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My Story March 27, 2018

This is my story

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.

To book me for an event please click here:

This Is What I Do

My Story March 21, 2018

The Best Carpool Karaoke Made Me Cry Too; But Not Why You Think

Have you seen the beautiful video celebrating children with Down Syndrome? If you haven’t please watch it. It’s an internet sensation and I applaud the creators of the videos. You can view the video at the end of the post.

When I first saw it, Michael and I were awake at three thirty on Monday morning with Savannah (our adult daughter with complex special needs) who couldn’t sleep. We found her in her wheelchair with her curtain completely drawn back, exposing her bedroom to the moonlight. She was looking outside and just crying. We helped her back into bed and comforted her as best as we could. While I waited for her to fall off to sleep, I was scrolling through my Facebook feed. That was when I first saw the video. The caption stung me because it contained the words “love, courage, commitment” attributed to the moms.

A couple of things were highlighted here especially as I lay awake with my twenty-one year old child. Firstly, all of the children featured were young children with Down Syndrome. Where were the adults with Down Syndrome and their aging parents? Adults with disabilities who are still playful or are still hugging a Barney stuffed toy may get the “cute” vote but people are generally uncomfortable when it comes to childlike adults. Yes, there are many,many people with disabilities who are independent and are adults in their own right. But there are also a large group of people with disabilities who will love Teletubbies forever, who will be thirty years old and still sit on their parents laps, who will obsess over a toy from a kiddies takeout meal that they received twenty years ago and who will happily bob around to long forgotten Disney movie songs. Theses families would have been doing this right along with their children for all those years. Even as they are both aging. LOVE,COURAGE and COMMITMENT looks like this too.

Secondly, it saddened me that the reality of the world we live in is that it is easier to share a video than work alongside families like us to keep us strong and committed for the long run. I recently met a mother who is seventy years old. Her fifty year old son is a person with a disability. He cannot live with her anymore so he is in a care home. She is still fighting. She is trying to get him a better wheelchair but his chair costs more than her medical aid company will pay. He sometimes goes to hospital and it’s a fight to get a suitable vehicle to transport him. At seventy she is still fighting. She talks to people, she yells at people, she writes letters, she tries to raise funds, she visits her son, she makes sure he is properly cared for and she hasn’t stopped for fifty years. That is what COMMITMENT looks like.

My best friend is a mother to an adult daughter with Down Syndrome. My friend has always been a single parent. Her daughter’s birth father decided he had a choice and chose to leave. Twenty six years later, my friend works two jobs so she can provide for her daughter. She has assisted care organisations when her daughter lived there and still volunteers her time to help organizations who aid children and women in need of support; believing that one day it will come back to her daughter. That is what COURAGE looks like.

I am never impressed by people who carelessly say “I love people with disabilities”. In strong families where being a person with a disability is valued and respected, LOVE is never in short supply. But physical and emotional energy is difficult to have for as long as you both live. If I had a ten rand for all the people who have said they love Savannah and how much she means to them; I would be super rich today. But their love wasn’t the kind that was about her and what was best for her.

When families love their children with disabilities we love no matter what happens or how we feel. We understand that the expression of our love may be one-sided. We love even when we are tired of doing the same thing over and over. We love when we are sad that we don’t have choices because we are bound to our child’s fate. We love when people who know nothing about our lives judge us. We love because we actually understand the meaning of LOVE. It is not a weakness to love but the greatest strength you can possess.

So next time when you share a video about families with disabilities that gives you goosebumps and moves you to tears; ask yourself this: If the people in the video were your neighbours or in your place of worship or were a relative would you help them and love them? Without the goosebumps and tears, could you give them your love, time and support? Even if it made you uncomfortable?

Do you see the people with disabilities in videos as people with feelings, dreams, emotions, fears and the capacity to love? When you write beautiful captions about their families or carers without acknowledging the people who the videos are about, you nullify their humanity. If you write anything about our community, commend both the people with disabilities and their families. You can’t decide which of us meets the criteria for accolades but you can influence the support and understanding the entire family receives. That is true awareness.

And to Love especially in our families who are living the special needs life, Love is simply this:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13:4-8 (NIV)

Thank you to the moms of Designer Genes Facebook group for definitely the Best Carpool Karaoke.

My Story February 27, 2018

Loving Savannah – by Talisa Pillay

What a surprise for Michael and I to read Talisa’s essay. Her teacher wrote”Look after Savannah – she is a blessing. Treasure what you guys have. I think with some polish you can be a great writer”.

I agree.

Here it is.. Talisa’s perspective.

Who is Savannah? You may ask. Well she is my almost twenty year old sister. No biggie,right. You are probably thinking just a twenty year old girl in varsity who goes out to parties and gets her hair done every week at the salon. Just like any other twenty year old. But she is different. Savannah is uniquely different.

Savannah is autistic and has cerebral palsy. Autism affects how she experiences the world. Her brain is just wired differently. Cerebral Palsy affects her body. It doesn’t function the way ours does. She also had an operation to correct her scoliosis. She had rods put into her back to keep her up straight. The good news is that her back is straight. The bad news is that she lost her ability to walk and now uses a wheelchair.

That was honestly the hardest time for me. I couldn’t grasp the idea that one minute Savannah and I were playing Hide-and-Seek, and the next minute she couldn’t even get from the bedroom to the bathroom on her own.

During that time we lived in a tiny townhouse in a complex. Our unit was upstairs, so my parents carried Savannah up and down those stairs for four years. Eli , my brother was a baby then, so they also had to carry him up and down those stairs. Savannah and I shared a room since I was two years old. When she had the operation I was six years old and my parents tried to get me to sleep in another room. But I didn’t want to be away from her.

Even though the house was small, I have the best memories of that time. Savannah and I used to dance together all the time (before the operation), and we played “teacher-teacher” or “doctor-doctor”. It did not worry me in the slightest way that Savannah was different from other sisters. In my eyes she was and is as perfect as can be.

In 2013, we moved to a bigger house. This house was like a palace compared to our tiny house. It has a pool, a front and back garden, a lapa and even a cottage for my Gran. My Gran’s cottage is way bigger than our old house.

We all have our own rooms. It was weird for me at the beginning; not having Savannah with me. Eventually I got used to it. But there are still times when I miss having her in the same room as me.

I am an animal lover and the best thing that happened to us, is that we have a dog now. His name is Jaime and sometimes he sleeps in my room, sometimes in Savannah’s room and sometimes in my parent’s room. This was the start of a new chapter for my family.

Savannah no longer attends school as she cannot cope with it. She used to attend the Johannesburg Hospital School for autistic learners, but after the operation, she was unable to physically and mentally cope. My parents tried respite care for Savannah to have a break from us and for my parents to have a break from caring. It’s not easy being a parent, but being a parent to a person with special needs is much tougher. We thought we all needed the break but it was not so.

It was too weird not having Savannah there with her music blaring out when I got home from school. I felt sad that she was not there to ask me a million questions about my day. Although these things can sometimes be annoying, that is what makes this family. We all felt lost and empty. I missed her. We all did. When she came back we couldn’t let her go again because our home was not the same without her.

She spends her week days at home and my mother has designed a program so that she is still learning. Everyone in our home helps Savannah to do something everyday. It can be baking, tracing letters and numbers or helping her to type e-mails to her old friends. She can’t read or write but uses a special picture program to type. On week-ends she does whatever we are doing as a family. Sometimes she has her own plans with her friends.

All Savannah’s quirks and strange ways, have made our family weird and unique. I would not want to change that! I will always continue Loving Savannah.

My Story February 12, 2018

Where is that darn Cupid?

Here we are two days before Valentine’s Day 2018. The invites for our Valentine’s Day party (to take place on Saturday) have been sent. The party games have been arranged. The list of to do’s is growing smaller. (Just remembered I didn’t add *Get Eli’s gift to the list*. Must do that. List growing longer.)

Oh, and before you get comfortable please get a cuppa of your favourite something because I think this post is a little longer than usual.

So Michael and I have never been big on Valentine’s Day as a couple but we’ve indulged our children, especially as it’s been a big fundraising event in their schools over the years.

For the past couple years, we’ve made a big deal of calendar celebrations for Savannah’s sake. She misses the excitement of how schools make days like Valentine’s Day fun. Since she is no longer part of school or any organisation that would be suitable to her needs, we have tried to recreate the events she most enjoyed.

Our close family and friends are quite something and attend Savannah’s parties with their great energy and love. Savannah has a splendid time and replays those moments in her mind or by looking at photos of the special day for months thereafter. It is these parties that compensate somewhat for all that makes her sad.

What makes Savannah sad? The same things that make any young lady sad. Savannah has given me permission to share this story with you told from my perspective and not on her behalf:

Two years ago, out of the blue after a therapy session, she asked her then carer “Why no boyfriend for me?” My mum who was with them at the time, assumed I had discussed having a boyfriend with Savannah. She told Savannah it’s a good idea to discuss it with mum and dad.

I hadn’t had a conversation about a boyfriend with Savannah so when my mum told me, I had no idea where that was coming from. It was hard to hear when my mum also said that Savannah was just unusually quiet that afternoon.

The same evening as Michael and I cleared up the dinner table, we chatted with Savannah about her question. What ensued was one of the greatest heartbreaks I’ve ever known.

Savannah repeated her question “Why no boys like me?” Michael said because most boys, lots of boys aren’t nice enough. He told her that we don’t know why boys were so silly but that she was always going to be our wonderful, beautiful, special lady and we loved her so much. He told her that Eli and her uncle Darren and he would always protect her and make her happy. She said flatly “No boy look at me dad.” I think Michael’s heart broke in an unrepairable way that night.

I tried to make light of it. I reminded Savannah of some of our friends and relatives who are single and happy. I then told her that when you have a boyfriend and eventually a husband, you have to do crazy stuff for them like their laundry. And that’s gross. I heard myself giggle and say I don’t want her to have to do stuff like that. And that guys are more trouble than she thinks.

I sounded calm and light hearted. So I thought. But I was trying to fight back tears. Later I thought off all the things that might have been better to say, but when you feel like the blood is draining out of you and recognise the angry screams you are trying to block out are your own silent screams, nothing I said would have made her feel differently or would have made me handle that evening any better.

Savannah wheeled herself to her room, still quite down. A few moments later we heard her play our wedding song “Paint my love” by Michael Learns To Rock. Michael and I were stunned. She never played that song before. Then we heard sobs.

I’m very brave when my children need me but that night I couldn’t see her like that. I went to my room as Michael knocked on her door and she told him he could come in. He sat with her for a while while she cried. Then she said “Can’t help me dad. My heart broken. Me be alone now.”

Michael helped her into bed then with a deep sigh, he came to bed. We both just lay awake unable to say anything that would make sense of the evening. Wrapped in all those diagnosis, was still a young woman who just wanted to be like every woman:in love and happy. Where was that darn Cupid and is there an arrow aimed at someone for Savannah?

But the world’s definition of beauty and love doesn’t look like our daughter Savannah. It does not help Savannah that any opportunity to make friends independently of Michael and I is also very difficult to organise.

Savannah can’t attend any adult community day facility because nothing is within reasonable driving distance. Mainstream community groups like youth groups aren’t an option because it would mean that Michael or I have to attend because people generally don’t have the time to invest in getting to know her.

Her being in a wheelchair, having difficulty in making herself understood to unfamiliar people and being autistic is just beyond the abilities of most people to comprehend. Rapunzel’s Tower, Sleeping Beauty’s curse and Cinderella’s wicked step-mother would have been far easier for us to deal with than society today.

For our daughter no Fairy Godmother or Knight in shining army will be arriving to make her the Belle of the ball. People aren’t teaching their children that it really isn’t an imposition to spend a little time with her.

Moreover if they did, I’d be afraid because we’ve already been subject to other parents mimicking her speech in jest or repeating her phrases thinking it would be funny to Savannah too. Not funny. Not at all.

So here we are. We celebrate the things that make her happy. We accept what is true for her and what is true about the world we live in. We don’t like it but we make what is in our control… SPECTACULAR for her.

Valentines Day is going to be awesome for Savannah. Later today she and I are going to get her new red clothing for the party and an Alice band. This year she wants an Alice band. She has already made a special gift for her sister and then she’ll work on her brother’s gift….because that’s LOVE. She knows that better than most.

“Love is patient, love is kind. Love always protects, always trusts, always hopes, always perseveres. Love never fails.”
Excerpts from 1 Corinthians 13.

My Story February 7, 2018

Turn Up The Volume

In my previous post I shared that our family sets goals at the beginning of every year.

Life is unpredictable and a little too tough at times, so it helps us to place some anchors into our dynamic especially for the children. One of those anchors is to have a great go-to song to carry us through the year. For those days when life doesn’t make sense: when our children have to cope with twists without mum and dad because Savannah is in hospital, when we have to say no to a necessity that is unaffordable, when we can’t understand Savannah, when people are mean, when we feel exhausted and sleep doesn’t fix it, when we need to escape from reality…we simply turn up the volume of our favourite song.

This year, how could our theme song be anything other than “This is me” from the soundtrack of the Greatest Showman. Wherever you are right now, turn the volume up and play this song.

[youtube https://www.youtube.com/watch?v=CjxugyZCfuw?rel=0&w=560&h=315]

Be you.

YOU are meant to be!

My Story February 5, 2018

The Safe House

‘‘Twas the night before school began and all was solemn and all was sad”.

Well that’s how it felt in my house. Talisa and Eli were feeling nervous as they prepared for grade ten and grade five respectively. Eli, a little more so because he was also beginning his school year in a new school.

My Story January 24, 2018

I Know Different by Tricia Proefrock

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.

My Story January 13, 2018

The Past And The Present Met

It is already two weeks into the New Year and this is my first blog post for 2018. My hope for you is that wherever you are in life today, that this is the year you will know resounding Joy and have boundless Courage.

I learnt alot about that in 2017. I realised that I found my Courage a long time ago but it has taken all of my adult life to find Joy. This holiday season has truly been Joyful which is an amazing description for me to give. Usually I dread holiday season.

As a family with an adult daughter with complex special needs; relaxation and socialising has always been labour intensive which in my opinion, defeated the purpose and left me feeling confused and cross every, single holiday.

Yup, I understood the holiday blues very well.

This holiday season I enjoyed a pleasant, beautiful start to the year on a beach in a quiet seaside town with my husband and children as well as with our extended family. My daughter Savannah still has the same struggles and some additional struggles but what she doesn’t have anymore is a mother who feels overwhelmed and frustrated with life.

I’ve written in a previous blog about how long I battled suicidal thoughts. Even long after I stopped feeling that death was an option, I still felt a deep sadness: a melancholy in my soul, a wish to slip quietly into darkness. 2017 was the year that I understood that darkness and it’s hold over me.

It was the year that I accepted that no one can save me from the sadness but myself. 2017 was the year I became my own hero. I was marked by the frailty of life and touched by the gift of each new day as our family faced a new set off challenges with Savannah.

To that end, my husband surprised us by booking this holiday so that we could make memories with our children and still keep Savannah as comfortable as she needed to be.

Ironically, I was holidaying just a stone’s throw from the home that our matric class of 1995 stayed in for our Matric farewell tour. Being there; seeing the familiar train track we walked along twenty three years ago and the sandy road that leads to the Children’s Home were we stayed brought back memories. The past and the present met each other.

Before that tour I remember how us girls worried if we would be able to fit everything that we would need: like a hairdryer and clothing for every season and occasion! We worried about where we would sleep and if we had to share the bathrooms with each other. Oh horror of horrors for teen girls. It seemed so important back then.

I vaguely remember an evening with a beach bonfire, the dinner hall which I think had pink and peach chintz curtains, an illegal alcohol related gathering and walking along the train track to the mini shopping centre during the day.

I remember how often on that tour and for the rest of the year I felt that I didn’t belong amongst those amazing people. I had nothing to offer this group of confident and friendly fellow students. I deeply admired the few I had formed close relationships with; and wished I could be more to them.

I admired the sets of friends as much as I admired the individuals who made up the sets. But when you see yourself as worthless, you can’t comprehend that you have value.

Throughout the two years that I was at the school I was battling a deep depression. I felt like an empty shell. I felt old and sad. Yet to everyone around me, I was the dependable, responsible, happy girl.

My first suicide attempt was in the November of 1995; the night before my final Afrikaans matric exam. I was found in time to be taken to a hospital; my stomach was pumped and drained and I was made to write the exam. I was dazed and tired but write it I did.

My attempt to end my life was glossed over by my family and I was left feeling guilty for putting them through that. By the next August I had become a mother and a wife, and the sadness intensified with the shame and pressure from my social circle.

Two years later I was a single parent to a child with a disability, a divorcee and working to make ends meet for my daughter and myself. I only faced each day because I was responsible for my daughter. Nothing else. I felt trapped in this world.

This week I heard of the death of a well respected professional in the disability community, and the Facebook announcement of her death had this quote “People do not die from suicide, they die from sadness.” So true.

I remember friends who have left this world by their own hands and how often I have waltzed with suicide and I angrily question that in a time when we know more than we have ever known about emotional well being, mental health and psychology and the importance of support structures…why, oh why do we not see the sadness? What are we missing that it is still so difficult for people to find help and understanding?

It seems that all that’s happening is that we are becoming a generation with intellectual prowess but devoid of genuine sensitivity and care towards each other.

It’s not enough that the British Royal Family have stepped out and spoken about mental health and their own struggles; it’s on us in our homes, in our social circles, in our offices, in our religious organisations who need to open our minds and hearts. We must find our Courage to speak so that no one in our social circles feels so alone that suicide seems to be a reasonable answer.

We must find our Courage to speak about suicide. We must learn to be honest about our own struggles. We should be living consciously that we are part of each other. People are always more important than things. Always.

As I gazed out at the dazzling aqua blue sea and listened to the pounding of the waves on the shore, I was reminded of the pounding of my own heart. I am still here. I learned to live past the sadness and I ended my waltz with Death.

If you feel that life is not worth living, please afford yourself the respect of speaking to someone who understands. You are not alone in this and help is available to you.

Please Stay.

Contact the South Africa Suicide Crisis Line

For a suicidal Emergency contact us on 0800 567 567

24hr Helpline 0800 12 13 14

http://www.sadag.org/index.php?option=com_content&view=article&id=11&Itemid=114

https://www.facebook.com/pages/The-South-African-Depression-and-Anxiety-Group/335962293097734?ref=bookmarks

https://twitter.com/TheSADAG

My Story December 12, 2017

Peace be upon you

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.

My Story November 13, 2017

When Love Is Not Enough

Desirae and Savannah I have been struggling to write. A recent awareness day event about Cerebral Palsy touched a chord within me and messed with my heart. I was a guest speaker at the event which focused on inspiring younger families with children with cerebral palsy about what possibilities life held for them and that the diagnosis was not the end.

I listened to the stories of hope and sacrifice and achievement. I understood what it was to be the mother who spoke about these things. But that day I felt desolate and even defeated. I felt that we did not belong to a day about hope and inspiration. What inspiration could we offer? We had hoped. We had sacrificed. And our daughter had known what it felt like to defy the odds. But now? Now our truth was that we are also the family of a child who is regressing.

Our daughter is no longer on an upward trajectory. While Savannah is not diagnosed as having a terminal condition, the words “thriving, will develop, recovery, achieve, learn” and such; are not part of the vocabulary used by her doctors to describe her future. We are not the story younger families want to hear. We are the parents whose love is not enough.

It is not enough to keep her on the upward curve. It is not enough to keep her as healthy as she needs to be. It is not enough to stop the ache in our own bodies each time we lift her. It is not enough to keep myself calm when her obsessions make me feel like I am losing my mind. It is not enough to stop her physical pain. Our love is not enough to save her from her suffering.

When Savannah was younger, we felt isolated from our family and friends because they could not understand what we were grappling with in coming to terms with having a child with a disability. But we had solace in the community of other families like us. Now though, we feel the pity and the awkwardness from other parents because we are a treacherous reminder of the other possibility for people like Savannah. The possibility that some children grow up into adults who are going nowhere slowly.

And no one wants to know that this possibility exists. Other families who are parents of adult children with similar challenges know the unpleasant feeling too well too: When we are sought for our wisdom but held at a distance for our truth. We are great inspiration as long as the story is about how our children are thriving. While caring for an adult child with complex needs can be inspirational, no parent wants to pay a price like this for the title of being inspirational.

Last night after Michael’s shift with Savannah, I went to lie with her from about three in the morning. As I felt her trembling body and listened to her ask for what felt like the millionth time “Mum, God heal me? I be better?”, I realised how lonely we are. Lonely yet again. There are books, websites, talks, seminars, support groups, something where mothers of children with different needs can find a sense of belonging.

Where do you go when you are grieving the living? Who can relate to being able to answer the question “Why?” when their autistic adult child can’t make sense of her physically disabled body, that is in regression. How many mothers have looked into soft brown eyes and answered “I don’t know”? How do you say that sometimes I don’t want to do the thing that makes her happy because I just can’t face doing the same thing again? Who has the capacity not to judge you when you want to say “I just can’t do this again today”?

Am I angry? Am I sad? Am I frustrated? Am I tired? Yes, I am all of these in different proportions at different times. Do I think life is unfair? Yes, I do. It can be unbelievably hard to face each day not knowing what Savannah will be going through while we still have to be part of “life as usual” in other aspects.

What then do I believe about God and the purpose of life?
I believe this: Mary birthed a Son. He came, under what must have been terribly awkward circumstances for her. Both Joseph and Mary loved Him for the time that was given to them. When the worst time of that child’s life unfolded; Mary had the strength of all the world put together when she stood at the foot of that cross and watched Him suffer and then die. God did not spare even her, the mother of Jesus; from the truth of life. It hurts to love.

I can’t say I have the same strength as Mary did, but I can say this:
You don’t stop being a parent when it hurts. You can lose the whole world for the sake of your children but you never lose your children for the sake of the world. My heart will break again and again. Michael and I know both joy and sorrow. We already have the ability to weep with one child and then to laugh hysterically a moment later with another. We will talk late into the night about how amazing all our children are; how we are sad for some things and how our “hard” is so unrelatable to most of our friends except for a few parents.

Our love is not enough to give us the outcome that we believe Savannah deserves and that we as parents will find easier to cope with. Instead we continue to dig deep and continue to find ways to make life wonderful and spectacular. When you have lived with grief for a long time, you realise a few truths about life:

• To know grief is to have the choice to choose joy.
• To acknowledge that you cannot do anymore, doesn’t mean you have given up. It means that you simply cannot do anymore.
• To be able to live in the moment is usually learnt through great heartache.
• Worry is a captor who was given the keys to the prison by the captive.
• Children don’t need superhuman parents who can fix everything and make it all better. They also need parents who have the strength to hold them when it can’t be fixed and when it won’t get better.
• The best people are those who don’t need you to fall apart to know that they are there for you.
• It is a conscious effort to make sure that you can remain soft when most of what you understand about life can make you hard or indifferent.
• From the moment we are born, we are all dying. When that makes sense to your soul, you will appreciate the magic of each morning.
As sad and morbid as that may sound; really..it is the beginning of living beyond grief.

My Story

In my previous post I shared that our family sets goals at the beginning of every year.

This year, how could our theme song be anything other than “This is me” from the soundtrack of the Greatest Showman. Wherever you are right now, turn the volume up and play this song.

Be you.

YOU are meant to be!

I KNOW DIFFERENT by Tricia Proefrock

I KNOW DIFFERENT
by Tricia Proefrock