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Today is Good Friday in South Africa. We have always loved celebrating this day.  Amidst singing songs of worship all day (we love music), we have celebrated this day with a special meal of a roast leg of lamb for lunch and all the trimmings.

Actually, since Savannah was seven years old I taught her to participate in preparing the lamb. There were so many reasons why this was an impossible feat for her. She had physical and sensory challenges. She had some language processing difficulties and her ability to concentrate was almost non-existent.

However, we found clever ways to help her to engage in this special family time. As a young mother I hoped that when my children became adults and when we would be enjoying family celebrations with their respective families; that Savannah would participate in the celebrations by preparing a meal. I wanted her to feel how important her contribution to the family was.

It was humble beginnings of simply teaching her to pour the marinade over the leg of lamb to about ten years later when she was able to plan the entire meal. She would mix the marinade, prepare the leg of lamb and with some assistance from myself or my mum; she even served the meal. Savannah loved planning this meal. She felt so proud that she could serve her family and that we appreciated her efforts so much.

Being raised as an Indian woman, my family placed a high value on our ability as women to prepare meals. It is important to be the “hostess with the most-ess”. Literally. We value celebrations marked by the beautiful presentation of large meals. So, while I don’t live my life based on my culture; I did feel a sense of pride that my physically disabled daughter who is also autistic could prepare a special dish for a special family celebration.

This year though Savannah has not been bothered with planning the meal. She has not been interested in doing much. She is going through a difficult time for many reasons. It is not my place to share the details of that publicly.

What I can share is that as I watch her grapple with her reality, it is easy for me to feel angry and sad. We worked hard as a family to give Savannah a hopeful, bright future. We wanted her to always feel happy and joyful. We wanted her to know that she is big part of the world and that she has a reason to wake up everyday and live her best life.

As I ponder the complex threads of my emotions, I realise I am not sad or angry. I awakened to the understanding that the human experience isn’t about success and failures. It is a rather magnificent testimony of being a witness to each other’s lives. And when that “other” is your own child, then it is only you who can be brave enough and strong enough to witness everything that our children must endure.

I reminisce today of all the Easters before when Savannah’s excitement filled the household as she prepared the Good Friday Leg of Lamb lunch; and I am thankful.

I am thankful for the many Easter celebrations that was everything I wanted it to be. I am reminded of how strong we all are and how much we have lived through. I am grateful that Savannah too knows her own strength and power.  I am hopeful that she will find her way again because of that. I am humbled as I surrender to the understanding that life is full of surprises. Some good and some bad. My courage is renewed as I remember the grace that has been given to us which has brought us this far.

Today as we celebrate Good Friday, my hope is in the story of the crucifixion of Christ. It was not an end, but a beginning of a new life. It is my thread of hope that one day Savannah will know what it feels like to be Peaceful and Joyful without needing to prove anything to anyone. She will never have to suffer the weight of living in a world that sets itself against her.  And I will never have to feel helpless and frustrated at my own limitations as a parent.

That is the why in spite of everything, I am celebrating the gift that Good Friday gives to me. Faith, Hope and Love.

 

 

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.

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

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