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Adjusted expectations
This time last year, a friend phoned to say that he would be in town at the beginning of May and to ask if he could stay over with us. As a confirmed bachelor he does not relate to children at all. I answered that he would be welcome, but warned that he would have to contend with a six-month-old and a two-year-old. My mental picture was of messy mealtimes, teething problems at night! laughter and gurgling. I thought I knew what to expect and I was looking forward to it.

The reality has been a constant adjustment in expectations. But then, sometimes I am surprised so pleasantly.

At the OT session on Wednesday L looked like an elderly gentleman about to fall asleep in his soup. Shelley (the occupational therapist) sat on the floor with him on her lap. She was trying to show us how to go through the normal range of motions of sitting up. L nodded off, sometimes waking up just long enough to give an exaggerated sigh, co-operate for a second or two and then fall back asleep again. We were just about to write off the session as a waste of time, when M and Shelley’s two little girls stormed into the room. L woke up immediately: Kids! Kids! Why didn’t you say? What did I miss?

D made the mistake of introducing M to a DVD game and did not take into account that it would require constant input from us… He also kind of forgot that M is at the age where he likes to have everything repeated …e…several times in a row. So, after supper on Tuesday night we sat and played the game with M. After every correct move, we cheered loudly. L sat on my lap and after a few cheers I realized that he was “cheering” along with us happily:
“Ghuuuuuu!”

L and I play a game where I lift his little hand to my mouth and kiss kiss kiss it. Eventually he starts lifting his own hand to my mouth. A few times recently I have noticed that he watches my long hair intently and makes a little movement towards it with his hand. So, I’ve taken to helping him to bat at my hair with his hand. At the OT session he also tried to play with Shelley’s hair (well after the kids got him to wake up!)

This morning I washed my hair when I showered. Hearing him wake up in the next room, I toweled myself dry, dressed and wound the towel around my wet hair. I then went to pick him up and suction him. As I sat down with him on my lap, he focused on my face and seeing the towel where he is used to seeing hair a look of complete consternation crossed his face: Mama, why is your hair….pink?

I feel honoured to say that he prefers being in my arms to anybody else’s. My mom was holding him the other day and he threw himself backward repeatedly. Just as I was about to get worried over this new thing, I noticed that he was looking at me. So, I took him from my mom. And voila! He stopped and settled down with a contented sigh.

His brother demanded to be tucked in for his nap by “Mama. Not granny. Give L to granny.”
So, I gave L to my mom. I picked up M to take him to bed and behind my back both my mom and D burst out laughing. L’s face was a study in indignation: Where are you going with my mom?

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I guess it’s just his condition…

When the idea of a Percutaneous Endoscopic Gastrostomy (feeding tube fitted into the tummy) was first suggested to me, my gut reaction was: OVER MY DEAD BODY. The paediatrician dropped the subject like a hot potato. But a few weeks later he was back nagging about it.

“You can feed him a steak, if you want to!” he cajoled.
The idea of liquidized steak made me feel like vomiting and I rather did not say that eating steak without being able to taste it was in my opinion rather like listening to the radio with your ears removed. I could feel tears stinging my eyes, but I refused to give in to the impulse to cry.

The doctor quickly sketched a diagram on a writing pad. Even though he tried to be nonchalant his hands shook and he dropped his pen a few times as he explained the procedure. He could probably feel my resentment crashing against him even though I didn’t say a word. He suggested we speak to a couple whose child had a feeding tube fitted soon after he was born and who was now four years old.

With the type of black humor I’ve come to associate with parents who’ve been through the mill, they said: “Look on the bright side. He can’t tell you the food tastes vile. He’ll never be able to refuse to eat and he has to eat his vegetables.”

After attempts to scare me with horror stories of how a child can drown in milk if the NG tube is not in the correct place and how he would have difficulty swallowing as long as he had the NG tube, I still held the trump card: “Suppose he does not survive the operation? He is only a month old and he’s been through such a lot. Can’t it wait?” I pleaded.
“He’s never going to get stronger or more alert. And he will never swallow. Accept it.” the NICU nurse said. Brutal. (Wish you could see him today, Cupcake!)

“If we have the PEG fitted tomorrow, you can probably take him home on Friday.” They were blackmailing me and I knew it. But I was so tired of kissing his downy head and leaving him in the care of strangers every night. I was tired of leaving my older son in tears. I was tired of asking permission to bath, pick up and feed my own child. My baby. Home. Finally?
I relented.

He came out of the theatre after being anaesthesized for far over an hour (Too long. Too long.) with a heart rate of 200 bpm, the blood pressure of an adult and with jerking limbs. For five hours I watched helplessly as they tried to stabilize him. When I took his hands or held his foot, the jerking stopped. I questioned their observation that he was having seizures, but they gave him the medication anyway. The only vein they could find was in his head. The medication caused an allergic skin reaction…But, he is a fighter and God is good. His heart rate and blood pressure finally went down and the jerking stopped. He slept.

I took him home on that Friday. The moment I had the discharge form in my hand, I bundled his remaining clothes in a bag and almost refused their offer of a discharge bag of goodies (lotions and soaps and a teddy bear) in my haste to get the heck OUT OF THAT PLACE with my baby.

And so my love-hate relationship with the PEG started. It was always in the way –getting caught in my clothes, his clothes. He pulled on it in his sleep, causing my heart to nearly stop a few times – the TRACTION REMOVABLE sign on the PEG uppermost in my mind. A threat or a promise, I wondered.

As for him not being able to refuse food….I grimly wished I could haul those parents out of their beds in the middle of the night when 5ml of milk took half an hour to run in due to him tensing his stomach muscles. Something hurt and nobody could tell me what it was. After initially picking up weight he started losing until he weighed less than his birth weight. He writhed and panted for hours and eventually even started crying after being completely silent for two months. I wished I could find joy in finally hearing his voice, but I couldn’t. Not when he was crying in pain.

A Nissen funoplication followed. Although the operation went far smoother, he was still in pain around every feeding time. And he still wasn’t picking up any weight. We went from one miserable doctor to the other until I finally lost every ounce of patience with and trust (not that I had a lot to begin with!) in the medical profession.

The original port on the PEG had to be replaced – by a fancy new port which didn’t allow the feeding syringe to fit properly. Time and again I ended up in tears as the syringe slipped out and the (liquid gold) pumped breastmilk ended up on the floor, all over me and L and every other damn place except in his tummy! Finally the PEG support company devised a feeding attachment that would fit the port and into which the syringe fitted snugly.

We had a milk scan done which didn’t show up anything funny. Eventually the doctors collectively shrugged their shoulders and concluded that the pain he was experiencing wasn’t pain at all and was a reaction due to his “condition”. And they washed their already snow-white hands and sent us off to deal with this “condition”.

We started loading his food with calories – adding supplements meant for preemies and even adding formula feeds in an effort to maximize his energy intake. He would pick up 500 grams in a week and then spend three days writhing, sweating and crying in…nothing, I guess… must be just His Condition (insert heavy sarcasm). After the three days he would have lost every single gram that he gained and more. Life was hellish, thank you very much for asking.

Around five months of age, the periods of pain became less frequent and eventually stopped altogether. Old-fashioned colic with a new twist? A raw area around the PEG on the inside of his tummy being irritated by stomach acids? I don’t know, but I’d love to..

And so the PEG remains. My son swallows, but not efficient enough to allow feeding by mouth. ABR will finally address the weak muscles in his throat and the posture that keeps him from swallowing. I still occasionally threaten to remove the PEG (by traction or otherwise) when it annoys me. And I WILL get that doctor to demonstrate feeding a steak to my son when the time comes, even though I keep on hoping that my son’s swallowing will improve. I would love to see the doc manage to keep the tube unblocked when something like applesauce regularly blocks it .

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I think he needs a nappy change…
Help. He’s not tired yet!

Sumi was a cross-Birman dynamo. He came to us as a kitten and has never left us again – in a way. We lived in an old house on a very busy road. The cats had to be held captive inside the house as we had already lost two cats through being run over.

The cats hated the captivity. Sumi handled this by bullying the two female cats mercilessly. He had such a lot of energy that he literally bounced off walls. One Saturday, I let them go outside thinking that I’d supervise. I went into the house for a few minutes. And then I heard the thud and the brakes and saw a woman with tears in her eyes cradling a bundle of soft fur….

We were heartbroken. We moved into a house in a quiet cul-de-sac. When we finally felt ready, we adopted Lisa – another Birman. She is as gentle as Sumi was a fighter.

Our pets were our only children for a long time. When M was born, Lisa adopted him immediately. She cuddled with him when he was small and when he became mobile, she started playing hide-and-seek and chasing games that made him shriek with laughter.

I hope you don’t have cats! a nurse said when L could come home out of the NICU.
We have three, I answered.
She lifted her eyebrows.

But initially the cats ignored L, even Lisa.
Gradually they started showing an interest. I’d come into the room to find one of them sniffing him. And then, one day, I heard a funny noise on the baby monitor. I rushed into the room and there Lisa was. Cuddled up against L’s back and blinking her eyes very slowly. As if to say: Don’t worry. I’m here now…

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It rains down in Africa

The idea of having children was, for such a long time, totally surreal. While I was infertile, I sneaked looks at moms with babies or pregnant women and would immediately look away – as if somebody caught me doing something perverted. Even after M was born this sense of alienation continued. It felt as if he would be taken from me and the pregnancy, the birth, the breastfeeding, the beautiful little boy would just be a dream.

Yesterday I stopped at the supermarket to get some groceries on my way home. And there they were: A mom and dad and two little boys. The older one was pushing the trolley, his thin arms almost not reaching the handle. The petite mother was carrying the little boy of eight months or so in her arms. He was big and strong – his round head solid, his eyes steady, his neck stable, his body firm. Everything L isn’t.

I looked at them, found myself staring and guiltily looked away. I wondered about them. How did the older brother react to the baby? What was the baby eating? What does he look like when he smiles. My uppermost feeling was pure, undiluted envy. I compared…. and when I finally reached my car, I collapsed on the steering wheel in a sobbing mess.

The mother of a seven year old boy with special needs warned me about this once. She said: I don’t even go there. I tell myself: Stop it! the moment I see a little boy of similar age to my son.

So, I picked myself up from the steering wheel, I dried my tears, I asked for strength and I turned my favourite song on the radio as loud as I could tolerate. I drove home. The moment he heard my voice, my little one turned his head and tried to locate my face, his weak eye muscles almost co-operating. I took him from the nanny and felt how big he was getting, I saw him opening and closing his hands and I brushed my lips against his silky hair. He is so soft and warm, I thought. And look how blue his eyes are….

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Labels

It has only been a while since I have started reading the blogs of other mothers with special needs kids. At least once a month, maybe even once a week, I encounter a post dealing with the labels and the tests. We all get angry at people for generalizing. We even sometimes get annoyed at ourselves for staring ourselves blind against the label. I know I do…

We know our kids cannot be compared to kids without problems. Why do we insist on comparing them, then?

The answer would probably be to satisfy ourselves that we are not missing something important that could help our children. And sometimes, yes sometimes we do it just to satisfy the powers-that-be.

In a number of countries (notably the States and Canada) there seem to be an early intervention program in place. Please correct me if I’m wrong. I am not sure about the financial implications of this, but I assume that it is government funded. To make sure that it isn’t abused you have to submit to tests and procedures and red tape – like with anything funded by any government.

[I had to laugh at an e-mail from a friend currently living and working in the UK who innocently stated that one isn’t considered pregnant in the UK before a doctor confirms the pregnancy. I’m sorry, but the idea of a highly pregnant woman staggering around with her hand on her back and being told, “Sorry, you cannot be pregnant. The doctor didn’t say so...” is highly ludicrous.]

In our country, any special intervention or program is the responsibility (financial and otherwise) of the parent. We are lucky that we have medical insurance. Even so, we had to upgrade to the top – and most expensive – scheme.

The paediatrician who attended to L after he was born, was very pro-therapy. But even if he wasn’t, I still would have explored any avenue that could help my son. Even if I had to get a second job, or incur debt. It was our responsibility to research the options open to us and we did.

Currently we are using the services of an Occupational Therapist only. She is neuro- developmentally trained and she has experience in sensory integration. She is a good therapist and I listen carefully to her opinions. She has taught me things about handling L that are beneficial. However, the moment he experiences pain or discomfort none of her measures help in controlling his spasms, for example. She sees my son once a week for an hour. She is therefore, in my opinion, less able to judge what my son is capable of than I am. I listen to her, but I weigh what she says against my experience as his mother. And if I don’t agree, I say so.

We are still doing ABR and I can see that most of the improvements we have experienced during the past few weeks, can be attributed more to ABR than OT. There are physical changes that we just have not dealt with during OT sessions. So, I take the OT sessions with a pinch of salt hoping that they will start showing dividends in a year or two.

We had to get a referral from the surgeon placing L’s PEG (feeding tube) earlier this year to the surgeon doing his Nissen fundoplication. The diagnosis in the letter said CP with mental retardation.. My child was four weeks old at the time. How is a person doing a surgical procedure capable of judging a four-week-old’s intellectual ability? Not that it is any of his business in the first place. He blithely came to this staggering conclusion after seeing the baby in question for about ten minutes pre-operatively and an hour while he was anesthetized… I exploded then and I’m still angry thinking about it. How dare he label my son when he is not equipped to do so.

[For the record. I don’t know what my son’s intellectual ability is. I know that he responds to his name, he knows our voices, he looks for the dogs or cats or his brother when I ask him where they are and he is clearly curious about what we are doing and things happening around him - which leads me to believe that he has plenty of intellectual capacity. But even if he had not done any of the above, I’d be careful to label him as anything before a significantly higher age. Or ever, come to think of it.]

Even the paediatrician seeing him twice a day after his birth would miss significant things about him. Once, after a consultation, he gushed about the improvement in his movements and alertness and I was, like: He’s been doing that for weeks! Blank stare from the doc.

This paediatrican stopped practicing in March. The person taking over his practice had to give us a referral to the Red Cross Children’s Hospital in Cape Town for a milk scan that we wanted to get done. She cancelled the appointment we had with her at the last moment and proceeded to give us a letter full of protestations of how she did not know our son and how he is “Cerebral Palcyd” (sic). I am sure nobody can blame me for never going back to her… Then the hunt started for a replacement paed. Let me just say that we interviewed two (coming with glowing references and practicing in our neighbouring city) and I got so annoyed with both of them, that I paid their exorbitant accounts and never went back to either. One of them wouldn’t touch my son. He was scared that L’s drool would end up on his examination table. The next guy spent an hour with us. At the end of the hour he shrugged his elegant shoulders, greeted us sweetly, never phoned us back with a promised telephone contact number and … you can guess… sent us a bill for double the amount an average paed charges. Both of them immediately wanted to know if we would want active resuscitation for our son – should he end up having to go back on a ventilator. I got the impression this was far more important to them than our immediate needs.

My point is this: Our kids are labeled because we allow them to be labeled. And the people we allow to do the labeling are not necessarily the people who know our children best. The label does not define the child. It is a handy explanation, but if we as mothers see our kids as CP, ADD, autistic or whatever, we invite other people to see them the same way. And maybe we even mold the way they think about themselves.

I don’t have the answers for dealing with the problem without going through the motions.
But we all want the best for our kids and if we feel in our gut that something we are doing is against what we consider necessary and may even be harmful – even if it is just to our psyche – why submit to it?

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Get to know me. How about you?

I LIKE powertools and make-up. I believe that both can change your life if you use them correctly. I don’t.
I HATE the presumption of mainstream medicine that it can improve on nature in all respects. And that ordinary people believe this.
I AM stubborn.
I SING nothing, nothing nothing. Not allowed to. Only Papa may sing.
I READ Terry Pratchett.
I COOK dishes that only use one pot. Like pasta or stew or quiche.
I ADORE planning my garden. I don’t get to the actual gardening. Ever.
I WATCH Barney, Make way for Noddy. Have no idea what’s on TV at the moment. Movies? Even less.
I CELEBRATE beauty.
I HOPE for healing.
I TRUST in God.
I WEAR whatever is clean and ironed and comfy and warm. Because I inherit a lot of my clothes from my mother and sister the clothes in question are normally reasonably pretty/smart/classic. The last time I bought something for myself was… let’s see…June last year.
I ENJOY chatting to friends in a coffee shop. Playing outside with my sons. Being loved by my cats.
I DREAM of wholeness.
I APPRECIATE my family, my house, the food I eat.
I THINK I can do it all. I am mistaken, of course.
I CRY when I feel helpless.
I SLEEP too little.
I SMELL of Chanel no 5.
I EAT chocolate, bread and cheese and fruit.
I DON’T EAT tomato, olives and lettuce. If I can help it.
I AM GOOD AT sensing the emotional atmosphere around the person I am speaking to.
I ADMIRE single parents.
I GET ANGRY AT injustice, child abuse, cruelty to animals.
I PLAY the piano. Badly.
I DRINK red wine or sparkling apple juice.
I PRETEND not to be scared.
I LAUGH at myself. Mostly. Oh, and foot-in-mouth disease. Because I suffer from it too.
I LISTEN attentively.
I DISLIKE phone conversations.

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Happy birthday to me

Today is my 36th birthday. 10 Years ago, I had just met my future husband. He bought me a bunch of yellow flowers and left them in a glass vase in a prominent place in his house. I walked in – tired from work – and saw the flowers. Oh, they’re pretty, I thought, not realizing that they were for me.

Last year I had foolishly invited friends for dinner on my birthday. I had underestimated how tired I would feel at 20 weeks pregnant and with a toddler that wasn’t quite walking yet. So, I defrosted soup as a starter, cooked whole chicken, vegetables and fresh pasta with a sauce out of a bottle and served chocolate muffins with a mulberry sauce for dessert. I remember very little about the evening except how I fretted over stupid details and wished that my guests would go home!

I don’t feel all that different from 10 years ago (OK maybe less naïve), but I am somehow immeasurably older than a year ago. I’ve been trying to pinpoint the feeling all morning and the best way to describe it would be to say that a year ago I thought that I was untouchable. That nothing could go wrong. I mean, I knew the possibility existed, but it was not real. Today I understand with absolute clarity that I can lose everything I have and everything I am in the blink of an eye.

So many things have gone wrong in the past eight months, that I have decided to pull up my anchor and drift. Because every time I think that I am going one way, the storm pulls me away and bashes me around for a bit. It is disconcerting to everybody I love to see me like this, but I am just tired of fighting the current. I pray that soon I’ll see a new direction emerging. That God will make the storm stop and that I will regain a measure of my former self-composure. May this be a better year…

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Goodbye, Frans

I met Frans and Sylvia through an evangelism project at my church back when I was single and carefree. They took me under their wings and introduced me to my husband-to-be.

D worked with Frans. Every year, D and Frans would have to attend meetings in Cape Town. Airfare and hotel accommodation were included for the wives. Sylvia and I enjoyed each other’s company, despite the big difference in ages. We were not in the same financial league as the other wives and we had a few quiet laughs at how serious they took themselves. Soon we decided to do our own thing. We went shopping, sightseeing and spent hours getting spectacularly lost in a city that was strange to both of us. This past April, I knew that it would be the last time. Frans was about to retire at the beginning of next year. They had already scaled down and would eventually be moving to a different city to be closer to their only daughter and her family.

Frans had a back operation last Friday, but he was recovering well. So, when the call came on Saturday morning, I was ill prepared for it. It was very early and Sylvia’s voice was shaking, so I knew it must be bad news: Frans had died of a massive heart attack early Saturday morning. I drove to the hospital and sat with her and two of her friends until all papers were signed and she could take his few belongings with her.

Walking out of the hospital with her hand in mine, leaving him there, was hard for me. What it must have felt like for her, I don’t want to imagine.

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Closer to the finish line

Tomorrow is a Youth Day here in South Africa. It is a public holiday and it is also the day that the Comrades Marathon is run between the cities of Durban and Pietermaritzburg. The Comrades consists of 90km of grueling hills and allows athletes only 11 hours to finish. It is usually broadcasted on TV. But helping out at one of the water tables or standing close to the finish is really an experience. This is where total strangers sometimes pick up a fellow athlete who has collapsed and carry him/her to the end. Jeopardizing their own chance of finishing to help another. It never fails to bring tears to my eyes.

I wish I were a better writer. So many thoughts are going through my mind right now.

14 June is a date that will always stand out in my mind. Three years ago on this date, I found out that I was pregnant with M. I had been battling to fall pregnant for four years and had finally decided that if I wasn’t pregnant by 20 June 2003 (my birthday) I would stop trying to have children. It may sound strange, but I needed a rest (maybe forever) from the constant hope – tension – failure – mourning cycles my life had become. So, when I took that pregnancy test it felt like the whole world stopped for a moment. And when I saw the second pink line, I just collapsed: “God! Thank you, God!” It felt as if I had been snatched from the fire.

While L was in NICU and we spent our days traveling between home and hospital, we often encountered one of our young neighbours – busy mowing his lawn as we were driving up our street on our way to hospital. He would wave as we passed him and when I looked back his hand would stay raised in a gesture of blessing. To me it felt as if someone had picked me up and carried me closer to the finish line in that instant.

L was totally distressed yesterday. Not sleeping, going into one spasm after another and acting as if his tummy was aching. Last night he slept until 23:00 and then would not go back to sleep until 3:00. Not that I would know. My poor mother took this shift. I feel remarkably well-rested… and very guilty. But she assures me that she will take naps throughout the day.

When I listened to his lungs this morning they sounded lovely and clear except for one little spot at the back of his left lung. We seem to have turned a corner.

Logging in this morning and finding messages from mothers who have been there, was also very special to me.

Once again I have been picked up and carried.

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Terror

I really hope that it is possible to shake off the terror of seeing your child connected to wires and beeping machines. To the mothers who deal with this on a daily basis or more often that I have had to: Oh. What can I say? Nothing that’s not going to sound completely stupid and inadequate. If I could hug you close to me, I would.

There are so many aspects of my son’s stay in NICU that I will have to come to terms with – eventually. Now it is still too fresh and real. Like the one nurse who kept on calling him “it”. As if he had no right to be acknowledged as a human being. Later on I understood that she was trying not to bond with him. She thought he was going to die.

But even though I can remind myself of the long way we have come, I still cringe when any of my boys, but especially L, gets sick. You see, I know that his chest is compromised due to not being able to swallow. I knew all along that seeing him through this winter was going to be hard. Yet, now that we are battling the second infection – the worst so far – I feel that familiar sense of helplessness that I have to fight at all costs. I have to tell myself NOT to panic. I try to be logical: He has no fever i.e. no infection. He has gone through a set of antibiotics. One more is probably not going to help. Lots of chest physio, nebulising him and positioning him in such a way that the gunk runs OUT, is likely going to make all the difference in the world. But I still feel a bit short of breath. Cannot get that nasty picture out of my mind.