When you look at the photos below, what do you see?

I’m going to guess you’re going to pick up on happy smiles, sunshine, opportunities to play together and maybe even tell me how wonderful it all looks. As though we had a really happy day.

When I look at the same photos, what do I see?

Well, for the whole story, we need to rewind nearly a fortnight…

Four days before his birthday, Adam started running a high temperature and his asthma was deteriorating as he needed more and more inhalers to help him keep breathing. While there were a few brief moments of happiness and energy, by the time he came home on his birthday itself, he was obviously immensely unwell. 

That night, I stayed up with him all night because his coughing and breathing was so bad that by around 1am, I reached the maximum safe threshold of inhalers I could give, so I was just about to try to get him to hospital when…by some miracle, he fell asleep. A reprieve. That lasted for three hours, during which I stayed beside him to monitor his breathing and by the next day, I managed to get him an appointment at the surgery where he was prescribed steroids and antibiotics. 

For the following five days, it was round the clock care as I tried to support him as best as I could. There was no possibility of returning him to school as he clung to me like a limpet, stared into space, coughed and wheezed. By Sunday, I was utterly exhausted and he seemed to have perked up a little, so I broke the news to him that he was going back – mostly so I could sleep, something that by that point, I desperately needed. A long conversation with staff about his medication regime, I said goodbye to one miserable little boy and I came back home to collapse into bed. By this point, he had shared whatever virus he had and so I too was on steroids and antibiotics to try to control my own breathing.

But by Monday, I learned he was falling asleep on the school bus, wheezing and coughing so, ever the Mama Bear, I put my own health needs on the back burner and went back to collect my cub for another three day stint, during which he had his second prescription of steroids, endless rounds of inhalers and continued to cling to me. At one point, I showed a video of him to his speech and language therapist and she commented that it looked like he was in slow motion, while his teacher commented on the same video that he clearly couldn’t even summon the energy for his favourite things. The staff knew how unusual this was for my perpetual motion machine child.

By Thursday, I was utterly exhausted but he seemed to be picking up just a bit and, since I had an appointment with one of my own respiratory consultants on Friday, I had no choice but to return him to school again. When I broke the news to him, he burst into broken hearted sobs wailing, “Home nice! Happy home! Adam and mummy are favourite friends!” After all, despite being a fourteen year old teenager, developmentally he is a permanent toddler, so separating from me is really hard for him and he had been with me for an unusually long time. 

However, in the meantime, one conversation with a surgery based paramedic and a third doctors appointment followed, together with a third prescription for steroids. When he arrived at school, he “needed support” to transition (let the reader understand…) and I later received an email that he had been sobbing in class during the afternoon. With heartstrings well and truly tugged, I agreed that, following my own appointment, I would return and bring him home again for another round of sleepless nights and long days, during which every other responsibility, and my own health, would be pushed to one side in favour of caring for my complicated boy. He seemed to be improving and having more energy so I hoped the weekend would go well and maybe be just a bit easier.

This morning, Saturday, he woke up at 4:30am and was ready to start his day. I was *slightly* less ready but after tidying his nappy, I managed to convince him to snuggle quietly in bed for another hour. I *might* have closed my eyes briefly during this period, but it was rather like snuggling with a restless octopus. 

However, as daylight crept into his bedroom, I admitted defeat and went to make some coffee. He seemed to be much closer to his usual self, happily chattering, smiling and full of energy. The forecast was for a beautiful, sunny, spring day and I thought it might be nice if we did something so I arranged tickets to Lower Drayton Farm, hoping we could do something other than sitting behind locked doors at home. I prepared him for the idea by showing photos of the activities on offer, explained that we would go to soft play and then home next and he seemed ok with that. 

A close friend was collecting the dog for the day, to take him to a meet up with his litter mates and to give me a break from one set of caring, so I knew it wouldn’t matter if we were out of the house. A few hours later, I packed up our things, Adam’s emergency change of clothes, his special calming snacks, all of the inhalers for our respective breathing and off we went. 

At this point, his anxiety took hold and I heard from the back of the van, “Home! Home? Mummy, home!” So I called back that we would go to soft play first and home next. But he was stuck on repeat and I feared things may not go well but, as we were already en route, I was determined to try.

When we arrived at the farm, he noticed the climbing frame in soft play and grew enthusiastic. He said cheerful hellos to the staff and, when I asked them to turn down the music because he is autistic, they willingly complied. Then, off we went.

I shadowed him across the soft play area as much as I could, to keep an eye on him and things were going well. Extremely well. Until our respective first asthma attacks that is…but a full set of inhalers sorted us both out and off he went again, even if I was lagging behind, wheezing. It was during this period that I managed to get the indoor happy, smiley photos. Then, as soft play started to get noisier as more children arrived, I suggested we go outside for a tractor ride. 

“Home? Home now! Home mummy!” Perhaps I should have listened to the warning but I persisted as we climbed into the wagon behind the tractor – at which point, things quickly went downhill. He was moaning, rocking and crying and my best efforts with iPad, two snacks and a drink only staved off the inevitable but by this time, the tractor was moving and getting off was not an option. We stopped in the middle of a pasture where all of the other children excitedly looked at the cows and newborn calves. Adam stared at his iPad and began to sob. Holding him close, I assured him we would go home next but we had to wait for the tractor to take us back to the station – getting out in the middle of the pasture, where there was helpfully also a bull, was not an option. 

Finally, we arrived back and he needed an arm hold to help him get off the tractor ride without climbing straight over the younger children but as we were walking back, he spotted the “jumping pillow”. This is something he usually adores and helps to regulate him so I suggested he try. He got as far as two jumps and then lay down groaning. So, a short walk back through the flowers so I could try to take a couple of more photos (during which he nicked my sunglasses!) and then we went back to the car to drive home.

The whole trip had lasted for two hours and one hour of that had been the drive, half an hour each way. We arrived home, he changed into his pjs and that was that for the rest of the day. He was completely and totally done – emotionally and physically. The rest of the day involved rest, medication and he was in bed and asleep by 7:30pm.

Of course, tomorrow, I get to do it all again – probably starting at a similar time of the morning. And at some point – maybe I can schedule it in next week – I can reflect on the respiratory consultant suggesting I join clinical trials for biologic asthma treatment because I’m already on the maximum dose of everything else they can give me so this is the only place left to go. But time for self care and my own healthcare can come after my boy is well enough to be back at school.

So, when I look at these lovely, happy photos, sure I see memories of a lovely period in time…but they represent around 10% of that two hour trip. This then is just a reminder that there is always an entire story behind the simple snapshot you may see online and the true picture rarely matches the single set of smiles that are shown.

Happy Saturday…