Willie & Anje Botha, parents to daughters Magdel(11 years) and Ingrid (6 years). Ingrid was born with rare chromosome translocation, complete agenesis of corpus callosum & refractory, intractable West syndrome. Lives in Pretoria, South Africa. 1 Corinthians 4:1 "Let a man so consider us, as servants of Christ, and stewards of the mysteries of God."
It is no easy task to hold your disabled ill child, wondering what the next right thing is to do, how to alleviate her pain and discomfort – the plea to God ever present to see this child struggling to make sense out of what is happening, and to please, please do something. The medical people rush in and out with vials and tubes, phoning doctors, talking in medical terminology. And all you can do is pray.
The LORD’s omnipotence is without question – Revelation 22:13: “I am the Alpha and the Omega, the Beginning and the End, the First and the Last.” His omnipotence existed even before creation – John 17:5: “And now, O Father, glorify Me together with Yourself, with the glory which I had with You before the world was.”
Jesus, the Son, became human so that He “… might taste death for everyone” (Hebrews 2:9) – He fulfilled the promise made after the fall of man: “And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the Father, full of grace and truth” (John1:14). And He was obedient to the Father unto death.
In His omnipotence He did not have to do it – He does not have anything to learn. He did it out of love for mankind – Isaiah 53:5: “But He was wounded for our transgressions, He was bruised for our iniquities; the chastisement for our peace was upon Him, and by His stripes we are healed.” (John 3:16 as well).
Does the LORD see the suffering of the weak and the disabled? Hebrews 4:15 says “For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin”. Zephaniah 3:19 says “Behold, at that time I will deal with all who afflict you; I will save the lame, and gather those who were driven out; I will appoint them for praise and fame in every land where they were put to shame” (emphasis mine).
And this gives comfort to a parent with a disabled child – to know that the LORD does not value human life in financial terms and measurable achievements as the world does, but as His plan for redemption of mankind falls in place, you child will be there – with Him!
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.
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.
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.”
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.
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!'
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.
Scientific and Biblical views on the beginning of human life
Hallo Mark,
I would like to share part of a paper I wrote when doing a course on Biblical counselling. The paper was on abortion - I think it links to the question on whether abortion by choice is valid. I would like to hear any comments.
One question that is frequently asked when dealing with abortion is when does human life begin – and is it permissible to terminate a pregnancy based on man’s understanding? Scientific as well as Biblical views on this should be considered.
Scientific views
The genetic view argues that each individual is genetically unique – therefore human life begins at fertilization. If the zygote survives, it will grow into a person with his own unique set of genes. Thus life begins at fertilization. The main objection to this view is that some zygotes fail to implant into the uterus – which implies that that a zygote that fails to implant, is not human. This is not a logical argument – the occurrence of a spontaneous abortion does not imply that the lost is not fully human – anymore that a child that develops a life-threatening disease is not fully human any longer.
The implantation view argues that life begins when the blastocyst implants into the uterine lining. Implantation occurs six days after fertilization – this suggests that the zygote can only now be called human life. Implantation however, does not make the individual more human – it only makes him more likely to survive.
The embryological view says that human life begins 12 to 14 days after fertilization – as it is not possible for identical twins to develop after this. Humanness does therefore only exist when it is not possible for twins to develop any longer. This line of reasoning fails when the development of Siamese twins is considered. Siamese twins develop after the 14 day cut-off – they may share body parts and organs, but they are still distinct persons. Humanity can therefore not be defined on the fact that twins may share body parts or not.
The neurological view argues that life begins when the brain of the fetus can generate a recognizable EEG-pattern. This is usually observed at about 26 weeks into a pregnancy. It is then assumed that the fetus can engage in mental activity. A further argument is that life begins at 20 weeks of gestation. At this time the thalamus is formed in the brain – which is involved in the processing of information and is part of a complex system of neural connections that play a role in consciousness. However, it is not easy to perform an EEG on the fetal brain – the developing brain displays electrical activity at different stages. It can easily be argued that any kind of brain activity can signify human life.
The ecological view says that the fetus is human if it can exist outside the mother’s womb. The limiting factor is the maturity of the baby’s lungs. This presents an interesting problem – over the last century man has become human earlier and earlier due to the development of medical technology. A fetus born at 28 weeks gestation 20 years ago was considered viable – today we have the technology to support the life of a baby delivered at 24 weeks gestation. This view implies that man has the ability to ante-date life as medical technology develops.
The birthday view argues that life begins when the baby is born and the umbilical cord is cut – the short-coming is that even when a healthy baby is delivered after a 40 week pregnancy, he is still very dependant on his mother for survival.
The Biblical view
Psalm 139:13-16 “For thou hast possessed my reins: thou hast covered me in my mother’s womb. I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth. Thine eyes did not see my substance, yet being unperfected; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.” In Psalm 139 personal pronouns are used indicating that God knew the Psalmist as a person before he was born. God knew him when he was made in secret – implying that his parents were instruments in the hands of God.
Jeremiah 1:4-5 “Then the word of the LORD came to me, saying, before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations.” God tells Jeremiah that He knew him before he was born – he was set apart by the LORD and considered a person before birth.
Psalm 51:5 “Behold, I was shapen in iniquity; and in sin did my mother conceive me.” David acknowledges that he was sinful even before he was born – God knows our sinful nature when we are conceived in the womb.
Luke 1:39-44 “And Mary arose in those days, and went into the hill country with haste, into a city of Judah; and entered into the house of Zacharias, and saluted Elisabeth. And it came to pass, that, when Elisabeth heard the salutation of Mary, the babe leaped in her womb; and Elisabeth was filled with the Holy Ghost: and she spake out with a loud voice, and said, Blessed art thou among women, and blessed is the fruit of thy womb. And whence is this to me, that the mother of my Lord should come to me? For, lo, as soon as the voice of thy salutation sounded in mine ears, the babe leaped in my womb for joy.” Elisabeth calls the life in her “babe”. She says that he leaped for joy in her womb – exhibiting joy in the presence of Jesus Christ.
Galatians 1:15-16 “But when it pleased God, who separated me from my mother’s womb, and called me by his grace, to reveal his Son in me, that I might preach him among the heathen; immediately I conferred not with flesh and blood:” Paul acknowledges that God knew him as a person in his mother’s womb and that already at that time He had called him to preach the Gospel.
Judges 16:17 “That he told her all his heart, and said unto her, There hath not come a razor upon mine head; for I have been a Nazarite unto God from my mother’s womb: if I be shaven, then my strength will go from me, and I shall become weak, and be like any other man.” Samson tells Delilah of his covenant with the LORD. Although he broke the covenant, it was restored later when he repented. God intended for Samson to be a Nazarite even when he was in his mother’s womb.
Exodus 21: 22-24“If men strive, and hurt a woman with child, so that her fruit depart from her, and yet no mischief follow: he shall be surely punished, according as the woman’s husband will lay upon him; and he shall pay as the judges determine. And if any mischief follow, then thou shalt give life for life, eye for eye, tooth for tooth, hand for hand, foot for foot,” Mosaic law took particular care of looking after pregnant women. In the first instance, when a mother gives birth prematurely after being injured and the baby is not harmed, a fine is levied for causing premature birth. In the second instance, should the baby die, the penalty is life for life. The value of an unborn baby’s life is no less valuable than the life of an adult.
Conclusion - Jeremiah 13:16-17: “Give glory to the LORD your God, before he cause darkness, and before your feet stumble upon the dark mountains, and, while you look for light, he turn it into the shadow of death, and make it gross darkness. But if ye will not hear it, my soul shall weep in secret places for your pride; and mine eye shall weep sore, and run down with tears, because of the LORD’s flock is carried away captive.”
The miracle of human life belongs only to the LORD. Any human attempt to qualify life will be limited to just that – a meagre attempt to limit His Omnipotence to our restricted understanding.
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.
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).
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.)
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.”
Posted in: Jesus' Disability That Came With His Incarnation
It is no easy task to hold your disabled ill child, wondering what the next right thing is to do, how to alleviate her pain and discomfort – the plea to God ever present to see this child struggling to make sense out of what is happening, and to please, please do something. The medical people rush in and out with vials and tubes, phoning doctors, talking in medical terminology. And all you can do is pray.
The LORD’s omnipotence is without question – Revelation 22:13: “I am the Alpha and the Omega, the Beginning and the End, the First and the Last.” His omnipotence existed even before creation – John 17:5: “And now, O Father, glorify Me together with Yourself, with the glory which I had with You before the world was.”
Jesus, the Son, became human so that He “… might taste death for everyone” (Hebrews 2:9) – He fulfilled the promise made after the fall of man: “And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the Father, full of grace and truth” (John1:14). And He was obedient to the Father unto death.
In His omnipotence He did not have to do it – He does not have anything to learn. He did it out of love for mankind – Isaiah 53:5: “But He was wounded for our transgressions, He was bruised for our iniquities; the chastisement for our peace was upon Him, and by His stripes we are healed.” (John 3:16 as well).
Does the LORD see the suffering of the weak and the disabled? Hebrews 4:15 says “For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin”. Zephaniah 3:19 says “Behold, at that time I will deal with all who afflict you; I will save the lame, and gather those who were driven out; I will appoint them for praise and fame in every land where they were put to shame” (emphasis mine).
And this gives comfort to a parent with a disabled child – to know that the LORD does not value human life in financial terms and measurable achievements as the world does, but as His plan for redemption of mankind falls in place, you child will be there – with Him!
Soli Deo Gloria!
Willi & Anje
Posted in: Hidden Truths
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
Posted in: Hidden Truths
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
Posted in: Hidden Truths
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
Posted in: Hidden Truths
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
Posted in: 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
Posted in: Hidden Truths
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
Posted in: Talking to Time Magazine About Prenatal Testing and Down Syndrome
Scientific and Biblical views on the beginning of human life
Hallo Mark,
I would like to share part of a paper I wrote when doing a course on Biblical counselling. The paper was on abortion - I think it links to the question on whether abortion by choice is valid. I would like to hear any comments.
One question that is frequently asked when dealing with abortion is when does human life begin – and is it permissible to terminate a pregnancy based on man’s understanding? Scientific as well as Biblical views on this should be considered.
Scientific views
The genetic view argues that each individual is genetically unique – therefore human life begins at fertilization. If the zygote survives, it will grow into a person with his own unique set of genes. Thus life begins at fertilization. The main objection to this view is that some zygotes fail to implant into the uterus – which implies that that a zygote that fails to implant, is not human. This is not a logical argument – the occurrence of a spontaneous abortion does not imply that the lost is not fully human – anymore that a child that develops a life-threatening disease is not fully human any longer.
The implantation view argues that life begins when the blastocyst implants into the uterine lining. Implantation occurs six days after fertilization – this suggests that the zygote can only now be called human life. Implantation however, does not make the individual more human – it only makes him more likely to survive.
The embryological view says that human life begins 12 to 14 days after fertilization – as it is not possible for identical twins to develop after this. Humanness does therefore only exist when it is not possible for twins to develop any longer. This line of reasoning fails when the development of Siamese twins is considered. Siamese twins develop after the 14 day cut-off – they may share body parts and organs, but they are still distinct persons. Humanity can therefore not be defined on the fact that twins may share body parts or not.
The neurological view argues that life begins when the brain of the fetus can generate a recognizable EEG-pattern. This is usually observed at about 26 weeks into a pregnancy. It is then assumed that the fetus can engage in mental activity. A further argument is that life begins at 20 weeks of gestation. At this time the thalamus is formed in the brain – which is involved in the processing of information and is part of a complex system of neural connections that play a role in consciousness. However, it is not easy to perform an EEG on the fetal brain – the developing brain displays electrical activity at different stages. It can easily be argued that any kind of brain activity can signify human life.
The ecological view says that the fetus is human if it can exist outside the mother’s womb. The limiting factor is the maturity of the baby’s lungs. This presents an interesting problem – over the last century man has become human earlier and earlier due to the development of medical technology. A fetus born at 28 weeks gestation 20 years ago was considered viable – today we have the technology to support the life of a baby delivered at 24 weeks gestation. This view implies that man has the ability to ante-date life as medical technology develops.
The birthday view argues that life begins when the baby is born and the umbilical cord is cut – the short-coming is that even when a healthy baby is delivered after a 40 week pregnancy, he is still very dependant on his mother for survival.
The Biblical view
Psalm 139:13-16 “For thou hast possessed my reins: thou hast covered me in my mother’s womb. I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth. Thine eyes did not see my substance, yet being unperfected; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.” In Psalm 139 personal pronouns are used indicating that God knew the Psalmist as a person before he was born. God knew him when he was made in secret – implying that his parents were instruments in the hands of God.
Jeremiah 1:4-5 “Then the word of the LORD came to me, saying, before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations.” God tells Jeremiah that He knew him before he was born – he was set apart by the LORD and considered a person before birth.
Psalm 51:5 “Behold, I was shapen in iniquity; and in sin did my mother conceive me.” David acknowledges that he was sinful even before he was born – God knows our sinful nature when we are conceived in the womb.
Luke 1:39-44 “And Mary arose in those days, and went into the hill country with haste, into a city of Judah; and entered into the house of Zacharias, and saluted Elisabeth. And it came to pass, that, when Elisabeth heard the salutation of Mary, the babe leaped in her womb; and Elisabeth was filled with the Holy Ghost: and she spake out with a loud voice, and said, Blessed art thou among women, and blessed is the fruit of thy womb. And whence is this to me, that the mother of my Lord should come to me? For, lo, as soon as the voice of thy salutation sounded in mine ears, the babe leaped in my womb for joy.” Elisabeth calls the life in her “babe”. She says that he leaped for joy in her womb – exhibiting joy in the presence of Jesus Christ.
Galatians 1:15-16 “But when it pleased God, who separated me from my mother’s womb, and called me by his grace, to reveal his Son in me, that I might preach him among the heathen; immediately I conferred not with flesh and blood:” Paul acknowledges that God knew him as a person in his mother’s womb and that already at that time He had called him to preach the Gospel.
Judges 16:17 “That he told her all his heart, and said unto her, There hath not come a razor upon mine head; for I have been a Nazarite unto God from my mother’s womb: if I be shaven, then my strength will go from me, and I shall become weak, and be like any other man.” Samson tells Delilah of his covenant with the LORD. Although he broke the covenant, it was restored later when he repented. God intended for Samson to be a Nazarite even when he was in his mother’s womb.
Exodus 21: 22-24“If men strive, and hurt a woman with child, so that her fruit depart from her, and yet no mischief follow: he shall be surely punished, according as the woman’s husband will lay upon him; and he shall pay as the judges determine. And if any mischief follow, then thou shalt give life for life, eye for eye, tooth for tooth, hand for hand, foot for foot,” Mosaic law took particular care of looking after pregnant women. In the first instance, when a mother gives birth prematurely after being injured and the baby is not harmed, a fine is levied for causing premature birth. In the second instance, should the baby die, the penalty is life for life. The value of an unborn baby’s life is no less valuable than the life of an adult.
Conclusion - Jeremiah 13:16-17: “Give glory to the LORD your God, before he cause darkness, and before your feet stumble upon the dark mountains, and, while you look for light, he turn it into the shadow of death, and make it gross darkness. But if ye will not hear it, my soul shall weep in secret places for your pride; and mine eye shall weep sore, and run down with tears, because of the LORD’s flock is carried away captive.”
The miracle of human life belongs only to the LORD. Any human attempt to qualify life will be limited to just that – a meagre attempt to limit His Omnipotence to our restricted understanding.
God bless,
Anje
Posted in: Hidden Truths
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
Posted in: Hidden Truths
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
Posted in: Hidden Truths
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
Posted in: Hidden Truths
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