A beautiful mum, Hailey Carpenter, has shared this with us. I know you’ll love it as much as I did.
Today I cried at a kids party.
Tears didn’t roll down my cheeks and I didn’t need to blow my snotty nose in a tissue. But my eyes welled up and got that awful tingly lump in my throat thats near impossible to swallow. Why? Because I’m exhausted and tired of making sure Charlotte gets her turn, is included and feels wanted.
The final straw, the dreaded piñata. Where kids push in, take too many turns and turn into little devils armed with a bat!
In line a little boy looked back at Charlotte, after pushing in front of her, and says “charlottes last”. Then the little girl in front of him turns her head, and in what felt like slow motion, proceeded to say, “Charlotte’s always last.”
It took a moment to register. I wasn’t sad because it was mean, I was sad because it was true.
She is always last.
She is always at the back, the is the last one to line up, to get dressed, to finish eating, to have a turn. I’m analysing and over thinking this insignificant, yet significant, event that’s just occurred till we reach the front of the line. Charlotte has her turn and I go line up with her at the back again.
Then I realised. She isn’t always last!
She is the first one to give a sad child a hug and ask them if they’re ok.
She is the first one to put up her hand when asked for help.
She is the first one to make you smile at the beginning of the day.
She is the first one to hunt out a baby in the crowd for nurturing.
And she is the first one to make you realise just how special, lucky and privileged your life is.
Don’t let negativity take over. Everyone has their strengths and weaknesses.
Life is just better when you focus on the positives.
As I walk through the kindergarten gates, I hook it under my foot and unlatch the lock one handed as I’ve always done. And my mind says ‘open-shut! Good boy!’
Because I’ll be saying it shortly.
We have so many small rituals, Parker.
On one of your first days of daycare, a mum walked her little boy in while chatting away brightly. ‘Help me open it. Ok, now shut. Good boy!’
I was overwhelmed. I looked at her son, not much larger than mine, walking and talking. I felt you’d be this small forever. A babe in arms, Down syndrome impeding your size and growth.
While I waited impatiently for your voice to come.
And now you’re three.
I walk into your new kindergarten room. I watch you play outside with your friends, and stand on this side of the glass while you shout and bounce and pull a fairy dress over your head while slapping on a cowboy hat. You’re always the sharpest and most colourful dresser.
I complete our ritual- I approach you, you ignore me and flirt with the closest teacher. I pick you up- after a token struggle, you blow kisses to every teacher on the playground while waving furiously. I miss a teacher, you yell at me, we spin so you can blow the final kiss.
You wrap your arms around my neck and I collect my kisses. If you’ve had an extra spectacular day, I know to expect a nose rub too.
I watch you pack your name tag away in the basket, and try valiantly to find your socks so I don’t get cranky about another pair being eaten by lost and found.
You may not communicate often with words, but you are a cup I cannot come close to filling.
With emotional intelligence beyond your years, you sometimes pre-empt my needs before I’m conscious of them. I get an extra hug today, for putting your backpack on you.
We head to the exit. I open the gate with my foot, because I’m holding you on my hip. I’m distracted, because I’m thinking about your missing socks. I shut the gate.
You pat my cheek and swivel my face around. You always command nothing less than my undivided attention.
“Goo-boy,” you say to me.
Just once, because that’s my ritual.
And you were always listening.
Introducing the gorgeous Thomson Children!! These three siblings all have designer genes- ALL three children have Trisomy 21, the most common form of Down syndrome. Trisomy 21 is a random event and not hereditary, so it is amazing that this family has three beautiful biological children with the condition. I think they have won the jackpot! Read about their story below and share at the end. Calli (11): loves electronics and anything to do with doctors, hospitals, ambulances. She has the biggest heart when it comes to helping other children. She would give the coat off her back, shoes off her feet and food off her plate to a child if they needed it. Montana (8): is a Tomboy! She loves playing in the dirt, working on cars and fishing. She is an adrenaline junky! She would be the child at an amusement park running to all the rides because of the thrill and the faster more “scary” rides would be her favorite. Sky (5): Mommy’s Boy. Now being in kindergarten we are trying to break that but he cries every day. He is your typical boy; he loves to play in the dirt, muddy water and climb anything and everything. Calli was born 2 weeks early and we found out at 2 weeks of age she had T21 and a heart defect. She had 2 open heart surgeries and spent a lot of her first year of life in the hospital. We are waiting for surgery number 3 buying time with medicine. My pregnancy with Montana…. well when we found out at 20 weeks that she had T21 too, we also found out she had the same heart condition as Calli. The ultrasound tech told us we had options. I instantly said “My only option is to have her and love her. She is my child” that was all he said. The cardiologist that followed my pregnancy (he was Calli and Montana’s cardiologist) said we should not have any more children because it looked like Montana’s heart was worse than Calli’s. He was unsure but it looked like to him (at the time) that the more children we had the worse the heart condition would be. But no one had ever heard of parents having multiple children with T21, let alone the same heart condition. Montana was born 4 and a half weeks early. She had one open heart surgery and spent about 6 months in the hospital. After Montana was born I was going to have my tubes tied but never got around to it. Sky was a surprise! A great and wonderful surprise! The doctors and geneticist in Wisconsin told me to abort. It was a full on argument to the point I was in tears because they were trying to force me into aborting him. We walked out of the office and never went back. Skye also has a heart defect. He was born 3 weeks early. He had one open heart surgery and spent just a couple of weeks in the hospital. Besides Calli’s heart they are all doing well. No one really believes me that I have 3 children with T21. It is always ‘that does not happen’ or ‘you must have adopted them’. Then they try to look to see which one is my biological child and which two are not. I have just gotten to the point that I walk away. Two of the questions I hear all the time are: have you and your husband been tested? Or how did you have 3? Followed by I want one! (if the person does not have a child with T21) what did you do to ensure you would have a child with T21? (a parent who already has a child with T21 but they want another). I guess people think there is a magic pill that I took to make my kids have T21! Day to day life is just like that of any family with children. My kids fight, cry, laugh, get timeouts, hugs, kisses, most days they don’t want to go to school so I have to fight to get school clothes on, we are late or nearly late for everything. No different than a typical household! They are in general education with their peers and pulled out for extra help where it is needed. I would tell parents who are expecting a baby with T21 that their child is just a child and to raise that child as they would any other child. The love that you have for your child will only grow stronger over time. It is okay to be sad, mad, upset because things have changed. Don’t hold back your feeling. Those feeling will change over time and you will look back and wonder why you were so upset. Our children can do amazing things! My children are my world!!! They mean everything to me.
Want to read more on our site? Here are three of my favourite other articles I hand selected for you! Follow on Facebook to read more stories every week, at Parker’s Place.
Why one woman wishes your baby had Down syndrome tooWhat you didn’t know about this Target child modelWhat a married woman with Down syndrome wants you to know
Kate is a mother I have the great pleasure of being acquainted with. She has a little girl with Down syndrome, who has two very protective older brothers. When she asked me to proof read a post she wrote for her Facebook page, it was such an honest and emotional read I had to publish it on this website, too!
Kate writes;
“I read a question today posed by a mum who has just had a child with Down syndrome. She said she’s constantly told that “her life will change forever”, and how great it is going to be from now on. She wondered why. She holds so much fear of the unknown, and was genuinely interested why it’s so great, what will change.
Yes, it’s scary. It was scary when we were told of Millie’s diagnosis, and it still is just as scary today. The unknown terrifies us. Every time I see a suspicious-looking dot on Millie’s body, I wonder whether it is the first visible sign of leukaemia. When she stares off into space, daydreaming, I wonder if she’s having an absence seizure and will be diagnosed with epilepsy. When she does the splits, I wonder whether she’ll needed orthopaedic surgery when she gets older due to joint deterioration. When she sneezes, I wonder whether it’s going to result in a hospital admission later in the week because she develops pneumonia. They may seem to you like irrational fears, but these are a few of the many things that are more likely to happen to a child with Down syndrome than one without.
How that changed my life? I didn’t have those worries about my kids’ health before Millie was born, and didn’t need to take such drastic measures to protect them. But with Millie, we’ll miss a big event because of that sneeze. Her immunity is probably lower than usual, and I don’t want her around others with any minor illness that could land her in hospital in the coming weeks. I’m sure there’s plenty of people who don’t bother even inviting us out anymore, given the number of times we thought it best that we shouldn’t go somewhere, or cancelled at the last minute. The physio appointment I’ve forgotten about may mean I need to ask my best friend to reschedule our catch-up. Three extra appointments this week means I’m behind in my work, and if I miss deadlines I could lose a client.
Spur of the moment is almost impossible, and extra precautions means we often miss out on things that we’ve been looking forward to. It’s heartbreaking to watch a little one year old boy run up to the playground equipment, as I watch Millie straggle behind doing her crab crawl, stopping to pick off the pieces of tanbark that are stabbing into her hands, as she tries to keep up with the little boy who is half her age, as she watches him do it so effortlessly.
Having said that, almost every time I walk past a new mum in the street, and peek into the pram at a gorgeous, sleeping newborn baby, I hope to see a little baby with epicanthal folds in his or her eyes that have an upward slant, or a tiny (or non-existent) nasal bone, and a little tongue poking out due to low muscle tone. Why do I wish those life changing worries and inconveniences, that I’ve just detailed above, on somebody else? It’s because the “good” stuff far outweighs the “bad stuff”.
She’s taught me to be patient. I’ve deleted the milestone charts from my computer because they don’t matter anymore. There’s no competition. There’s no pressure. Milestones will be reached when they’re reached, and we’ll have fun helping her along.
And the little things too. There were cheers of praise last week when Millie recently learned to drink from straw. Last week she blew into the recorder by herself for the very first time – three months after her first unsuccessful attempt. She’s almost mastered her trike that she’s been trying to ride almost daily for six months. She has been trying to stand independently for about six months now too, and every day she’ll stand for a second longer than she did the day before. I know that soon, whether it be next week or six months from now, she’ll instead walk towards me to wrap her little arms around my neck for a cuddle instead of standing there, putting 120% effort in to hold her balance for longer than yesterday. We’re celebrating progress and achievements every single day in our house, and watching her work so hard to do what she wants to do makes the whole family so proud of her. It’s all worth the wait, and it feels that little bit more special when she finally achieves what she’s been trying so very hard to do.
She’s recently started daycare. I watch the other children who are the same as her interact with her. “Is Millie a baby?” I hear the educators’ answers and explanations: “No, Millie’s not a baby. She’s two and a half, just like you. And will be able to do what you do, but she might need some extra help and it might take a little longer to do it on her own.” Millie is constantly teaching other children her age about inclusion and acceptance, and the positive attitude of the carers is all helping to shape the thinking of these children, as they become teenagers, and then adults. I’ll make sure their experience being around Millie is a positive one, and step by step Millie can help change any negative perceptions of the world, just by being Millie.
On the rare occasions when I pass another parent in the street who also has a child with Down syndrome, more often than not it’s like meeting up with a long lost friend, and I’ll find myself standing and chatting for an hour. It’s like a secret society, and if you know the handshake, you’re in.
When Millie learned to put a spoon to her mouth and actually put food in it, we celebrated like she’d just climbed Kosciusko. I can’t even remember such a fuss over these simple achievements with my typically developing boys, and friends with typically developing kids probably don’t quite understand our excitement. We’ve all learned to become mums and dads, brothers and sisters, best friends, therapists, counsellors, nutritionists, advocates, and fighters, all thanks to our precious little people with Down syndrome.
There’s the things that feel so much more rewarding when they are finally achieved; the sheer effort that a child with low tone needs to contribute to reach that goal we’re working towards. The cost of therapy and time invested support her mastering that skill; a skill that her brothers did as an automatic reflex at the same age.
It brings a specific type of bond you simply can’t have with a typical child. And it’s not necessarily better. It’s just different, and very, very rewarding.
I’ve watched my boys, with their tolerance and patience, develop into understanding young men – far more so than I ever anticipated. I see their concerns when Millie is unwell, and their genuine excitement when she learns something new. They’re little teachers, they’re little therapists and they’re little advocates that are willing to do whatever they can to make sure Millie is happy. Because it makes them happy too.
So yes, I do feel a twinge of disappointment when that baby in the pram doesn’t have those features of Down syndrome that I’m hoping to see. It’s because I want every parent to be able to experience what we are experiencing. I want to open up our world and bring you all inside and see how delightful life can be, despite the challenges and frustrations of raising a beautiful little person with an extra chromosome.
The difficult stuff will change you for the better. The friends you will meet will share every ounce of excitement over those tiny little wins. The five minutes of worry of that spot you’re convinced is due to leukaemia will quickly be overrode by the sound of a recorder being blown in your ear, and celebrated for the next hour or more. And as you sit home and dwell that you’ve missed your best friend’s birthday dinner because your child has a cold, you’ll be interrupted by the snuffly toddler on the scooter running over your foot, and cry tears of joy that it happened.
So to the parent that asked that question about what the future holds, and how it will change your life – here is your answer. And before long, you too will hope that the parents of the little newborn you’re admiring in the pram is going to be one of us who has had their life changed just like yours was.”
Click on this picture to follow Millie on Facebook.
Kate Grant is a mother who runs a business from home and parents three beautiful children. She also raises awareness of Down syndrome via her Facebook page. You can follow Kate and her daughter Millie here: https://www.facebook.com/watchhergrow
My mother was adopted paperless in 60’s South Africa, and my father lost his family to the war in Europe as a child. There has never been much heritage and bloodline, genetically speaking, for me to relate to.
Having children was a blessing I had never counted on experiencing. Yet, I found myself a mother at 21 to a daughter the mirror image of myself.
It changed my life- I finally understood the power of leaving a legacy and wanting the world left a better place, for future generations.
Kat with daughter Annerley
I gave her my surname- only the third in Australia.
I was determined to empower her to be someone special. I would teach her the value of family, and blood ties, her father and I would make the most loving and supportive of grandparents, and she would receive everything I missed out on due to my parent’s geographical lot in life.
I had always believed in the classic fairytale of marriage and 2.5 children.
As age and experience showed me the truth behind many of those ‘happy families’, I chose to let go of my fairy tale in order to be truly happy and healthy. Experiencing separation and subsequent single parenthood was hard. I grieved. I went through a life event that didn’t suit my dreams for the future, dreams I’d had since I was a little girl. I had to let go of thinking, “This isn’t how it’s meant to be.”
After many years, a new relationship and an early stumbling block with a miscarriage, her new brother Parker arrived in 2013.
Big sister and little brother
My world changed a little more. Not only did we discover he had Down syndrome, I was unlikely to have more children after my pigeon pair. I found myself back in that familiar and somehow comforting place called ‘single parenthood’. It was patiently explained to me that ‘I know you were really good at being a single mum, you’ll be fine this time too’. ‘If you don’t think you can do it, get rid of him then.’
I cried for many long hours on the shower floor in the hospital after his birth. My grief didn’t all stem from his future disability and my new marital status, as much of a shock and adjustment process that all was. This was my sweet baby boy I’d wanted for so long. But he would never have children. Part of his diagnosis, rational or otherwise, was the potential end of the road for the little dynasty I’d planned. And it hit me hard.
Big sister watches her brother sleep
As the first year of Parker’s life passed, much changed.
I met the love of my life. I learned how to love children who weren’t my own. I discovered how valuable, appreciated and loved my close friends truly are.
I discovered the value in using my words to help people explore their own similar experiences.
I received an email from a woman. She was unable to have children at all. None. Not one with Down syndrome, not a little girl her spitting image, not even my little perfect package I lost in my first trimester and never named. She was unable to experience the joy of carrying a baby and passing on her genetic line.
She had Turner syndrome.
While symptoms are few and far between, compared to a Trisomy or more serious genetic conditions, in many cases the women who have Turner syndrome experience fertility issues.
I got to know her, and listened to her cheery voice on the phone. I learned her story of failed IVF- a sadly common story of expense and babies that never eventuated. She was blessed to have had a close friend donate eggs. Her and her husband used them to attempt a pregnancy and start their little family. It failed, and all she told me of was her love for being given a gift- an attempt at new life. There were no regrets in her story.
I met her, and watched her gaze at her new husband with nothing but love in her eyes, tell anecdotes of meeting his parents for the first time, and let her comfort me for months every time my son’s surgery was rescheduled or I had a houseful of sick children. Problems she hadn’t ever had the chance to experience for herself.
I found myself in a counsellor’s office with both her and her husband, my supportive partner at my side.
Then I went to a fertility clinic. A specialist held my hand and took me through the process- 12 days of daily needles in the stomach, my worst fear. Pages and pages of paperwork, which I hastily scribbled out while still at the clinic. Syncing cycles with her, a short procedure on both my ovaries under a twilight anaesthetic, and the chance to be a parent for a husband and wife who had spent their lives coming to terms with their life not fitting the stereotypical story, the story of ‘How it’s meant to be’.
It begins! Egg Donor paperwork from the lovely folk at Life Fertility in Brisbane
It’s not a hard process, or a long one. I’ve known her for almost a year, but the whole process and our actual cycle will take around 4 weeks. To donate eggs, I simply undergo IVF and the end transfer happens with a different womb. The odds of our success are very high- she is healthy and young, and so am I, at 30.
She might have a little girl. Her daughter might look exactly like me, or perhaps her husband or mother in law.
She could have a little boy, my genetic son. My bloodline could be passed on, through another complete family. I could potentially watch my alternate reality- they could have their 2.5 children and stay happily married and retire and watch their grandchildren grow.
I will get to watch it all play out on her Facebook, as I scroll my feed and a version of my face on a child pops out that I’ve never photographed. I might be at birthdays in the future, because we’ll always stay in touch. My daughter already calls their future donor children ‘egg brothers’ and ‘egg sisters’.
But one thing I will never do, is regret this choice.
Because I finally understand the power of leaving a legacy and wanting the world left a better place, for future generations. It doesn’t matter who your birth mother and father are. It doesn’t matter what’s in your DNA. Genetics are irrelevant- having my son with Down syndrome has taught me that.
I guess I never do, because I don’t ever expect anyone to be so mean.
I was pushing Desi on the swings, as high as I could. She never gets scared of anything. Not even all the doctors. Mom calls her Destiny the Brave. She loves it when I get to take her to the playground after school. “She loves her big sister,” Mom always tells me. “Loving someone makes you brave.”
All of a sudden I heard girls laughing behind us, and I didn’t feel so brave. It was ugly mean laughing, like the Joker in Batman. And I could hear those words, the ones I’m not allowed to say. I wouldn’t ever want to say those kinds of words anyway.
Desi didn’t notice, and she never stopped smiling at me. She just kept giggling. Most people love that sound. I do.
“Look at the little retard baby! Hey, retard!”
I hate that word. I don’t hate anyone. I’m not supposed to. But I hate that word more than anything.
How can people just hate someone they don’t know at all, someone so totally gentle and sweet who doesn’t even understand what it means to be mean? I hope she never understands that.
I caught the swing and stopped it, holding Desi in place before I turned around. She’s still pretty wobbly sitting up on her own, even in that little bucket swing. She’s almost two, but she still needs some help with stuff like that.
I wished Mom was with us. I took a big breath and tried not to sound as mad and scared as I was. The girls were bigger than me. Teenagers. High schoolers maybe. At least middle schoolers, but they weren’t in my sixth grade class. Nobody in my class would be mean to Desi.
“Don’t say that.” I stared them down and used my best calm voice, the one my mom said was best to use with people who don’t understand why that word hurts. She’s really good at explaining. I usually don’t have to.
“What difference does it make?” the taller girl laughed. “She can’t understand anyway. Can she?”
I wanted to run into her and knock her over, pull her hair out maybe. At least punch her really hard. Or maybe just cry and hold my sister so she wouldn’t have to hear those words. But I took a deep breath instead, like my mom said she has to do sometimes when people give her reasons to educate them.
“Her name is Destiny. She was born with an extra chromosome. She has Down Syndrome. She’s no different than us and she’ll be able to do everything we can, just in her own way and her own time. She’s a person just like you.”
The shorter one snorted. “Whatever. Let’s go, Ashley. We don’t need to waste our time on freaks anyway.”
They started to walk away. I wanted them to go away. But Desi squeezed my hand and made those cute little kissy noises she always makes just for me.
“Hey!” I yelled. “I was wrong.”
They stopped and looked back at us with weird duck faces. “Well, duh. Of course you were. The kid’s a retard for sure,” Ashley chuckled.
“No.” I picked up my chubby little sister and held her close. She was still giggling. We walked up to the two girls. They seemed so much bigger up close. Or maybe I felt smaller. But I had to say it.
Desi’s little fingers were twirling in my hair and I’m pretty sure she was blowing bubbles all over me but I didn’t care. “What I meant was, I was wrong when I said my sister is just like you. She will never be anything like you. She will never be mean and hateful and judge people based on how they look or what they can and can’t do. She is different. And I’m glad.”
They didn’t have anything left to say. Neither did I. My eyes stung. I held Desi tight and tried not to jiggle her around too much as I walked as fast as I could away from them. I stopped at a bench at the edge of the playground to catch my breath. When I looked back, they were gone.
I sat down and realized I was crying. Desi was making the kissy noise and squishing her face against mine, pressing her little palms on my cheeks like she wanted to wipe the tears away. We sat there for a few minutes because it was all I could think of to do.
“That was a pretty brave thing you did.” I had never been so happy to hear my mom’s voice. Before I could even turn around she put her arms around me and hugged me from behind the bench.
“You saw?” I asked. “They were saying the “R” word about Desi. I was so mad.”
“That word makes me mad too,” Mom said. She sat down beside us on the bench. “I always watch when you’re out here, Sara. We protect the people we love.”
“Loving people makes you brave,” I smiled.
Destiny started to giggle and crossed her arms over her chest. Mom and I looked at each other. Was she really doing it?
“La yoo,” she grinned, still criss-crossing her arms like she was giving herself a hug.
I guess she really had been paying attention to that baby sign language video we played for her all the time.
My child has Down syndrome. It is a condition which can have an increasing number of symptoms over time. This means intense and early intervention will ensure the best quality of life for Parker.
My son is two. When I think about his future, I think of words like, ‘independent living’, ‘behaviour management’, ‘thyroid maintenance’, ‘quarterly check-ups’, ‘funding support and planning.’
Having a child with a disability isn’t unlike running a small business. You have multiple support people to recruit, a team of medical staff to manage and engage with, specialists and therapists to hire and fire regularly.
You are told over and over again to ‘Build your community’. ‘Support is everything’.
I manage my son’s life in a number of ways. I use spreadsheets, stacks of paperwork, mail opening and sorting routines, family calendars and intricate negotiation skills on the phone to countless people rescheduling things at the last minute.
I try and limit gluten in his diet. I use well researched specialized supplements and I try and do what I can to enhance his health, as well as our own, without the additional time and costs impacting the rest of my family too heavily- or my own life. Yet I research and dig deep in every forum I have, find the little ‘no nos’ and try and discover why aluminium is pure evil, or parabens should never cross your threshold.
Did you know we should all be drinking camel milk, on our organic farms away from the evils of wireless internet and aluminium foil and non-stick pans? For reals. These things are all ‘optimal’ for health and development. They really are.
Today I read something that had an impact on me. This was a mother of a child with Down syndrome- talking from the heart to a group of other mothers.
“Remember, they’re our children, not our projects. We’re mothers, not superheroes. We’re not here to save them. Just to love them, and do our best to take care of them.“
As a single mother (or, just a mother in general), I believe my needs should generally come first, and I am working on putting my own ‘needs’ above the ‘wants’ of my children- this allows me for the most part to be healthy, happy, and parent exactly how I want to, instead of ‘as best I can under the circumstances’. Because my life is mine, too. It doesn’t belong to my daughter or son. I am not a martyr, and the decision I made to have children does not mean my entire life comes to a crashing halt until the day they become independent.
I’ve written before about comparing this life to an exciting and rewarding work project. Yeah, it feels like that sometimes. But P is for Parker, not project.. and when I start to feel the anxiety build and the options and paths start to feel limitless and infinite, I put down the spreadsheets and further reading, close my calendar app, get a pizza delivered, and ask my wonderful, naughty, annoying, beautiful toddler for a cuddle.
Exactly two years ago, at 11:50 pm, I was laying in a private room at the Mater on level 8.
They always put mums in a private room, after their babies are diagnosed at birth with Down syndrome. I guess it’s so the mothers can cry in private.
Minutes after birth
I didn’t cry until the next morning, when I realised you would be hungry and wanting cuddles, down in special care. I’d sat on my bed alone and stared at the wall for ten hours. I didn’t sleep until you were three days old.
At this time two years ago, I was laying in my bed trying to figure out how the hell my world had just crashed around my feet and I’d lost the little boy I’d dreamed of, for those nine long eventful months.
Parker in Special Care
But I gained infinitely more.
Parker Myles, I couldn’t begin to imagine my life without you in it. The thought makes me tear up. And today, the day you stopped being a baby and became a little boy, I got to stop for a moment and remember that.
The birthday boy with Uncle Dave
I watched you smile and clap listening to the Happy Birthday song, remembering the hospital days when I couldn’t know what it would be like, couldn’t picture this moment through the haze of fear.
You make everyone smile and forget what they are saying mid sentence because you are trying so hard to catch their attention and flash a smile straight from your eyes.
You’re a born show stopper, a truly compassionate and clued in child, and I love every minute of having you for a son.
I woke up this morning and answered my phone.. Your surgery is booked for the 27th next week. 6 small procedures and I know you can handle it.
Parker, 2 years old
You’re a big boy now.
And I promise never to be scared for your future again.
Some days, I have a certain smile on my face. It’s got some strategic dimples and is accompanied by eyebrows of resignation. I use it in public.
It’s something I do when my son is with me.
Oh, I never mean to pull that face. Apparently I’m just expressive.
Parker is almost 2. When he struggles out of my arms and stands at my feet, people smile acceptingly of his toddler antics, or ignore him like they do most babies. Then he finds freedom, plants on his bottom, and spins around a couple of times. They start to double take- they’re not sure why he’s different, but their subconscious has registered his lower tone, ease and fluidity of movement uncharacteristic of a clunky heavy toddler.
They notice he isn’t walking yet.
They look at his tiny ears, his precious eyes with epicanthic folds and delicate nose, his advanced skills for his infant size 0 body.
Then it clicks- he has Down syndrome.
Their demeanour changes.
In my entire life, I have never before had so many people try and catch my eye, than in the moment after they realise this fact.
They want to say with their eyes, “Your son is a doll! He is so cute! I didn’t know they are so cute!” Or, my “insert relative/good friend” has Down syndrome!
Not all hold back. A fair chunk of them come out and say it. And it’s lovely, we have a moment, and move on. A few will keep going, and say something sweet, supportive, or in the spirit of parenting comrades.
Then you get the others. They’re not the majority- but they are the hardest type of stranger for me. This type of person just wants to share, and overshare. They will keep me for 20 minutes if I don’t interrupt or break their flow. They want to bond, they are seeking a connection, and it can be overwhelming for me when I’m just not operating in their version of reality.
I feel that smile come over my face. It’s a shield- not blank, but I’m on guard. I can’t take on much of what they’re saying- my brain is elsewhere. At that moment of my life, 80% of the time I don’t want to ‘educate’, or politely correct their disability language, or explain why their expectations are too low/high/limited for the standard I set for my son. I just want to get my bloody groceries. But I don’t want to be rude to someone reaching out to connect to me.
This conflicts with the other part of me, that just wants everyone to ‘know’. I want to yell, “This doesn’t define me! This isn’t all there is to me. This doesn’t define me as a parent or a woman and my pending sainthood is not in the mail, and it doesn’t define my family unit!” I want them to SEE, to understand, with a clarity they aren’t yet privy to.. to know what those in the circled wagons around me do.
That we cannot let words define a person.
But I accept this is new to them, and most importantly- they just want to share THEIR version of reality with me. When I sense they’re not really listening, though, I trot out one of a few elevator pitches I have up my sleeve for different occasions if I sense their disinterest in hearing much else.
I rehash the conversation after I’ve walked away, and try not to be anxious about anything I forgot to say or do to magically empower them with a new level of awareness.
Then until I get to head home, I just smile. I keep it fixed there until I don’t have anyone trying to catch my eye.
But, the next time I heard that phrase that so often goes screaming through my head, it changed everything for me.
I was talking to someone close to me, and we were having a hard conversation about something important that affected them. It was a big deal for them to share with me, and they were not sure what my reaction would be.
I was presented with the information about them, and I didn’t know what to think or how to react. So I developed my preconceived notions about what I was hearing, and I started to put some questions together. Got ready to give my two cents worth, throw in some opinions about friends who have been through similar experiences. Tried to help myself deal with the situation presented to me. To feel more comfortable about discussing it.
Then I heard those magic words.
“This doesn’t define me. It’s not all there is to me.”
I looked in their face, and saw that smile. The ultimate defense mechanism- the exact same smile I plaster on, most days.
And then I shut up, and I listened. I learnt a lot that day.
Sometimes, I can’t fix things by doing all the talking.
I often find myself writing for new parents of children with Down syndrome and this post is no exception.
Even though my main audience will always be those outside the Down syndrome community, to provide a snapshot of what life is like for one parent of a child with additional needs, I am always drawn back to showing those yet to begin their journey a little of the intense joy they have in store for them.
This resonates strongly with me, as I found myself in a place where I didn’t know my up from down, or a nasal cannula from a foot probe, and I scoured the internet frantically for any new information (AND PICTURES) which would bring me some release from the many fears I had for my son’s future.
I had my own list of fears to work through.
How would he sound? Would he be able to speak properly, or talk at all? Open and fluent communication is a hugely important part of my life, and my family’s. Relieved, I spent many hours on YouTube watching videos of young adults giving talks, lectures, speeches and hanging chatting with their friends.
Would he have friends? A social circle, a community? Would he be dependent on me dragging him from one organized activity to another? Do adults with Down syndrome truly have jobs and get married, or were they just the one in a million stories touted to idealise people with this disability?
What would he LOOK like? Would he look like me, or even his older sister? Would he look like an Abianac, or would he just always be another kid with Down syndrome?
I spent many hours staring at my newborn, trying to spot features, to see how ‘strong’ or ‘mild’ they were, and to decide what his toddler, child, and adult face would look like. Slow the features blurred together and I could no longer see the ‘Down syndrome’ unless he smiled from ear to ear, or tilted his head to one side and stared at me, very still.
In all those hours I spent staring and imagining what my son would look like, I never suspected the truth of what I would have in front of me, 19 months down this road.
I have a little boy who smiles. He laughs, he plays, covers his ears when he’s frightened, laughs out loud when his sister does, even when she’s in another room. He sits on the mat at reading time in his nursery, and cuddles his teachers like they’re his extra much-loved mummies.
I have a little boy who is an Abianac through and through. He will always be more a part of his family than he will be a collection of symptoms. He is so, so much more than that. My little boy has perfect tiny ears, a hilarious speed-crawl, a habit of knocking the rubbish bin over, and gives me long goobery kisses sweeter than I’ve ever had.
He even looks a little like his sister at the same age.
But above and beyond all of that.. He is his own person. He is not just an Abianac, or ‘Kat’s son’. He will never just be ‘that kid with Down syndrome.’ He is Parker Myles Abianac, and the only person he will ever be is Parker. His own, individual, unique perfect little self. Just like everybody else. 😉
parkermyles.com 