The first: to A and E; the second to Scotland so two precious babies can meet.
Theo was due his one year immunisations back in March and I’d delayed them if I’m honest. Something was telling me to and now I know why. I hadn’t heard much warning from other mums so I no idea what would ensue.
For anyone who hasn’t had these done yet, be prepared for them to take their toll. For a start, there’s four injections so by the time the nurse has gotten to the last one, your poor little one is literally howling, looking at you in disbelief. I know I should be better and stronger for Theo but I end up crying more than him! It’s still too close to when we were in hospital, with his little heel being pricked on a regular basis and other tests that would break his slumber in the incubator with a tiny cry I couldn’t comfort. Back in our local surgery with a kind and, I suspect, a very patient nurse, I got the same feeling I used to have: of running away with Theo from the medical professionals… as if leaving them would mean escaping what we face. However, casting my irrationality to one side, as I knew having the immunisations were the right thing, I dutifully held my son in place whilst every limb got it.
Goodness only knows what people must’ve thought in the surgery that day, as I whimpered and fussed around a post-prodded Theo who was obviously a bit out of sorts. I left red-eyed and apologising. Sometimes, it genuinely surprises me that I ever got through and seemingly survived what happened to us. Standard injections, in comparison, should be a walk in the park, right?
So Theo went to nursery and I went to work. That separation, especially after such a round of injections, is still tough. I long to be there to witness all his achievements and I knew I could’ve just cuddled him all day after that morning.
But, inevitably, I got a call from nursery around 4pm.
First of all – the mum guilt comes crashing in: I should’ve stayed with him. I shouldn’t have returned to work, should’ve ignored the obligation to go in today. On the phone, nursery relayed that during the afternoon Theo had become listless, he was not eating and he had a rising temperature. Okay, so this wasn’t completely unexpected but, again, when Theo isn’t right I’m flung back to the helplessness and fear I spent so long living hand in hand with. The underground couldn’t go fast enough and I frantically rang nursery when I’d come out the other side. Theo was crying in a way I hardly ever hear. We’re lucky: our son’s not a cryer. But by the time I’d arrived, he was dealing with a full on fever and was inconsolable. Mum guilt: you are a bitch.
Panicking, I then called Theo’s doctor who agreed to see us in the last slot of the day. I’ve never experienced Theo like he was that day and I didn’t do well… The doctor took one look at him and decided A and E was the best option. Back to the Whittington hospital, then, Theo’s first home in many ways. All the time, my stress levels were rising, being churned up by more thoughts such as is his reaction so bad because he was prem? Will he go back to being in an incubator? It sounds so silly now but it’s like opening the door on a room you left a while back but suddenly you’re back in it, with everything awfully familiar.
I was ridiculously under prepared – no red book, not the card that the hospital gave us which propels us through A and E, only a little bottle of water for Theo and a dummy: our lifesaver. Plus I only had 24% of my phone battery left. I wouldn’t be getting any amazing mum awards anytime soon. And what did I think would happen? We’d be out in a few hours?! Unbeknown to me, that was also the evening computer systems had been shut down by a cyber attack.
Next time I’m packing a few meals, piles of distraction literature (4 hours of scrolling through social media felt like I’d emptied my brain, not filled it), favourite toys, a phone charger, a blanket, that bloody red book and emergency card, a spare outfit for Theo… Yup – in my worried, guilty state, I had just grabbed the pram and my purse.
Waiting to be seen, Theo clung on to me, a scarlet limpit, and I did my best to make it alright. I’m not this strong, reassuring mama in situations like this. Yet. Oh, I have every intention to be. I’m earning my stripes!
No, one year on, I am the mama crying in the corner, using the muslin for a snot-rag. Sorry, Theo! Andy managed to join us just as, after two hours of waiting, we were put in a room. At least there I could lie Theo down without the harsh, bright strip lighting. The poor little poppet just wanted to sleep. Andy is much, much calmer than me – almost to the point I find infuriating at the time as I feel so smothered by the tension.
He grappled with last year quite differently. Thank goodness. I think I appreciate Theo’s health and good temperament so very much, with such a force, that when it dissipates for whatever reason – this being the most dramatic since he left hospital over a year ago – I let it undo me. I can feel the hopeless, terrified woman I was, become slightly in charge again. She was all I had in 2016.
It was all too familiar – the two of us, with a sick baby, in a hospital room, waiting, waiting, waiting for an answer. Theo’s reaction to the injections was pretty severe – his temperature was 38 and a rash had erupted over his body. We were asked to wait for a few more hours to see how he took to the medicine. Now, with no phones to distract us, Andy and I sat in pretty much silence, listening to the hospital whir around us. I don’t get how Andy can be so calm and he doesn’t get how traumatised I can work myself up to be. Everything the doctors did to Theo made him cry and whimper. But I only had to put up with a few hours of it, not months this time. It turned out Theo apparently had a virus as well, so his reaction had been exacerbated. Personally, I think four injections in one go in a little body is sometimes too much.
We were eventually sent home with antibiotics and an exhausted baby. We Calpol-ed him up for a few days afterwards and he seemed to be on the mend. It’s taken two weeks for Theo to return to his normal, happy self. In the meantime, we had grumpy Theo, nothing is quite right Theo, overheated Theo, and, a relative stranger to me: waking up in the night Theo.
I’ll be prepared next time, one year immunisations. (Really hoping for a next time, of course!)
Trip two was a journey I was very grateful to be making: taking my baby to meet my best friend’s little one. Both babies are miracles in their own right. Theo’s story is well documented here but I will never lose the sense of it could’ve been very, very different. A few more days in my womb would’ve rendered him brain damaged; the extra chromosome may have affected his heart, as it does to so many of our babies. I could have found out during my pregnancy and may have denied Theo his life and his chances. And motherhood!
Baby Maren, if my friend had listened to medical advice, was unlikely. 98% unlikely. She was brave enough to go down the route of artificial insemination, having found herself still single at 44. On THE day, I travelled up to Scotland, pregnant with Theo, to be with her. Whilst she rubbed my little belly, we summoned all the positive vibes we could, willed it with all our might. I thought, at the time, how brave she was, potentially doing this alone. Going for it against the odds, unknowing about my own imminent battles waiting for me in just over a month. Turned out that Theo was a lucky talisman: Caroline was pregnant!
She was the fortunate 2%; I never thought I would be the 1 in 279… You could say both of us defied the odds in many ways.
I was absolutely delighted: we’d be mothers in the same year, able to share experiences and stories. It couldn’t have been better.
After what happened, happened, I feared for Caroline’s unborn baby in a way I just wouldn’t have been aware of before. Theo’s diagnosis stripped some naievity from me and replaced it with a new knowledge of unexpected news and health fears. But there was no need: on the day after my own birthday, Maren entered the world.
I’ll never stop thanking fate that both our babies are here. ARE healthy and are giving us a level of joy – and exhaustion – only mothers know. We’ve swopped tips, pictures, first moments: all the feels, virtually. What a privilege to go through such a life-changing experience with your best friend. So, it was time our against-the-odds babies should meet.
A few weekends ago, I flew up to Scotland on my own with Theo. Admittedly, that did feel a little nerve-wracking. Carrying everything, plus maintaining control of the pram was a little challenging at times! Still, it was an exciting ….On both journeys, Theo garnered attention which genuinely warmed my heart. I had always feared this, last year: going away with a baby who would not be anonymous like most of the others in the airport. The longer-than-normal looks, the smiles, the attention. Would I keep his pram facing me a little longer? Turn him away from prying and what I thought would be judgmental eyes?
Of course not.
I am a proud mum, completely in love with my baby boy and instead of dreading the experience, I saw that whoever we spoke to, sat next to or served us reacted to Theo as if they’d genuinely been touched by someone special. A little person who they may well remember for being cute, smiley and perfectly happy to be held by total strangers. People wanted to interact with Theo and I could see it brought the best side of human nature out of everyone – I was actually humbled by it all. As we climbed up into the sky that morning, I realised that perhaps Theo had left a few people at the airport with a very positive impression of Down’s syndrome.
My boy in his own little way will help break through perceptions and I feel honoured to have him as mine. What an incredibly exciting responsibility.
Once Caroline had picked us up, our precious babies in the back of the car and us mums in the front, it felt like the snapshot that we had always imagined, in the best album of our lives. When we got back, we placed our babies in front of each other and watched them meet for the first time, observing the next generation continue our connection. Grateful we were watching it at all…
It was a very special weekend – we mothered the tribe together and Theo and Maren loved the regular company at meal times and bath times. There’s just something about mamas being together with our shared experience, in this case particularly so due to exceptional circumstances, that knits you so deep. Like we both know we’re on the best bit of our lives so far with these new, mini humans.
Maren is 9 months old and Theo nearly 14 months corrected. I’d prepared myself for the difference, for Maren being even more advanced than Theo. You think if you know to expect it, it won’t hurt as much. Of course, comparing in the first place is rather fruitless and unfair on Theo. But I’m only human and I can’t help it.
Well, it did hurt from time to time as I spent three full days in the company of a typically developing baby. And it was a bit of an eye opener. Whilst they played with toys, Maren would carefully examine something, turn it over in her little hands and be more patient, seemingly. Theo would simply swipe it away. No careful consideration or exploring. I think I’d truly grasped what gross and fine motor skills were that weekend. Maren was far more independent, especially with feeding, and I found myself coming away doubting whether I had over-mothered Theo. He doesn’t really do baby-led weaning, he’s fed by us for all his meals. Even toast. It all gets swiped onto the floor at present. It’s all daft speculation – every baby IS different, certainly when you’re stupidly comparing a typical baby born at full term to a prem baby born with an extra chromosome. I know it’s pointless but I still seem to seek a yardstick. How behind is he? How different was he at 9 months? I silently observed and took the obvious difference in. Suck it up, as they say. I am but I’m only just getting used to it.
I only cried once. Caroline and I were talking about the future which still floors me: I dread it in a way I know I wouldn’t if things were different. The guarantees aren’t the same. Maren will most likely experience all the rites of passage Caroline and I had. Caroline could may well be helping a 20 year old Maren plan a bout of travelling with her uni friends. I pretty much know I won’t be doing that for Theo. Maren has all avenues open to her; Theo does not. He will have some, I know, as I am going to fight tooth and nail for them, but they will be limited. When Maren will walk into a room, she will be free of a perception, a pre-conceived idea of her worth, her intelligence and how strangers will think her life to be. Theo will walk into a room, carrying this every single time. Acceptance and inclusion is out there, thank goodness but nothing will make the world as easy for Theo as it will be for Maren.
I don’t feel that devastation I did in those early months but I can still sense it and it’s force when I consider such things. Looking at those two innocent bubbas with their entire, divergent lives, more specifically their adult lives, in front of them just crumpled me a few times.
Still, I’m only one and a half years in, I’m learning on the job, and I’m very much a beginner.
On the flight back, Theo and I sat next to a lovely young lady who gravitated towards him, gently holding his hand as he tried, mostly unsuccessfully, to get comfy whilst strapped to me. Her reaction, the last of the weekend from strangers, was heart-warming and will stay with me. She’d had experience of DS, so it wasn’t a barrier or a curiosity or sadness driver. She just enjoyed being with a baby. On a plane?! Most people think they have got the short straw… And when we landed, she stayed with us whilst we retrieved our bags and pushchair. I was very grateful for the extra pair of arms: she held and cuddled Theo whilst I got our belongings back.
My son received love, attention and kindness from strangers all weekend, right up to the last minute before we were three again.
There’ll be many more trips both to hospital and to Scotland inevitably; more strangers to leave a lasting impression with, more standard sicknesses to deal with. All I can hope is I get better as they roll my way each time.