Milestones and memories…

This week’s blog is written by Tina Carr, mum to Darla. Thank you so much for sharing this with us Tina.

“They’ll get there in their own time.“ 

A phrase you hear a lot when you have a child with additional needs.

Once you get past the unnecessary sympathetic head tilts, the ‘I’m so sorry’s’ and the array of other clichés that seem to appear after a pre-natal diagnosis, this advice that ‘it may take them a little longer to achieve milestones, but they’ll get there in their own time’ seems to be the one that sticks around.

At first, I’ll be honest, it felt a bit negative; like people were trying to justify not reaching targets, not achieving age and stage related expectations. The thought of just letting a child achieve at their own rate – no expectation, no box ticking, just letting them be them – I guess it was a different concept to me. After all, having 3 children with a typical amount of chromosomes, you realise from pretty early on that life has a decent level of box ticking and meeting expectations to it.

Pre natal scans: tick

Discharge home baby checks: tick

Hearing tests: tick

6 week check: tick

Health visitor check: tick

The list goes on and on and, without realising it, as parents it becomes an expectation that this is what we will get when we join the club.

So what happens when things go differently? What happens when that first scan shows something unexpected? Something that isn’t what we signed up for when we decided to join the club?

As parents in that situation, I think sometimes there can be an instant, almost subconscious decision-making process. I can only speak from personal experience, but for us I never remember a time after we had received our prenatal diagnosis of Down Syndrome, that we sat down and really ‘discussed our options.’ There was no pros or cons list, no should we shouldn’t we, no tears of devastation or heartbreak for the child we wanted. Actually what we were faced with that day was just an overwhelming feeling of relief. Relief that we finally had a result, relief that the waiting game was over, relief that we hadn’t lost our baby from having the amniocentesis. Relief that we could somehow now just continue on with the pregnancy and, in all honesty, relief that the result was Down syndrome.

We now had something to plan for, something to talk about, a new expectation, a new journey to embrace. Unexpected, yes, but exciting and full of anticipation and that’s pretty much how our pregnancy continued.

Darla faced a pretty tricky start to life, born via emergency C-section and alongside Down syndrome, she also had another condition – tracheoesophageal fistula with oesophageal atresia ( TOF/OA). This condition meant Darla had a long hospital stay from birth and had numerous amounts of operations, the first one at 2 days old. Darla is fed via a tube into her tummy – gastrostomy fed and she breathes via a plastic tube in her throat – a tracheostomy.

During her 11 months in hospital, we had some very dark days, days when we were told she may not survive, days when we really didn’t know how much longer we could survive the relentlessness that is living in hospital.

The very idea of having an expectation of Darla reaching milestones, sitting, walking, talking, very quickly became a distant memory, we had one real milestone we really wanted her to achieve, and that was staying alive and hoping that we would get her home.

But as things started to improve, we slowly began to think about how to help Darla and to support all of her needs, not just her medical ones. We wanted her to learn and thrive and not have any limitation put on her based on her array of medical equipment she took along with her. When Darla came home, at 11 months old, that phrase we heard so much when we were pregnant suddenly showed its full meaning. This is where I realised this phrase wasn’t a cliché of words, this was absolute fact. This was now our life.

The timing of when Darla reaches milestones really bares no relevance anymore, the pure fact that she is here to achieve them means everything.

I remember the day she first smiled in NICU, a picture that sits perfectly in my muddled up trauma memories.

The first time she rolled over, attached to a ventilator, the potential for utter disaster with all the tubes and wires she had attached to her, but such an achievement, I was overwhelmed with pride. 

The day she sat unsupported for the first time the day before my birthday, the best birthday present ever!

So you see, these little milestones become so immense, so full of joy, they become less about timing and become the most amazing memories.

Often as parents of children with additional needs, we focus so much on what our children can’t do – after all we are faced with it daily, social media spamming us with our friends babies latest achievements, even among our own peer groups we can often feel very left behind and not part of the gang.

But as soon as you flip that mind-set into what your child CAN do and HAS achieved that feeling instantly dissolves.

Progress is progress no matter how big or small, no matter how long it takes to get there.

If anything, these achievements and milestones really mean so much more, knowing how hard our children have worked to achieve them.

So for those of us faced with even the most complex of additional medical and developmental need, there is always reason to be positive, always reason to look back at achievement and smile the biggest smile.

As soon as you remove the assumption or expectation of what you believe your child should achieve and simply just let them grow and develop to be the best they can be on their own level, you see one thing shine through…

Your child, in all their glory and wonder.

So when I speak to expectant parents now, after I’ve said a huge congratulations, I still say that one phrase that was said to me many times in the past 5 years, and I know one day those parents too will understand just how true a statement it is.

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