To all the mothers this year …

20171215_154209I was emailed by a mother towards the end of last year who had just received a diagnosis.  It plunges a new mum and her family into unfamiliar, frightening territory which robs us of so much at a time when everyone else with a new baby seems to be celebrating. I composed the following piece for her but thought with the turn of the year, the NIPT testing being rolled out and her original email still very much on my mind, I should share it.  (I have changed the name of her little boy)

Unexpected news about the most precious thing in your life will floor the best of us. It’s inevitable that you will feel sorry, when though you are told not to be, that this has happened to you, your baby and your family. I spent many months feeling the anguish of seemingly being the only one amongst everyone else who were blissfully unaware of how God damn lucky they were to escape what had befallen me. They had typical babies, with no reason to view their babies in a different light, a light that seemed dreadful to even look at. I cried so much over Theo, the tears kept coming, even though I loved holding him, looking after him, feeding him. It was all marred with a heavy tragedy that felt natural to feel. I just wish I’d shaken it off sooner then I did as the simple joy and discovery of being a mum, something downs was not taking away from me, was all mine to enjoy. I was at home with my newborn. And like every other new mum, I didn’t know my newborn at all. Plus I had the diagnosis in the way, following me around like a fug every waking hour at the beginning.

Your new baby is a stranger to you, with or without DS. Like all new mums you are flung into action, having to generate feelings towards a little one who you have just met. You don’t know your son, yet, again, with or without DS. At this point you probably know more about DS than you do your son. But this is only a matter of time.

Your son will shine through the diagnosis, very dim at first, almost like a trick you wouldn’t dare believe. Sometimes it goes out and falters but as time goes on, your son’s light becomes brighter and stronger, casting out more of the gloom. Then one day you notice it is simply shining there in front of you: this gorgeous son of yours. The smiling, laughing, crawling, loving, pooping, burbing, snuggling, delightful mini human he has grown to be, even before a year.

At first, you’ll long it wasn’t you, your son, your life. Nobody wants a disability from birth. But ever since you saw the two lines on the pregnancy test stick (if you did find out that way) you loved your baby to be, and you very much wanted them. DS does temporally shatter that, but when the dust clears, you see it’s still very much there. Your baby first. The diagnosis second.

It does take the back seat but, right now, I know it feels it’s in control of everything, even your own happiness at a time in your life you are meant to joyous. Knackered but joyous. Now you are knackered and frightened. And just so sad. That’s what breaks my heart a bit as I know why you are sad, I felt it too, quite ferociously, but your baby deserves as much joy, love, cuddles and protection as the baby that was a tiny bud of cells you discovered were yours to nurture when those two lines came into view. John was already there.

What’s ahead of you, still, is all those mum experiences you signed up for – the moments of electric mum and baby connection, the looks and smiles, bath times, night time feeds, milestones, first steps.  John’s going to cut your parenting teeth, as it were, and make you the mother you’ll be. That will be a mother with more gratitude, patience and fire. He will teach you so much.

Bringing a person into this life, having the privilege of witnessing their coming to being, is a journey I’m glad I’m on. It might be a bit of a different life, and one you’re not familiar with at all, but it’s a hallowed and lucky journey. To be a mum, it’s the best thing i ever did.  Because I’m still just a mum and Theo’s just a baby. Well, toddler now, really.

There were many tears and dark times, I don’t think that’s unavoidable really, but John will become your light, perhaps more swiftly, if you just see what’s in front of you, needing you: your baby.

Things take longer, that takes some getting used too. No baby does too much before 5/6 months so it’s not too obvious at first. As developmental steps get larger, so do the gaps. I struggled with that, I still do, but so far, excluding speech, we’ve got there. God, it feels good. You feel you’re getting back some of the celebratory side of parenting that felt so trampled over at the beginning.

You’ll witness your partner father your son, hold him, comfort him and teach him. This will warm your heart, just like it would have done, with or without the DS. See how your world will not be that different at all than the one you had envisioned with a typical baby?

I always say you would never choose DS, of course, you wouldn’t. It will make life more difficult for our children. They will always need a certain amount of scaffolding around them, but some typical children may need that too, their parents just don’t know it yet. I made the mistake of presuming naively that all those other parents who weren’t mourning like me over a DS diagnosis would have the polar opposite experience of perpetual happiness and carefree days. Not so.
Returning to choosing: no, you wouldn’t pick out DS but you would choose your son.

If this is upsetting than I apologize, but if you had discovered that John had DS late in your pregnancy, say, in a scan a few weeks before his due date, what would you have done? Shamefully, it is legal in this country to abort a baby who happens to have DS up to full term.  It is so lucky that John is here, you went full term and he was allowed to enter this world, as rightfully he should.

‘Theo’ should be my son’s only label, as John’s should be ‘John’. Yes, we garner more attention as people see it – which I hated at first – but they also see a very sweet little boy. Theo and John will have to fight a bit harder for everything in their lives, and so will we as their mothers, but I guess I can see now that that gives us a zeal we wouldn’t have had.

I sometimes describe it as a magic eye picture – the whole experience has given me a focus and perception that would have eluded me. You feel the highs higher and, yes, you do feel the lows, lower. Which you must watch at the beginning as a new mum. It’s overwhelming enough as it is. But the only thing you are doing differently than you would have done if John had not been born with DS is feeling unbelievably sad and not up to the challenge. You are still his mum, he is reliant on you, your relationship with him will blossom, just as it would do without the DS.

Every day that peels by is another precious day into your motherhood journey with your baby son.  A little boy who just happened to be born with an extra chromosome.  He’s still John. Your very own. The delight and love that are coming your way, some of reasons we all wish to be parents in the first place, will bowl you over.  Get ready.

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The hardest choice of all..

anne and I

Over the summer I was approached to participate in Abortion on Trial, a programme the BBC wanted to make as the law is 50 years old. I agreed straight away which may have seemed like an odd decision at first.  But I saw it as an opportunity on mainstream TV to speak up about the startlingly normal and blissful life I have with Theo who may not, if I had had the option, be here at all.

I have always been honest about how I first reacted to the news that our three week premature baby had Downs Syndrome.  Up until that point, I had willed with everything I had in me for Theo to pull through, to get well and to come home.  But I admit: I did momentarily wish I had had the option of termination as I plummeted into our new reality that day.  Mostly because I was terrified and ignorant but also because I had just assumed that all would be fine with my baby.  Nothing would be wrong or unexpected.  And now suddenly it was.  And I couldn’t handle it at all. Yet having an abortion could have denied me so very much. There isn’t a day goes by when I don’t think that and count my lucky stars that fate had already set our course in motion.

What gets me every time I think about THAT moment we were told, and all those future moments parents will be told thanks to the terrifyingly efficient and imminent NIPT testing on the NHS, is how a much-wanted and loved baby suddenly becomes something less desirable, scary and in danger of now never entering the world that, minutes before the diagnosis, they were happily anticipated to do so.

That’s the same heartbeat, the same little hands, the same mini limbs that have been contentedly and safely cocooned in their mother’s wombs.  So loved and treasured and now considered to perhaps not be worthy of life, and simply not on the desired agenda after a diagnosis. It is at this awful juncture and dichotomy of emotions, that most expectant parents make a decision to terminate.  Doesn’t that seem risky?  Predetermining, suddenly, the value of a life, the capability of being able to cope with the unknown – which is precisely what it is, so how can this really be evaluated rationally – and even the right to come in to the world if you are not ‘typical’.

Thankfully, I have hindsight.  What still makes me gasp is that I could have aborted Theo based on fear, not love, and a future I couldn’t predict with a little person I hadn’t met. What kind of mother would I be, or indeed a mother at all, if I had been left to my own preconceptions pre-Theo, to not give my very much alive baby growing inside of me a chance at life?

I am most definitely pro-choice but in the above scenario of a pre-natal diagnosis, soon to be the only type of diagnosis, abortion can seem like it is the only one to make.  Hardly a choice at all.

A woman should absolutely have the right to choose but that choice must be fully informed.  It is so essential the NIPT testing is accompanied by unbiased and balanced information without the negative language such as the words ‘risk’ and ‘suffer’.  Terms like this perpetuate out-dated views and reinforce old belief systems, namely that children with Downs Syndrome should not exist. Exactly why do the medical profession think that expectant parents with babies like my son should automatically be offered life-ending treatment?  I look at Theo and of course it pains me to think that I could have destroyed him: the beautiful, happy, healthy little life clapping, laughing, crawling, eating and loving in front of me.  Like I said: hindsight is such a precious thing.   Eugenics is most certainly not.

I understand that continuing with a pregnancy of a likely disabled child is as difficult a decision as most people will ever make and deciding not to seemingly, and shockingly, happens without much discussion or up to date information.  I said time and time again to camera that abortions were pushed on women almost immediately after a diagnosis, like they were a natural reaction to a diagnosis.  Many mothers are still taking the news in, yet are told that the next step should be to terminate. And when would they like to book this in?

This is what needs to change and soon.  Instead of peddling this option, an option we all know is there, real life stories from blogs, the media and social media should be gently offered and then parents can come to whatever decision they arrive at from a neutral place.  And, most upsetting and unbelievable of all, is that a baby with Downs Syndrome can be legally aborted up to full term.  Imagine the scenario –  your baby could be days away from being born yet because of one extra chromosome, it is within the law to kill it. What subliminal messages does this feed to society? Or, indeed, how does that make people living with Downs Syndrome feel?  That they were lucky to live? That they should be grateful to have made it in to this world? How utterly dreadful and depressing.

2018, only weeks away now, sees NIPT testing rolled out which will detect every baby with Down’s Syndrome, for those who agree to have the testing done. 90% of women currently chose to abort.  That is 90% of children like my son who never make it, just because of their extra chromosome. Just because they are them.  What precious people are we disposing of simply because they don’t have what we do: a typical set of chromosomes.

Even with a typical set of chromosomes there are no guarantees – a child can grow up to be an abuser, a killer, an addict, yet they are not judged and their unborn lives are not valued any less.  We will, inevitably, have far less babies born with Downs Syndrome – some will view this as a success – but I fear this future. I fear that abortions are being carried out once we have deemed the worth of an unborn child’s life, based on what we know, of think we know, about a diagnosis.  It begs the question: who are we to judge?  In a world where we rightly appauld the Paralympics and celebrate individual successes against the odds with one hand, we are almost encouraged not to continue with a pregnancy of a baby with a disability with the other. A disability that varies so much and is only a small part of who that little person will be.

So, more women should base the difficult and heartbreaking decision of abortion on better information about Down’s Syndrome and not be pressured, as some are, and almost expected to, abort. Every one of us brings something unique to the world – surely we can see the value of difference as well as of conformity? My dear, dear son feels like an endangered species and all the other, future unborn babies who will now come under the NIPT radar, are also at risk of being wiped out whilst society marches on blithely to the eugenics tune.

It is more important than ever to change attitudes, advise medical professionals to deliver the news in an unbiased way and with the help of the media, have real-life stories ready to hand to dispel out-dated myths.  There is still so much fear around the condition and it robs a parent of so much.  The Downs Syndrome community has seen a difficult year this year, we know the tests are coming but we fear that they are there to detect and destroy not detect and prepare.  We are not against the tests but we tremble to think of the repercussions. We are on the precipice of tipping over in to an unfortunate, brave new world where ethics and morals are woefully behind.  And children like ours are at risk of becoming so rare, that society could slip backwards from this fortunate, liberal place we have apparently found ourselves at.

Abortion is a choice, it’s not the only one, nor should it be presented as that.  Perhaps the next programme the BBC should make is Attitudes on Trial…

 

Abortion of Trial, presented by Anne Robinson, was shown on BBC2 in October 2017

 

Navigating Through…

summer family pic

 So that’s summer over and I’ve not been making hay whilst the sun shone: I have never left it this long to pen a blog piece.  Perhaps it’s because I’m immersed in all that is motherhood, working and – oh – the washing!! But I’ve also been reticent as my emotions and resilience have fluctuated a little.  One of the reasons for starting a blog is for other mothers in my position or potentially in my position to hopefully glean an idea of what’s it really like to have a child with downs.  How does it feel? Is it that different? How quickly does the fear and devastation fade from those visceral early days? How do you fit into the world afterwards as a parent of a child with disabilities? Do you ever stop worrying about when, or even if, a milestone is going to happen?

I was desperate for answers during those first few weeks. Whereas most new mums can get an idea of what to expect from other new mums and simply witnessing family life out and about, it’s not often – or had never been for me – that you see a family with a child who has Down’s Syndrome. We are dubbed ‘the lucky few’ for a reason. I had very little realistic context on which to try to foresee what life would now be like. 

This summer was only my second as a mamma, and this year as a mamma back at work.  No afternoon strolls in the park with a dozing baby for me, sadly. Theo’s nursery are fantastic but I still get a pang when I hand him over on a Tuesday and am desperate to have him back for three precious days on a Friday.  Especially when it was beautiful weather.  I remember thinking back in the winter that I was looking forward to seeing Theo run around our garden this year. I was, of course, over ambitious and we are still waiting for Theo to crawl on all fours. Commando crawling, hell yeah, he gets himself about so swiftly he’s yanking the cat’s tail before I’ve caught him doing it but I must confess to believing that it surely wouldn’t take this long.

It has.  I would tell any new mum with a diagnosis to expect a delay longer than you think. And it’s natural to fret over it, as much as you think you’ll get used to the waiting. For instance, at 16 months corrected, Theo still has no teeth. Not that this is a biggie but I want HIM to have them, now.. Perhaps I am over-fretting but whilst all his peers break smiles with their mini pearly whites and are able to eat certain foods and make certain sounds, rendering them definitely toddlers now, Theo is still denied them. I just know when he finally does get them, I’ll be over the moon to see them. 

There are obvious pros and cons to sitting out the inevitable delays and this is why I’ve had some up and down times over the summer months. Pros – you get your baby for longer. I used to read this and think not much of it. I don’t think I had much capacity in me at the beginning take in many positives, I was scrambling around trying to handle my grief. But this has meant I’ve truly drunk in every moment, enjoyed extra cuddles and .. it’s given Andy and I an easier time, undoubtedly. We’re not chasing him around the flat yet. I can still leave him in his room for a few minutes and finally get something done. The new set of demands of a toddler hasn’t fully landed in our home at present but I’ll be so ready for it when it does!

Theo: you can create as much havoc as you like, have your old mama run around after you, throw the tantrums, chuck stuff, stamp your feet, all of the standard stuff. Because when you really wait for something, even doubt sometimes it will ever happen, you yearn for it. 

Cons – trying to glimpse into the future. I really struggle with this one. Of course, there aren’t any guarantees with any child, but there are certain rites of passages Theo may bypass. Admittedly, I cannot help but feel saddened by that. When Theo was a newborn and we had eventually got him home, I’d glance at all the babies in the mother and baby group or class we were attending and wonder, perhaps rather pointlessly, where they would all be in 20 years time. I was getting used to the fact that our road, referring to a previous early blog post, would be the path least travelled by. And it is precisely that – the unknown – that terrified me, and still does to a huge extent So this feeling came back around GCSE results day when the distant future yet again beckons me into a fruitless jaunt whilst I try to imagine a 16 year old Theo with what GCSE results, if any. Will he even go to mainstream school? How much bullying will he have to endure – I find it searingly painful to think of that especially. This may seem very maudlin and what will it change anyway but Theo as a teenager and an adult…. I can’t deal with that reality right now.

And I don’t have to, of course.  I guess what I am trying to say is that one and a half years in, rather simplistically, I’m just one and a half years in. In that the present is blissful, tainted only by me trying to turn the pages to future chapters which are a blank for Theo. I’ll admit: the ‘who knows’ element scares the shit out of me.  Of course, no parent has a crystal ball and no parent really knows what their child’s destiny will eventually be but it is a shame that society encourages us to pin our hopeful visions on what is considered the norm.  A life can blossom in many directions a parent doesn’t first envision or even prefer for their child, so it’s a chance we all take, diagnosis or no diagnosis. 

Another low moment – if you’re still reading this! – was Charlie Gard’s poignant trajectory through our British press and his parents struggle and eventual realisation.  The night Charlie died, I slipped back into the old clothes of grief I thought I had shed for good. Any baby in NICU will inevitably grab my attention and my empathy. And my tears. I sobbed and sobbed over poor Charlie and his parents. I feel Andy and I only know a mere crumb of their stress and experience but that crumb was immense in what it took to deal with it. I kept scaling that up for Charlie’s parents and found it shatteringly painful and unthinkable. I remember in dreadful clarity our first night of knowing. Hours after we were told. Making the phone calls, rethinking or trying to rethink the new terrain we had been flung into. You feel the weight of it all and are a no man in a no mans land of between-ness. Between the life you had, and took for granted only because you were unscathed by anything serious happening to you before, to a new reality where everything has changed. I did, somehow sleep that night, but my brain had taken in so much that day: one of the most significant 24 hours I’d ever witnessed. The first night of a trauma gets tatooed on to you; as time goes by you just watch it fade. I haven’t been back to the local restaurant we sat in, in tears, talking in a way we’d never had to before. 

One of the incredible privileges of being a parent is watching your child change before your very eyes, taking your breath away at how a little person emerges from that little baby and how much they soak up from you.

A lovely highlight this summer was seeing Theo blossom in his nursery.  I live for the Tapestry updates, often losing half an hour at work scrolling through the entries, watching him explore and enjoy everything around him.  We’ve only had a few times at pick up when Andy and I are NOT told that Theo has been ‘so happy today’.  His first 9 months of nursery have been, quite frankly, a breeze.  Yes, we are the only family there who have a child with Down’s Syndrome – and I do linger with a faded sadness on that fact sometimes – but it also seems we are one of the families with the most contented child.  I have honestly never witnessed such a never-ending stream of happiness: it really is a joy to know. He’s a popular addition to the nursery brood and I know will be remembered long after he has left. Theo is their first child with DS so he’s breaking the mould and teaching staff as they teach him. It imbues Andy and I with a pride that feels very exclusive!

In early July, we travelled to the stunning Javea in Spain for our second trip as a family of three.  I have mentioned before about the newly-found lack of anonymity in restaurants, airports, public transport: something you just have to get used to.  Which, as it turns out, I am.  In fact, sometimes the added attention buds conversations with people who perhaps you wouldn’t talk to.  You stay for lunch a bit longer, watch your beach neighbours smile as a little boy plays on the sand, point out every ‘doggie’ whose owner will always stop and let your baby pet it.  Theo is like a magnet for interaction from strangers that would have walked or passed by. Our world needs more opportunities to connect – in real life – and I can almost feel the warmth of someone I didn’t know seconds ago envelop my son from whatever interaction is taking place. I’m sure this isn’t exclusive to children with Downs Syndrome, any little human is a bundle of cuteness and can reduce a tube full of people into a smiling audience but there’s an irresistible draw to a soul that glints a little differently than the rest of us. 

It was, all in all, an untroubled, happy summer. Watching a mini personality blossom and knowing you as parents are playing a part in that is probably what life is all about. To think that I could have snuffed all of that out if we’d known in utero is palpably painful to think of.  I am so, so grateful Theo is here. 

Summer 2017 has, yes, seen the startling obvious difference now between Theo’s typical peers and him: the babies have gone and the toddlers are now in charge. Though he is now proudly pulling himself up and knows the spoon goes in his mouth; it knocks me for six when I see his little friends point and choose what they want, have the beginnings of a conversation and achieve that new level of independence that comes with being able to walk everywhere. But this summer has also seen Theo’s mischievous side with lashings more laughter and heaps more determination to just get there. Get there we will and who knows where we will be next summer? One thing is for sure: his life is happy and so are ours.  THAT’s the most important thing for any family.

 

Two Trips…

caro and claire

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.

‘Excellent progress’

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This is the stand-out phrase from a letter we received after Theo’s recent hospital appointment at one year corrected, a few weeks ago. We’ve got it in writing and I couldn’t be prouder. Or more relieved. I whimsically wish I could have waved the letter in my face last spring when I had been shunted on to this new path. I was so daunted and heartbroken.

I didn’t dare dream of excellent progress. It was day-by-day survival, on many levels. But despite the prematurity, immature lungs and Downs Syndrome nearly stopping his oxygen and nutrients in utero, ceasing his growth inside me, Theo has progressed excellently. That’s my miracle right there.

We’ve just passed another significant anniversary too – Theo has now been home for just over a year. The hospital days are fading, now, and glorious, normal life with a baby is what we gratefully have. Taking him home on April 7th felt so odd. I could hardly believe we were solely in charge! I was ready, though. Some lucky mums get to take their newborn home the day of birth or the day after. We waited nearly three months. I remember being so thankful to just lie with him on our bed, in our bedroom, with no one but us to worry about. These days, as ridiculous as it sounds, I still don’t take the unwired, unfettered cuddles for granted, especially the simple action of lifting Theo out of his cot, without the caution and tangle of tubes.

So, a whole four seasons at home. A complete circle and, I suppose, an end to the first round of anniversaries that take us back to those early, difficult days. I honestly would never have expected to be where we are now. Of course a good deal of that is down to not knowing what to expect with your first baby, like any new mum, but the diagnosis had heavily stained our future, our inaugural experience as parents and Theo’s life immediately. It all sounds very dramatic now but back then I looked at the card we had been given and hated its difference from the pack.

It is never going to be easy for doctors to deliver the news of an extra chromosome – you would never chose it as parents. It is very much an unwelcome addition into family’s lives, initially. But here’s what the medical professionals could reassure parents of as well explaining the concerns and risks of the condition:

Your baby really has the potential to make excellent progress..! Just wait for it..

Downs Syndrome won’t take away or deplete your unconditional love and it won’t deprive you of the joy other parents have.

It is not a lacking; it is just a difference.

You won’t feel disappointed or distanced from your baby like you may fear.  The diagnosis, eventually, won’t be the first thing you see/think of/worry about when you’re with your little one.

Like every child, your baby is a product of your love, nurturing and environment. That you DO have control over.

You won’t want this at the time: but you’ve been handed the gift of a perspective you simply would not have had that makes achievements of even the most simple things, shine more fervently. With a glint that you have previously missed.

You will learn patience: this is no disadvantage!

And you will join a group of incredible parents who will be a source of strength and inspiration. This support network is invaluable and we are all lucky to have it as a chance conversation, a few weekends ago, reminded me of.

I was sitting outside a café with Theo in the sunshine and he garnered some attention from the lady next to me. We chatted about the inevitable – I’m getting used to getting used to that – and she shared a disquieting story I shall never forget about her late grandmother.

I feel compelled to mark this.

This lady had found out that her grandmother had actually had 5 children, when the family had always believed it was 4. Her fifth child, baby John, was born with Downs Syndrome and she was told it was best to leave him at the hospital.

So she did.

She returned home without her newborn son. Somehow, just because of John’s extra chromosome, it was decided that her baby should be taken away from his mother and never experience her love. Perhaps all he would ever need to also be given the chance to ‘progress excellently’.

John’s story has stayed with me and I must admit to getting quite upset about it.  I couldn’t imagine the distress and damage that must have caused both mother and son.  If only I could race back through time and hold that dear little boy who would have no doctor praising his development, no access to services, no mother and family to nurture him.  I’d bring him back to 2017 where our children have inclusion, professional help and the rightful bosom of their families.

I feel so very lucky to have read and witnessed the words ‘excellent progress’ about Theo. Very lucky indeed.  Every single baby deserves that chance; however long it may take; whatever time they are born in.

A rainbow. An anniversary. A tv appearance!

theo sitting upI’ve been thinking it must be around a year ago I started this blog. I was convinced I began it in March as February was so, so awful.  Turns out the blog is OVER a year old; I penned my first piece a mere 13 days after Theo’s diagnosis.

Wow.

I know I was in pieces back then, just under two weeks in to an unexpected diagnosis of Down’s Syndrome, after a month of gruelling NICU. I’d probably googled way too much, cried more of the days than not, whilst feeling pretty helpless as Theo kept going day by day with his early arrival.  Pumping my breasts was particularly hard and thankless as I was stressed, traumatised and unable to conceive a happy future.  Dark days, indeed.

Recent click-bait press has claimed I wished Theo had died in my womb – it’s truly horrid to see those phrases splashed over the internet and attached to our names, all in the name of a good ‘story’. I may have been devastated but after willing an undersized baby to make it through each new day and night, I certainly did not actually wish for that.  I think it’s important to be honest: I did have flashes of shameful thoughts as we were told and the enormity of his diagnosis pressed down on every atom of my being.  I remember feeling snuffed out, almost extinguished by it, then coming back to life and hitting the wall in terror and shock.  That really was the worst half hour of our lives.  Nothing prepares you for unexpected news and nothing prepares you for your reaction to it.

But Theo and I were already linked, we had bonded, fused together almost. After all, he had transformed me into a mother, albeit in very harrowing circumstances. There’s no going back from that. February will always be scarred slightly as the month we found out but, like a scar, it will less and less visible as time goes on.

With the blog a year old, I’m writing this piece on the eve of Theo’s television debut on ITV’s ‘This Morning’. As nervous as I feel, I want to be truthful and positive about our journey so far. I can hardly believe that within a year we are going to be on national television AND that I seem to be okay with that!  When I first found out, I struggled with the thought of even admitting Theo had Down’s Syndrome, I wanted to hide it away and hope that no one would find out as I just couldn’t deal with it.

Reading about other mums’ experiences was one of my first ports of call as I tried to figure out what lay ahead for us. (Can I just add that NOTHING can really reveal this – your baby, extra chromosome or no extra chromosome, is totally in charge of what you’ll experience!) But reading about trail-blazers like Seb White and Natty Goleniowska began to uplift me and I clung on to them desperately. I marvelled at how brave and pioneering their mothers, Caroline and Hayley, were; thinking how could anyone be like that after being so broken, as I was.

My blog was actually intended to cathartically record the swirl of emotions and how I was dealing with it all at the time. I hadn’t found a blog that had been written so close to that life-changing moment and I knew that writing about my grappling of it, as I was literally grappling with it, was somehow important. We weren’t after the fact, we were as the facts happened!

Tomorrow will fully expose us to the nation and all that we felt, endured and battled with. I am praying I don’t cry but recalling those early days still nips me where it hurts and I haven’t discovered a mascara that copes with that just yet! I will truthfully chart where this all started and how my perceptions of Down’s Syndrome felt like the worst life-sentence. And it is those perceptions which I hope to influence other mothers about who will be in the same position as me.

From next year, the Harmony test means no babies will ‘slip through the net’, there will be no post-natal diagnoses. All parents will be presented with a choice.  It feels like a trembling watershed for life and from this point on we should tred very carefully indeed.

Of course, we were not given a choice. That made me angry at the time but now I am eternally grateful.  I would not have known such love, of a well I think only mothers with Downs Syndrome children can draw from. It is very, very deep.  The path to find it: frightening, bewildering and one you wish you weren’t on, at the start.

I’m hoping that my blog, my honesty, the tv, whatever comes our way, helps those future choices be fully informed. Fully informed about life with a baby, a baby who has given you the gift of parenthood, a baby who just happens to have Down’s Syndrome.  When the hospital told us I genuinely thought we’d never be happy again.  In seconds, trisomy 21 had seemingly wiped away our ability to be content.  And I plummeted.

Now, the best bit of my day is picking Theo up from nursery – where he is thriving – seeing him recognise me and reach out for me. We go home and the bedtime routine swells my heart.  I have never felt so happy.  Theo gives me everything I signed up for and more.  If I had been presented with a choice and a pre-natal diagnosis, I feel pretty sure none of this would be my world.  Yes, I may have gotten pregnant again (though there are no guarantees there) and had another baby to nurture but the point being: I wouldn’t know Theo. This little soul, this fighter, with his cute little habits, his goodwill, his determination and his fantastic sleeping through the night (many, many gold stars for that, my boy!)  This baby.  This Theo.

If I could describe, now, what I think may be a useful analogy, it is this: we are all used to seeing a rainbow with its full spectrum of kaleidoscopic colours. Now look at another rainbow and you spy a colour missing.  You may feel cheated, disappointed but if you peer a little closer, you’ll see a brand, new colour emerging.  A colour you have never seen before but there it is, growing just as bright as the others underneath the rainbow.  Soon, you’ll think that that is the best rainbow in the sky.

Here’s to painting the rainbow on tv, tomorrow. Gulp!

 

The Big Celebration

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Theo’s first year of life has been the best and the worst of times: I have sometimes felt an anchor of sadness due to the shock of all that happened in his first month but more often, now time has passed, the pure magic of being a mum to a lovely, lovely baby.

We wanted to mark his first birthday with an occasion so celebratory, it eased the bruising from those frightening days of his birth. We held a party on Saturday 14th January: an exact year to the day this all started with a regular trip to the midwife at 29 weeks. Four days later, Theo was born and we had the rug pulled out from under our feet. That happened twice, of course.

Saturday was just perfect: at our local; full of friends, old and new. And a Milky Way cake to boot. With rainbows on it.

On the actual day, this year, as the clock edged towards 10.05am, I held Theo very close, breathing in his hair, his vitality, as time marked his very first birthday on his calendar of life. I thanked that brave woman who was on the operating table, and that incredible little fighter who first moments of consciousness were full of tubes, wires and emergency, a precise year ago. As I sat in Theo’s bedroom, with him in my arms, I felt that first anniversary, with its sheen of grief, stalk past and slip behind me.

Who knows what Theo’s future birthdays will be like but I doubt one will be so significant. I asked friends and family to write Theo a letter which he can open on his 18th birthday: so many people have been on this journey with us, I want the young adult I haven’t met yet to own his story.

Here is mine:

Dearest Theo,

First things first: I cannot imagine you at 18! I want to keep you as you are as I love you as a baby so very much. You are the happiest, little human a mum and dad could wish for.

I hope you are reading this knowing that you have achieved against odds (odds I am, at the time of writing, still working out); that you’ve remained as happy as you are right now and as determined; that you know JUST HOW FAR YOU’VE COME.

What on earth these future 17 years will hold to shape and influence you into who you are, right now, reading this in 2034 (that really freaks me out writing those digits..!) I have not a clue. But I know we would have tried to have been the best parents for you, as we have already climbed some pretty huge peaks together, the three of us.

I love spending time with you.  I’ve seen you thrive from incubator to moses basket, to cot, to nearly, nearly crawling. You love stacking cups, and wrapping paper, and banging the stacking cups, and eating, and knocking down the stacking cups, and your little steering wheel toy (with the man with the terrible singing voice) and playing, most of time exclusively, with your stacking cups. We have, in 2017 – I will show you pictures – a cat called Mystery who you try and communicate with. Grabbing his fur uncomfortably tightly is your way of really showing you love him! Between the cat and the stacking cups, you’re a content little soul who is only just beginning.

There’s so much more in my life because of you. I’m only a year in and it’s full to the brim of kisses, cuddles, heart-bursting moments, oodles of love from a reserve I never knew I had and wonderment. You look at us both and know us now. We are connected: our bond was forged ravine-like deep, despite the circumstances.

Your father and I have only known each other for three years: you’ve been in a third of our lives thus far. You certainly do take after both of us. You are such a good sleeper (I really hope I don’t rue these words now I have committed them ‘to print’) and that is definitely your father. You’ve got heaps of energy – I’ll claim that one. You’re the easiest, most compliant, happy-go-lucky bubba out there. (I know we’re not always going to experience such parental bliss at having a pretty easy time of it!) but you should know, Theo, you are such a poppet.

Even changing your nappy delights you and weirdly, enough, I don’t mind it too much! It’s not that your poos aren’t a wee bit offensive (I feed you a hell of a lot of fibre!); I think we are both so glad it’s all possible. We pulled through 2016, we pulled it off and now we’re facing your unwritten future, together. Now, as you read this, that future is your past 17 years. I pray that they have been all you deserve.

A news flash from 2017: your Aunty Kate has just given birth to Frankie a few days ago, so now you have four cousins. I hope, over the decades, you have all hung out together and you all have each others’ backs. That’s what everyone needs.

I hope, too, that you will have a brother, or sister, or both! (Your father is terrified of how we will afford bit but I so desperately want you to have siblings) If I could ask time/fate/god to guarantee me one thing, it would be that. I want you to be reading this letter with them standing next to you, hugging you round your broad 18 year-old shoulders, as you enter the next stage of your life as a young man.

I can’t tell you how much I would selfishly like to pause our lives right now for maybe another few years. At one year’s old, nothing – well, virtually, nothing – can upset you or hurt you. Your world is 24 Glebe Road, your peppermint-painted bedroom, your nursery, your grandparents’ houses in the countryside, Priory Park, Crouch End Broadway, the crèche (your favourite person is Julia) and our arms. Yes, we have held you so much, I’m surprised we haven’t got little head-shaped dents in our chests!

If my former self, exactly a year ago, could only read this letter, a lot of hurt would be spared. I am sorry, Theo, but I have cried so much over you. Today, I cried for overwhelming joy as you just keep giving me the best bursts of time I have ever experienced.

We’ve got so many moments to come, my darling. I can’t wait. So, happy, happy birthday, Theo. Let’s start as we mean to carry on: it’s Milky Way cake every year from now on!

Mummy and Daddy