Hidden Truths

Last words

Ingrid Botha; born: 20 September 2005, 16h15; passed away: 2 March 2012, 12h50

Like Abraham, we walked our road to Moria with Ingrid, in obedience to the LORD. When we reached our Moria, it was not necessary to build an altar - Jesus was waiting for Ingrid, because He had already made the  ultimate sacrifice. We put Ingrid back into His waiting, loving arms.

And the angels rejoiced - because Ingrid was home at last.

In Zechariah 8 the prophet tells us of the New Jerusalem - in verse 5 he says: 'The streets of the city shall be full of boys and girls playing in its streets '. And when I see my little girl again, free from convulsions, disabilities and illness, I shall run to her and my first words will be 'Do you remember me - I called you Ingrid!'

All glory to the LORD!

Anje 

Anje, I sit here, stunned.  I reread your post several times. Ingrid is home.  Ingrid is Home?

Your words speak of hope in the sorrow, and I wonder how much those words reflect how you truly feel and how you aspire to feel.

Forgive me for any insensitivity, but were you anticipating this turn in the journey? Was it thought that Ingrid would die so early in her life?

I ache for you.  I have never met you face-to-face, but I have tears for my new friend, for you who has already shown such grace and wisdom in just a few emails. 

May God surround you and the family with his love.  May His strength flow through you to minister to your family. 

Adequate words fail at this time, but I wanted to post something -to send some love and prayer to you.

May you also be given the grace to receive those who offer their condolences - senstive and insensitive.

Lamentations 3:19-23 - I remember my sorrows and my soul is downcast within me.  Yet this I call to mind and therefore I have hope. Because of the Lord's great love, we are not consumed.  He is faithful.  His mercies never fail.

Peace and joy to you, Anje.

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Your post is beautifully written.  I want to share it with others because of the incredible hope and comfort it reveals - in spite/because of its raw circumstance.  Someday, perhaps you would be willing to have it shared - even without your names if that was easier.

Dear Anje,

I have not been able to respond to any of your posts since you have joined this forum, yet I read each one and hung onto every word.  You might have read some of my earlier posts when I spoke about my daughter, Savanah Grace.

First I want to say I am so sorry for you and your family.  Words cannot express my sorrow.  It is ironic that the first time I am able to reach out to you and be able to speak about our daughters together is during a time of loss.  You see, my daughter, Savanah, also passed away last week, on Feb. 24/12 at the small age of 17 months old.

Thank you for your faith, your words of strength and hope.  I only hope that the Lord will bless your family with his peace.  My arms feel empty and my life appears bleak right now, yet I know within my heart that I am under the Lord's wings, sheltered and quiet.

My love to you.

Melissa

Dear Melissa.  To you, a new friend that I have not met, I ask that God will give you immeasurable strength.  My heart aches for you too. I don't want to believe the words you have typed.

I pray that you will see His faithfulness through this wilderness of sorrow and grief, and that you will also be lifted up by others around you.  Grief doesn't go away; we learn to live with the grief, and it truly shapes us - sometimes, it seems, it breaks us. 

First you learned to live with the grief that comes with loving a child with complex needs, and now you have a complicated grief of a different sort.

I had wondered about you in these last few months as you were excited to start a support group in your area.  I wondered how that was going and how your return to work went.

And now, Savannah is in His arms.  As beautiful as that is, it is also with tears that I acknowledge Savannah is no longer in your arms.

Perhaps you can draw comfort from Anje's words as she knows so much more than me these days you are in and are moving into.  Finally, there is peace for both Savannah and Ingrid - and no more suffering for the two little girls.

Peace to you, Melissa.  Much strength and love.  I will pray for both you and Anje - and your families- as often as I can. 

As I wrote to Anje: Lamentations 3:19-23 - I remember my sorrows and my soul is downcast within me.  Yet this I call to mind and therefore I have hope. Because of the Lord's great love, we are not consumed.  He is faithful.  His mercies never fail.

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Last words from a father

I followed the forum on parents with children with disabilities with great interest with my wife. As Ingrid’s father I wanted to write a few words in her memory.

I know that my daughter is now free from pain and illness and that she is perfect and complete in the arms of Jesus. I also have the assurance that she is saved – Hebrews 11:7 “By faith Noah, being divinely warned of things not yet seen, moved with godly fear, prepared an ark for the saving of his household, by which he condemned the world and became heir of the righteousness which is according to faith.” Because I am a believing parent, my children are part of that bond I have in Jesus Christ. The road my wife and I walked with Ingrid for six and a half years, we walked in faith – there were difficult times, but through the grace of the LORD we endured.

During times of trails there were also tribulations – that will always stay with me. Although Ingrid was cortically blind and unable to talk, we still had word-less conversations with each other. I knew what she wanted without hearing any spoken word. Ingrid’s helpless state and her absolute dependence on us reminded me of our absolute dependence on God – Psalm 121:7-8 “The LORD shall preserve you from all evil: He shall preserve your soul. The LORD shall preserve your going out and your coming in from this time forth, and even forevermore.”

I believe that the LORD had a purpose creating Ingrid that is beyond my human understanding – Psalm 139:16 “Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them.” Although we buried her earthly, temporary body, I know that now she has a perfect, glorified body – 2 Corinthians 5:1-2 “For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we can groan, earnestly desiring to be clothed with our habitation which is from heaven.”

Unbelievers are not able to comprehend that death is only the beginning and not the end. Paul writes in Philippians 1:21 “For to me, to live is Christ, and to die is gain.” And I know that my little girl, Ingrid, completed her work on this earth and that she will live forever in the glory of the LORD.

Soli deo Gloria!

Willie

Thank you for your words, Willie.  I saw your wife's email again last night, and we have thought of you both often these last two weeks. 

Your words are raw yet inspiring.  I want to read them several times this week.  I hesitate to write more for fear of simply throwing empty words and phrases out there. 

Thank you.  May God give you the strength, the joy, and the peace that passes our understanding but comes from Him. 

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I read Mark Stephenson’s post on Rick Warren’s opinion on the destination of the souls of the disabled as well as pets. I was not sure whether to post my thoughts here or at Mark’s post – I’ve decided to link it to what my husband and I have written under Hidden Truths.

Ecclesiastes 11:5 says “As thou knowest not what is the way of the spirit, nor how the bones do grow in the womb of her that is with child: even so thou knowest not the works of God who maketh all” (KJV)

The Jewish Study Bible’s translation of this verse reads “Just as you do not know how the lifebreath passes into the limbs within the womb of the pregnant woman, so you cannot foresee the actions of God, who causes all things to happen”

Recently I have tried to make sense out of the experience of giving birth and taking care of my disabled daughter – who lived a very temporary, short life on earth.

From Ecclesiastes I realized that my daughter’s birth was not a random event – she was divinely created by the LORD. And while still on earth I shall never fully understand God’s purpose in creating her.

Since I started reading this forum, (and took the courage to join in discussions), I have witnessed two little girls who both suffered from West syndrome reach out across oceans with a message of hope and inspiration. I have met other Christian parents with disabled children – and found comfort in their experiences.

Tennyson (quoted in a book I’m reading on the chronic sorrow that parents with disabled children experience), said:

“Once in a golden hour, I cast to earth a seed.

Up there came a flower. The people said a weed.”

Through the grace of God I have been able to see, cherish and love Ingrid as a divine creation of the LORD. (And sorry – as much as I love our family pets, I cannot see any connection with Rick Warren’s opinion.) 

God bless, Anje

Thank you, Anje.  Your words, once again, bring a solid sense of Being.  May God continue to walk alongside you. May you feel His Peace. 

I often think about you and your family.  It is good to read your words again.

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Anje and Willie and Melissa,

Somehow I missed the posts about the going-home of your precious little daughters.  I'm sitting here stunned, sad, shocked.  I am so, so sorry for your losses.  I don't know if you will even read these words, but I'm praying that the Spirit of peace will fill you today. 

I close my eyes and imagine little Savannah and Ingrid playing together.  Joy and happiness and laughter.  Lots and lots of giggles.  But I ache for how empty your arms must feel.  Then Abba reminds me that His arms are never empty.  Today I pray you will feel Abba's arms around you, holding you close.

Blessings,

Bev

JOY AND SORROW

Someone asked me a while ago that if I had known the outcome, whether I still would have chosen knowing Ingrid.

In parenting a disabled child, I realized that joy and sorrow co-exist on the same spectrum. And I think that this is not limited to parenting only, but that in many trials in life joy and sorrow is to be found simultaneously.

Ecclesiastes 7:3 says “Sorrow is better that laughter, for by a sad countenance the heart is made better”.

I found joy in the privilege of knowing that I was part of God’s plan for Ingrid’s life and that I was able to fulfill my part and take care of Ingrid – although with limited resources on earth (and there some sadness creeps in). I found joy in seemingly small things – such as a smile, a contented sigh, the joy of taking a soothing bath. I found joy in the realization that the LORD provided financially, physically and spiritually – every step of the way. And joy in the faith that ultimately everything is in God’s hands (and that I am not able to understand everything fully) – again Ecclesiastes 11:5 “… you do not know the works of God who makes everything”.

I experienced sorrow in watching this terrible syndrome, first described by Dr. West in 1841, steal my daughter away bit by bit every day. And then - that indescribable moment when I knew that my daughter is gone from this life.

The ultimate joy is in the knowledge that we will meet again in heaven – Revelation 21:14 “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away”.

My answer to the question whether I would have chosen knowing Ingrid (with some presumption) – Yes, a million times, yes!

God bless, Anje

This week I had to endure another conversation that started with ‘I feel sorry for what happened to you, I cannot imagine what it must have been like, but …’

I listened, tried to explain some – and in the end came away with pity.

You see, I do not take care of my children to conform to the world’s view of what is right and wrong – even if it is coated with some religiosity. I did it because the LORD asked me to. And in that lies my strength.

Me and my family lived dedication, commitment and devotion every day – something the world would be better off knowing as well. I learnt the meaning of true selfless service to my child, I discovered that tenacity and patience co-exist and I loved unconditionally - without expecting any of the so-called conventional rewards.  Ask any parent / caregiver of a disabled child – we can write books on self-less giving.

And that does not need any justification.

Matt 18:5 ‘Whoever receives one little child like this in My name receives Me.’

God bless, Anje

As the father of a disabled daughter, I would like to share my family’s experiences and coping strategies in a world that measures human value in financial and economic terms.

As followers of the LORD and not of the world, we have to focus our minds on what is acceptable to Him and seek His will – Rom. 12:2 “And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God.”

When I look back at the six and a half years of Ingrid’s life on earth, I can truly say that it was worth it to walk the road of total care and absolute devotion to my daughter. During this time, we lost friends and family – who could or would not understand the world of the severely disabled. As a family, we could only seek the will of the LORD and pray for strength and perseverance – Col. 3:23 “And whatever you do, do it heartily, as to the Lord and not to men.”

I do not think a parent would willingly ask for his child to be born disabled – when this happen, you put away dreams and preconceived ideas of life and discover new wisdoms and strengths in life. 1 Peter 1:6-6 “In this you greatly rejoice, though for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perished, though it I tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ.”

I can testify that the LORD sustained us and provided for us – every step. A personal relationship with Him should take preference over everything. On this journey you sometimes have to make decisions where you cannot see a clear right or wrong (as we so much want to with our own lives as well as other’s lives). But when you stand back after a while, you see that it was the LORD’s decision and that you were a mere instrument in His hands. And this truly sets you free.

On a second level, you have a relationship with your spouse and then your children. After this come friends, community, fellow-believers. 1 John 2:15 “Do not love the world or the things in the world. If anyone loves the world, the love of the father is not in him.”

My family and I have entered a new stage in our journey – previously we were a family of whom one was severely disabled. Now we are a family of who a severely disabled daughter has passed away. And we shall still seek the will of the LORD – Heb. 12:28 “Therefore, since we are receiving a kingdom which cannot be shaken, let us have grace, by which we may serve God acceptably with reverence and godly fear.”

At the end of this journey, wherever it may take us, I want say as Paul “I have fought the good battle, I have finished the race, I have kept the faith.” 2 Tim. 4:7.

Soli Deo Gloria

Willie Botha    

A child who could not talk, taught me to whisper where angels fear to tread.

A child who could not walk, taught me to walk in faith.

A child who could not see, taught me to look to Eternity.

A child whose body was so fragile, she struggled to take another breath, showed more courage and strength that I would ever have.

A child whom I had to let go live in Heaven forever, showed me how to live this life.

God bless, Anje

PRAYER

Mark 14:36 ‘And He said, “Abba, Father, all things are possible for You. Take this cup away from Me; nevertheless, not what I will, but You will.” ‘

In praying, our faith and the content of what we ask, usually features strongly. But we often overlook a crucial element – the LORD’s will.

Jesus’ prayer and subsequent arrest in the garden of Gethsemane are well-known in the gospels. From what I understand, He was troubled and deeply distressed. His soul was sorrowful and His sweat became like great drops of blood. I also believe that Jesus, the Son, was the perfect example of faith and wholly lacked in sin. He was in perfect communication with His Father and pleaded earnestly with Him in Gethsemane. And He acknowledged the will of His Father.

Form a mere human point of view, judged on faith and pleading alone and ignoring the LORD’s will, Jesus’ prayer failed. In doing this, we become completely selfish and severely limit our viewpoint and ultimate destination in life.

CS Lewis, in the movie, Shadowlands, based on his life, says: ‘I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.’

I can’t remember reading it in one of his books, but I think it is something to hold on to. Have faith in the Almighty LORD, plead our case before Him, tell Him how much it hurts and never let go of the peace His perfect will gives.

God bless,

Anje

To Melissa, on 24 February

I often think of everyone I've met on the forum.

To Melissa & family: my thoughts and prayers are with you in this time. Thank you for reaching out to me and my family a year ago - it gave much needed comfort and peace.

Altough now I only know in part and see dimly in a mirror, one day it will be face to face with full knowledge and understanding. Part of what I hold onto, is knowing that on Friday, 2 March 2012, when my daughter died in my arms, the LORD was right in the same place where He was when His Son died on a wooden cross. Waiting to take Ingrid in His arms and never let go.

God bless, Anje

Hello again,

First I want to thank you Anje, for your encouraging words that you posted recently.  I am frequently amazed at the strength of your faith.  Your posts uplift me.  I thank the Lord for people like you in my life.  I also want to pass along my thoughts and prayers to you and your famliy as you approach the one year anniversary of when sweet Ingrid passed away this coming Friday.  May the Lord surround you with peace.

This past week was incredibly emotional for my husband and I.  As each day went by I could recall, sometimes with amazing clarity, what was occuring one year ago and how I was feeling.  On the 24th I woke up with a feeling of breathlessness and loss so strong....I found myself straining to hear Savanah sleeping in the next room...this is something that I haven't done in a long time.  We went to the gravesite with some flowers and we spent some time looking at our many many pictures of her.  We felt love and support from close family and friends but like it was a year ago, it couldn't take away our pain.  I recently read an article in which we are not supposed to ask God "why" these things happen but rather "how does it work together for our good".  I've been trying to do this.  I am comforted that Savanah is whole and seizure free, but it would be so nice to have a peek once in a while just to see how she's doing.  So the comment that you included about seeing dimly now but clearly in time is such a great reminder to me to be patient and comforted.  I miss her so much, words cannot adequately describe.....

May God continue to bless all the parents here on this forum with a special measure of His grace.  May He bless all of his children, here on earth and those in heaven waiting for us.

The following is the memoriam that we put in our local paper this past week:

We thought of you with love today but that is nothing new.  We thought about you yesterday and days before that too.  We think of you in silence, we often speak your name.  Now all we have is memories and your picture in a frame.  Your memory is our keepsake, from which we'll never part.  God has you in His keeping, we have you in our hearts.

Hallo Melissa,

Thank you, As Sara said in a previous post - we learn to live with grief, and it shapes us.

One of my favourite Afrikaans poets (SJ Pretorius) wrote:

Werktuigkundige

Die lewe gaan sy kringloop op die swart

bank van die ewigheid, God druk die hart

versigtig daarop vas en slyp dit met

die donker, skerp klein helsteen van die smart.

Loosely translated:

Mechanician

Life goes on its cycle on the black

bench of eternity, God gently squeezes the heart

onto it and whets it with

the dark, sharp small hellstone of grief.

We gave most of Ingrid's medical equipment & special feeds to a family who also has a little girl with West Syndrome. I still have a chest of drawers with Ingrid's clothes in it in our bedroom. I tried to unpack - but could not finish, Way too many tears and memories.

God bless, Anje

A pearl of great price

Shortly after Ingrid’s diagnosis, my wife showed me an analogy which describes parenting a disabled child – Welcome to Holland. I’m sure many parents of disabled children know this piece well: planning a family is like planning a glorious trip to Italy. But instead of landing in Italy you end up in Holland, having to change your plans for your much anticipated trip entirely. At the time my wife said that we ended up in Siberia in a blizzard. I told her that although we sometimes have to struggle daily to survive in our Siberia, there are also breath-taking landscapes, countless snowflakes - each uniquely formed by the LORD and that there was also no escape from His will and the path He asked us to walk. This truly taught us to rely on Him and Him alone.

Although at times we were unwillingly confronted by the world’s interpretation of the severely disabled (the inevitable question of what we must have sinned – and yes, this was said in our faces), the promises of the LORD never wavered – 1 Peter 1:7 “… the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ,”. Jesus challenged the world’s prejudices when He said in Luke 13:4-5 “… those eighteen on whom the tower in Siloam fell and killed them, do you think that they were worse sinners than all other men who dwelt in Jerusalem? I tell you, no; but unless you repent you will likewise perish.” Each one of us must repent of our own sins and then walk in Jesus’ footsteps.   

To me, Ingrid was as a precious pearl – Matthew 13:45-46 “… the kingdom of heaven is like a merchant seeking beautiful pearls, who, when he had found one pearl of great price, went and sold all that he had and bought it.” A grain of sand forms a pearl in an oyster over a long period of time – what starts as painful process, produces a beautiful, precious pearl. And it was a privilege to be part of the process.        

With Ingrid’s birth, my wife and I joined a “secret” family – the world of families with disabled children. Although we only know a few in this family, we understand each other’s hopes, struggles and journeys. And when Ingrid’s task on earth was fulfilled and she went to heaven on her appointed time, we still remained part of this family. Because this journey changes you forever and you learn the true meaning of the words “Life is short”.

Jim Croce’s song – Time in a Bottle, describes the preciousness of the time we have with our families (even if one of them does not measure up to the world’s standards). I would like to share the words of the song:

If I could save time in a bottle

The first thing that I’d like to do

Is to save every day

Till eternity passes away

Just to spend them with you

If I could make days last forever

If words could make wishes come true

I’d save every day like a treasure and then

Again, I would spend them with you

But there never seems to be enough time

To do the things you want to do

Once you find them

I’ve looked around enough to know

That you’re the one I want to go

Through time with

If I had a box just for wishes

And dreams that had never come true

The box would be empty

Except for the memory

Of how they were answered by you

But there never seems to be enough time

To do the things you want to do

Once you find them

I’ve looked around enough to know

That you’re the one I want to go

Through time with  

To close – David’s tribute to the glory of the LORD in Psalm 8:1-2 “O LORD, our Lord, how excellent is Your name in all the earth, who have set Your glory above the heavens! Out of the mouth of babes and nursing infants You have ordained strength, because of Your enemies, that You may silence the enemy and the avenger.”

Soli Deo Gloria

Willie

Thank you, Willie and Anje, for your words.

There is so much we don't understand in this life, and in trying to make sense of it all, we lose time to cherish the joy that is right in front of us.  Yet, I find sleep deprivation an enemy that robs me of such logic - and I must remind myself out loud to fight for joy more so than understanding in this journey.

I just read through your emails again.  I hope you have them recorded somewhere for you to read later too. 

His Spirit comes through your words, bringing encouragement and a sense of accountability to me.

Stertke to you both.

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Hallo Sara,

I read your family's blog regularly - your journey are a part of my family, so many experiences resonates with us. We pray for you and your family.

As Willie said - we are still part of the world of parenting disabled children. It is just over a year, but many times I still wake up at night at the times when Ingrid had to be turned or cared for. You can only take sedatives for so long - so now I bake or sew or write at night and end up giving away what we can't use. And unconsciously I watch children that would have been Ingrid's age - another mom who also lost a child told me she does the same. A small voice still wonders "What if ...." 

Part of this journey will always be 2 Cor.12:9-10 "... My strength is made perfect in weakness ... For when I am weak, then I am strong." The encouragement and wisdom that comes from our journey, is from the LORD alone. There are still times when I feel I cannot take another step, and still, He is there and I can get up and go on, because He asks me to. 

God bless, Anje & Willie

A short article in Creation Magazine, 35(4)2013 (from Creation Ministries International), caught my interest. A UK politician compared disabled children to deformed lambs with five legs or two heads that need to be put down.

One is reminded of Hitler’s rants against humans he called “useless eaters”. Examples in history of attempts to create a society that is disability free are numerous – in Sparta a father had the legal right to terminate a weak child; in Rome the handicapped were raised in the dark.

Christianity introduced the idea that children like these were close to God (Luke 9:48 “…For he who is least among you all will be great.”)

But, somehow the desire to conquer sickness and imperfection is deeply embedded in human nature. When confronted with that which does not fit into our pictures and plans, we become uneasy. And try to make our own plans.

In Isaiah 45, God’s plan for the salvation of Israel and the world, is revealed. Verse 9-10 (from the Jewish Study Bible), reads: “Shame on him who argues with his Maker, though naught but a potsherd of earth! Shall the clay say to the potter, “What are you doing? Your work has no handles”? Shame on him who asks his father, “What are you begetting?” Or a woman, “What are you bearing?””     

What seems of no importance and little value to the world, is a precious pearl of great price to the LORD.

The link to the original article:    

http://www.huffingtonpost.co.uk/2013/05/11/cornish-councillor-disability-colin-brewer-deformed-lambs  

God bless, Anje

Compassion, Caring and Determination are exhibited in the Matthew, Mark and Luke quoted Scriptures (to me).

A person in need of these three traits (C,C,D) is better aided when they 'see' all three in me.

Six-and-a-half plus two years on ...

Shakespeare, who lost a son at the age of eleven, wrote in Macbeth:

"Give sorrow words; the grief that does not speak, whispers the o'erfraught heart, and bids it break."

Six-and-a-half plus two years later on this journey we reflect on lessons learnt, decisions made, insights and sorrow that forged and changed - forever.

In the last few days before 2 March 2012, after years of relentless, around-the-clock turning, suctioning, feeding, medicating, we realised that the finish-line was in sight. Catastrophic epilepy was taking its final toll.

My beloved little girl's body was shutting down. She was so tired, and in pain, too much pain. I had to administer morphine.

On the evening of 1 March, Willie realised that it would be the last time that we would have our daily devotional as a family of four. He read Psalm 121. There were tears and pleas for grace, dignity and peace.

In the early afternoon of 2 March, as Ingrid lay in my arms, she was free from pain, convulsions and deterioration at last - a fight she fought valiantly and finished with grace. Our beloved daughter crossed her finish-line and was Home at last.

In Zechariah 8 the New Jerusalem is described - verse 4 & 5: "The LORD of Hosts says this: Old men and women will again sit along the streets of Jerusalem, each with a staff in hand because of advanced age. The streets of the city will be filled with boys and girls playing in them."

My father-in-law passed away a few years before Ingrid was born. He was a school-teacher and qualified as a preacher in the Dutch Reformed Church. He was involved in mission work in the rural communities of the Western Cape - especially after his retirement as teacher. He was a God-fearing man who dearly loved his children and grandchildren.

I know that when Ingrid completed her race, she met him for the first time and that she knew that he is her grandfather, George. And he knew that she is his grand-daughter, Ingrid. The stories they must share!

We put the last verse (8) of Psalm 121 on Ingrid's grave stone: "Die HERE sal jou uitgang en ingang bewaar, van nou af tot in ewigheid" ("The Lord will protect your coming and going both now and forever")

I know that Ingrid is safe, in heaven. That she finished her race. That she is in a better place, much better than this world could ever provide. This is not said lightly, nor meant as shallow consolation. On some days, this knowledge keeps me going forward.

When Ingrid was diagnosed, we searched for therapies and cures. We soon realised that sometimes the world of medicine is more of an art and not always an exact science. Some offered alleviation, some failed. We did not allow these successes and failures to define Ingrid. To us she will always be our beloved daughter and sister.

In a world that demands payback, obsessed with external clues of prosperity we came to know and live the opposite. We know what self-less service is. We learnt just to give - not being concerned with any kind of reward or validation from the world. This meant many sleep-less nights, cutting finances to the minimum, finding pleasure in the small things in life, many times switching to auto-pilot - getting up and going on, because the LORD asked us to. And we are the better for it.

We share a bond with other families we have met on this journey. We first hand understand and live experiences, insights, tears, joys, sorrows. And they have our highest admiration. And sometimes someone who has not walked a while on this exceptional road, offers misplaced advice - but still, we understand. Before embarking on our path, it could have been me.

We know now what Job meant when he said "I had heard rumours about You, but now my eyes have seen You" (Job 42:5). Because in this moment, when the LORD says "This is My will", you submit.

At times, we stood in awe, witnessing the plans of the LORD unfold before us. At other times, it was unbearable, helplessly watching our daughter in the grip of catastrophic epilepsy. This remains a mystery for now "... now we see indistinctly, as in a mirror ...". That part of the race, which we as parents, could not complete for Ingrid. We hold onto the hope of one day seeing "... face to face ..." (1 Cor. 13:12).

Still, we fought the good fight, we took up the full armour of God, "... having prepared everything, to take your stand" (Eph. 6:13). We finished this race, "... pusue righteousness, godliness, faith, love, endurance, and gentleness." (1 Tim. 6:11). Most of all, we kept the faith - "My grace is sufficient for you, for power is perfected in weakness ... For when I am weak, then I am strong." (2 Cor, 12:9-10).

Soli Deo Gloria, Willie & Anje

To mourn a child.

There are losses so profound that special words are used to describe a new state of being – when you lose a parent you are called an orphan, bereaved spouses are called widows and widowers.

In the English language (and Afrikaans), there is no term that describes the loss of a child – perhaps the loss of a child is not perceived as different from other losses.

Jacob lived 22 years in the belief that Joseph, his son, had died. When his sons returned to Canaan without Simeon, Jacob was beside himself.

Jacob uttered the Hebrew word in Genesis 42:36 that is used for a parent that has lost a child – shakhul. He said to his sons: “…You have bereaved me; Joseph is no more, Simeon is no more, and now you want to take Benjamin.”

Shakhul is simply translated as “bereaved”, not capturing its true meaning.

Shakhul is used a few times in the Bible (for example Gen. 27:45, Gen. 42:36, Gen. 43:14), and means to “be robbed of offspring”. This Hebrew term reserved for bereaved parents describes their initiation into the unenviable fellowship of shakhul.

 The recognition of being shakhul does not make this journey any easier, but there is comfort: the LORD treats the loss of a child in an honest and real way – as it should be. He designates a word that describes a parent that lives with the pain of losing a child – acknowledging that the loss is unique, traumatic and heart wrenching. The pain becomes a new reality – there is no new normality.

Revelation 21:4 “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”

God bless, Anje