WE ARE FAMILY

(Taken from ‘Matilda in the Middle’ blog written when Matilda was about 10)

Our acceptance of Matilda as a family was complete as soon as the new door in our lives swung open. The key was a perfect fit. We saw a particularly small and fragile baby and loved her the same as her siblings, albeit it with an additional fiercely protective layer. I never saw, expected or accepted negativity from anyone around me. Perhaps new mum blindness, but in general I always think the best of people. I couldn’t conceive of negativity because it was so far removed from any emotion I had. Before being a parent I really worried about that unconditional love thing that’s supposed to kick in, and I’m very lucky, it always has. I certainly worried on dark days during my pregnancy with Matilda, if it would be the same with this baby I was carrying. This great unknown. This small bump that I was never encouraged to, but insistently reminded, that I could terminate whenever I chose, right up to the last minute. What a weird thing to have to explain to midwives at each check-up. I was asking questions for answers and information, not out of uncertainty about continuing my pregnancy. But again, I tuned out any sub text. I am quite a literal person and I think I was saved by not reading between the lines of many medical conversations.  I was in love and I didn’t care about anyone outside my bubble. I was also knackered and my perceptions were skewed.

Fire engines and various other hefty toy vehicles flew past Matilda’s tiny, be-hatted head almost as soon as we set foot in the house. Dugald was asserting his position. For her own safety, Matilda slept the days away in our bedroom, a silent, tiny baby, recovering from her traumatic start in life by sleeping through the best part of her first 6 months. I’d never had such a good and contented baby and I wasn’t complaining. When the health visitor suggested I wake her every 4 hours through the night, I nodded and completely ignored her. I had an almost  four year old and a hyper active two year old to contend with, was she joking? Amelia immediately loved her baby sister, but Dugald, again in retrospect, I think found this intrusion into his life, very confusing. He did everything he could to make sure he continued to have attention heaped upon him – which involved throwing things and jumping around a lot, as well as verbally demanding to be played with and just generally being in everyone’s face all the time. Of course his actions were trying to tell us something, but at that point we were beginning to feel very stretched. Douglas was working and studying, I was at home with the three kids all day and was about to start a new job three days a week, which I began when Matilda was only seven months old. I had managed to complete my Masters while heavily pregnant with Matilda. It didn’t take me long to realise a new job was much too much, much too soon.

Our lives adapted to a new timetable of health professional appointments. They came and went and came and went – Physiotherapists, community paediatricians, speech and language therapists, audiologists, ophthalmologists. And imperceptibly yet insistently they disturbed and distorted the shape of family life. And everyone had differing opinions.

Who to listen to?
All of them?
None of them?
Only ourselves?

 

She’ll be slow
she’ll be small
she might not breastfeed
she might not sit till 12 months
not walk till 24,
not talk….
she might not might not might not…..

No one thought to say She might,
Except us.

We thought she might, she just might, from the word go.
Our list of might nots was different.

She might not need to be whisked off in a helicopter.
She might not need heart surgery.
She might not have lasting health issues.

She might get out of hospital tomorrow or next week or next month.
She might be a beautiful baby and sister, a daughter, a cousin.
She might inveigle us all into her own magical world and we might all be the luckiest people in our own little cosmos.
She might be a lead singer
She just might….

 

I had to wait a few years before I met two professionals who agreed with me. Her OT (Occupational Therapist – although I couldn’t for the life of me understand why a toddler had an OT. I had a lot to learn) who gave me the confidence not to send her to nursery as a one year old, and her SLT (speech and language therapist) who supported her communication from toddlerhood right through primary school. They saw Matilda’s magic and didn’t have any time for what she might not achieve. I learned to listen to this type of professional and tune out all the rest. I only ever saw Matilda as the lead singer of her own Magic Band, not so far from the reality. Matilda just might surprise us all.

Matilda had a major thing in her favour, her physical health. After that initial three week neo-natal stay she went from strength to strength. No lasting lung or cardiac issues and no annual bouts of pneumonia or bronchiolitis that can blight so many of her chromosomal compatriots. She came home and blossomed in her unruly familial gang, and for that we are all grateful.

All the professionals had one thing in common. None of them could give me any of the information I desperately wanted. What could I do extra? Everyone just thought I was coping so bloody well. They didn’t see that as the months and years went on, I was sinking, masking it with a slash of bright red lipstick and a huge grin as the front door slammed behind me and we faced the outside world, my babies and me.

The early days were the easiest, although we were recovering from Matilda’s traumatic start in life and didn’t acknowledge that for a good six months. She swiftly became my handbag baby, carried, light as a small clutch bag in her car seat around all Dugald’s toddler activities, while Amelia was at nursery. She used to sleep through the chaos of 20 toddlers running riot in a church hall. I sat her on the stage of the hall as her brother careened around the room looking for things to trash and build and knock down, again and again and again. I hovered, fluttering between him and her, forever caught in the middle. In retrospect, I wonder how much Dugald saw or sensed my dilemma and did everything in his arsenal to make sure I landed on his side. As I procrastinated  between my children one toddler group morning, a conversation was playing out and I was summoned into the throng.

“We’re just talking about how you discovered about Matilda having Down’s syndrome. Is it ok to talk about?”

I nodded, glancing at the subject in question, slumbering on the stage, Dugald doing what Dugald did best, being physical and playing, running, jumping. It’s fair to say my mind was elsewhere. These were acquaintances more than anything else and I felt relieved that they were being open enough to start a conversation, I wasn’t the elephant in the room. But still, it was weird.

“I had a nuchal fold scan at 20 weeks so we knew there was a 50/50 chance of her having Ds from then on. We were offered an amnio but turned it down so we didn’t really know 100% till she was born…that’s it really.”

There ensued other stories of screening tests and high percentages for Ds. One mum was left overnight after a doctor announced she thought her daughter had “strange eyes” and they wanted to test for Ds. There followed a terrible night then huge relief the next day when all was pronounced well … normal.

Maybe they forgot who they were talking to. I still think they thought they were being inclusive and interested. But I drifted over and away to my sleeping baby. I couldn’t articulate or fully understand it yet, but these conversations about discovering that your baby has Down’s syndrome, are really important to share, with others with a baby with Down’s syndrome. Not so much those who had the all-consuming relief that it wasn’t to be. And of course, I could still see at that point these mums’ perspectives, but I was hurtling further and further away from any true empathy with them. Like I was sky-diving, free-falling through space to a whole alternative existence, and I was ready to embrace the ride. All I was feeling was acceptance and true delight at our new reality, the shape of things to come.

I’m sure all the slumber of Matilda’s first six months healed the trauma of her start in life and gave her the strength to create her own merry form of mayhem from then on. She had a fabulous role model in her older brother. Her elder sister was a mini mum, albeit one with her own line in stubbornness and tantrums. I don’t even know if we’re allowed as parents to use that word anymore? All of my children have had strong personalities from very early on and this became no more apparent than when Matilda was two and a half and I gave birth to her twin brother and sister. From the moment they were pulled out (elective section, not elected by me, the mum, but by the medical consultant) they displayed diametrically opposing personalities which they still have in these teenage years. This somewhat calmed my daily guilt and worry, that me living on the edge with a very shouty voice and perpetually feeling that I wasn’t coping, was well and truly making a mess of my children’s precious childhoods. Okay, I reasoned, they are who they are at the moment of birth with no input from me, apart from the nine months inside.

But generally I loved pregnancy and found it easy. I always took the time to relax, warm bubble baths and time to think. Harder with each successive pregnancy but carved out as much as possible for my own sanity and to allow some antenatal bonding. The first born got so much of it, the others all less so, but I tried. Lying in the bath, 2.5 months pregnant with the twins, I was the first to know that there were two in there, lurking just beneath my skin. I kept that a secret till I could organise an early scan, there is a limit to my weirdness that Douglas can take. My utter exhaustion and emotional see-sawing were also a bit of a clue.

The twins’ arrival coincided with Matilda mastering the art of running, but not that of sitting still. She was frequently, to her despair and mine, strapped into her high chair, surrounded by books and toys in front of Cbeebies while I sat down to breastfeed her baby brother and sister. “Just snuggle up with her on the couch and read her a story while you’re feeding the twins” health visitors would advise. “Oh…I see” they’d retract when visiting the house and being confronted with an unstoppable toddler banging her head on the wooden floor in frustration at the intrusion of these two tiny interlopers into her wonderful world. She had a shattered mum, a distressed/ distorted dad and two ignored older siblings. A tactile little girl, she knew how best to get the attention she was being forced to share. She went through a protracted period of head banging, biting the babies, hair pulling and poo flinging. Trying times. Her community paediatrician suggested I make eye contact with her and just say “No!” The same woman also warned me against using Makaton to aid Matilda’s delayed verbal communication. “She’ll speak when she’s ready.”  Thankfully I ignored her as Makaton was Matilda’s and our salvation. But at that point I despaired, went home, cried, shouted, screamed frequently, was riddled with guilt often about getting it all wrong and neglecting her older brother and sister. Dugald had started school just weeks before the twins were born, and within two years was refusing to go.

I could understand why, but I couldn’t change the reality that for a year our lives were so chaotic we were just existing, getting from one feed to the next, one broken night’s sleep to the next. In moments of levity we thanked our lucky stars that we had one great baby who slept for Scotland, and only one pouting princess who demanded to be sling carried from the word go, screaming through the night from her position on my pillow till I rose to sway her resentfully back to sleep. I didn’t have much patience left in me for a screaming, angry baby. She was breast fed, she slept with me, she was cuddled, loved and cajoled and yet she spent hours lustily screaming while her brother slept peacefully and was entirely ignored. Guilt is a terrible thing and when I found myself muttering “shut up shut up shut up” under my breath and under the covers as she screamed through another snacking night, I knew I was approaching the edge.

My morning sleeps, when Matilda was mercifully whisked off to nursery in a taxi and Amelia and Dugald plodded off to school, the twins fed and swaddled in layers in the pram out the back door come rain, snow, or shine for an unbelievable four hour tandem sleep, and the constant presence of my own mum almost every afternoon for a whole year, saved me from imminent meltdown. During the long morning twin nap I’d lie on the couch listening to the Mojave 3 album, Spoon and Rafter,  the soundtrack to the twins’ birth, and try to gather enough energy and sanity to deal with the rest of the day.  In the middle of all this Matilda created as much havoc as possible and she never, until she was ten years old, slept through the night in her own bed. The day, when the twins were about six months old and I ventured out of our house to the local park with all five of my kids (on my own!), I was ecstatic. I was so proud of myself. I can do this! I thought. Of course that outing has been recreated many times, not always with quite such successful results. The twins being six months old was one of the easy aspects of that trip. Once they were all mobile outings with only one adult were off limits, for years.

Even the garden proved problematic as Matilda honed her climbing skills and made it over the fence designed to contain us all in this mad world of our own making. Over the years she has disentangled herself from specially designed car seat harnesses, escaped from home to hide in neighbour’s houses, been found dangling from windows, disappeared into lifts alone and, on one horrible occasion, climbed over a first floor balcony during the chaos of arriving in Majorca. But that’s what I get for not holding her hand every second of every day, for encouraging her independent streak and loving her feistiness. She sometimes makes life hard on me and on herself. But who knows what the future holds for her? I’d like her to be as fearless and independent as possible, meeting challenges head on and looking after herself as much as she can.

Fast forward to the years of childhood, toddler years were altogether too frantic to linger on, and Matilda is an eternally happy, healthy, beautiful, fun loving nine year old. She will tell anyone and everyone her age, usually in Spanish, which can confuse things as her diction takes a bit of tuning in to. Other favourite conversation openers are “Is that your wife? Why?” “I love Christmas!” “It’s my birthday” (on any given day of the year) and “look at my wobbly tooth”, while shoving her mouth in someone’s face and desperately trying to dislodge a well rooted baby tooth. She has amazingly positive results from the teenage milk boy to old men in the doctor’s surgery. As a fairly reserved family, we are in awe of her social skills, idiosyncratic as they are. She knows how to get people talking. Her favourite things in the world are books and much to everyone’s delight she is an avid reader, tucking a book under her arm to go anywhere, be it Brownies, gymnastics, football, swimming or ballet.

We keep Matilda busy for lots of reasons – as a release for her boundless energy, socialising with her peers, following the same rules as everyone else and, especially with ballet, gymnastics and swimming, to develop and maintain balance and core strength. Of course, like her siblings, she also just does it for fun. She spends Sundays at Ups and Downs, a Lanarkshire based theatre group for kids and young people with Down’s syndrome and their brothers and sisters, where she sings and dances her way through the day, rehearsing for their annual five-night run at Hamilton’s Town House theatre. This is the only time she’s mixing with others the same as herself, of all different ages and she loves it. There is lots of hugging, sometimes a bit too much kissing, and a lot of fun and mischievousness. But everyone works really hard and produces a fantastic full length musical show.

She’s also keen to take up horse riding and loves her sister’s cello. However, there is only so much time in one day and with homework, speech therapy, audiology and optician appointments to fit in, she can’t do everything, but she loves to be busy, asking each morning as soon as she opens her eyes, “What is it today, is it a school day? Is it gymnastics? Is it Ups and Downs?”  She goes to mainstream school and mainstream activities and although teachers and coaches can be nervous to start off with, she wins everyone round. Matilda is a fantastic communicator, if her speech is misunderstood, she signs, takes you by the hand to show you, or as a last resort usually has a brother or sister on hand to translate. With all her energy we forget that she’s working twice as hard as everyone else just to keep up and tiredness hits her like a brick – she communicates this by dropping where she stands and refusing to budge.

But of course, it’s not all fun and games. Matilda is still a climber, an escaper, a runner, and for a few years there life was pretty unrelentingly chaotic. People reacted with horror two years after Matilda was born when we announced that I was pregnant with the twins. My old bandmate, Ann,  put into words what everyone else was thinking “Oh my god! You won’t be able to go anywhere and no-one will ever visit you.” To her credit, she and her family spent that Hogmanay with us in our power-cut struck house complete with eight week old twins. A night to remember and still all the assembled kids’ favourite –   candle light and daddy playing requests on the guitar, not  a DVD in sight.

During all this time we never forget how lucky we are to have Matilda. Eventually we faced the reality that we almost lost her and really are lucky to have her here with us, but also, we’re so lucky she is who she is. She’s healthy, she’s happy, and when she’s not she’s able to articulate why not. When she’s lying prone in the middle of the road, being stubborn and sad and boisterous and difficult, we know she’s going to come out of it and be enthusiastic, loving and full of fun the next minute. She needs to be watched, not as constantly as she did a few years ago, but pretty constantly. She’s totally unpredictable with little sense of danger. We’re in a lucky position, she’s surrounded by siblings, older and younger, who love her and to whom she is just one of them. They fight, they scream, they cry, they laugh, they do crazy livingroom gymnastics, and in the morning, they all walk off to school together. That is a revelation to me.

When Matilda was born we had no idea what to expect. What she would be capable of, if she would talk, when she would walk. She is who she is, loved by her family, a schoolgirl who recites poetry at school assembly, a Brownie hanging out with other nine year olds, a waving, grinning presence on the gala float every year. But none of this just happens, all of it has to be arranged and it can only happen with the right support in place. Mainstream has always accommodated Matilda, from school to Brownies to swimming lessons, and for that we are eternally grateful.

The only times I cried when I was in hospital after Matilda’s birth was imagining her growing up without friends. Life to me, without friends, would be a strangely empty existence. Matilda is surrounded by her family but she is neither surrounded by nor without friends. This is the reality. At school she is completely accepted and included, out with school she is different. I cannot leave her to play in the street like her 6 year old brother and sister. She won’t go off for sleepovers or swimming with pals when she reaches ten or eleven like her older brother and sister. She is a responsibility for parents of other kids if they invite her round, quite possibly investigating every square inch of their house –  cupboards, wardrobes and drawers included. Naturally, that doesn’t work for everyone and Matilda is very intuitive, sniffing out uncertainty like Chitty Bang Bang’s child catcher sniffs out children. Unfortunately this results in a display of challenging behaviour and very few play date invitations.

On the other hand, given the opportunity, she can spend a happy couple of hours at a friend’s house just hanging out with a willing mum or dad, reading stories. She reads an atmosphere like a well-thumbed book.  If she has friends round here she can either be all over them or totally ignore them. Friendship is an area that, as she grows older and her siblings grow more independent, we’ll have to work on. But for now, we’re just delighted to watch her climb, jump, run and grow into these lovely, lively mid-childhood days. Toddler chaos and tantrums are (generally!) a thing of the past and our local village school has been a fantastic settling influence on Matilda’s behaviour, we just have to take a deep breath before planning for her secondary education and facing the pubescent teenage years! But that’s another story…

Next Chapter

Previously:
Chapter 1, Pt I,
Chapter 1, Pt II,
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8

 

 

 

 

 

Katy Lironi
@LironiKR