I have not written for my own blog for a while because so much was happening personally. Mostly I did not write because I was struggling to figure out how to deal with some painful insights I have learnt over the last six months. Do people care? What does it mean when people say “We know it’s hard’ and then have expectations of you that are adding to your “hard”? Or when they take it upon themselves to help you in ways that cause more damage than good.

I haven’t figured all of that out yet but I know it’s worth writing about because so many of us are making a life where the sun rarely shines. But we still need the warmth of the sun and to be showered with understanding and compassion so that we can continue to thrive just where we are.

Having the title of SuperMum is no blessing. It means you can’t have a bad day or you can’t sob uncontrollably on your kitchen floor or you can’t stay in bed all day wishing the wrongs will right itself. Being SuperMum means being lonely and that is not a healthy role model for our children.

To me being Supermum means being able to say you need “alone time” or “girl time” or being able to say…”It’s too much. I can’t do this anymore”. Ooohhhh, I said the unthinkable! Yes, Supermum means being human and allowing our children and our families to know that we all have limitations and boundaries.

Every curve ball that life throws at us need not be an opportunity to prove that we can do it all and be it all. It is an opportunity to say “Because I care about myself and the many roles I am, I am going to say No”. While I may still have to deal with certain curve balls like choosing between what is right for my daughter and what makes me happy; I don’t have to glam it up and make myself some kind of false hero for being mum.

There are far too many people who become heroes and saviours just because they are being kind and caring to their children or their spouses or their parents or people who are vulnerable.

I’m sorry. We don’t get hero status for supporting those who wear the body of vulnerability. They are the heroes.

When we are made to be larger than we are as caregivers, as foster families, as adoptive parents, as parents to children with disabilities, as spouses to a person with Alzheimers, and I’m guessing you get the idea here; we need to be vulnerable too. Living in exceptional circumstances means being given the opportunities to see both the magic and the tragedy of people living with bodies or minds that are different to us. It means for us as the witnesses to these extra-ordinary lives, we have to choose over and over and over again to live in the magic despite the darkness that is ever-present.

Simply put, in our (that is Michael and I) case and for so many other families like ours; being needed all the time, having someone else’s entire happiness, health and quality of life completely on our hands forever while knowing that often we have to make life altering decisions for them; and that the full impact and consequences of those decisions they will have to live through; is downright heart wrenching.

And no, it is not a lack of faith because in my case; it has been faith that has gotten me out of bed to do this over and over gain. It is not a lack of understanding; because in my case I have been both blessed and cursed to see wider, deeper and further than the issues at hand. Carrying a family through all that we have faced and continue to face while ensuring that all our children have space to grow and blossom in spite of living on the edge of the world; is no mean feat.

So why am I penning this deep and soulful post after so long? Since I’ve opened up about taking this year to “do me”; I have received unwarranted advice, been ripped apart by well-meaning people, my children have been given unsolicited advice about their future choices and the list goes on. I am proud that my children have a very close bond with both Michael and I.

However this does not protect them from people who pre-judge them because one of them has special needs. In fact Talisa and Eli even have a dark comedy routine about it. They mockingly joke about how people decide that they are neglected, how Savannah is our favourite, how to respond to people who ask really offensive and yes stupid questions like “how do you get on with your sister” or offer advice like “I think you don’t want that. You are just trying to make your mother happy”.

In the last few months I have cradled my children in my arms while they have wept when other people have confused and hurt them crossing the boundary into the territory that is only for Michael and I. So when my children are given unsolicited advice by people who know nothing about raising teenagers in a family with someone with special needs; they have no idea of the damage and havoc they wreak.

Or the effort it takes for me to like the world again every morning.

So here is the take away from this post:

*Don’t judge ever. It doesn’t matter what your credentials are or what your experiences are. Don’t judge.

*Do not ask children, yes even teenagers, questions about their parents, their siblings or themselves unless you have explicit permission from their parents to do so. If you are not the person who will stand by them forever, then you don’t get to do this. That includes relatives and family friends.

*Honour each other as parents. Being hip and cool to someone else’s child at the detriment of hurting that relationship is NOT hip and cool. Supporting each other as parents is vital to the overall health of our society.

*Just as babies require much tender, love and care; so too do teenagers. Their hearts and minds are very susceptible to hurt and confusion. Handle their confessions with care and their ideas with respect. It’s unhelpful to offer advice that makes them question their parent’s intentions. Just as the weight of responsibility of caring for babies falls on parents; so too does the weight of helping teenagers mature into adults.

*When you meet families who are doing the seemingly impossible, don’t point out to us what you believe are the potential hardships of our lives. Just because raising a family in unusual circumstances might be unimaginable to you; we are doing it all day everyday. This is our normal: thriving where the sun doesn’t always shine, amongst the boulders and the weeds…choosing to be magic every single day.

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