“She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings”.
I am honoured to wish my mum a very Happy 60th Birthday.
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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I am a motivational speaker, an aspiring author and a blogger. I love, love to write but I had no idea that in my fortieth year, I would find the courage to take up my mantle as a full time inspirational speaker and writer. I did not begin my adult life planning to become an inspiration but God had his own plans for me.
I grew up in an unhappy home and by the age of eighteen I became a mother. Being a teen mother was painfully difficult but learning that my daughter, Savannah was diagnosed with cerebral palsy was even more so. It was a torrid period in my life. I was married and divorced by the time I turned twenty one years old. I mourned in silence the loss of my hopes and dreams for my daughter and for myself; as I slowly came to grips with the reality of her diagnosis.
Teenage pregnancies and sex outside marriage was frowned upon then just as much as it is now. It’s still astonishing to me that even now we don’t do enough to address the “why” young women look for love in all the wrong ways in the wrong people. My own self loathing and self doubt coupled with the taunts of those around me should have destroyed me. The assumptions that I would not be able to parent a child, and more so be capable to parent a child with a disability, chipped away at what little self-esteem there was left in me.
I have journeyed a long way from the 18-year-old who thought she always had to do what everyone else deemed right for her. I was forced to do what was right for Savannah first and in so doing I slowly learnt to let go of everyone else’s expectations of me. Being Savannah’s mother meant learning to fight for her in ways that took me to the ends of myself. I had to learn to parent her while I was still trying to figure out what being a whole person meant for myself.
This is an incredibly difficult thing to do, even for parents who planned their lives and had everything go according to that plan. It is a complicated struggle to figure out who you are as a parent when your child has a disability. Sometimes the battles are not just with other people. The toughest battles are often the battles that erupt within us. As a parent of a child with a disability, it was incredibly difficult to fight my own preconceptions and expectations of who I wanted my child to be. I am still learning all the time, as each new season unfolds how to accept the life that lies before me.
Savannah has become an inspiration to many people from many different communities, but non more so than to me. She is also autistic and struggles with complications from her physical disability. She is the reason that my husband Michael and I met and fell in love. We have two more children: a daughter Talisa (16) and a son Eli (10). Savannah’s life continues to test my faith in God, in myself and in people and over and over again I find that Faith, Hope and Love remain.
I started out as a parent at eighteen and went on to carve out a most unique career that is diverse as it is fulfilling. From talking publicly about raising my family in the face of disability, to working as an assistive technology advisor, to being a motivational speaker, to using my skill as a speaker to host events and to conduct trainings in various sectors; I found so many beautiful pieces in these experiences that make up this life I live today.
I was chosen as a South African to Watch by #SA Bloggers for 2018 and I was awarded the Most Inspirational Blogger by the #SAMommyBloggerAwards.
My family lived through more heartaches and struggles than my 18-year-old self could have imagined she would survive. And yet I did.
I learnt that life is frail and must be handled with care.
I learnt that there are heartaches that will never be healed, but living with a broken heart doesn’t mean you are broken.
I learnt that people need people, but not everyone wants to be the person who is needed.
I learnt that unconditional love is real and a rarity, and I am blessed to know it.
I learnt to trust the process.
I learnt that people are always more important than things, always.
I learnt that God does not give his strongest fights to his strongest warriors. He helps normal, everyday people to face their difficulties and He never leaves them.
I learnt that…… my true self…… is made up of A Million Beautiful Pieces.
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I don’t believe in assuming what Savannah might be thinking, but just as I imagine what I’d like Talisa or Eli to think about me, sometimes I imagine what deeper conversations are denied to Savannah and I because of her disability.
“I know different” by Tricia Proefrock helps my imagination and lightens some of the burdens of my heart. May it do the same for those of you who walk the same path. And may it help you to be Different to us if you are not on this path.
I KNOW DIFFERENT
by Tricia Proefrock
Dear mommy,
I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.
I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible.
Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.
I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )
I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.
I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.
I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.
I matriculated from a Catholic School where mass always ended with Father Dryden’s greetings “Peace be upon you”, to which we replied “and also with you”.
Over these last few weeks that greeting resurfaced in my memory. In the middle of a storm in my heart that greeting became a rainbow. A promise of something I thought I would never know: Peace
As an ordinary Christian for the last 17 years I read many times about the Peace that Christ left for us. But I never understood it because in the reality of my life, Peace seemed like a fairytale.
This year has taught me so much about people, about love, about acceptance, about family, about my roots and about God.
I have spent too many years of my adult life trying to emulate the women around me especially the leading ladies in churches and the ladies in my social circle. I was never as miserable as those times in my life.
I felt more lonely, confused and wretched when trying to fit into their ideas of being a woman. As a parent to a child with special needs with a constantly changing diagnosis, I was always on the outside of their circle anyway and it took a mammoth effort on my part to just engage with other mothers.
Every now and then I’d be brought in from the outside of the circle for a hug and a measured out pouring of love which I gratefully accepted as my portion. Every now and then a head bowed in my direction in recognition of my potential. But when I asked for what I really needed or bared my very sad soul, their inability to handle my truth taught me then that as a woman, wife and mother, I was on my own.
This year, for the first time ever I found strength in that. Mentors are great when equality and respect flow both ways, but sometimes, for some, the only mentor good enough for the job, is God himself.
Now I’m no great theologian or scholar of the Bible but I’ve understood profoundly and soul deep that my life has been moulded by a master craftsman. I’ve survived too much heartache and have overcome unbelievable challenges for me to believe anything less.
This year was our greatest challenge as a family but we attended five weddings, three bridal showers, gave four parties and showed up for my extended family and friends whenever we could. I served on a board for an NGO while also being employed in a job where I witness deep heartaches and sweet miracles daily.
All this sometimes on too little sleep or no sleep; sometimes with a couple hundred invisible band aids on my fragmented soul I showed up and gave my very best every time.
As I recalled Father Dryden’s greeting, I realised I learnt a great truth this year. I finally knew what Peace felt like.
- It is to accept the path before you, to look at it intently and to embrace it bravely.
- It is to acknowledge that it will be frightening but not impossible.
- It is to know that I don’t have to know everything and trusting that whatever comes, I am enough to handle it.
- It is giving myself permission to walk away from what makes me miserable and to embrace what makes me strong.
- It is finding myself again in dance. Allowing the music to move my body and help me turn bad energy into something beautiful.
- It is to accept that some of us can’t be defined by anyone else’s interpretation of God’s plan. We are only defined by communion with Him and the courage to live our lives outside of the circle that others seek comfort in.
And even knowing this, sometimes in my loneliest moments courage fails me, and I wish for many things to be different. It is then I am stilled by this scripture “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9
As Christmas draws closer, I wish you the best gift of all: Peace. May it be with you and cling to you like a favourite sweater or a great lipstick. May it help you rest and when you need to, may it help you rise.
Peace be with you.