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."
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.
My name is Anje - married to Willie Botha. We are the parents of Magdel (11 years) and Ingrid (6 years). We live in Pretoria, South Africa.
We found the web-site through the Pot family blog and would like to share our family's story.
Magdel is attending grade 5 at a Christian school and doing well. Ingrid was born with a rare chromosome translocation (9 to 17 - I can't remember the break-points any more - will have to look it up), agenesis of the corpus callosum and refractory, intractable West syndrome. She is cortically blind, hypotonic, has no speech and is at age 6 years developmentally like a 3 month old baby.
After finally hearing Ingrid's shattering diagnosis and prognosis at age 5 months, we entered a whole new world of parenting a severely disabled child with a poor prognosis.
My husband used the analogy of the LORD telling Abraham to take his only son and go to Moriah - Abraham obeyed and went there in faith. So we too, have to walk this road in faith.
On our journey we have lost friends and some family members too. We have had to deal with various comments and platitudes in waiting rooms, at church, hospitals, work-places - some of these were well-intentioned, some thoughtless, some cruel and some were kind.
We have learnt to cope with very little sleep and various medical equipment. We have done quite a bit of research on our own and have found creative ways of administering medication and nourishing and stimulating a disabled child. We have learnt to attach the correct meaning to various gestures, movements and uttered sounds. We have also learnt that seemingly small and routine acts (such as having a bath) can calm an agitated child and sooth a feverish body. Vanilla flavoured custard is the best food invented.
We had (and still have) many questions and few answers - but we have learnt to wait upon the LORD and to hold onto 1 Corinthians 4:1 "Let a man so consider us, as servants of Christ and stewards of the mysteries of God."
We have gained a new understanding when parents utter the words "We have a disabled child." And we offer our highest admiration to them.
Thank you for your kind words. I read several blogs in the past and was very thankful to come across this one.
I read some of the discussion forums and I think the "Why" question is one that is difficult for parents with a disabled child to deal with - it still comes up for me at times.
Illness, pain and disability is part of the sinful world we live in - Rom 5: 12 "Therefore, just as through one man sin entered the world, and death through sin, and thus death spread to all men, because all sinned-".
The difficult part for a parent is when he is faced with the question "Why my child?" And to live and experience their child's suffering and struggles in this world.
I think this has to do with our expectations when we decide to have children - I wanted a child that will have an A-average at school one day and eventually become a rocket-scientist (or something else on the same line). It is easy to be thankful for that.
When faced with the sorrowful reality of having a severely disabled child and all the crushed expectations that goes with it, we want to blame someone - ourselves, the doctor, God.
Until I realised that this child too, is a creation of God - John 9:3 "... Neither this man nor his parents sinned, but that the works of God should be revealed in him." And I realised that I cannot begin to comprehend the omnipotence of God - Isaiah 55:8&9 " For My thoughts are not your thoughts, nor are your ways My ways, says the LORD. For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts."
As Job said "Shall we indeed accept good from God, and shall we not accept adversity?" (Job 2:10) Then I was humbled and thankful to be a "steward of the mysteries of God".
I have ordered Ian Brown's book from overseas - it is not available in South Africa - can't wait to read it.
My husband and I also take turns to go to church - Ingrid's hyper-excitability and epilepsy make it difficult - but we still find comfort in church. Some of the best times we catch up and plan is at 3 o'clock in the morning over a cup of tea.
Oh yes - the custard. A store in South Africa (Woolworths) sells vanilla custard made with fresh cream amongst other things - on a bad day this is the only food that Ingrid tolerates with her Pediasure. She only drinks vanilla-flavoured Pediasure (you waste money on the other flavours). My husband says that chocolate is also a favourite (that like she gets from me).
God bless - you and your family are in our prayers,
I am familiar with the works of John Piper. I have just finished a course on Biblical Counselling - was presented by ministers that have trained and worked with Jay Adams and John MacArthur. We used books of John Piper during the course. One of the women I met there (Anna form Sweden), recommended a book by John Piper on Ruth and Naomi - 'A Sweet and Bitter Providence". I have always thought that the book of Ruth deals with losses to a certain extent and was interested to read it. My husband was able to get hold of a copy - and this book really speaks to me!
I really did not think that the book will have anything related to disabled children in it - but in the book is a humbling and touching testimony of John Knight (who works at Desiring God) - who also has a disabled son.
God really works in mysterious ways - I will definitely have a look at John Piper's sermon.
I could gather from information on the internet that 'The Boy in the Moon' was not written from a Christian perspective - but I still thought that it might give insight to his experience as a father. Thank you for the caution, Sara - I will also read more of Vanier.
I hope that the meeting with Janneke's medical team were fruitful - you are in our prayers.
Bev, if possible, I would like to get more info on the Bible study that you have done (my husband and I like to read on disability - especially from a Christian perspective).
It is humbling to realise that there are Christian parents from all over that are experiencing the same trials and joys with their children.
A while ago I came across a piece on the internet that was written to mothers with disabled children - for me it speaks about a lot of issues that parents with disabled children deal with - whether the disability is mental or physical.
I would like to share it with you.
For Special mothers
My friend was expecting her first child. People keep asking her what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it is a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire class. Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more.
Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
Most of those mothers can remember the time, the place, the shoes they were wearing and the colour of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.
Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing: it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony.
Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.
Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.
How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.
I wonder how you endure the clichés and the platitudes, well-intentioned souls that explain how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like this one: saluting you, painting you as hero and saint, when you know that you are ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling: “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please let me do it for you.
From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.
You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law.
You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
A while ago I related to my husband a – although well-intentioned, but still, thoughtless comment I received regarding parenting a severely handicapped child.
Willie listened to me and then asked me what my reactions would have been towards a parent with a disabled child before Ingrid was born. And that got me thinking.
To be honest, my reaction would have been that I’m sorry about your child – but I would have been thankful that it was not my child. More or less the same attitude that triggered my complaints.
Every now and then I return to the passage in John 9 on the man that was born blind – I think any parent with a disabled child is familiar with this passage. I remember a few people quoting this passage after Ingrid’s diagnosis.
Initially I did not grasp the enormous truths in the passage. The question that struck me was that who the audience was that Jesus addressed when He said in verse 3-5 “Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him. I must work the works of him that sent me, while it is day: the night cometh, when no man can work. As long as I am in the world, I am the light of the world.”
He was addressing His disciples – possibly the twelve apostles and those who followed Him. The blind man was also there – Jesus subsequently healed him. But his parents are only mentioned later in the passage (verse 18-22). Jesus was speaking directly to His followers – and not to the blind man’s parents.
What did I learn from this?
I am a follower of Jesus Christ – striving to be more and more like Him in this life, but still with a sinful nature
Taking care of a handicapped child has given me vast new insights into parenting – I can now say to other parents with handicapped children that they have my highest admiration
Having a handicapped child does not grant me special privileges or a front-row seat in heaven. I have to submit to the will of the LORD – only then will His kingdom come and be witness to His glory and power.
I agree that with advancements in medical research we become both hopeful and worried.
With infertility treatment, many couples can now have a family and raise children. Many diseases can be diagnosed and treated.
However, these advancements are not purely clinical procedures that result in disease-free outcomes. We also move into the realm of ethics and moral decisions – that ultimately has to be accountable before the LORD.
Originally the world was created “very good” (Gen 1:31). Because of Adam and Eve’s disobedience, God cursed the world – bringing death and decay into it (Gen 3:17, Rom 5:12, Rom 8:22). Adam and Eve did not carry accumulated genetic mistakes. As genes passed from generation to generation, the imperfect copying process in a sin-cursed world resulted in errors, illness and disabilities.
There are several examples of how mankind attempted to eradicate these errors. One of the most chilling examples was Hitler’s Lebensborn / Fountain of Life programme in 1935-1945 where he attempted to create a super-race of Nazi-elite. Some of the survivors of the programme met in 2006 – confronting their past lives of horror, shame and abuse.
In 1926, Stalin gave orders to create “super warriors” – “an invincible human being, insensitive to pain, resistant and indifferent about the quality of food they eat”. Ilya Ivanovich Ivanov (his leading scientist) failed dismally in his experimentation in West-Africa.
A married couple approached an infertility clinic. The husband was not able to have biological children of his own. The wife was able to conceive and have children. They wanted the wife to be inseminated with her father-in-law’s sperm to preserve the family-genes. The clinic refused on moral grounds. However, a private medical team carried out the procedure later.
In the USA in 2012 a surrogate mother refused to abort a baby with congenital defects despite tremendous pressure form the biological parents and their lawyers. The little girl was later adopted by another family.
Our daughter, Ingrid, was born in 2005 with a rare chromosome translocation. According to medical reports at the time, this should not have had an impact on her abilities or development as it was “complete”. After her birth, we were confronted with a radically different picture: agenesis of the corpus callosum, West syndrome, catastrophic epilepsy, profoundly disabled, cortically blind … and the list went on.
I am not blaming medical science here – because we soon realised that medicine is more of an art than an exact science. And that some decisions are based on human judgment – that leaves room for errors. We also learnt that some illnesses cannot be conquered and that we had to undertake a journey in faith with an exceptional child.
I know now that my child does not need to have blue eyes, blond hair, with three gold Olympic medals around her neck receiving a degree in rocket science for me to be judged as a good father. I work 12-hour shifts – I remember Ingrid staying awake until 20h00 during my day-shifts (despite my wife’s best attempts to put her to sleep). When I got home, I picked her up, she would give a soft sigh, snuggle against my chest and fall asleep. In her way, I knew she said: “I love you daddy and I feel safe with you”.
Medical and biological research can become a minefield if we do not take moral and ethical issues into consideration. Mankind once believed that “ … you will be like God …” (Gen 3:5) – and we failed because we do not have the nature nor the knowledge to deal with it.
This leaves us with the final realisation that what we know is limited, that we will be held accountable and that all glory belongs to the LORD.
Psalm 139: 13-14 “For You formed my inward parts: You covered my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvellous are Your works, and that my soul knows very well”.
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: Disability Support Groups: Introductions
Hallo,
My name is Anje - married to Willie Botha. We are the parents of Magdel (11 years) and Ingrid (6 years). We live in Pretoria, South Africa.
We found the web-site through the Pot family blog and would like to share our family's story.
Magdel is attending grade 5 at a Christian school and doing well. Ingrid was born with a rare chromosome translocation (9 to 17 - I can't remember the break-points any more - will have to look it up), agenesis of the corpus callosum and refractory, intractable West syndrome. She is cortically blind, hypotonic, has no speech and is at age 6 years developmentally like a 3 month old baby.
After finally hearing Ingrid's shattering diagnosis and prognosis at age 5 months, we entered a whole new world of parenting a severely disabled child with a poor prognosis.
My husband used the analogy of the LORD telling Abraham to take his only son and go to Moriah - Abraham obeyed and went there in faith. So we too, have to walk this road in faith.
On our journey we have lost friends and some family members too. We have had to deal with various comments and platitudes in waiting rooms, at church, hospitals, work-places - some of these were well-intentioned, some thoughtless, some cruel and some were kind.
We have learnt to cope with very little sleep and various medical equipment. We have done quite a bit of research on our own and have found creative ways of administering medication and nourishing and stimulating a disabled child. We have learnt to attach the correct meaning to various gestures, movements and uttered sounds. We have also learnt that seemingly small and routine acts (such as having a bath) can calm an agitated child and sooth a feverish body. Vanilla flavoured custard is the best food invented.
We had (and still have) many questions and few answers - but we have learnt to wait upon the LORD and to hold onto 1 Corinthians 4:1 "Let a man so consider us, as servants of Christ and stewards of the mysteries of God."
We have gained a new understanding when parents utter the words "We have a disabled child." And we offer our highest admiration to them.
We would like to hear from you.
Anje.
Posted in: Disability Support Groups: Introductions
Hallo Sara,
Thank you for your kind words. I read several blogs in the past and was very thankful to come across this one.
I read some of the discussion forums and I think the "Why" question is one that is difficult for parents with a disabled child to deal with - it still comes up for me at times.
Illness, pain and disability is part of the sinful world we live in - Rom 5: 12 "Therefore, just as through one man sin entered the world, and death through sin, and thus death spread to all men, because all sinned-".
The difficult part for a parent is when he is faced with the question "Why my child?" And to live and experience their child's suffering and struggles in this world.
I think this has to do with our expectations when we decide to have children - I wanted a child that will have an A-average at school one day and eventually become a rocket-scientist (or something else on the same line). It is easy to be thankful for that.
When faced with the sorrowful reality of having a severely disabled child and all the crushed expectations that goes with it, we want to blame someone - ourselves, the doctor, God.
Until I realised that this child too, is a creation of God - John 9:3 "... Neither this man nor his parents sinned, but that the works of God should be revealed in him." And I realised that I cannot begin to comprehend the omnipotence of God - Isaiah 55:8&9 " For My thoughts are not your thoughts, nor are your ways My ways, says the LORD. For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts."
As Job said "Shall we indeed accept good from God, and shall we not accept adversity?" (Job 2:10) Then I was humbled and thankful to be a "steward of the mysteries of God".
I have ordered Ian Brown's book from overseas - it is not available in South Africa - can't wait to read it.
My husband and I also take turns to go to church - Ingrid's hyper-excitability and epilepsy make it difficult - but we still find comfort in church. Some of the best times we catch up and plan is at 3 o'clock in the morning over a cup of tea.
Oh yes - the custard. A store in South Africa (Woolworths) sells vanilla custard made with fresh cream amongst other things - on a bad day this is the only food that Ingrid tolerates with her Pediasure. She only drinks vanilla-flavoured Pediasure (you waste money on the other flavours). My husband says that chocolate is also a favourite (that like she gets from me).
God bless - you and your family are in our prayers,
Anje
Posted in: Disability Support Groups: Introductions
Hallo Sara & Mark,
Thank you for inspiring words.
I am familiar with the works of John Piper. I have just finished a course on Biblical Counselling - was presented by ministers that have trained and worked with Jay Adams and John MacArthur. We used books of John Piper during the course. One of the women I met there (Anna form Sweden), recommended a book by John Piper on Ruth and Naomi - 'A Sweet and Bitter Providence". I have always thought that the book of Ruth deals with losses to a certain extent and was interested to read it. My husband was able to get hold of a copy - and this book really speaks to me!
I really did not think that the book will have anything related to disabled children in it - but in the book is a humbling and touching testimony of John Knight (who works at Desiring God) - who also has a disabled son.
God really works in mysterious ways - I will definitely have a look at John Piper's sermon.
I could gather from information on the internet that 'The Boy in the Moon' was not written from a Christian perspective - but I still thought that it might give insight to his experience as a father. Thank you for the caution, Sara - I will also read more of Vanier.
I hope that the meeting with Janneke's medical team were fruitful - you are in our prayers.
God bless,
Anje
Posted in: Disability Support Groups: Introductions
Hallo Bev (and everyone else),
Thank you for your support & encouragement.
Bev, if possible, I would like to get more info on the Bible study that you have done (my husband and I like to read on disability - especially from a Christian perspective).
It is humbling to realise that there are Christian parents from all over that are experiencing the same trials and joys with their children.
A while ago I came across a piece on the internet that was written to mothers with disabled children - for me it speaks about a lot of issues that parents with disabled children deal with - whether the disability is mental or physical.
I would like to share it with you.
For Special mothers
My friend was expecting her first child. People keep asking her what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it is a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire class. Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more.
Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.
Most of those mothers can remember the time, the place, the shoes they were wearing and the colour of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.
Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing: it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony.
Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.
Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.
How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.
I wonder how you endure the clichés and the platitudes, well-intentioned souls that explain how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like this one: saluting you, painting you as hero and saint, when you know that you are ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling: “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please let me do it for you.
From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.
You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law.
You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
By Lori Borgman, May 12, 2002
God bless all,
Anje
Posted in: Disability Support Groups: Introductions
Hallo Bev,
Thank you - will definitely get hold of your book.
I think it was Elisabeth Elliot that said in times of adversity you have to get up and do the next right thing.
God bless all, Anje
Posted in: Disability Support Groups: Introductions
John 9:1-5
A while ago I related to my husband a – although well-intentioned, but still, thoughtless comment I received regarding parenting a severely handicapped child.
Willie listened to me and then asked me what my reactions would have been towards a parent with a disabled child before Ingrid was born. And that got me thinking.
To be honest, my reaction would have been that I’m sorry about your child – but I would have been thankful that it was not my child. More or less the same attitude that triggered my complaints.
Every now and then I return to the passage in John 9 on the man that was born blind – I think any parent with a disabled child is familiar with this passage. I remember a few people quoting this passage after Ingrid’s diagnosis.
Initially I did not grasp the enormous truths in the passage. The question that struck me was that who the audience was that Jesus addressed when He said in verse 3-5 “Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him. I must work the works of him that sent me, while it is day: the night cometh, when no man can work. As long as I am in the world, I am the light of the world.”
He was addressing His disciples – possibly the twelve apostles and those who followed Him. The blind man was also there – Jesus subsequently healed him. But his parents are only mentioned later in the passage (verse 18-22). Jesus was speaking directly to His followers – and not to the blind man’s parents.
What did I learn from this?
God bless all,
Anje
Posted in: How Much Would You Change You?
I agree that with advancements in medical research we become both hopeful and worried.
With infertility treatment, many couples can now have a family and raise children. Many diseases can be diagnosed and treated.
However, these advancements are not purely clinical procedures that result in disease-free outcomes. We also move into the realm of ethics and moral decisions – that ultimately has to be accountable before the LORD.
Originally the world was created “very good” (Gen 1:31). Because of Adam and Eve’s disobedience, God cursed the world – bringing death and decay into it (Gen 3:17, Rom 5:12, Rom 8:22). Adam and Eve did not carry accumulated genetic mistakes. As genes passed from generation to generation, the imperfect copying process in a sin-cursed world resulted in errors, illness and disabilities.
There are several examples of how mankind attempted to eradicate these errors. One of the most chilling examples was Hitler’s Lebensborn / Fountain of Life programme in 1935-1945 where he attempted to create a super-race of Nazi-elite. Some of the survivors of the programme met in 2006 – confronting their past lives of horror, shame and abuse.
In 1926, Stalin gave orders to create “super warriors” – “an invincible human being, insensitive to pain, resistant and indifferent about the quality of food they eat”. Ilya Ivanovich Ivanov (his leading scientist) failed dismally in his experimentation in West-Africa.
A married couple approached an infertility clinic. The husband was not able to have biological children of his own. The wife was able to conceive and have children. They wanted the wife to be inseminated with her father-in-law’s sperm to preserve the family-genes. The clinic refused on moral grounds. However, a private medical team carried out the procedure later.
In the USA in 2012 a surrogate mother refused to abort a baby with congenital defects despite tremendous pressure form the biological parents and their lawyers. The little girl was later adopted by another family.
Our daughter, Ingrid, was born in 2005 with a rare chromosome translocation. According to medical reports at the time, this should not have had an impact on her abilities or development as it was “complete”. After her birth, we were confronted with a radically different picture: agenesis of the corpus callosum, West syndrome, catastrophic epilepsy, profoundly disabled, cortically blind … and the list went on.
I am not blaming medical science here – because we soon realised that medicine is more of an art than an exact science. And that some decisions are based on human judgment – that leaves room for errors. We also learnt that some illnesses cannot be conquered and that we had to undertake a journey in faith with an exceptional child.
I know now that my child does not need to have blue eyes, blond hair, with three gold Olympic medals around her neck receiving a degree in rocket science for me to be judged as a good father. I work 12-hour shifts – I remember Ingrid staying awake until 20h00 during my day-shifts (despite my wife’s best attempts to put her to sleep). When I got home, I picked her up, she would give a soft sigh, snuggle against my chest and fall asleep. In her way, I knew she said: “I love you daddy and I feel safe with you”.
Medical and biological research can become a minefield if we do not take moral and ethical issues into consideration. Mankind once believed that “ … you will be like God …” (Gen 3:5) – and we failed because we do not have the nature nor the knowledge to deal with it.
This leaves us with the final realisation that what we know is limited, that we will be held accountable and that all glory belongs to the LORD.
Psalm 139: 13-14 “For You formed my inward parts: You covered my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvellous are Your works, and that my soul knows very well”.
Soli Deo Gloria,
Willie Botha