Anje Botha

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

 

                                                                                                                                

 

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

    

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

 

JOY AND SORROW

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

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

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

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

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

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

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

God bless, Anje

 

 

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

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

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

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

And that does not need any justification.

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

God bless, Anje

 

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.

   

 

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

 

  

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

 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 

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

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?

• 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.  

God bless all,

Anje

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