I am sitting here at my keyboard staring at the screen, my eyes bulging from the glow and hum of the electromagnetic field.
You see, I’m contemplating whether to publish this post or keep it to myself. I find writing intensely therapeutic and even more so when it involves purging feelings and ideas that I am not able to articulate on a daily basis.
Ever since Ruby was born 10 years ago…(wow, to say that even blows me away)…ever since Ruby was born 10 years ago with Down Syndrome I have become acutely aware of the victim mentality that it is all too easy to fall into as a parent of a child with special needs. Playing the victim allows you to solidify your role as “chief caretaker” insisting that you are the only person who can really care for your child. Being the victim allows you to deflect from the intensity of the work that needs to be done to allow your loved one to become independent.
From time to time I’ve caught myself in that role because it feels good…it’s comfortable and easy, but to just accept that my child will fit the description that came with her diagnosis imposes serious limitations and allows the cycle to further continue in our society.
“Her speech will never be clear because of her low muscle tone”
“My child will always be in nappies, when I am old I will still be changing nappies”
“My daughter will never learn to drive or get married”
These are all the illusions we tell ourselves because in reality, all of the above requires a hell of a lot of hard work and how can we ever predict what anyone on this earth is capable of? Most of the time, it requires so much more than just hard work. It requires blind faith, countered with a shadow of a doubt whispering “Why are you even bothering? She’ll never be able to…..”
But above anything, raising a child with Special needs requires tenacity. Imagine climbing the biggest mountain while rigged to an elastic at the base of the mountain. Imagine walking up 1200 m only to be pulled back 800 m by the rubber band when tension on the band has reached it’s peak. Repeat, and continue. It can seem daunting and at times pointless as you wonder if you’re ever going to get to the top.
It is our job as parents to help Ruby develop into the person she came to this earth to be, but in order to do this, it is crucial that we are aware of the possibility of slipping into victimhood.
Yes, we are allowed to moan and complain when things get tough. Yes, we are allowed to say we need help, and yes we are allowed to want to walk away and leave it all behind from time to time.
But we are also allowed to celebrate the incredible beauty of the lives we live, no matter how hard they may seem at times.
Down Syndrome has taught me about true beauty, in more ways that I could have imagined. It has redefined beauty and love for me, and personally, I feel that’s something worth sharing.
To celebrate Ruby’s 10th birthday I would like to share 10 things that living with Down Syndrome has taught me.
1) Pain and love are intricately connected
If I could sum it up in one sentence I would say pain is the catalyst for love. When Ruby was born, the emotional pain I experienced stemmed from constantly navigating my way through society’s perceptions of what my child “might be”. It was clear to me early on that the stereotypes and perceptions of people with Down Syndrome 10 years ago were not in line with the full potential and possibilities. With every comment of “Oh, she’ll be able to get a job at the supermarket”, to “Oh, they’re so loving, kids with Down Syndrome love music”, I realised that people’s intentions are good, but still felt like I’d been sucker punched.
I found it very hard to find the words for rebuttal. Are they really seeing something I’m not seeing at the age of 3 days old? Can they really predict that my daughter will love working at the supermarket? Why is it that giving birth to my first daughter didn’t come with a prediction of her aptitude, skill, and preferences when she had just arrived into the world? The clarity of these questions comes only years later. At the time all I could feel was an intense longing to prove that my daughter would be more than ok in the world, to share that she would do things and have qualities that others would not have in their life toolkit, and that I was pretty sure that even I couldn’t predict how her gifts and talents would manifest.
So how does this relate to my theory of pain being a catalyst for love? It’s simple. Every time I feel intense pain of misunderstanding and confusion, I equally feel a compelling desire to do better for my girl, and to help her develop into the best human being she could be. It is through my vulnerability that pain and love can do the work they need to do, and for this I am grateful.
2) We all feel the same feelings.
If I had a dollar for every time someone told me how happy children with Down Syndrome are, or that they don’t feel pain like we do……
The image says it all. Need I say more?
3) A deep understanding of what it feels like to be included (or not).
I remember clearly when Ruby was born that my biggest fear was being left out. I had fears of sitting in therapy centres while my friends were all out playing happily with their little ones. This is something I’ve had to come to terms with and learn to see from a different point of view. There have been times where I have felt incredibly lonely, not being able to voice my fears, particularly when it comes to not having control over things like Ruby getting into school, or wondering if she’ll make any friends when she does get accepted. While I certainly made it clear that these were things I felt were Ruby’s right, I didn’t always find it easy to play advocate without feeling isolated.
That’s the beauty of parenting. Bringing up our children brings up insecurities and concerns of our own that we unknowingly project onto them. ‘What if she is left out?’ can easily be translated into ‘What if I miss out something?’ I’m her mother and I have the responsibility of making sure that inclusion plays in her favour without bringing my own issues into the mix. And don’t you just love how that word is being used more and more these days?
Inclusion. What does it mean? Quite simply it’s about being seen and heard on equal ground with others, to have your needs met at your own pace, and to “have a go” at life.
4) Being in the moment.
Before having Ruby, I spent a lot of my time reliving the past and worrying about the future. There is no better way, in my opinion, to learn the meaning of mindfulness until you have a child with Down Syndrome. You are more perceptive to the impact that your words may have as you absorb the words of others. The comments and assumptions that sometimes innocently come your way are a phenomenal way of teaching us how to become more mindful when we speak. Suddenly, words you may have used in the past no longer feel acceptable. And as everything seems to move at a slower pace, you find yourself adjusting to that pace, even frustratingly so at first, only to realise that it actually feels pretty amazing to sit and observe the world in awe.
5) Having Down Syndrome does not make you a hero (unless of course you have actually done something heroic)
Equality is a double edged sword. I have always wanted my daughter to be considered equal, and yet I don’t want people to take pity on her and say how amazing she is when her behaviour dictates otherwise. Ruby is a kid, and like all kids, she needs to learn and respect her boundaries so that she can grow up in society as a respectable young adult. By telling her she is a hero, or that she is amazing when in reality she has been quite difficult is something that can be detrimental to her growth and development. There are so many other ways to foster positivity rather than giving false titles. Has Ruby done some amazing things? She certainly has. In fact I am reminded daily of the struggle that she faces that her sisters don’t seem to have. Whether it be buttoning up her own shirt (which is incredibly frustrating for her), or learning concepts at school that her brain simply can’t process at the same rate as the average child. She is a warrior indeed, there is no doubt, but I would only give her that title after watching her succeed after applying herself and trying hard, just as I would encourage my other children to do. It’s not that I don’t think she could ever do something heroic, but I’m just not willing to let her sit back and accept a label that she has not yet earned.
6) My other children are becoming better human beings because of Down Syndrome.
I don’t know any other way to say it. I’ve written it several ways, wanting to emphasise how much these amazing girls have helped to shape Ruby’s life, and to support me on my journey as a mother. Until you live in another person’s shoes you can never really know how they feel, but I can tell you how they feel as we all live under the same roof. Life with Ruby is exciting and fun, and full of heart, but it is also incredibly stressful and full of anxiety for all of us as we navigate our way through being her mother, father, and sisters. The girls are very tolerant, but with recent issues in behaviour with Rubes, it has been increasingly difficult to make sure that our energy is evenly distributed amongst all 3 girls. Ruby takes a lot of time and energy. She demands centre stage to the point of exhaustion if you’re not properly equipped with the right tools to cope. Down Syndrome has taught us all to be more tolerant, resourceful, understanding, and honest about our feelings. It’s not uncommon for the girls to tell Ruby she’s being annoying, and she knows full well when she’s rocking the boat. All in all what I love is that they are all sisters, acting as any sister would do. Ruby doesn’t get special treatment from them, nor do we make excuses about her behaviour. It makes me proud to see the love they all have for each other.
7) Our basic human need is to be seen and heard.
Having Ruby has taught me over and over again that we really all are the same at the core. When you have a child with Down Syndrome, generally you are made to feel like you’ve arrived on another planet. Medical Practitioners will give you a long list of things that you’ll have to “look out for”, and your internet search will give you a long list of problems that will have you crawling under your hospital bed in no time. And yet, when I had Ruby, I just wanted to be seen and heard. I wanted the world to acknowledge that my baby was worth celebrating just as much as any baby without Down Syndrome. I wanted people to really want to get to know her not because they felt sorry for her, but because they could see her value. Turns out we are lucky as we have been blessed by incredible support through friends who both see and hear Ruby for who she is. Our biggest hope is that Ruby will have the tools in order that she can make her voice understood by others in her own unique way.
8) Different is beautiful
It doesn’t take long to work out that a large majority of the world are followers. We follow trends, cut our hair to look like celebrities, drive the same cars our neighbours drive, and Facebook, Instagram, and Tweet our favourite brands through hashtags. Most of this is done in the name of beauty. But what is beautiful? How do we define it? When I first was told that Ruby might have Down Syndrome, I have to be honest. I envisioned a bad haircut and rejection. That was my version of Down Syndrome from my experiences and conditioning as a child. Down Syndrome has taught me about diversity and what the true meaning of beautiful “inside and out” really means. Ruby shines because she knows who she is. She doesn’t care about what others think about her appearance or her abilities. She does what makes her feel good and that to me is beautiful.
9) Having a child with no boundaries is an opportunity to expand your own horizons.
Ruby really has no limitations when she decides she wants to do something. I have seen her do it again and again. From spontaneously going up to a stranger and giving them a genuine hug, to deciding to break out into a full dance routine in the middle of a mall, she has the admirable quality of being genuine. Experiencing her spontaneity reminds me that it’s something we all have within us. Whether it’s talking to strangers, or trying not to care when I feel like singing out loud, I know I’ll always have a supporter in Ruby.
10) It’s ok to ask for and receive help
It takes a village they say, and yes I’d agree! I’m not naturally a person that would ask for help. I guess it comes from being the eldest child in a large family. You just learn to get on and do what needs to be done. Down Syndrome has changed that for me in many ways. Just after having Ruby I held myself on a pedestal of perfection, not wanting any cracks to appear in the fears I held deep within myself of unworthiness. This carried on for some time until I realised that life becomes so much more enjoyable when you collaborate and accept help from others, while dropping unrealistic standards. Ruby has pushed my limits so far at times that the only answer to carry on without having a nervous breakdown is to ask for help. From getting support for our marriage in coping with the stress that comes with parenting Ruby, to saying yes and letting go when someone asks Ruby to come over for a playdate, or learning more about healing modalities that help us to manage stress, I am forever grateful for the connections and relationships that asking for help fosters. It is because of this girl and her magical extra chromosome that life has become richer, fuller, more challenging, and rewarding all at the same time. Down Syndrome has taught me that beauty of struggle and triumph and I wouldn’t have it any other way. Happy Birthday Ruby! You are one in a million and we love you more than I can ever say….