i am rhonel

This blog shares my sacred journey through tragedy.  I was called for audacious hope whilst grieving a living loss.  And I had to choose – will I be better or bitter? 

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

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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!

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3CFBF527-E4D6-4534-9C3D-2454386C72DCBreathe 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.

Last year November we received the best news from Juneldè’s neurologist. Her EEG was looking so much better that her current anti-epileptic drugs (AED’s) were too strong and thus not therapeutic anymore. That being said we needed to work out a plan to start a tapered weaning process with her Benzodiazapam (Ativan). Together we decided to start in January 2018. Anyone who have ever tried to wean a high dosage of a Benzo (as is Juneldè’s) would know the intense symptoms of withdrawal.

In January we started lowering the first dosage and four days later were seeing acute withdrawal from Juneldè. She began screaming constantly, sweating profusely, vomiting, spasming, not sleeping and in a state of complete angst and confusion.  For six days we suffered along with her (although she definitely suffered the most) and on the fifth day she experienced a grand mal seizure. That was beyond scary and in fear I contacted the neurologist.  His advice: “Stay strong, push through, don’t go back”…

On day seven she calmed down, finally eating and sleeping again.  From there we saw more awareness and expression from her. This was such a welcome result after a scary, confusing, painful time.

Last week the time came for us to yet again lower a dosage. I was apprehensive, finding reasons to postpone the process.

Then a friend introduced me to Robin Sharma’s Podcasts. And I was blessed with his advice on confusion.

He spoke about how society dictates pain and suffering as something that is wrong, something we need to escape and flee from.

However, he proposed that pain is a doorway into true power , suffering is a tool to strength.  Pain is the breaking of the shell that encloses our understanding (As in The prophet by Kahlil Gibran).

I was thinking about Juneldè’s withdrawals and asked myself then what can possibly be the value of these confusing times? I realized that clarity comes from confusion. A period of breakdown always precedes a period of breakthrough.

In a moment of  insight I decided to hack into the societal mindset that pain and suffering is something we need to run away from. Instead these things might be growth unfolding.

Bravely we dropped another dosage of Ativan, and together with Juneldè we followed great advice. “Stay strong, push through, don’t go back”…

 

 

 

 

 

I didn’t want to write this piece. I don’t want to make anyone feel guilty about their lives and kids and let’s call it by its name – normalcy. But when chatting to a friend I knew it needed to be said.

I shared with her that the first day of school every new year is tough on me. Logging into social media is as traumatic as being a witness to a terrible car accident. You cannot seem to look away. You cringe on the inside, you struggle to breathe, it seems to happen in slow motion but you cannot make it stop. Yet you keep looking on…All the smiling faces, new stationary, bags and school uniforms. And then a week or so later the athletics. Vibrant, mobile kids running their hearts out.

And then I feel like such a fraud, I am not someone you should be inspired by. There  is envy and jealousy in my heart. A deep yearning and grieving loss. I wish I can send my child to school. I wish I could have been shedding a tear at her independence to be in grade 3 allready. And then feeling a great relief at finally being able to get into the school routine after a too long holiday.

Yet that is not my reality. That is not true for us. Instead I had to see my child struggling through a drug wean. We have to lower her Ativan dosage this year in a tapered approach. And I have to hold my screaming, vomiting, spasming, sweating child that is going through acute withdrawals.

Expectation, envious observation, comparison…These are the root of discontent and unhappiness. Not expecting your reality to look like someone elses, observing your life for what it is and not what you wish it should have been. And never ever comparing yourself to the small glimpses you see of others’ lives;  this outlines the necessary steps towards contentment.

In a sense the first day of shool taught me a valuable lesson, and it set out my curriculum and homework towards self development this year.  Stop comparing and stop envying – as easy as that.

Today, exactly 5 Years ago our lives changed completely and utterly. Drawing a definitive line between our before and after…Since that day we have slowly learned to walk in darkness. At first the darkness was overwhelming and the need to escape even more so. Most of my days were spent in a desperate push back to when I last saw the light. When last I was able to breathe…The darkness enveloping my thoughts.

During that time I was constantly screaming in the darkness. Crying in the darkness. Chaotically loosing my way…

5 Years later the darkness moved first from dusk and then to dawn. And now I am able to see the Light. Not because the darkness disappeared but because I learned to quietly sit in the darkness. To breathe in the blackness of it. And to walk only when able to focus on the Light.

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She is turning 8 years old on Thursday. And I am looking for a gift. I wish she could tell me what she wants, what her interests are, what she dreams about. The reality is that Juneldè is freed from this materialistic life of wants. She lives a life far above anything money can buy.  And yet I continue to aimlessly browse through catalogues; searching, searching, searching…Because Christmas is also coming up and I want to give her the perfect gift!

And in a moment of epiphany I am reminded of the recent Christmas production I was a part of, and the words I repeatedly shared with the congregation.

Christmas is the perfect season to embrace your imperfect life!

I remember all her birthdays and our Christmases since January 2013, the first year accompanied by immense sadness and an overwhelming urge to hide away. The bright lights, Christmas trees, jingle bells and laughter an almost mockery to my grieving heart. And every year since our Decembers seem to emphasise our brokenness and the strict contrast between our before and after.

I don’t know what 2017 held for you. Maybe you too want to push a fast forward button towards the new year. Or maybe you want to ignore all imperfections and act out a picture perfect season.

The reality is that our strive towards perfection is a lie, and imperfection the truth.  Perfection is an unobtainable dream…

Christmas is however the perfect season to embrace your imperfect life!

This year I want to focus on my imperfect, perfect for me, family. I have bought small gifts, that will be exchanged with big love, acceptance and joy. I am looking forward to celebrating Juneldè’s birthday, not sad about what could or should have been, but content with what is…I plan to allow God’s perfect peace to carry me in an imperfect world.

Christmas is the perfect season to embrace your imperfect life!

 

What if?   For a long time I lived by these words.  What if the accident never happened?  And then the follow up line:  “She should have started grade 1 this year”  or “She should have been walking, talking, eating, seeing, smiling, laughing”…  So many should have been’s and could have been’s stealing my joy from me.

And then inevitably these thoughts took me to a place of immense loss and sadness.  I felt robbed, my dreams invaded.  Bitterness like lead in my soul.

One day my best friend introduced me to a song by Laura Story, challenging my thoughts and stubborn self-pity.  It is a song called Blessings.

It starts with the question:  What if?  And immediately I was captured.  Here is someone who understands!  But then she continues:  “‘Cause what if your blessings come through raindrops?  What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?”

I slowly started to accept the truth in these What if’s. Gaining wisdom from the deep understanding that what is, is what should be.  And only what we have, is real. Everyday is perfect in its imperfection.  Everyday is rich in its lessons, and joyful in its gifts.

What if your life is exactly as it should be?

 

 

 

 

 

 

I always wanted to be a “please, God” family. You know, those people you look at and silently pray, “please, God make me as happy/ beautiful/ content/ privileged as them. The Pinterest’ and Stock images’ family, almost blinding you with their good fortune. I assumed that that will loudly proclaim God’s care and provision. The perfect family, with their happy smiles and rich travel experiences.

And then one day, within two minutes, we morphed into the “thank you, God” family. You know, the ones you look at and thank God that you don’t have to face their challenges. Their lives make you thankful for your own privileges. And even if you wake up a bit depressed, when you come across their story you relook your life and the veil is lifted to see God’s protection and grace in your own life…

It forced me to relook my own meaning making about life. Is it true that our struggles and “rock bottom” times carry the meaning that God isn’t providing? Is it true that only during our times of easy, comfortable living can we convey God’s grace?

I ponder about the story of the poor fig tree being reprimanded by Jesus for not carrying fruit. But it is clearly stated that “it was not the season for carrying fruit”…It only started making sense to me the day when my own life entered its coldest winter season. And I realised that Jesus expects us to carry fruit even “out of season”.

I decided then I wanted to be the “Thank you God!” family. You know, the ones who can thank God even out of season. The ones whose inner happiness and joy is in strict contrast with the imperfections of everyday life.  I am still a work in progress, and will probably continue to be. And so we became the “please God!” family. You know, the ones who daily pray; Please God teach us to be fruitful – in and out of season!