Willie & Anje Botha, parents to daughters Magdel(11 years) and Ingrid (6 years). Ingrid was born with rare chromosome translocation, complete agenesis of corpus callosum & refractory, intractable West syndrome. Lives in Pretoria, South Africa. 1 Corinthians 4:1 "Let a man so consider us, as servants of Christ, and stewards of the mysteries of God."
It is no easy task to hold your disabled ill child, wondering what the next right thing is to do, how to alleviate her pain and discomfort – the plea to God ever present to see this child struggling to make sense out of what is happening, and to please, please do something. The medical people rush in and out with vials and tubes, phoning doctors, talking in medical terminology. And all you can do is pray.
The LORD’s omnipotence is without question – Revelation 22:13: “I am the Alpha and the Omega, the Beginning and the End, the First and the Last.” His omnipotence existed even before creation – John 17:5: “And now, O Father, glorify Me together with Yourself, with the glory which I had with You before the world was.”
Jesus, the Son, became human so that He “… might taste death for everyone” (Hebrews 2:9) – He fulfilled the promise made after the fall of man: “And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the Father, full of grace and truth” (John1:14). And He was obedient to the Father unto death.
In His omnipotence He did not have to do it – He does not have anything to learn. He did it out of love for mankind – Isaiah 53:5: “But He was wounded for our transgressions, He was bruised for our iniquities; the chastisement for our peace was upon Him, and by His stripes we are healed.” (John 3:16 as well).
Does the LORD see the suffering of the weak and the disabled? Hebrews 4:15 says “For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin”. Zephaniah 3:19 says “Behold, at that time I will deal with all who afflict you; I will save the lame, and gather those who were driven out; I will appoint them for praise and fame in every land where they were put to shame” (emphasis mine).
And this gives comfort to a parent with a disabled child – to know that the LORD does not value human life in financial terms and measurable achievements as the world does, but as His plan for redemption of mankind falls in place, you child will be there – with Him!
I followed the forum on parents with children with disabilities with great interest with my wife. As Ingrid’s father I wanted to write a few words in her memory.
I know that my daughter is now free from pain and illness and that she is perfect and complete in the arms of Jesus. I also have the assurance that she is saved – Hebrews 11:7 “By faith Noah, being divinely warned of things not yet seen, moved with godly fear, prepared an ark for the saving of his household, by which he condemned the world and became heir of the righteousness which is according to faith.” Because I am a believing parent, my children are part of that bond I have in Jesus Christ. The road my wife and I walked with Ingrid for six and a half years, we walked in faith – there were difficult times, but through the grace of the LORD we endured.
During times of trails there were also tribulations – that will always stay with me. Although Ingrid was cortically blind and unable to talk, we still had word-less conversations with each other. I knew what she wanted without hearing any spoken word. Ingrid’s helpless state and her absolute dependence on us reminded me of our absolute dependence on God – Psalm 121:7-8 “The LORD shall preserve you from all evil: He shall preserve your soul. The LORD shall preserve your going out and your coming in from this time forth, and even forevermore.”
I believe that the LORD had a purpose creating Ingrid that is beyond my human understanding – Psalm 139:16 “Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them.” Although we buried her earthly, temporary body, I know that now she has a perfect, glorified body – 2 Corinthians 5:1-2 “For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we can groan, earnestly desiring to be clothed with our habitation which is from heaven.”
Unbelievers are not able to comprehend that death is only the beginning and not the end. Paul writes in Philippians 1:21 “For to me, to live is Christ, and to die is gain.” And I know that my little girl, Ingrid, completed her work on this earth and that she will live forever in the glory of the LORD.
Shakespeare, who lost a son at the age of eleven, wrote in Macbeth:
"Give sorrow words; the grief that does not speak, whispers the o'erfraught heart, and bids it break."
Six-and-a-half plus two years later on this journey we reflect on lessons learnt, decisions made, insights and sorrow that forged and changed - forever.
In the last few days before 2 March 2012, after years of relentless, around-the-clock turning, suctioning, feeding, medicating, we realised that the finish-line was in sight. Catastrophic epilepy was taking its final toll.
My beloved little girl's body was shutting down. She was so tired, and in pain, too much pain. I had to administer morphine.
On the evening of 1 March, Willie realised that it would be the last time that we would have our daily devotional as a family of four. He read Psalm 121. There were tears and pleas for grace, dignity and peace.
In the early afternoon of 2 March, as Ingrid lay in my arms, she was free from pain, convulsions and deterioration at last - a fight she fought valiantly and finished with grace. Our beloved daughter crossed her finish-line and was Home at last.
In Zechariah 8 the New Jerusalem is described - verse 4 & 5: "The LORD of Hosts says this: Old men and women will again sit along the streets of Jerusalem, each with a staff in hand because of advanced age. The streets of the city will be filled with boys and girls playing in them."
My father-in-law passed away a few years before Ingrid was born. He was a school-teacher and qualified as a preacher in the Dutch Reformed Church. He was involved in mission work in the rural communities of the Western Cape - especially after his retirement as teacher. He was a God-fearing man who dearly loved his children and grandchildren.
I know that when Ingrid completed her race, she met him for the first time and that she knew that he is her grandfather, George. And he knew that she is his grand-daughter, Ingrid. The stories they must share!
We put the last verse (8) of Psalm 121 on Ingrid's grave stone: "Die HERE sal jou uitgang en ingang bewaar, van nou af tot in ewigheid" ("The Lord will protect your coming and going both now and forever")
I know that Ingrid is safe, in heaven. That she finished her race. That she is in a better place, much better than this world could ever provide. This is not said lightly, nor meant as shallow consolation. On some days, this knowledge keeps me going forward.
When Ingrid was diagnosed, we searched for therapies and cures. We soon realised that sometimes the world of medicine is more of an art and not always an exact science. Some offered alleviation, some failed. We did not allow these successes and failures to define Ingrid. To us she will always be our beloved daughter and sister.
In a world that demands payback, obsessed with external clues of prosperity we came to know and live the opposite. We know what self-less service is. We learnt just to give - not being concerned with any kind of reward or validation from the world. This meant many sleep-less nights, cutting finances to the minimum, finding pleasure in the small things in life, many times switching to auto-pilot - getting up and going on, because the LORD asked us to. And we are the better for it.
We share a bond with other families we have met on this journey. We first hand understand and live experiences, insights, tears, joys, sorrows. And they have our highest admiration. And sometimes someone who has not walked a while on this exceptional road, offers misplaced advice - but still, we understand. Before embarking on our path, it could have been me.
We know now what Job meant when he said "I had heard rumours about You, but now my eyes have seen You" (Job 42:5). Because in this moment, when the LORD says "This is My will", you submit.
At times, we stood in awe, witnessing the plans of the LORD unfold before us. At other times, it was unbearable, helplessly watching our daughter in the grip of catastrophic epilepsy. This remains a mystery for now "... now we see indistinctly, as in a mirror ...". That part of the race, which we as parents, could not complete for Ingrid. We hold onto the hope of one day seeing "... face to face ..." (1 Cor. 13:12).
Still, we fought the good fight, we took up the full armour of God, "... having prepared everything, to take your stand" (Eph. 6:13). We finished this race, "... pusue righteousness, godliness, faith, love, endurance, and gentleness." (1 Tim. 6:11). Most of all, we kept the faith - "My grace is sufficient for you, for power is perfected in weakness ... For when I am weak, then I am strong." (2 Cor, 12:9-10).
I read Mark Stephenson’s post on Rick Warren’s opinion on the destination of the souls of the disabled as well as pets. I was not sure whether to post my thoughts here or at Mark’s post – I’ve decided to link it to what my husband and I have written under Hidden Truths.
Ecclesiastes 11:5 says “As thou knowest not what is the way of the spirit, nor how the bones do grow in the womb of her that is with child: even so thou knowest not the works of God who maketh all” (KJV)
The Jewish Study Bible’s translation of this verse reads “Just as you do not know how the lifebreath passes into the limbs within the womb of the pregnant woman, so you cannot foresee the actions of God, who causes all things to happen”
Recently I have tried to make sense out of the experience of giving birth and taking care of my disabled daughter – who lived a very temporary, short life on earth.
From Ecclesiastes I realized that my daughter’s birth was not a random event – she was divinely created by the LORD. And while still on earth I shall never fully understand God’s purpose in creating her.
Since I started reading this forum, (and took the courage to join in discussions), I have witnessed two little girls who both suffered from West syndrome reach out across oceans with a message of hope and inspiration. I have met other Christian parents with disabled children – and found comfort in their experiences.
Tennyson (quoted in a book I’m reading on the chronic sorrow that parents with disabled children experience), said:
“Once in a golden hour, I cast to earth a seed.
Up there came a flower. The people said a weed.”
Through the grace of God I have been able to see, cherish and love Ingrid as a divine creation of the LORD. (And sorry – as much as I love our family pets, I cannot see any connection with Rick Warren’s opinion.)
There are losses so profound that special words are used to describe a new state of being – when you lose a parent you are called an orphan, bereaved spouses are called widows and widowers.
In the English language (and Afrikaans), there is no term that describes the loss of a child – perhaps the loss of a child is not perceived as different from other losses.
Jacob lived 22 years in the belief that Joseph, his son, had died. When his sons returned to Canaan without Simeon, Jacob was beside himself.
Jacob uttered the Hebrew word in Genesis 42:36 that is used for a parent that has lost a child – shakhul. He said to his sons: “…You have bereaved me; Joseph is no more, Simeon is no more, and now you want to take Benjamin.”
Shakhul is simply translated as “bereaved”, not capturing its true meaning.
Shakhul is used a few times in the Bible (for example Gen. 27:45, Gen. 42:36, Gen. 43:14), and means to “be robbed of offspring”. This Hebrew term reserved for bereaved parents describes their initiation into the unenviable fellowship of shakhul.
The recognition of being shakhul does not make this journey any easier, but there is comfort: the LORD treats the loss of a child in an honest and real way – as it should be. He designates a word that describes a parent that lives with the pain of losing a child – acknowledging that the loss is unique, traumatic and heart wrenching. The pain becomes a new reality – there is no new normality.
Revelation 21:4 “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”
Someone asked me a while ago that if I had known the outcome, whether I still would have chosen knowing Ingrid.
In parenting a disabled child, I realized that joy and sorrow co-exist on the same spectrum. And I think that this is not limited to parenting only, but that in many trials in life joy and sorrow is to be found simultaneously.
Ecclesiastes 7:3 says “Sorrow is better that laughter, for by a sad countenance the heart is made better”.
I found joy in the privilege of knowing that I was part of God’s plan for Ingrid’s life and that I was able to fulfill my part and take care of Ingrid – although with limited resources on earth (and there some sadness creeps in). I found joy in seemingly small things – such as a smile, a contented sigh, the joy of taking a soothing bath. I found joy in the realization that the LORD provided financially, physically and spiritually – every step of the way. And joy in the faith that ultimately everything is in God’s hands (and that I am not able to understand everything fully) – again Ecclesiastes 11:5 “… you do not know the works of God who makes everything”.
I experienced sorrow in watching this terrible syndrome, first described by Dr. West in 1841, steal my daughter away bit by bit every day. And then - that indescribable moment when I knew that my daughter is gone from this life.
The ultimate joy is in the knowledge that we will meet again in heaven – Revelation 21:14 “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away”.
My answer to the question whether I would have chosen knowing Ingrid (with some presumption) – Yes, a million times, yes!
This week I had to endure another conversation that started with ‘I feel sorry for what happened to you, I cannot imagine what it must have been like, but …’
I listened, tried to explain some – and in the end came away with pity.
You see, I do not take care of my children to conform to the world’s view of what is right and wrong – even if it is coated with some religiosity. I did it because the LORD asked me to. And in that lies my strength.
Me and my family lived dedication, commitment and devotion every day – something the world would be better off knowing as well. I learnt the meaning of true selfless service to my child, I discovered that tenacity and patience co-exist and I loved unconditionally - without expecting any of the so-called conventional rewards. Ask any parent / caregiver of a disabled child – we can write books on self-less giving.
And that does not need any justification.
Matt 18:5 ‘Whoever receives one little child like this in My name receives Me.’
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.
Posted in: Jesus' Disability That Came With His Incarnation
It is no easy task to hold your disabled ill child, wondering what the next right thing is to do, how to alleviate her pain and discomfort – the plea to God ever present to see this child struggling to make sense out of what is happening, and to please, please do something. The medical people rush in and out with vials and tubes, phoning doctors, talking in medical terminology. And all you can do is pray.
The LORD’s omnipotence is without question – Revelation 22:13: “I am the Alpha and the Omega, the Beginning and the End, the First and the Last.” His omnipotence existed even before creation – John 17:5: “And now, O Father, glorify Me together with Yourself, with the glory which I had with You before the world was.”
Jesus, the Son, became human so that He “… might taste death for everyone” (Hebrews 2:9) – He fulfilled the promise made after the fall of man: “And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the Father, full of grace and truth” (John1:14). And He was obedient to the Father unto death.
In His omnipotence He did not have to do it – He does not have anything to learn. He did it out of love for mankind – Isaiah 53:5: “But He was wounded for our transgressions, He was bruised for our iniquities; the chastisement for our peace was upon Him, and by His stripes we are healed.” (John 3:16 as well).
Does the LORD see the suffering of the weak and the disabled? Hebrews 4:15 says “For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin”. Zephaniah 3:19 says “Behold, at that time I will deal with all who afflict you; I will save the lame, and gather those who were driven out; I will appoint them for praise and fame in every land where they were put to shame” (emphasis mine).
And this gives comfort to a parent with a disabled child – to know that the LORD does not value human life in financial terms and measurable achievements as the world does, but as His plan for redemption of mankind falls in place, you child will be there – with Him!
Soli Deo Gloria!
Willi & Anje
Posted in: Hidden Truths
Last words from a father
I followed the forum on parents with children with disabilities with great interest with my wife. As Ingrid’s father I wanted to write a few words in her memory.
I know that my daughter is now free from pain and illness and that she is perfect and complete in the arms of Jesus. I also have the assurance that she is saved – Hebrews 11:7 “By faith Noah, being divinely warned of things not yet seen, moved with godly fear, prepared an ark for the saving of his household, by which he condemned the world and became heir of the righteousness which is according to faith.” Because I am a believing parent, my children are part of that bond I have in Jesus Christ. The road my wife and I walked with Ingrid for six and a half years, we walked in faith – there were difficult times, but through the grace of the LORD we endured.
During times of trails there were also tribulations – that will always stay with me. Although Ingrid was cortically blind and unable to talk, we still had word-less conversations with each other. I knew what she wanted without hearing any spoken word. Ingrid’s helpless state and her absolute dependence on us reminded me of our absolute dependence on God – Psalm 121:7-8 “The LORD shall preserve you from all evil: He shall preserve your soul. The LORD shall preserve your going out and your coming in from this time forth, and even forevermore.”
I believe that the LORD had a purpose creating Ingrid that is beyond my human understanding – Psalm 139:16 “Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them.” Although we buried her earthly, temporary body, I know that now she has a perfect, glorified body – 2 Corinthians 5:1-2 “For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we can groan, earnestly desiring to be clothed with our habitation which is from heaven.”
Unbelievers are not able to comprehend that death is only the beginning and not the end. Paul writes in Philippians 1:21 “For to me, to live is Christ, and to die is gain.” And I know that my little girl, Ingrid, completed her work on this earth and that she will live forever in the glory of the LORD.
Soli deo Gloria!
Willie
Posted in: Hidden Truths
Six-and-a-half plus two years on ...
Shakespeare, who lost a son at the age of eleven, wrote in Macbeth:
"Give sorrow words; the grief that does not speak, whispers the o'erfraught heart, and bids it break."
Six-and-a-half plus two years later on this journey we reflect on lessons learnt, decisions made, insights and sorrow that forged and changed - forever.
In the last few days before 2 March 2012, after years of relentless, around-the-clock turning, suctioning, feeding, medicating, we realised that the finish-line was in sight. Catastrophic epilepy was taking its final toll.
My beloved little girl's body was shutting down. She was so tired, and in pain, too much pain. I had to administer morphine.
On the evening of 1 March, Willie realised that it would be the last time that we would have our daily devotional as a family of four. He read Psalm 121. There were tears and pleas for grace, dignity and peace.
In the early afternoon of 2 March, as Ingrid lay in my arms, she was free from pain, convulsions and deterioration at last - a fight she fought valiantly and finished with grace. Our beloved daughter crossed her finish-line and was Home at last.
In Zechariah 8 the New Jerusalem is described - verse 4 & 5: "The LORD of Hosts says this: Old men and women will again sit along the streets of Jerusalem, each with a staff in hand because of advanced age. The streets of the city will be filled with boys and girls playing in them."
My father-in-law passed away a few years before Ingrid was born. He was a school-teacher and qualified as a preacher in the Dutch Reformed Church. He was involved in mission work in the rural communities of the Western Cape - especially after his retirement as teacher. He was a God-fearing man who dearly loved his children and grandchildren.
I know that when Ingrid completed her race, she met him for the first time and that she knew that he is her grandfather, George. And he knew that she is his grand-daughter, Ingrid. The stories they must share!
We put the last verse (8) of Psalm 121 on Ingrid's grave stone: "Die HERE sal jou uitgang en ingang bewaar, van nou af tot in ewigheid" ("The Lord will protect your coming and going both now and forever")
I know that Ingrid is safe, in heaven. That she finished her race. That she is in a better place, much better than this world could ever provide. This is not said lightly, nor meant as shallow consolation. On some days, this knowledge keeps me going forward.
When Ingrid was diagnosed, we searched for therapies and cures. We soon realised that sometimes the world of medicine is more of an art and not always an exact science. Some offered alleviation, some failed. We did not allow these successes and failures to define Ingrid. To us she will always be our beloved daughter and sister.
In a world that demands payback, obsessed with external clues of prosperity we came to know and live the opposite. We know what self-less service is. We learnt just to give - not being concerned with any kind of reward or validation from the world. This meant many sleep-less nights, cutting finances to the minimum, finding pleasure in the small things in life, many times switching to auto-pilot - getting up and going on, because the LORD asked us to. And we are the better for it.
We share a bond with other families we have met on this journey. We first hand understand and live experiences, insights, tears, joys, sorrows. And they have our highest admiration. And sometimes someone who has not walked a while on this exceptional road, offers misplaced advice - but still, we understand. Before embarking on our path, it could have been me.
We know now what Job meant when he said "I had heard rumours about You, but now my eyes have seen You" (Job 42:5). Because in this moment, when the LORD says "This is My will", you submit.
At times, we stood in awe, witnessing the plans of the LORD unfold before us. At other times, it was unbearable, helplessly watching our daughter in the grip of catastrophic epilepsy. This remains a mystery for now "... now we see indistinctly, as in a mirror ...". That part of the race, which we as parents, could not complete for Ingrid. We hold onto the hope of one day seeing "... face to face ..." (1 Cor. 13:12).
Still, we fought the good fight, we took up the full armour of God, "... having prepared everything, to take your stand" (Eph. 6:13). We finished this race, "... pusue righteousness, godliness, faith, love, endurance, and gentleness." (1 Tim. 6:11). Most of all, we kept the faith - "My grace is sufficient for you, for power is perfected in weakness ... For when I am weak, then I am strong." (2 Cor, 12:9-10).
Soli Deo Gloria, Willie & Anje
Posted in: Hidden Truths
I read Mark Stephenson’s post on Rick Warren’s opinion on the destination of the souls of the disabled as well as pets. I was not sure whether to post my thoughts here or at Mark’s post – I’ve decided to link it to what my husband and I have written under Hidden Truths.
Ecclesiastes 11:5 says “As thou knowest not what is the way of the spirit, nor how the bones do grow in the womb of her that is with child: even so thou knowest not the works of God who maketh all” (KJV)
The Jewish Study Bible’s translation of this verse reads “Just as you do not know how the lifebreath passes into the limbs within the womb of the pregnant woman, so you cannot foresee the actions of God, who causes all things to happen”
Recently I have tried to make sense out of the experience of giving birth and taking care of my disabled daughter – who lived a very temporary, short life on earth.
From Ecclesiastes I realized that my daughter’s birth was not a random event – she was divinely created by the LORD. And while still on earth I shall never fully understand God’s purpose in creating her.
Since I started reading this forum, (and took the courage to join in discussions), I have witnessed two little girls who both suffered from West syndrome reach out across oceans with a message of hope and inspiration. I have met other Christian parents with disabled children – and found comfort in their experiences.
Tennyson (quoted in a book I’m reading on the chronic sorrow that parents with disabled children experience), said:
“Once in a golden hour, I cast to earth a seed.
Up there came a flower. The people said a weed.”
Through the grace of God I have been able to see, cherish and love Ingrid as a divine creation of the LORD. (And sorry – as much as I love our family pets, I cannot see any connection with Rick Warren’s opinion.)
God bless, Anje
Posted in: Hidden Truths
To mourn a child.
There are losses so profound that special words are used to describe a new state of being – when you lose a parent you are called an orphan, bereaved spouses are called widows and widowers.
In the English language (and Afrikaans), there is no term that describes the loss of a child – perhaps the loss of a child is not perceived as different from other losses.
Jacob lived 22 years in the belief that Joseph, his son, had died. When his sons returned to Canaan without Simeon, Jacob was beside himself.
Jacob uttered the Hebrew word in Genesis 42:36 that is used for a parent that has lost a child – shakhul. He said to his sons: “…You have bereaved me; Joseph is no more, Simeon is no more, and now you want to take Benjamin.”
Shakhul is simply translated as “bereaved”, not capturing its true meaning.
Shakhul is used a few times in the Bible (for example Gen. 27:45, Gen. 42:36, Gen. 43:14), and means to “be robbed of offspring”. This Hebrew term reserved for bereaved parents describes their initiation into the unenviable fellowship of shakhul.
The recognition of being shakhul does not make this journey any easier, but there is comfort: the LORD treats the loss of a child in an honest and real way – as it should be. He designates a word that describes a parent that lives with the pain of losing a child – acknowledging that the loss is unique, traumatic and heart wrenching. The pain becomes a new reality – there is no new normality.
Revelation 21:4 “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”
God bless, Anje
Posted in: Hidden Truths
JOY AND SORROW
Someone asked me a while ago that if I had known the outcome, whether I still would have chosen knowing Ingrid.
In parenting a disabled child, I realized that joy and sorrow co-exist on the same spectrum. And I think that this is not limited to parenting only, but that in many trials in life joy and sorrow is to be found simultaneously.
Ecclesiastes 7:3 says “Sorrow is better that laughter, for by a sad countenance the heart is made better”.
I found joy in the privilege of knowing that I was part of God’s plan for Ingrid’s life and that I was able to fulfill my part and take care of Ingrid – although with limited resources on earth (and there some sadness creeps in). I found joy in seemingly small things – such as a smile, a contented sigh, the joy of taking a soothing bath. I found joy in the realization that the LORD provided financially, physically and spiritually – every step of the way. And joy in the faith that ultimately everything is in God’s hands (and that I am not able to understand everything fully) – again Ecclesiastes 11:5 “… you do not know the works of God who makes everything”.
I experienced sorrow in watching this terrible syndrome, first described by Dr. West in 1841, steal my daughter away bit by bit every day. And then - that indescribable moment when I knew that my daughter is gone from this life.
The ultimate joy is in the knowledge that we will meet again in heaven – Revelation 21:14 “And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away”.
My answer to the question whether I would have chosen knowing Ingrid (with some presumption) – Yes, a million times, yes!
God bless, Anje
Posted in: Hidden Truths
This week I had to endure another conversation that started with ‘I feel sorry for what happened to you, I cannot imagine what it must have been like, but …’
I listened, tried to explain some – and in the end came away with pity.
You see, I do not take care of my children to conform to the world’s view of what is right and wrong – even if it is coated with some religiosity. I did it because the LORD asked me to. And in that lies my strength.
Me and my family lived dedication, commitment and devotion every day – something the world would be better off knowing as well. I learnt the meaning of true selfless service to my child, I discovered that tenacity and patience co-exist and I loved unconditionally - without expecting any of the so-called conventional rewards. Ask any parent / caregiver of a disabled child – we can write books on self-less giving.
And that does not need any justification.
Matt 18:5 ‘Whoever receives one little child like this in My name receives Me.’
God bless, Anje
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