Breaking my silence

Most of our battles and biggest challenges rages within the confines of our mind.  It's a solitary experience, this great war we fight daily on our own.  These past months I have retreated into this mindful confinement.  I believed a lie that was so powerful it silenced me completely.  I was convinced that by being so bold about my believe in Juneldè's healing and full recovery, I was hurting God's truth.  Because in reality Juneldè is far from healed.  So far removed is our daily lives from full recovery that I too started questioning my sanity in holding on so tightly. 

The fog that this battle created overwhelmed any vision I had of Juneldè getting better.  I was like a defeated soldier, loyal to my King, but broken down beyond repair.  And then I did the only thing one can do when in a war...I seeked direction and Holy council from the One able to give a sound mind.

I am now ready to boldly proclaim that I believe.  Not in Juneldè's healing but in GOD.  Not in full recovery but in GOD.  Not in a blessed life but in GOD.  Not in an abundant future but in GOD.  However, because I believe in GOD I know without a doubt that he will give all of this to us, and yet so much more.  That is biblical, that is true and that is grace.

Thus my silence is broken, together with my spirit of fear.  I choose to live in love and power, not my own but given by the Holy Spirit. 

On the 13th of January 2015 was the two year anniversary of Juneldè's drowning.  She is still making progress, slowly but surely.  She is also continually facing setbacks, challenges and pain.  On these days our battle can only be won by speaking His word and blessings.  By refusing to accept any negativity in our lives, by renouncing and divorcing the thoughts that can hold us captive. And then there are the blessed days.  The days that she is not constantly crying, spasming and seizing.  Days when a smile, even small and askew, brightens our hearts.  Days when she eats a bowl of soft porridge and smacks her lips asking for more.  Days when her eyes focuses on our faces and we see recognition in those deep brown pools of wisdom.  Days when we ask her to dream of her bright future, and she answers us yes with blinks.  Days when the word mom escapes her lips in-between moans.  Days when she is happy to be put down for a few minutes and looks around a room with attentive inquisitive eyes.

I am not unrealistic.  I understand medically how impossible any hope of recovery is.  I understand the vastness of her injuries and the snowball it creates daily into new symptoms we face.  I am not in denial,  it is impossible to be when you have a child like Juneldè. 

I do however serve an unrealistic God, His power and greatness more vast than any injuries Juneldè might have.  His Grace larger that any symptoms.  His Name more powerful than any lie I dwell on in my mind.

Juneldè's recovery is not in my hands.  It is not in my power.  It is not in my will.  My greatest gift to my daughter is to release her daily into His hands, His power and His will...

And isn't that the most amazing place for any of us to be?

Keep your Faith...

He lifts her up in his arms, in turn taking her arms and hooking them around his neck.  Her limb body hangs close to his heart, his one hand around her waist in her pink top. His other hand at the back of her head holding her eyes locked to his.  And then they dance.  He looks upon our daughter and smiles…In this moment time stands still and unconditional love becomes visible. 

Looking at her small fragile frame against her daddy’s broad chest, and his big hands securely holding her up in the air leaves me deeply grateful.  Grateful that His grace carried us these past almost 20 months since the accident.  Grateful that even though her recovery is slow it is still steady and surpassing all initial grim prognosis.  Mostly I am grateful for Faith!

In many ways I have become quieter, more pensive and less ‘wise’ as a result of this journey.  I do not pretend to have the answers to life’s philosophical quests.  My heart is more exposed for all to see and the range of emotions I am capable of in a day is quite astounding!  But I have learned to celebrate the small things and to keep on trying. Holding my head up high…

Juneldé is growing tall and gaining weight.  She looks healthy and has a good colour to her skin.  We cut her hair and she now sports a cute fringe.  She is eating food orally and manages to chew and swallow foods like spaghetti bolognaise, mushed chicken and Flings chips.  At a time she can manage up to 20ml of water or juice before it runs down the wrong pipe and leads to a fitting cough.  She has better conscious control of her body and it is easier to carry her, sit her and dress her than before.  She is very quirky with her ‘yes’ and ‘no’ blinking answers and I find that we laugh a lot at her antics when interacting with her…Her intelligence is also shining through and she needs constant mental stimulation.  We find it challenging to accommodate this need with her immobility; however rejoice the fact that it is there.

She also craves social interaction and new environments.  If I think back at a time when she was so sensory sensitive that she couldn’t process any outside stimulation this in itself is a miracle. She has invented lots of ways to communicate her needs to all around her, even though she’s not yet verbal.  She is however loud! Packing out an array of cries and moans that gets us all jumping to assist.

Miley Cyrus sings a brilliant song about The Climb.  A song that encompasses my deepest yearning dreams and daily refrain.  Because of Juneldé we are staying strong, pushing on and keeping the faith…

The Climb

I can almost see it

That dream I’m dreaming but

There’s a voice inside my head sayin,

You’ll never reach it.

Every step I’m taking,

Every move I make feels

Lost with no direction.

My faith is shaking but

I got to keep trying

Got to keep my head held high.

There’s always going to be another mountain,

I’m always going to want to make it move.

Always going to be an uphill battle,

Sometimes you’re going to have to lose.

Ain’t about how fast I get there,

Ain’t about what’s waiting on the other side.

It’s the climb.

The struggles I’m facing,

The chances I’m taking

Sometimes they knock me down but

No I’m not breaking.

The pain I’m knowing

But these are the moments that

I’m going to remember most yeah

Just got to keep going

And I,

I got to be strong

Just keep pushing on.

There’s always going to be another mountain,

I’m always going to want to make it move.

Always going to be an uphill battle,

Sometimes you going to have to lose.

Ain’t about how fast I get there,

Ain’t about what’s waiting on the other side.

It’s the climb.

Keep on moving,

Keep climbing,

Keep the faith baby.

It’s all about

The climb

Keep your faith.

Perfect imperfection

Our days and weeks have fallen into a rhythm.  Every day we wake up at 6:45 to relieve Mary of her night duty, always finding her and Juneldè chatting (Juneldè answering with her eyes and very engaged in the conversations).  Usually when we enter the bedroom Mary is giggling because the moment Juneldè hears our bedroom door open she starts to breathe quicker and looking towards the door in anticipation of our arrival.  We are very grateful to still have Mary for 6 nights a week, because our little princess sees it as her duty to wake up before the birds.  Thus by 6:45 she already has completed her morning stretches and massage routine, ate her porridge and graced Mary with beautiful smiles.

Between seven and eight in the morning it is cuddle and kisses time.  Julius and I take turns to fetch Juneldè in the mornings (if his work allows) and have the opportunity then to spend quality time before the day starts.  She is very responsive and engaging so early in the morning and it is really a great start to our day. 

At eight o’clock on weekdays Ratie arrives for the day.  She is Juneldè’s nanny and awesome care taker.  They have a special bond and Juneldè is always quite excited to see Ratie.  Then Ratie prepares Juneldè’s second meal of the day and morning medication.  And so our day of therapy begins.  On Mondays we have Speech-Communication and Swallow therapy, followed by Babygym and ending of with Hydrotherapy.  On Tuesdays we have physiotherapy, on Wednesday’s Occupational therapy. Thursdays we end the week’s official therapy with physio- and hydrotherapy.  Saturday mornings we head of to Krugersdorp for our weekly horse-riding therapy.

At home in between therapies we are always busy with our IAHP program and therapy homework.  We have the radio on all day with various praise and worship songs as well as traditional kids’ rhymes and stories.  Our days are filled with small (and big) miracles whenever Juneldè is able to do something she couldn’t do before.  Every time this serves as a strong motivator to just keep on keeping on…

Between four and five o’clock it is time for Ratie to go home and then Juneldè and I cuddle and chat about the day, waiting for daddy to return from work.  Some days daddy have to work very late and we don’t get to see him before Juneldè sleeps.  Other days we hear the gate and garage open and eagerly then awaits his arrival.  Juneldè is very quick to hear the gate and garage and then one can see her quickened breathing and big eyes, anticipation riddling her body.  This little girl truly adores her daddy!

Then it is Upsee time.  Our princess and daddy and I walk in the neighbourhood with Bella on her pink leash.  And today I had the privilege to watch my daughter and her daddy dance…Beautiful and magical!

At six o’clock it is bath time.  We have a big bath in our room and I fill it to the brim for myself and my peanut.  Daddy undresses her and when I take her with me in the bath she gives a big sigh and serene, content and wide smile.  I wash her hair, give her a head massage and sings to her.  This is treasured, bonding time.  Daddy then dresses her, blow dries her hair and wraps her tight in a fluffy blanket.  Then he sits with Juneldè on his lap whilst I prepare dinner,  and this is also where she promptly stars yawning  before falling asleep.

Yes, our days have regained a certain comfortable rhythm.  A wonderful state of perfect imperfection.  Beth Moore says in her book “Believing God” that maybe God uses our circumstances to either teach us about His Majesty or His Sufficiency.  Sometimes God performs a wondrous act of an undoubtable miracle, so that all may Know He is God, He is Majestic.  Other times our path is less spectacular, more isolated, however just as great a gift…Because during this time He imparts on us His sufficiency.  He uses the good days, bad days, worse- and better days to truly be our Provider.  He is enough, He is sufficient.

Our small family’s lives’ are challenging, Juneldè’s recovery riddled with ups and downs, slow and strenuous.  But I can truly say that not in spite of this, but maybe because of it, our lives are imperfectly PERFECT…

Dancing with daddy...

Why?

Dare I ask why? And if I dare to whom should I direct the question? WHY?!

It is a daily anguished cry from the depths of my soul...Why did she drown? Why could we not have found her sooner? If then there was a lesson to be learned, a show of His miraculous power why then did she not walk out of ICU, completely healed? It is not as if I asked the impossible, it happened for so many other kids. Parents and kids in similar circumstances who survived and thrived even with apparent odds against them.

I remember clearly that first week in ICU, the fear, the angst, but also the positive prognosis from the doctor and medical team. The feeling that we will be part of the lucky ones that will take our daughter home the way we knew her...  And then that terrible day, the ARDS, the refusal of her body to take in oxygen, the prolonged hypoxic onslaught on her brain and the inevitable cardiac arrest.  It was then that the picture changed, that her injury became profound and she arched into a terrible posture, evidence of the harsh reality. Why then did this happen? Why could we all have not been spared this impactful syndrome?

We took her to the rehabilitation hospital, and she improved beyond expectation, letting our hope soar! Then came another relapse, a grand mal seizure, with the negligence of the night nursing staff to react, and the visible impact on Juneldè...Her fragile body and brain losing the battle and leaving my confused outcry: Why?

She subsequently fought a seven week rotavirus, bladder infections, pneumonia, liver failure, and immense daily pain from spastic dystonic muscles. We travelled from hospital to hospital when finally after six months we could take her home.

Two days later hit the second grand mal seizure, leaving her with no breath and only a faint heartbeat. We rushed to the ER and she was readmitted to hospital. That seemed like the final blow, the one that her body and brain had no fight left to stand up against. We were given no hope for her future. Told to find her a hospice...All the groundwork we have covered and improvement she has made null and voided by this event.  And again, every beat of my desperate heart asks, why?

You would think that whilst in the midst of a storm, with hurricane strong winds there is no opportunity for added disaster.   Then the tsunami overcome you, with a rogue wave you did not see coming. For us this was in the shape of an armed robbery, fearing for our lives and hearing the gunshots being fired just outside the door...Dare I ask, why?

All of this leaving us short of breath, soul weary, rundown, spiritually deficient...

We have always dreamt of having a couple of kids, their lively chatter and laughter filling the house. This dream is still alive and for more than two years we have prayed for and waited for our second child. We have made peace with the fact that God's timing is divine and greatly rejoiced when we were certain our prayers were answered.  Then came the miscarriage, and even though it was very early, and I chose to put my head in the ground and hid away from the pain reality  brings, I could not run away from the question most prevalent in my mind...Dear God, Why?

"It is not fair, Abba Father! We are good people, loving You, clinging to our faith and hope.  Choosing to believe and stand steadfast in your word and promises!"

The noise of my mental daily struggle overshadowed His voice. I was so sure He decided to keep quiet, not realising that it was I who cannot hear Him.  Through His grace came the opportunity to "Be still and know that I am God".

" Did I ever promise you that life will be fair?"

I was stunned, “But God, it just seems personal, non-sensical, never-ending!"

"My child, There is no fair or unfair. There is only trust...Trust Me, trust ME, TRUST ME! For I am JUST..."

This was my answer from a God so incredible, mighty and great...

Why...

Why was her life restored twice when it should not have been? Why do I still have the privilege to hold her, love her, care for her? Why did she recover after every physical illness and why is she still making progress? Why did he give us promises to hold on to and continue to lift us in hope and faith? Why are we given strength beyond what is humanly possible? Why were we protected during the robbery beyond what makes sense? Why do we have prayer warriors lifting us up?  Why do we have close family and friends who continually support us, carry us and loving us? 

If I dare then to ask the why questions from my own painful perspective and rundown mind, I must also be willing to face the Light of His mercy, clearly visible in everyday of our lives...

The sound of Hope...

I remember the day I browsed through Facebook and saw the picture of a smiling happy little girl (with motor impairment) strapped to her daddy, with a harness and special shoes enabling her to walk with him.  I just knew I had to get a device like that for Juneldè.  To be able to see her upright again after more than 16 months of lying down would be priceless.

The device is called an UpSee, designed by Leckey for Fireflyfriends.  The original idea was brought to them by a mom, Debby Elnatan.  She designed her own version for her son Walter.  Walter has Cerebral Palsy and when he was two years old his therapists informed his parents that he did not know what to use his legs for.  His mom decided to start walking him by holding him upright, however this process was physically very demanding.  So the idea of the UpSee was born and she designed several versions which she herself used with Walter.

Firefly launched the UpSee on the 1^st of April 2014, 14:00 BST (British Summer Time).  I spent hours preparing to purchase it for Juneldè.  I went onto the Webinar, measured Juneldè, and put up spread sheets to make the budget work on our side.  With donations from caring people we were able to make this happen.  The day finally arrived when we could purchase it, excitement ran high.  However there was such a big international demand that the website could not handle the traffic and went offline for 24 hours.  The following morning at 05:00 the website came online again and I finally ordered our UpSee…

3 Days later came the FedEx phone call confirming my details and 5 days later the FedEx delivery van stopped at our gate.  When I opened the box I was yet again amazed at the simplicity of the device.  It was also visually appealing with a denim jacket and bright pink inlays. 

You might wonder why the need to get Juneldè upright, would it help to get her to walk again?  I too was at first confused when already in rehabilitation hospital the therapists wanted to put Juneldè in a standing frame as well as pull and roll her upright on big gym balls.  The main idea, as explained to me, was not to teach her to stand and walk per se, it was however to get weight transference through her joints, most importantly the hips.  You see, once we start walking or reach a certain age, we need to grind our hips into the hip socket, otherwise run the risk of hip dislocation.  In Juneldè’s case, her severe dystonia and muscle spasms furthermore pushes the joints apart, instead of connecting the hip bones to the socket.  In an effort to address this need, we purchased a standing frame.  Juneldè however had no regard for this medical explanation and refused to stand in the frame.  She hated the feeling of being restrained and strapped in, and thus her spasms and severe contractions of muscles were only worse in the frame.  We then started to walk and stand Juneldè ourselves, positioning ourselves behind her and using a large therapy ball to roll her into standing.  This worked much better, however couldn’t be sustained for a long period of time, thus hampering the therapeutic effect of this.

In this context we were exhilarated when our UpSee arrived, however also fairly apprehensive that Juneldè will react the same way to this device.  The first time we had her strapped in front of her daddy you could see the strain on her face, but she was clearly in her element.  She did not complain or pull or pushed, and it was so thrilling and motivating to see her upright.

Daily when daddy Julius arrived home we would put her in her UpSee and they will walk.  At first only 24 metres could be managed.  Later we were thrilled with the 73 metres she managed.  And then finally yesterday she walked this way for more than 100 metres!

Our miniature Maltese Bella was in her element to see Juneldè on her feet and outside and relished the opportunity to play ball.  It is this video I posted on my Facebook wall and it was the comment of a friend that struck me.  She pointed to my laugh on the video and said that that is the sound of hope.  I myself then listened to the video again and heard newfound light-heartedness, joy and, yes, also hope in my voice…

Thank You Fireflyfriends and UpSee for this wonderful invention!

When grass are growing...

(I am overwhelmed and very appreciative as to the interest and support towards us and Juneldè.  Initially this blog started as a means of sharing Juneldè’s story and journey with close family and friends, whom mostly were Afrikaans speaking or at least in a position to read and understand Afrikaans.  During the past 15 months we have gained support from all over the world and at first I advised these cyber friends to utilise the Google translation functionality, however Google it seems are also not that fluent in Afrikaans. With a big thanks to our followers, thus come more blog inscriptions from now on in English.)

Truthfully, for some time now, it has been difficult for me to comment on how exactly Juneldè is progressing.  How do you put into words the intangible perception that she is making great progress?  I realise that I should be able to mention clear facts, I wish I can say she is holding her head up independently for the whole day, or that she is able to sit, or talk.  Less opportunistic at least I should be able to say that she is making baby sounds, or drinking water out of a bottle, or suckling and sucking on a dummy and straw.  However, I cannot. 

With this in mind I was sharing my struggles with Julius a while ago.  Over dinner I exclaimed that it feels like Juneldè is reaching a Plato.  I felt as if we are at a point where she is not taking rapid leaps in her recovery anymore, where I do not have facts to keep the momentum going.  He patiently listened to me and then asked me the following:  “Can one see grass growing?”  I didn’t understand the question or aptness of the reference.  When seeing I’m puzzled, Julius said that even if I were to sit on our patio day and night, focused on our grass, looking at it with keen interest, I will not be able to physically see the grass grow.  However, every week in summer, less in winter, our gardener needs to cut the grass.  Clear indication of it growing…

I started to comprehend his wisdom.  Juneldè’s recovery is like the grass to me.  I give it water, compost and infinite care. Every day it is my focus, something I intently and keenly look upon.  I realised that as the grass-grower, I do not have the opportunity to physically experience the growth.  This doesn’t mean there is no growth. 

Sometimes it is not the exact facts, measurements and statistics that prove growth.  For us it is our newfound peace, Juneldè’s general health and physical stability, and perceiving her newfound awareness every day. As a family we are more and more mobile with her, we more readily accept invitations to get-togethers at friends, not needing to carry the oxygen, saturations monitor and suction machine with us.  We do not anymore need to administer an arsenal of medication according to a strict daily schedule. We have managed to wean Juneldè of to only two chemical medications, not a small feat in light of the 11 we started off with.  The general atmosphere in our home has changed, moving from a stressed, tightly wound climate to where we are now laughing more, enjoying Juneldè’s facial expressions and her personality that is shining through.  We again feel like a mom and dad, not inept care takers and nurses.  Our ‘lil girl is craving our attention, demands cuddles and gives us so much love…

Truthfully then, even though I cannot tell you the exact centimetres of growth, elaborate on the precise shade of green, or the thickness of our “grass”, it doesn’t mean that there is no progression.  It only means that we have entered a much needed phase of newfound stability and calmness…

This is Spirit, a five year old horse that was neglected and abused by previous owners.  She is now rehabilitated and utilised as a therapeutic horse in psycho-therapy.  She has the ability to connect with people and draw out and reflect a child's emotions.  She and Juneldè hit it off immediately...And Spirit cannot help but steal as many as possible kisses from Juneldè.

Juneldè is having sensory fun at Occupational Therapy with shaving cream and a mirror.  She is however not entirely sure if she is enjoying it or not....

Hippo-terapie

Vreemde naam, ek weet!  Veral vir ons boertjies dink ons dadelik aan ‘n seekoei.  Nee, ons het nie nou totaal en al die plot verloor nie, en Juneldè kry nie seekoei-terapie nie (alhoewel sy mal sou wees daaroor indien dit wel die geval is, ons poppie is altyd ‘n bok vir nuwe sports)!

Hippo-terapie is die groot woord vir perdry terapie.  Of dan “equine-therapy” of “Adaptive riding therapy”.  Daar is heelwat name vir hierdie ponie-perdry terapie maar die interessantste is “hippo”.  ‘n Seekoei se naam Hippopothomus beteken dus letterlik see-ponie/perd.  En dus is hippo-terapie eenvoudig perdry-terapie. 

Die eerste Saterdag wat ons na die plasie in Krugersdorp gery het, was ek maar onseker oor wat om te verwag.  Ek het vanuit my A-tipe persoonlikheid telkens seker gemaak dat die terapeut deeglik bewus is van Juneldè se vermoëns, aldan nie.  Ek was nie seker hoe sy dan nou op ‘n perd sit gemaak gaan word nie, maar na deeglike navorsing oor die voordele van hierdie terapie, was ek ook ‘n gedetermineerde mamma dat sussa wel op ‘n perd sou klim.

Daar aangekom begroet hasies, varkies en varke, eende, hoenders en perde ons.  Ons word vriendelik gegroet en bekendgestel aan Autumn Hills se agtergrond en mense.  Ek kry die geleentheid om op te som waar sussa kort na die ongeluk was en die vordering en wonderwerk-herstel wat ons reeds beleef het tot nou.  Ek luister na myself en hoor opnuut hoe ver ons al gekom het.  Juneldè raak baie gesellig en meelewend met haar ogies se Ja en Nee en dit is duidelik dat sy baie uitsien na die perdry sessie!

Ons ontmoet vir Nemo, ‘n af-oor gerehabiliteerde ponie.  Dit roer my dat hierdie perdjie wat mishandel was, so in voeling kan wees met ons mensie se seer, haar onvoorwaardelik aanvaar, en reg is om te “werk”.  So het ons almal, mens en dier, ‘n roeping uit die Here se hand.

Juneldè word op Nemo se rug sit gemaak, en pappa is aan die een kant, Cherie die terapeut aan die ander kant.  Ons liefie kind sit regop op Nemo (met pappa en Cheriè wat klou om haar op sy rug te hou) en die perdjie loop in ‘n sirkel met haar.  Telkens stop Nemo, en terwyl ons nog wonder oor die rede hieragter, raak dit duidelik dat hy sussa se dystonia spasma voel aankom nog voor ons dit kan sien.  Sodra haar spiere ophou saamtrek, loop Nemo weer met haar.  Die aanvoeling en interaksie bring sommer trane na my oë.  En ons poplappie is in haar element, sy antwoord met oogknippe dat sy dit baie geniet, dat sy nie wil ophou nie, dat sy mal is oor Nemo en dat sy dit beslis weer wil doen!  Vir 20 minute kry Juneldè die wonderlike bevrydende gevoel van mobiliteit, met Nemo se loop-lyf onder haar wat presies simuleer wat ‘n mens se lyf beweging is as ons loop.  So kry Juneldè se spiere wat ons so sukkel om te mobiliseer beweging en oefening, haar diep kern-maagspiere, rug spiere, binnebeen, boud-  en nekspiere werk om by te hou!

Vir die res van Saterdag en Sondag laat Juneldè se lyfie haar en ons duidelik verstaan dat spiere gewerk het wat 15 maande terug gebruik is!  Haar boude trek knoppe, daar is biltonge op haar rug en as jy aan haar magie vat, trek sy terug van die eine maagspiere.  Maar as ons vra of sy weer wil gaan kuier by Nemo, dan antwoord sy:  “Ja, ja, ja, ja!”

Die wonderlikste was toe ons na die tyd vir sussa en Nemo teen mekaar hou, en Nemo haar opruik met sy neus en drukkies gee met sy gesig.  Juneldè se arms en hande beweeg op en af, en skielik merk ons hoe haar voorarm vorentoe gaan, sy haar vingers oopmaak en Nemo begin vryf…Dit is asemrowend! Hierdie is die eerste keer wat Juneldè haar arms en hande willekeurig gebruik om iets te doen.

Ons gaan dus nou elke Saterdag vir Nemo kuier en dis met opgewonderheid wat ek uitsien na hierdie perdjie-op-gallop uitstappies!