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."
As the father of a disabled daughter, I would like to share my family’s experiences and coping strategies in a world that measures human value in financial and economic terms.
As followers of the LORD and not of the world, we have to focus our minds on what is acceptable to Him and seek His will – Rom. 12:2 “And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God.”
When I look back at the six and a half years of Ingrid’s life on earth, I can truly say that it was worth it to walk the road of total care and absolute devotion to my daughter. During this time, we lost friends and family – who could or would not understand the world of the severely disabled. As a family, we could only seek the will of the LORD and pray for strength and perseverance – Col. 3:23 “And whatever you do, do it heartily, as to the Lord and not to men.”
I do not think a parent would willingly ask for his child to be born disabled – when this happen, you put away dreams and preconceived ideas of life and discover new wisdoms and strengths in life. 1 Peter 1:6-6 “In this you greatly rejoice, though for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perished, though it I tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ.”
I can testify that the LORD sustained us and provided for us – every step. A personal relationship with Him should take preference over everything. On this journey you sometimes have to make decisions where you cannot see a clear right or wrong (as we so much want to with our own lives as well as other’s lives). But when you stand back after a while, you see that it was the LORD’s decision and that you were a mere instrument in His hands. And this truly sets you free.
On a second level, you have a relationship with your spouse and then your children. After this come friends, community, fellow-believers. 1 John 2:15 “Do not love the world or the things in the world. If anyone loves the world, the love of the father is not in him.”
My family and I have entered a new stage in our journey – previously we were a family of whom one was severely disabled. Now we are a family of who a severely disabled daughter has passed away. And we shall still seek the will of the LORD – Heb. 12:28 “Therefore, since we are receiving a kingdom which cannot be shaken, let us have grace, by which we may serve God acceptably with reverence and godly fear.”
At the end of this journey, wherever it may take us, I want say as Paul “I have fought the good battle, I have finished the race, I have kept the faith.” 2 Tim. 4:7.
Mark 14:36 ‘And He said, “Abba, Father, all things are possible for You. Take this cup away from Me; nevertheless, not what I will, but You will.” ‘
In praying, our faith and the content of what we ask, usually features strongly. But we often overlook a crucial element – the LORD’s will.
Jesus’ prayer and subsequent arrest in the garden of Gethsemane are well-known in the gospels. From what I understand, He was troubled and deeply distressed. His soul was sorrowful and His sweat became like great drops of blood. I also believe that Jesus, the Son, was the perfect example of faith and wholly lacked in sin. He was in perfect communication with His Father and pleaded earnestly with Him in Gethsemane. And He acknowledged the will of His Father.
Form a mere human point of view, judged on faith and pleading alone and ignoring the LORD’s will, Jesus’ prayer failed. In doing this, we become completely selfish and severely limit our viewpoint and ultimate destination in life.
CS Lewis, in the movie, Shadowlands, based on his life, says: ‘I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.’
I can’t remember reading it in one of his books, but I think it is something to hold on to. Have faith in the Almighty LORD, plead our case before Him, tell Him how much it hurts and never let go of the peace His perfect will gives.
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.
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.
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.
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
As the father of a disabled daughter, I would like to share my family’s experiences and coping strategies in a world that measures human value in financial and economic terms.
As followers of the LORD and not of the world, we have to focus our minds on what is acceptable to Him and seek His will – Rom. 12:2 “And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God.”
When I look back at the six and a half years of Ingrid’s life on earth, I can truly say that it was worth it to walk the road of total care and absolute devotion to my daughter. During this time, we lost friends and family – who could or would not understand the world of the severely disabled. As a family, we could only seek the will of the LORD and pray for strength and perseverance – Col. 3:23 “And whatever you do, do it heartily, as to the Lord and not to men.”
I do not think a parent would willingly ask for his child to be born disabled – when this happen, you put away dreams and preconceived ideas of life and discover new wisdoms and strengths in life. 1 Peter 1:6-6 “In this you greatly rejoice, though for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perished, though it I tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ.”
I can testify that the LORD sustained us and provided for us – every step. A personal relationship with Him should take preference over everything. On this journey you sometimes have to make decisions where you cannot see a clear right or wrong (as we so much want to with our own lives as well as other’s lives). But when you stand back after a while, you see that it was the LORD’s decision and that you were a mere instrument in His hands. And this truly sets you free.
On a second level, you have a relationship with your spouse and then your children. After this come friends, community, fellow-believers. 1 John 2:15 “Do not love the world or the things in the world. If anyone loves the world, the love of the father is not in him.”
My family and I have entered a new stage in our journey – previously we were a family of whom one was severely disabled. Now we are a family of who a severely disabled daughter has passed away. And we shall still seek the will of the LORD – Heb. 12:28 “Therefore, since we are receiving a kingdom which cannot be shaken, let us have grace, by which we may serve God acceptably with reverence and godly fear.”
At the end of this journey, wherever it may take us, I want say as Paul “I have fought the good battle, I have finished the race, I have kept the faith.” 2 Tim. 4:7.
Soli Deo Gloria
Willie Botha
Posted in: Hidden Truths
A child who could not talk, taught me to whisper where angels fear to tread.
A child who could not walk, taught me to walk in faith.
A child who could not see, taught me to look to Eternity.
A child whose body was so fragile, she struggled to take another breath, showed more courage and strength that I would ever have.
A child whom I had to let go live in Heaven forever, showed me how to live this life.
God bless, Anje
Posted in: Hidden Truths
PRAYER
Mark 14:36 ‘And He said, “Abba, Father, all things are possible for You. Take this cup away from Me; nevertheless, not what I will, but You will.” ‘
In praying, our faith and the content of what we ask, usually features strongly. But we often overlook a crucial element – the LORD’s will.
Jesus’ prayer and subsequent arrest in the garden of Gethsemane are well-known in the gospels. From what I understand, He was troubled and deeply distressed. His soul was sorrowful and His sweat became like great drops of blood. I also believe that Jesus, the Son, was the perfect example of faith and wholly lacked in sin. He was in perfect communication with His Father and pleaded earnestly with Him in Gethsemane. And He acknowledged the will of His Father.
Form a mere human point of view, judged on faith and pleading alone and ignoring the LORD’s will, Jesus’ prayer failed. In doing this, we become completely selfish and severely limit our viewpoint and ultimate destination in life.
CS Lewis, in the movie, Shadowlands, based on his life, says: ‘I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.’
I can’t remember reading it in one of his books, but I think it is something to hold on to. Have faith in the Almighty LORD, plead our case before Him, tell Him how much it hurts and never let go of the peace His perfect will gives.
God bless,
Anje
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: 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: 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: 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