.
Power Through: (v.) continue despite difficulties
Not one normally,
To ask for help.
Just power through,
Fine by myself.
Up at night,
Work all day.
No time for rest,
Little time for play.
In control of it all,
How I want to be seen.
No cracks, no failing,
Falling apart at the seam.
Don’t notice the signs,
The aches and the pains.
Ignore the heaviness,
In body and brain.
A break is what’s due.
Still cook, still clean,
Always power through.
Sore throat starts,
Head ache begins.
I will not, cannot,
Begin to give in.
Until it takes over,
Forces me down.
Unable to function,
Do nothing but frown.
Look after me.
Man down, mummy down,
I simply can’t be.
Indulge in my sickness,
Sleep, rest, restore.
Till I’m better and ready,
To power through once more.