ABR update

I’ve been thrilled to read that Terrible Palsy is currently busy with ABR training in Australia. And just this morning I found a request for information from someone in Argentina on our ABR support group. Twelve of them are starting ABR in January and she was looking for stories and photos of children who have been on the ABR program.

Here is what I answered and this also serves as my update on ABR:

“First of all, it is wonderful that you are about to start ABR. I must say that when I first heard of ABR, I had this sudden surge of hope. We have been fortunate in that we haven’t tried many therapies before ABR, so we were a bit more, I think innocent would be the correct word, and inclined to believe that it could work. I know other parents have gone through therapies that brought them great hope, but little results. Somebody said to me that she got so tired of people trying to sell her hope….Until she found ABR.

Yet, we also had our moments, especially before we started to see results, when we thought that it is too good to be true. Then it is really great to have a support group like this.

Our son is a year this coming Sunday and has dystonic CP due to HIE Grade III. His breathing has been very bad and together with the constant presence of mucus made him prone to chest infections. His arms are a lot more affected than his legs and could be described as spastic, he is unable to roll, sit or use his hands. He cannot swallow or suck effectively. His face muscles are very badly affected, so he cannot smile or blink or show any emotion but surprise. He is able to focus, but we aren’t yet sure what he sees. He seems to be able to hear.

We started ABR when he was six months old, but the first few months we rarely did the required three hours a day and quite often much less.

After our August ABR assessment and training, we really got cracking. We realized that L was just going to deteriorate further in terms of health and structure unless we do something radical. So, we committed ourselves to five hours and more per day. Most days we manage seven hours, but we are only able to do so because of L’s very committed caregiver, Anna Zondi. And I must emphasize that we had to do more than the usual number of hours a day because L’s health was so very bad.

We’ve done approximately 600 hours of ABR now. The biggest improvement so far has been L’s breathing. He has gone from not using his chest muscles for breathing to using them much more than his abdominal muscles. Even when he is sick, the difference is noticeable. And it is not just us, but also the Occupational Therapist and family and friends that notice this. A friend said that he seems much more “comfortable in his body.” His chest had expanded in volume. L’s head has grown in circumference – initially with a full centimeter the first month of doing ABR. Now the growth has slowed down and I see more of a change in the shape of his forehead which seems to be expanding and rounding out. Photos taken earlier this year, shows how much more closed his mouth is now.

The other functional changes so far has been increased movement in his arms and his hands going from closed fists to half-open. From time to time he will make a reaching movement towards a nice toy or my long hair. He used to hyper-extend a lot. So bad that he could not sit in an upright position – even with support – at all. In the last six weeks this has diminished so much that I’m able to hold him on my lap, sitting upright, just supporting his neck. This has lead to improvement in his ability to focus. I can even see his eyes making small tracking movements. He seems to turn his head toward sounds much more too. He is starting to frown slightly when he is upset.

I have even greater hope for improvement now than I had when we first started ABR and I realize that there are people in this group and out there whose stories will just increase your motivation to start ABR a hundredfold.

Everything of the best!”

I can just add that I used to get very annoyed when people started mentioning structural changes – an increase in volume of chest, or deeper armpits or a rounder forehead etc. I’d think: “Come on, get to the good stuff! I want to know about sitting and crawling and walking…” Impatient as ever!

But I’ve come to realize that functional changes just won’t happen before the structure is changed. And this is the limitation of some of the existing therapies we have used for L. I’m not knocking them, please understand! They can achieve a lot. That is why we still use them.

But our kids are not moving as they should because they have structural limitations. Arms that don’t fit into their sockets correctly, don’t have the range of motion they should have. Legs that don’t have the right angles to the body, won’t be able to carry the child and will get stiffer and stiffer. And the problems with limbs point to problems (usually weakness and lack of volume)with the core body – the trunk. Until you fix this, you are only going to achieve limited movement – movement as far as the limited structure of the child’s body allows. And I know of no other therapy that actually transforms the volume and structure of the inner muscles of the body, the muscles that cannot be exercised, and don’t trigger the spastic muscles on the surface.

So, now I too talk with great enthuisiasm about my child’s deeper armpits, knowing they are signs of something bigger. And that something, is called hope.

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Our story

How to write this?

A homebirth, unassisted because there was no medical support for a VBAC at home with a baby bigger than 3.5kg.

A little boy born after an uneventful 7 hour labour.

Not breathing.

We don’t know why. Nothing was wrong, nothing was out of the ordinary. The paed thought he’d probably inhaled amniotic fluid. Something that can happen even at elective C- Sections. Had we not panicked, we might have been able to get him breathing. As it was, we got in the car and rushed to hospital. It took too long – we hit peak traffic. And though he was resuscitated, he was without oxygen for a long time. Too long. He was taken to NICU – very ill.

I started bleeding from tears high up in my vagina. The nurses were angry, they were rough and they were abusive. I allowed them, because I thought I deserved it. Only at 16:00 did I receive proper medical care. By that time, I’d lost enough blood to warrant a blood transfusion.

I pleaded with them to take me to L. The paed said to get better myself first. Maybe she thought I wouldn’t get attached to him. Maybe she thought it would be easier on me this way when he died. Because she didn’t think for one minute he would survive. Fortunately she was wrong. He did survive… and I? How could I not love him?

Harsh words were spoken. Things were said that will stay ingrained on my soul for the rest of my life. As they were meant to be by the people who spoke them.

He ended up staying in hospital for 35 long days. After a week, he was taken off the ventilator. He fought for breath for a day – and won. A few days thereafter, he started opening his eyes. I sat by his bed, my eyes averted, just focusing on him. Praying and touching his head and feet. After a while I could hold him. And I did. He felt like a ragdoll, but he was alive and he was mine. I became part of the furniture. I would go home, look after M, pump milk, go back to the hospital. Fall into bed, sleep dark and dreamless and wake up knowing something was dreadfully wrong, but couldn’t remember what it was. And then it would hit me… An endless routine.

At first, remorse nearly killed me. But I soon realized that I had two kids, a husband, wonderful parents and a sister and friends who stood by me. I had to carry on. There was no alternative, really…

So I carried on. God helped me. He sent people across my path that said the right words and kept me upright at the time I needed it most. And I chose LIFE. Not just for myself, but for our whole family, particularly L.

It is almost a year later. It is time to share this with you.

Why haven’t I shared our story on this blog, yet?
I was scared. I’m still scared.

Some of my..our bruises have barely healed and others never will.
But here it is. Here is our story.

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Cast the first stone… if you dare.

This past week in the South African news was a man who had left his son – totally absentmindedly and accidentally – in his car at work. He’d gone back to fetch a book at home and his wife asked him to drop his 17 month old son off at daycare. He landed in bad traffic and missed the turnoff. His son had fallen asleep and he simply got out at work and left him in the springtime heat. By the time his wife realized the little boy never ended up where he should have been, it was too late.

Yesterday, with the story front page news, I listened to somebody expressing horror and questioning how it is possible, implying that the father somehow didn’t love his child.

I just thought that the person who has never made a mistake concerning the upbringing or care of a child probably doesn’t have kids! The fact that the majority of us never end up with a dead child as the result of our mistakes, is pure grace.

This is a tragedy. No more, no less. Children aren’t supposed to be left in cars, aren’t supposed to drown in swimming pools, aren’t supposed to die in motorvehicle accidents. A child’s death is against the order of the universe. But when that happens, we need to hug our own kids even closer. There is no place for recriminations. Never say: “I would never”. Because you have no idea what is in your future.

I wish I could embrace that family and shut their ears against the comments that are being made and even the comments they imagine being made.

The worst thing in this world is remorse.

I can imagine only too well this father’s pain. Also the pain of the mother who answered the telephone and found her toddler drifting face downwards in the pool a mere 10 minutes later. The father who reversed his car without looking. The mother who left the cleaning agent within the reach of inquisitive little hands. The mother who chose an unassisted homebirth and whose baby almost died, ending up brain damaged.

There is a moment in time that the parent partly or wholly to blame for a child’s injury or death keep revisiting. It is the place where the course of a child’s future could have been different, if only…

But going back there is pointless. You cannot change a single thing. You can only go forward, step by step. Careful not to fall and not to drop the precious and fragile gems in your arms. Maybe later on, you’ll walk with greater ease. Knowing that Someone is walking right beside you and is ready to catch you should you stumble.

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Tuning in…shhhh!

So I start a new blog in my mother tongue. I’m tired of the endless e-mail list with the newsletter that I send out weekly. And, to be truthful, even though my family and friends urge me to write to them, I feel a little uncomfortable dumping my intimate thoughts and feelings into somebody else’s inbox – almost leaving them with no choice whether they want to read it or not. I mean, even when I can see something is pure spam, I sometimes read it. A mean little voice keeps on whispering in my ear that they just read because I’m forcing it onto them.

The new blog seems to be a success. I’m much more comfortable writing in my mother tongue than writing in English. The great faceless Internet seems hungry for Afrikaans blogs. I get more hits in a week than I’ve had in all the months I’ve been writing here. And people seem to be coming back too.

Yet, when I mail my e-mail group with the news and a link to the blog, they are, with two exceptions resolutely quiet. One male friend answers back:

“So, you have a blog? Does this mean I have to remember to go and check your blog when I want news of you guys? Remember that some of us are rather too busy to read blogs. Besides, I feel about blogs the way I feel about people phoning in to a talkshow. I switch my radio off. Listening to the opinion of every uninformed tom dick and harry is just not my thing”

And then he adds:
“Not that I consider you uninformed. I appreciate what you are trying to do with your blog. But know that I’m going to watch you. If you start talking nonsense, I’ll be the first to tell you. Or even better. Start a blog of my own.”

There are of course a few fatal flaws in his line of thinking. But he has a point.

This got me thinking. Always a dangerous thing.

Why would somebody read the opinions of just another ordinary woman? Why am I, for instance, so addicted to blogs? Some of them are, admittedly, not very well written, opinionated without being researched and some blog writers are guilty of using incorrect language and sloppy spelling. (OK, so am I. But I feel you need to cut me a little slack on account of English not being my first language, okay!)

I know why I read blogs. First of all, I’m looking for a community. It was infertility, then CP that drove me to go out and look for others like me, others in the same boat. I found wonderful people. People that filled the holes in my heart and life with their words. I found information, a way of dealing with two vastly different but emotion-filled situations and the knowledge that I’m not alone.

At the same time, I found a few phenomenal writers. People whose words I’d read no matter what they are writing about. The fact that they are writing about things dear to my heart is a bonus.

So then, if that is the case, why am I writing? What am I hoping to achieve?

Of course there is the psychological release of writing your problems down. It wouldn’t matter if nobody read what I had to say. But the words have to GET OUT. I think I have saved thousands of Rands in psychologist fees by blogging. Seriously.

The fact that people are reading and responding to what I write, is even more fulfilling. Mostly these are people who know where I come from, who experience similar situations. To them, it doesn’t matter that everything I write eventually deals with L and M and my hopes and dreams for them. It doesn’t matter that my blog becomes just another “mommy blog”.

But there is even a more subtle reason for keeping on writing. And this is called introspection.

I am because I reason and feel.

And this has nothing to do with being informed. I know very informed people who lack even an ounce of human feeling and sensitivity toward others.

Lately, I absorb the news of the day mainly through osmosis – catching an item on a radio here, glimpsing a news headline there, tuning in to conversations around me. I certainly won’t be able to give you a blow-by-blow account of things happening in the world right now. My philosophies aren’t formed by great thinkers. My opinions are mostly based on emotions and can change at the drop of a hat.

But I like to tread carefully in this world full of fragile things. I like to see my thoughts in black and white on a computer screen before they cause damage. I’ve learned my lessons well.

I can tell you that my two sons have eyes the colour of a stormy sea.
Yesterday I heard my older son whisper to his brother: “Hello my baby. Hello my sweetie pie.”
And after leaving their bedroom for a moment I came back to find them face to face, locked in each others arms – fast asleep.

This is all the qualification I need to write and to be read.

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A break, please!

Most mothers are extremely aware of possible dangers to their kids. We theoretically know that our children can fall, break limbs or get sick. And we theoretically know that they can die. Yet I’m sure no mother believes that it will really happen to her child.

The mother of a child with a serious childhood disease or condition is probably in exactly the same position. Except that she knows the name of the monster that might claim her child. I don’t think accepting the possibility of death becomes any easier under these conditions.

This past week we received L’s medical records from his stay in the NICU. Both D and I started reading them compulsively. (We stopped when we realized that we were getting too upset.) On the very first page the attending nurse wrote:

“Parents don’t seem to realize the seriousness of their baby’s condition despite being counceled by Dr H. Twice.“

I can only vaguely remember how I felt. Weak with blood loss and the effects of general anaesthesia, I was wheeled to L’s bed in the NICU and lost my balance when I tried to stand. Looking at my baby, I recognized him from the moments after his birth. His one elvish ear and one ear squashed from being inside me, the shape of his head, his long graceful limbs. And yet with all the wires connected to him,it almost felt as if he didn’t belong to me. We were only allowed to touch his head or feet. No stroking for fear of triggering more seizures. I heard the doctor say: “He is very sick, but he has a lot going for him: He is big and has reserves. His heart is strong. He started breathing spontaneously.” And that is what I decided to cling to. Not the bits about him dying. Not the bits about him being possibly no more than a vegetable if he survives. I decided to trust the Lord with everything I have.

And then we faced the monster again. I remember thinking: OK, so, this is how it is going to end. And for a moment I resigned myself to the fact. But then God intervened….

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L has been sick for two weeks now. First tonsillitis, then bronchitis and on Sunday night his temp – which had remained normal through all of this – went up suddenly.

So, on Monday morning we took him to a doc which prescribed (sigh) another course of antibiotics and fever medication.

Night before last night I put a sleeping L in his cot. He hadn’t been himself all day – clearly uncomfortable and in pain. I covered him with a light blanket as it was cold and went to bath M. Both D and I checked on L a couple of times and found him soundly asleep.

When I went to put M in bed, I didn’t switch on the light for fear of waking L. In the semi- dark with light from the passage shining in, his skin tone seemed dusky, but I thought it was merely the effect of the light. He seemed restless and I thought that I’d better get M to sleep quickly so that I could devote my full attention to him. I settled M and lay down next to him (a prerequisite for going to sleep!). I heard L cry out in his sleep and heard him struggle for breath. Shame, boor baby’s got a blocked nose, I thought and waited for him to settle into a better position for breathing. When it didn’t happen and his breathing remained “odd”, I jumped up, picked him up and moved into the passage.

What I saw, made me nearly keel over with shock. He was tongue was blue, his hands and face mottled. And he clearly was seizing. I sprinted to the suction pump as I thought his airway may be blocked. I had the familiar sinking feeling. OK, so this is how I’m going to lose him. I acknowledged the monster. And then my instinct kicked in and the mother animal started growling: No. I’m not letting him go without a fight. I prayed aloud: “Oh Lord, please help my child.” I realized that I couldn’t get any mucus out and decided to do CPR. My first attempts at CPR were clumsy as I tried to remember the steps, but then I got into a rhythm.

In between CPR, patting his back and trying to suction any blockage from his airway, I shouted to D to come and help me. He gave L one look and pressed our alarm panic buttons. He phoned the ambulance and the next-door neighbours. Having never done CPR, I wasn’t sure I was doing it right. I asked D to check if L’s chest was rising. He said it was. His colour started looking better with the extra oxygen I blew into his lungs. The alarm company sent people out, but they had no medical experience. Our neighbour, Laura came rushing in. She has some nursing experience and reassured me that L seemed to be breathing but that he clearly still was seizing. I felt him and he was hot. Laura wet a terry nappy and we wound it round his head. After what felt like hours, but probably was no more than 5 minutes, he stopped seizing and relaxed against my chest, his colour normal again. He protested at the cold of the wet nappy and fell asleep against me. I checked his temperature and it was high. So I inserted a suppository for fever. The ambulance still hadn’t arrived. When D phoned, they hadn’t even left their base. So we drove to the ER, leaving a very upset M, “Mama. Don’t forget to put L’s hat on.” with Laura and Roger.

I described to the nurse on duty what had happened. She remembered us from our previous stay in ICU and agreed that even though L seemed fine and the fact that it probably was just a febrile convulsion (albeit a long and serious one), L needed to be checked out.

Then the struggle to find a paed began. The paed we normally use (the guy charging 300% of medical aid rates)was out of town. The doctor standing in for him refused to come out. He said he was already in bed. It was 20:00. Another paed couldn’t come as she was “ on her way to Ireland”. Out last resort paed couldn’t be located. The night matron suggested we use the ER doctor ( a GP) and we agreed. He checked L, found an ear infection that wasn’t picked up before – probably the cause of the high fever and general icky feeling. He reassured us that even though the seizure was a particularly scary one compounded by the fact that L’s breathing was affected, we needn’t be too concerned. He also said that it often is a sudden rise in temperature triggering febrile convulsions rather than how high the fever is. He suggested that we admit L to the paed ward and keep him under observation for 24 hours and he agreed to take over his medical care for that period.

L spent a very peaceful night with me next to him in the paed ward. When we walked into the ward he was all: “This place seems familiar. Look at the pretty ladies! Wow, Mama, there’s a butterfly mobile attached to my cot. Look! Look! Make it turn?” No sign of anything wrong with him. And when I put him in the cot he turned his nose into the pillow, gave a sigh of contentment and fell asleep. The little stinker.. He was discharged even before the 24 hours had expired.

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Music for the end of the world

At first I didn’t understand our friend Benjamin’s shock upon learning the time of L’s birth.

9:00 on Saturday 5 November 2005.

Sure, it coincided with his (Bejamin is a pianist) performance of Messiaen’s work. I got to know some of Messiaen’s music through Benjamin and have always liked it immensely.

But now he has forwarded us Messiaen’s history and in particular the history of the piece: “Quartet for the end of time”.

A birth is always an end to an old life and the beginning of a new one.

L’s birth was an end to innocence, but a beginning to joy; an end to pride and a beginning to endurance, meekness and patience; an end to self-sufficiency and a beginning to trusting absolutely; the apocalypse of an old life, the start of a new life.

Reading this I sat in front of my computer with tears running down my cheeks. I quote parts from First Things: Music for the End of the World by Michael R. Linton.

“But I am pretty confident as to what the century’s most miraculous work is. Composed and premiered in a German prisoner-of-war camp, Olivier Messiaen’s 1941 quartet for piano, clarinet, cello, and violin is a piece of musical radiance, joy, and transcendence in the midst of squalor and misery. In other words, it’s a miracle.

I have called the work a miracle. Certainly, any masterpiece is a kind of miracle. And it can be called miraculous that Messiaen found himself imprisoned where his abilities would not only be recognized by the camp commander, but encouraged and even rewarded by a performance. But what is most miraculous about this quartet is its character. This is deeply irenic and joyous music, yet it is written in a prison camp, by a prisoner, in the middle of a war, about the end of the world. This is not the kind of work one would most likely expect under such circumstances.

This piece is entirely about the work of God and the glory of Jesus. There is no darkness here. There is no bitterness. There is no rage. Instead there is power, light, transcendence, ecstasy, and joy eternal.”

I now understand Benjamin better. And, knowing a little boy currently * imprisoned by a body that does not obey his pure spirit and courage, whose existence is a miracle to us and everyone who has taken the time to get to know him, I can only bow down to “power, light, transcendence, ecstasy and joy eternal…”

*Note: currently

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A wedding

My colleague, Tusiwe, got married this weekend. We weren’t sure that our children would be accommodated, so we arranged for a friend to look after M and for L’s regular caregiver to come in on Saturday morning.

I got up on a hot summery Saturday morning, feeling optimistic that I would be able to finish a few things around the house with the extra help. Anna was supposed to come in at 7:00. When she hadn’t arrived by 8:15, we phoned her mobile phone. She was in a taxi on her way to us, she said. 9:00 and she still wasn’t there. We phoned again. A harried-sounding Anna said she was standing in a line to withdraw money from an ATM. Her teenage son was with her and he wanted money for an outing. He’d only let her know that he needed the money while she was already on her way to work and then she had to wait for him to arrive and… you get the picture. D went to fetch her. L refused to be happy anywhere but in my arms. I got M dressed and fed one-handed. Anna arrived at 9:00. At this point I still had to get dressed and we had to drive to the opposite side of the city after dropping M off to make it in time for the wedding at 10:00….

I showered in record time, threw on a dress, put on a bit of mascara and some red lipstick (an old trick), dressed my hair in a bun and put a hat on. No time to wash and blow dry hair or for proper make-up….

At some point I consciously decided to relax. We couldn’t make the traffic go faster, we couldn’t find the venue any faster and I figured that a 10:00 wedding in African terms may be more like 11:00. I was right. When we arrived at the hall everybody was still standing outside, chatting. The wedding finally started at 11:05. The beautifully decorated hall was still only half-full. It worried me, because surely so many people not turning up means terrible wastage..?

And then I came to sense and understand the full meaning of African time. Time in African terms is…fluid. People kept on joining the proceedings – dressed immaculately. Other left only to reappear later. By the time the proceedings were finalized, three hours later, every seat in the hall was filled. There was no rush and a great sense of occasion. Everybody listened to the speeches (always too long!) and rolled their eyes, good-naturedly indicating that they were getting hungry. But they respectfully clapped hands and participated when called upon to do so. Family members and friends reunited and hugged and chatted. Little kids ran around outside. I wished I’d brought my own kids with – M would have found plenty of friends and I’m reasonably sure the occasional need to slip out and suction L in the car would not have been frowned upon. But then, it gave me the chance to hold hands with my husband for a change.

The wedding was very Western – some Zulu people marry according to Western custom as well as according to traditional Zulu custom. As far as I know, Tusiwe only had a Christian Western wedding ceremony. But I know that they had to pay “lobola” – where the groom pays for the bride (if that’s how you want to see it – the real meaning is far more subtle) in blankets, cattle, household goods and money.

Except for the printed wedding programme, everything was in Zulu. D and I understood very little of the speeches – even though the format was Western – and I felt sorry, not for the first time, that I never progressed beyond a very basic understanding of the musical Zulu language. The music was superb. There were keyboard and drums and people leading in song, but with every song there was full audience participation. The lead singer would pick up a theme and the audience would harmonise and expand on it – all the voices rich, true and perfectly rhythmic.

Tusiwe looked like a beautiful doll – her hair braided up in a crown with pearls, her crystal beaded white gown fitting like a glove and billowing out at the skirt. Her huge dark eyes sparkled with happiness. Eric, the groom, wore an embroidered cream-coloured suit. When they walked in, I had tears in my eyes.

The food was lovely and filling– chicken and a stew on rice. Vegetables and salads. Cheesecake and custard for pudding. Everthing eaten with a spoon only.

Finally, at 15:30 we excused ourselves, went to fetch M and went home so that Anna could still catch a bus to Hasa, her home town.

A magic day..