i am rhonel

With my head in my hands, tears flowing freely, I’ve reached the point of complete exhaustion. This year has taken its toll, with Juneldè losing weight, becoming more spastic, not sleeping, moaning, crying, upset on a daily basis. I want to run away; flee from this helpless feeling. My hands are tied and I don’t know how to help her anymore. Everywhere I turn is a rock and a hard place with my child the victim. My hope lies shriveled up in the debris of her suffering. My faith is silenced amidst the weakness of my motherly love. I am failing her, and I just don’t have the strength to fight this fight.

Two weeks ago I have cried this out in desperation for answers I didn’t even know the questions to anymore. And now I can humbly, thankfully reflect on the quick turnaround that God has provided in spite of my dusty fallable humanness.

He sends the right people at the right time…He provides us with resources abound and in the bigger picture I now stand in awe of His perfect timing.

Only through Him is it possible for change to be so intensely visible. For time to become irrelevant in the context of His healing.

Head lifted high, with tears of gratitude flowing freely I stand humbled and thankful. Juneldè’s dad asks her during computer communication time if she knows how much he loves her, and with accurate speed comes the quick reply YES.

And in turn I quietly wonder if I would ever truly know just how much He loves me?

The artist echoes the melody of my heart, her words a reflection of my inner most suffering. Because for how long would I be able to hold on to this hope, for how long must I see my own flesh and blood, my daughter, my first born face challenges far beyond her years. With every spasm of a new seizure contorting her fragile body, her breathing labored, her lips tinted blue I helplessly wait for it to stop. I wait for an answer to my prayers; for the proof that my faith is real, for a sign, a miracle….something…everything to be revealed so I can make sense of a senseless reality.

I am challenged by my own view of life and its meaning. Because how dare I judge a life as lesser because the outcomes of walking; talking; success and contribution is absent. What is the meaning then of life? Is it to produce, to do, to achieve, to succeed and to conquer. What lies beneath it all, under the layers of complexity of our daily busyness?

Why do I assess her inability to DO as a disability to BE? Because in her silence lies a wisdom that many an elder would envy to possess. She is loved beyond what she can give purely for who she is. Her essence, her unique irreplaceable true self.

What would it take for me to be able to truly accept …miracle or not?

In vulnerability I see my own miscalculation. My need for outputs, outcomes, cause and effect that drives my faith and determines my hope. And as I listen to the soulful melody of Alisa Turner my heart and soul echoes: At the end of the day I’ll stand right here and say…I know that You love me. Miracle or not.

Thirteen years ago I gave my hand in marriage to a wonderful man, now my husband. We were young, but more than that our life experiences were sheltered and innocent. We were starry eyed and in love. And it was easy to be as we had good jobs, little financial strain, time for ourselves and our relationship. We certainly didn’t know about the trials that lay just around the corner of our future. We haven’t tasted loss, grief, emotional turmoil and spiritual stuntedness. Life was easy and marriage our happily ever after.

However when we promised to be faithful in the good times and the bad that promise was put to the test in a big way.  I still remember many snippets of conversations we had and one stands out. We were sitting infront of the hospital where Juneldè was fighting for her life in ICU. Blue teary eyes met brown pools of wisdom and we decided to put our marriage first. It felt counterintuitive, overindulgent and plain reckless. But we decided that we will employ our resources in order to still find the time to have date nights.  We felt strongly to ignore any ignorant judgements when we go to a dinner or coffee shop to spend time together. In truth it was far from the butterflies in the stomach, dressing up in your finest, flirting kind of dates I remembered from before. It was more of the tissues in hand, mascara smeared, blotchy nose kind of conversations. But what it did for us is remind us that we are a unit that need to stand together, side by side, guarding against blaming and projection onto the other. We wanted instead to be kind and loving, forgiving and open in our relationship – not just for ourselves but ultimately for our daughter as well.

I will not pretend to have the perfect marriage, far from it! But together with my steadfast husband I have learned that any marriage needs focus, attention and nurture to flourish. I have heard of a wise man being asked what the secret was for staying married for a long time and he answered solemnly: “Don’t get divorced”.

So after that belly laugh I humbly propose the following daily seeds to sow into your relationship:

Mercy – Be merciful towards each other.  Steer clear from judgement and focusing on the negatives. Instead love each others humanity of flaws as much as the strengths.

Acceptance – accept each other unconditionally.  Love your partner for all their intricacies, flaws, the good and the quirks that make up all that is uniquely them.

Reliability – always be reliable in your promises, your commitments, and your psychological contract towards each other.

Respect – regardless of the humanly flaws always remain respectful towards each other.

Intimacy – Remember to hold hands, to cuddle, to kiss, to giggle, to touch, to hug even in the darkest storms these gestures remind us that we are in it together.

Admiration – you deserve your partners admiration for the part each of you uniquely plays, with dedication, in making your life work.

Grace – Pray that His grace will always overflow into your relationship. With Him as a core part of you a foundation of unmoveable strength underpins your marriage.

Encouragement – Be each other’s cheer leader, dream together, build those sandcastles without reserve and believe unconditionally in the brightness of your future together.

I hope this post reminds you to hold a little tighter when you feel like letting go, to put back the rose colored glasses and exchange some of the seriousness with long lost feelings of flirting and being in love. Mostly enjoy your partner and the sacred space of your marriage that belongs exclusively to you two alone.

With nervous excitement  I start my journey towards Tucson Spur in Elarduspark. My thoughts race around while stuck in traffic. Nagging ones that I try to dismiss keep on resurfacing. What if there is no one in attendance? What if we are judged for what happened to Juneldè? What if we are critisised for needing financial support?

As I reach the front door already I see familiar faces and I feel a sudden rush of relief. I draw out Juneldè’s poster and my heart skips a beat looking at her younger smiling face. So much loss confronts me in a moment. But as I look up to the busy restaurant immense gratitude replaces the sadness. I walk along the tables and continue to greet smiling familiar faces enjoying a Spur meal with their friends and family. So many open hearts and hands enveloping us in understanding.

Juneldè is in high demand, everyone wants to meet her, chat to her and share in her energy of strength. I am so proud! She is a warrior in every sense and I am thankful for being her mom.

Pink donation boxes circle the restaurant and in amazement I see reaching hands filling them up. No questions asked!

Close to us sits a couple with their beautiful daughter. They want to know more about Juneldè’s story as they are not part of the supporters group (yet). They pledge a contribution and with a cellphone notification we are blown away by the reflection of their altruistic giving. I rarely see my strong husband cry but in an act of solidarity two fathers, mere strangers minutes before, quickly dry off wet eyes.

Overwhelmed with gratitude we end of the night. Juneldè is exhausted but remarkably content. Usually busy restaurants would be unbearable for her but this night she bathed in the attention of knowing true acceptance exists in the hearts of her community.

As a family we would like to thank Zelda and her team from Tucson Spur for their support in making this fundraiser happen. Thank you is such a small token trying to convey the immensity of our true gratefulness. But please receive our heartfelt thanks!

To everyone whom attended the evening and opened their hearts and hands to us – Thank You!

To our Collage church family – you are all our greatest supporters in prayer, comfort and continuous support. Thanks dr. Ernrich Basson for your leadership and friendship.

And to Welda Venter for the idea, initiative and making all the arrangements for a successful fundraiser – Thank You!

There is no escaping pain, it comes to us all in various shapes and forms.

This past week while attending a funeral I notice all the people I have known for the past almost 20 years. When we met I was a teenager, I didn’t know then that they will become family. We have since attended each others weddings, baby showers and shared many birthday celebrations together. But now I see the pain of death reflected in their eyes but also the hope of Life in their tears. We have lost a family member, a warrior in his own right. As the men in the family fill the grave it is surely the most striking act of shared pain, love and healing…The flowers are placed on the heap of earth and I see acceptance in the faces of the mourners. They are bravely facing their pain whilst turning away from suffering.

I am reminded of Victor Frankl and his book; Man’s search for meaning. In the book Victor shares in horific detail his experiences of loss during the holocaust. He however concludes that between stimulus and response, there is space. In that space exists our power to choose our response, and in our response lies our growth and freedom.

Is it true then that pain is inevitable but suffering is optional? What if we experience illness, sickness, death, grief, financial ruin, loss? I remember so many times I have literally folded into myself, a fetal position of protection trying to deflect the intensity of the pain.

It is an overwhelming spiritual, emotional and physical hurt – encompassing all your being. But somewhere after that we have to choose – continue to carry this pain into a never ending suffering or allow the breaking of your shell to find deeper understanding.

In times of intense pain, may you find the space to allow joy. May you know that it is okay to smile whilst crying. To laugh whilst mourning. To love during grief and to hope during loss…To have peace where there is no understanding and to understand without the luxury of any answers.

Like a heavy weight on my heart, lead in my soul and fog in my mind lay the subject of unforgiveness…I didn’t realise my subconscious drive to hold myself captive by this burden of punishment. Yet, there it was…Because how dare I? How dare I forgive myself for that day? How dare I choose to let go of the heaviest cloak of responsibility whilst she is suffering the consequences everyday?

And when confronted with the truth – I felt responsible to suffer alongside her, I cried out: “How dare I let go of the guilt? It’s the least I can do for my utter failure as a mother”.

I was shocked by my own words. However I knew they were my truth, robbing me and my family from a life lived fully. I had to face the dark corners of my mind, the closed doors of my heart and face my inability to choose freedom.

And layered behind this was the subject of Fear. Because what if forgiving myself is equal to letting my daughter down? What if living my life means I won’t continue to sacrifice everything for her? And what if following my purpose and gifts steals too much time away from her needs?

I was advised to stop running away from my fears and inability to forgive. I needed to metaphorically turn around, face them and invite them for a sit down chat and casual cup of coffee.

After years of hiding from my Fear and Unforgiveness this was very difficult. It was a process that broke down all the walls of my carefully maintained emotions. I cried the ugly cry…Many times.  And eventually I was able to say: “Rhonel, I forgive you. It was an accident. A terrible accident. You are not to blame. You are only human.”

Maybe you’re also running away from yourself. Maybe you are also afraid of letting go of the hurt, of shining a light upon the darkest corners of your heart. But trust me; it is weighing you down and robbing you silently everyday from living fully. Like an invisible rubberband it pulls you back to the past…

After facing my fears and forgiving myself I found freedom. Freedom to look ahead to a future worth living for. And the surprising thing is that I am actually now more connected to Juneldè without the burden of guilt poisoning our relationship…It was an incredibly difficult process – but so worth it!

Serenity: The state of being calm, peaceful and untroubled…

It’s been a while since I felt serenity…I crave it but it seems constantly out of reach. I am at war with life; wearing my armour ready for every and any obstacle coming my way.

This past couple of months have been challenging; surgery and recovery for myself; a hospital stay with pneumonia for Juneldè; emotional hurdles; spiritual deficiency; a toddler who craves my company a few times every night😋; running and racing on a daily hamster wheel…

I am sure you can relate. Your reality might look different; your specific challenges unknown to me but very real to you. Truly – when last did you feel serenity?

In a cool mountain forest at the Graskop Gorge – after a 51m drop against the cliff side (in a glass walled lift at least) I found serenity – or rather a new perspective on it. With every step I took along the forest trails – along elevated walkways, suspension bridges and tranquil streams – I managed to breathe deeper, and every breath became a life force of peace, insight and surrender. Interactive exhibits with wisdom and tidbits of knowledge lead the way towards the 70m plummeting waterfall of the Panorama Gorge.  In awe at this breathtaking phenomena I realised- this is what I want to be for my family. Instead of focusing on my own troubles I want to be a place of serenity for them. I want to be their enchanting forest of peace, protection from a tough world, a place where they can breathe a little deeper, think a little clearer and feel safe.

As I traveled upwards in the lift back towards reality my heart wrote its own serenity prayer:

God grant me the serenity to get out of my head and into my family’s life.

God grant me the serenity to convey peace, love, enchantment and awe with every motherly touch.

God grant me serenity with every spoken word and unfiltered thought as wife, companion and champion of my husband.

God grant me the serenity to become my family’s indigenous forest of wisdom; knowledge and insight.

God grant me the serenity to surrender, hope, love and believe…

To you I pray

Amen

This slideshow requires JavaScript.

March is Brain Injury Awareness month, and I thought it appropriate to share a little bit about our day to day realities. In a big sense I realised that most of these have become so entrenched in our lives and our normal, that I had to dig deep to find the things that are different. For that adaptability I am thankful!

Let’s start in Juneldè’s room- I have tried my best to make it as age appropriate as possible but it doesn’t reflect another 8 year old’s room. Firstly, she has an electrical home care bed with a special mattress to sleep on. Juneldè needs to be positioned carefully due to her quardriplegia but also due to the reflux and heartburn that is part of her everyday. For that reason the bed is an absolute necessity and we are glad to have it. In her room she has another bed and in her closet space for someone else’s clothes and belongings. This is for our full time nurses. I know how privileged we are to have them in our lives but at the same time they are absolutely necessary and indespensible in our quest towards quality of life. It is challenging to always have an outsider in your house, a co-parent in many ways. This is a day to day adjustment.  In Juneldè’s room there are various medical equipment such as medical gloves, monitors, thermometer, syringes and medication, feeding tubes and suction tubes.

Juneldè suffers from Lennox Gestaut Syndrome due to the brain injury. This is a rare form of epilepsy that shows up in al kinds of fits daily. From Petit Mal to Grand Mal, from non-threatening to medical emergency. We never know when a convulsion will present itself and are always on alert to assist and react. Therefore Juneldè can never be left alone during the day or night. Not safely on her bed in her room, without someone else there or listening for her, not alone in the TV room on her chair whilst I am in the kitchen. Not alone ever. When she gets a seizure her body pulls tight with her limbs pushed out, her face contorts and all the air is pushed out forcefully from her lungs, then she stops breathing and her eyes roll back into her head. Because of the strength of the spasm the food from her tummy pushes up and a lot of times she starts vomiting. This process is stressful because whilst you are assisting her you have to time the length of the convulsion to determine its severity and if the ER is needed. The monitor is placed on her finger to measure Oxygen levels and heart rate – also a clear indication of the seizure severity and the action required. This type of seizure happens about once to twice a day on a good day. If Juneldè gets sick or runs a fever this number goes up and becomes life threatening.

We therefore keep a log book of Juneldè’s seizures and body temperature as it shows us patterns that helps us to intervene early. Her temperature is taken every hour along with other vitals. We also follow a strict routine and I have to make sure that Juneldè’s medicine and supplements are available at all times. She also eats special foods that need to be meticulously sourced, prepared and stored.

Moving on to the bathroom we have a bath chair that lifts Juneldè in and out of the bath. This device allows us to safely put her in the bath and allow her time to soak in soothing water that she absolutely loves.

Furthermore Juneldè has a Therapy room where she receives daily therapy as well as physiotherapy twice a week. We have all the equipment needed for lung physio and when the need arise she receives that from the physio as well. We also have a big Spa bath that we use as often as possible for water therapy as it helps tremendously in relaxing and stretching Juneldè’s body.

Juneldè wears cloth nappies that need to be washed by hand every day. I am so used to a washing line full of white nappies and nappy bins in her room and bathroom, that I don’t stop and recognize that this sadly is for my 8 year old. In truth it also became part of the new normal.

Eventhough we absolutely love Juneldè without any conditions and we are thankful to have her in our lives, there is a lot of daily planning and stress that goes along with her care. I assume this is true for all families who has a Brain Injured member. The aim of this post is to raise awareness, to allow a small insight into the never ending stress, demands and challenges that is part of brain injury.

If you see a family with a Special needs member I ask you to look upon them with admiration, not pity. They are superheroes conquering visible and invisible villains every hour of every day. Don’t ask about the condition of their family member, or even be so blunt as to ask: “What is wrong with her?”  Rather say, to the person, “Hi, my name is (introduce yourself), what’s your name?”. If the individual cannot speak the family will surely answer for them. But I assure you that it is precious to all, and especially the hero in the wheelchair, to be recognized. Furthermore, if it is a child, ask: “How old is she?” “What are her interests and things she loves to do?”

If your own children ask you (quite loudly as they do), “Look at that girl mommy” or “What is wrong with that girl?” don’t reprimand them and say: “Look away” or “Don’t stare”. If you are awkward in that moment they will learn to be embarrassed by disability as well. Rather tell them: “It seems like she is in a wheelchair because she cannot walk, let’s go and introduce ourselves”.

But on the same topic, don’t be the person invading that family’s and the person in the wheelchair’s personal space. They might just want to blend into the crowd. If you intuited that that is the case, smile (without pity), greet them in passing and move on.

The biggest thing about our lives is the constant stress, being on duty and on guard day and night, the inability to fully relax and the vulnerability of losing this precious person we love so much.

I hope this post raises a little awareness, respect and help, be it financial (because that is a big struggle in itself) or in prayer and kindness, for the brain injured and their families making the best of this incredibly difficult journey they are on…

There once were acorns on an oak tree going about their acorny lives. Everyday they would do what acorns do – rushing towards the inevitable end when they would fall of the oak tree. One day a wise acorn shocked all the acorns by saying: “You are not this, you are that”…Pointing towards the majestic oak tree. The acorns couldn’t fathom how this is possible and curiously enquired: “But how?”. The wise acorn responded; “You have to be willing to go into the ground, be buried, break open your hard shell and become that which you were meant to be”.

I still remember how it feels there in the ground. It is dark, isolated and incredibly painful. It is vulnerability in action and loneliness manifested.  This process of becoming that which we were meant to be is a never ending cycle. It is the falling of the acorn, the going into the ground and being planted, the isolation and breaking open of our shells, then growing into an oak tree and again acorns being planted that allows us to live purposefully.

It is incredibly uncomfortable, this continuous transformation happening. Today I simply want to encourage you that when it is darkest and you feel like you have been buried, consider instead that you have actually been planted. And seek every opportunity to grow!

Breathe in, breathe out. Enjoy the little things in life. One day you’ll realise they were the big things…

I am shopping in Dischem, with my list in hand and toddler in trolly. I am on a mission to get this done. Prescription medicine – check. Probiflora – check. Syringes and surgical gloves- check. Body lotion…

In isle 8 I stop infront of the body lotions and check the prices. I am allready in quite a mood, everything is so expensive! And every month I go to Dischem for Juneldè’s monthly list of needs and must haves I am feeling a little sorry for ourselves. In an effort to keep her healthy and assure quality of life there is so much out of pocket supplements, herbal medication and tools needed!

I reprimand my son, sit still! I walk briskly and am irritated with all the other shoppers not understanding my mission, my mood, my urgency.

But in isle 8 a bottle of body lotion reminds me to breathe in and out. It reminds me to stop doing and start being. It reminds me of the privilege to still be shopping for my daughter. It reminds me of the privilege to look into the innocent chocolate brown eyes of my beautiful son.   It reminds me that I am essentially a human being and not a human doing…

I open the cream, squirt a dollop onto my hand. I smell the wonder of orchids and vanilla…

Breathe in, breathe out…Savour every moment. Get out of your head and into your life.