Five Firsts I will Never Forget for #LDWeek14

Which firsts do you remember from your child's early years? 

First tooth, first haircut, first word? 

Do you keep evidence of them all, the teeth, the lock of hair, the words written in that little red book the Health Visitors give you? I have all of those precious memories from both girls stored away in a tresure box that is bursting at the seams.

Each year Mencap encourage us all to pull together for Learning Disability Week, a time to share information, campaign together and celebrate achievements. This year is is no exception, and the cleverly-chosen theme for #LDweek14 is 'firsts'.

Little did I know when I agreed to take part with a blog post, that it would prove such an emotional experience. Here I sit browsing through old photographs, looking for visual evidence of Natty achieving things for the first time, moments in time captured, and I am reminded just how many of those occasions we wondered if we would ever see. 

We dared not hope for any of them when she was born, for we weren't even sure if she was strong enough to survive in the beginning. Natty has Down's syndrome and was born with a heart condition that left her blue and reliant on oxygen and an incubator in neonatal intensive care for several weeks.

So this exercise has been a stark reminder in not taking your child's achievements for granted, in celebrating even the tiniest of successes, in accepting them for who they are and encouraging them to reach their full potential, whatever that means.

As I sit, with a tear of pride, and a heart that becomes heavy recalling some of the hurdles our precious daughter has faced, a cup of hot tea in hand, I am proud to share with you just a few of our little Natty's memorable firsts:

First Taste of Breast Milk and Kangaroo Care

Natty was quite simply too tired to feed as an infant. Expressed milk was fed to her through a naso-gastric tube for three months after which time she learnt to do it for herself. Her first real accomplishment.

This picture is so significant as it shows her very first taste of breast milk from a syringe at about 3 days old. It was also the first time we tried Kangaroo Care which is skin to skin contact, so enormously beneficial to premature and sick babies.

I recall a cardiac consultant arriving at this moment, scanning machine in tow, and a kindly neonatal nurse firmly asking him to come back in half an hour, for she knew the immense significance of this moment.

Showing Interest in a Toy

With all infants there is a period of time before they learn to smile or take an interest in the adults and things around them, but with Natty I recall this seemingly going on forever. Thinking back I guess I was afraid that she might never engage with her world.

The Portage service were amazing at this stage, and came to the house weekly, bringing toys and ideas for exercises for us to do together. It was also a chance to have a coffee and a chat with a familiar, smily face who understood the period of adjustment we were going through.

This photo shows Natty with a loan toy that was the first thing she ever reached out for and actively chose to play with. It span and wobbled and played a tune from memory, although I might have made that bit up...

Teasing Medical Staff

This photo was taken within hours of Natty coming round from her keyhole heart surgery. She's wearing her 'My heart was fixed...' T shirt.

Those of you who have been through similar with your little ones will understand the phyical weight of worry, the sheer terror of waiting for your child to return to you after such a procedure. The photo takes me straight back there and my chest begins to tighten as a remember every little detail that I had boxed away in my mind.

We went to Bristol Children's Hospital and paced the street while we waited for the call to return, the call to say our youngest child was safe. We were at her side when she awoke and then Daddy held her on his chest while she dozed off the anaesthetic. None of us spoke, too afraid. Wondering if the surgery had worked, if the operation had been a success, hoping there were no ill effects.

Then her surgeon appeared, doing his ward round. Natty looked up, turned to him and blew the most enormous resounding raspberry at him. Our cheeky Natty was back, with vengeance, and oh so cleverly she broke the tension in the room and made us all smile once again.

Writing Her Own Name 

These photos show a proud and happy time for all sorts of reasons, as they were taken when Natty 'graduated' from pre-school at four years old, ready to begin in reception. An anxious time of transition for any parent but it couldn't have been done with more care and attention to detail.

We arrived at the graduation ceremony venue and took our places in the audience. The children came in, sang songs and then took turns to receive their certificates and wear mortar board hats that they had made. My eyes didn't leave Natty for a moment and I strained to see the pattern on her hat. All of a sudden I realised that it was writing... HER writing... her NAME! Tears flooded our proud faces.

Natty had drawn over dots that made up the word NATALIA. It had apparently taken much time and several attempts, but the staff had believed in her and had persevered. WE couldn't thank them enough.

Swimming a Length Unaided

This event needs a blog post all to itself. It was a truly miraculous moment that I didn't capture on film as other children were present in the pool. It happened recently and all I shall say is that involved Natty, who has been swia few strokes at a time with out floatation devices, gatecrashing a swimming lesson. She watched her peers carefully and thoughtfully before launching herself into the water and swimming first a width of perfect front crawl and then, ten minutes later, a whole length.

More tears, and this time they were from the teacher and other parents as well as me!

The Sky is the Limit

What these milestones prove to me is that we must never set limits on what our children will be able to achieve. If the sky is the limit for them, then the firsts will keep on coming...

Hayley Goleniowska: proud Mencap Mumbassador

A Minor Illness: How Lucky We Are

The last couple of days have been put-everything-on-hold, stay-at-home-and-snuggle kind of days with Natty. 

There's been a temperature, there's been vomit in our bed, ingrained in her PJs and even over daddy Downs Side Up's cashmere mix sweater (eugh). There's been a small croaky voice, sore throat and pallid brow, some floppy afternoon snoozes, but essentially she is OK.

She's still managed to make me laugh with her silly impersonations, she's eaten small amounts of toast or mashed potato, she asked for a 'dip, dip, dip egg' and her little giggle has filled the air. She's been well enough to request that awful purple dinosaur on the iPad and to read me a school book. In short, it's a little bug and her body is coping with it.  And as awful as it is to see your child under the weather, I have enjoyed the closeness and the enforced pitstop it has given me.

All of a sudden I realised how grateful I was. How much stronger she has become. A couple of years ago a bug like this would have sent us to hospital with a closed throat, chest infection, pneumonia, croup, laryngitis, broncialitis, a febrile convulsion. I still worry. A lot. But since her heart operation she has been more resiliant. We are not on red alert the entire time.

Natty after her heart surgery

And then I look around me at my online friends, and I see many still living through that heightened state of alert, of worry, of uncertainty. Steph Nimmo into her 3rd week in hospital with Daisy, Renata moving bravely forward with Dom's recent issues, Baby Harry's family still waiting for him to smile after his stomach op. Friends Rachel and Vicky at home, watching over their vulnerable ones for the first sign of change that can signal a long period of illess. 

And then, today, the desperately sad funeral for a tiny little angel with Down's Syndrome who didn't make it through pregnancy into the loving arms of her parents who we had got to know via Downs Side Up. She was so wanted and so adored, and she has changed the world for the better without even realising it, for she has changed opinions and brought family together in an unexpected way. 

Baby Daisy, I have thought of you all day, a wild, windy passionate storm of a day. Tiles flew from my roof, greenhouse smashed, trees fell and cables were torn down and I imagined your parents hearts matched the rawness of the elements as they said their farewells to you. Rest in Peace little one.

And as I write, heavy-hearted, I have a tear in my eye, for I realise the fragility of life, of all our lives, but particularly the life of a child with Down's Syndrome. Pregnancy is a minefield, in more ways than one if you have a detectable extra chromosome. If you survive that, then you are one of only 6%.

Tonight I hugged our girls a little tighter.

Looking Back, Looking Forward

You know how it is...you have a whirr of would-be blogs in your head all the time, fighting and jostling for space in your consciousness, you wait until one jumps out and demands to be written.

Bossom buddies x

Well, I've had a few of those such posts pop up in recent weeks, but, if you're a parent you will have noticed that it is the school summer holidays at the moment. Other business takes priority, like being a Mum, entertainer, guide, crafter, artist, gardener, domestic goddess, educator, swim instructor, nurse, speech therapist, physio and mediator.
I thus apologise for the lack of meaty blogging content of late, but I don't regret it... :)

Now with less than 2 weeks of precious summer break left, I'm going to sit right down and throw some thoughts onto this blog. Right here, right now.

The school year ended in mid July, and this gave me cause to reflect proudly on the achievements and hurdles that my girls had overcome. Natty, a confident little poppet with Down's Syndrome, entered mainstream school for the first time, making lots of new friends, holding her head high in the reading and numeracy stakes,  out of nappies, joining in with school lunches, PE, wake-up shake-up and (despite Mummy's neurotic fears) never once trying to escape.

Mia soared this year, happy, healthy and eager, confident on school camp, chosen for Olympic and musical events. After a worrying year last year, when the stresses of living in a temporary accommodation while we did building work on our home took its toll on her physically and emotionally.

As the term ended Her Melness Speaks got me thinking about summer holidays as markers of time with her wonderful blog post Remember?. A wonderful read, I determined at once to seize the day and make the very most of our summer together to make sure it was our best yet. And that is has definitely been.

Natty is 5 now, and for the first time I am not constantly crippled with worry about her health, either keeping her in quarantine pre or post heart op, or scared to meet up with other children for fear of the infections we would contract. Don't get me wrong, I still shun the viral soup that is those ball pit play places, but on so many levels, this summer feels as if we are back on track somehow.  There has been some hayfever, a temperature and some painful constipation, but nothing worrying (touch wood).

And so, boosted by Mel's positive take on life, and thinking about how much easier life is now that we don't have to take pushchairs and slings and breast pads and baby food and nappies and 3 types of nipple/bottom/skin cream and several changes of clothing and huge kit bags and toys and syringes for tube feeding and medication, we threw ourselves into.... SUMMER!

Family volleyball at sunset

Our secret?  Well, I made a conscious decision to let everything go except having fun and feeding the kids well. The house is a mess and I look as if I have come through several hedges backwards. The blog has been given the bare minimum of attention. I have a pile of ironing that is scraping the ceiling. There's playdoh in the bathroom mat. I found lego in my knicker drawer. The inside of my car looks like a Damien Hirst installation, BUT I have admitted that help is not an admission of failure, so once or twice a week I have invested in Jodie, our babysitter, so that I can get the food shopping done, catch up on essential admin, or even hit the sack after a run of bad nights. Bob has been working in the US, so this isn't really too much of an indulgence. (As it happens we are eligible for direct payments to cover the cost of such respite, but I haven't found time to investigate that route yet.)

We've had a whale of a time, some real hoots and quality moments. Everyone has done something they wanted to do and there haven't been too many arguments. Honestly, I've only shouted once or twice and am actually quite sad that the holidays are coming to a close.  Natty is reliably dry during the day and is now conversing happily and able to play imaginary games with Mia. Suddenly the two are playmates, bossom buddies, able to make their own games in the garden. I'm always on red alert, but I have been able to do it from a distance for the first time.

Mia has been old and wise enough to attend some fab drama and horseriding summer schools for the first time. She has come home beaming with pride at her newfound skills and independence, her beauty shining from within that place of self-worth.  Natty and I have spent hours doing puzzles, art, reading, swimming, gardening, visiting zoos, learning to pedal her tricycle, making chocolate cakes, but most of all having fun, giggling, tickling and talking, talking a lot. Her language is improving exponentially, not just sentences now, but questions, made up songs, counting, and jokes (well, if you count talking about farts at inappropriate moments a joke).

The house has been filled with extended family, cousins, grandparents, uncles, aunts, coming and going, staying from far afield, even a distant great uncle from Italy, all stamping their mark on our perfect summer.

But I am tinged with deeper sadness. Why on earth? Our friend Alicia from the US reminded me why when she said 'Hayley, freeze your kids in time at this moment. This is the best moment.'

Of course in a year or two Mia will be wanting to spend more time away with friends, her social diary ever fuller  than ours, then learning to drive and finding her feet in the world.  Boyfriends, parties, jobs, study.
I damn well hope and work towards the day that Natty will follow suit in her own way.

Natty hoses down the dry log pile!

And of course this is what we want, we are building beautiful bows right now from which to spring the arrows that are our children forward into independence, into the big wide, often ugly world, with integrity and self-belief, confidence and ambition.

But Natty has Down's Syndrome. 

Won't the rest of her summers be like this one, spent happily under my wing, a forever-child?

No.

The bow we are creating is more complex and is taking some specialist craftspeople to work on it with us, but we aim to launch that arrow in the same way as its sister one day. We'll monitor its flight path closely, put I feel sure she will fly very nicely thank you.  Maybe not as far, but all by herself.