115676916338897865

Mousey mousey where are you?

On Saturday night as I was about to put M in bed I thought I saw something scuttle under the living room couch. I chose to ignore it because D wasn’t there and I wasn’t about to tackle whatever it was as long as it didn’t want to tackle me. If you catch my drift.

But then I heard M exclaim: “Oooooh, Mama! Just look at the sweet mousey!

And yes, it was a mouse. And rather sweet. To be precise, it was a very small shrew. It was small and sweet enough that I made the mistake of trying to pick it up….and it bit me.
I guess it’s not called a shrew for nothing.

So, I held one of M’s socks in front of it and it promptly hid inside the sock so that I could pick it up easily. I wanted to put it outside to protect it from our cats, but M protested. His interest was so joyful and genuine that I realized that I wasn’t going to get him to bed unless we do something meaningful with this mouse and I resigned myself to harbouring wildlife in my house. Not for the first time. Our cats regularly drag bats and mice and moles and, yes, even snakes into the house as “gifts” for us.

We got a large shoebox, punched holes in it, left some food and water for the mouse and placed the sock with the mouse still in it inside the box. We put the box next to the nightstand and I promised M that he could look at it again as soon as he wakes up in the morning. On Sunday morning M jumped out of bed and opened the box. And…. the little shrew had clearly departed for greener pastures….mouseholes(?) Oops.

We explained that the mousey was probably hurt by the cats before M and I found it and that it had died. It was M’s first encounter with death and for the rest of the day he kept asking where the mousey was. And then he would remember and say: Mousey gone. It was hurt.

I keep suffering from a terrible attack of guilt. I’m hoping that it was in fact the cats that caused its untimely death and not me putting it in the box…..

115676837180946921

Guilt..

D and I have planned weeks ago to attend a concert on Friday evening. We had been looking forward to it since we haven’t had a “date” by ourselves in many months and actually haven’t been out more than a couple of times since M was born. We made provisions for someone to watch the kids – and then L got sick.

Initially we both didn’t feel like going. But then, on Friday afternoon D phoned me at work and tentatively suggested that we go after all. L was in hospital and Anna (his caregiver) had offered to stay with him and our friend was still more than prepared to look after M. And we wouldn’t be gone for more than three hours.

So we supressed our guilt and worry and went. We really enjoyed the concert – an a capella group. And we bought some lovely books for the two kids at a book display.

We came back late at night, went to check on L in hospital and found him fast asleep with a lovely nurse assigned just to him for the night AND Anna in attendance. My plan was to stay with him, but Anna urged me to go and have a rest. So we went to pick up a sleeping M from our friend as we had promised. The next morning, as he woke up the following conversation took place:

Him: Mama, M slept in Charmaine’s bed.

Me: Yes sweetie, you did.

Him: M cried.

Me: Oh I’m so sorry! But we fetched you like we promised…See?

Him: Don’t worry Mama. Charmaine kissed it all better.

I must say, this tugged at my heartstrings. Guilt …intensified!

115676771867823160

Discharged

On Sunday morning L was discharged from hospital.

He has been making remarkable progress in so many ways during the past month. He has picked up more than a kilogram in mass, he is taller, he is more responsive, he focuses better and his head has grown almost a centimeter in circumference.

The change in the attitude of the nursing staff towards him was noticeable. The previous time when he was admitted, he was very sick . It was the time he had kidney failure and it wasn’t picked up before he had “crashed”. He was unresponsive, his eyes glazed and his breathing laboured. I desperately kept on insisting that he DOES respond, DOES see us, DOES hear us under normal circumstances. And I could see the doubt in the very kind nurses’ eyes.

Now they could see it for themselves and their relief was almost palpable. They talked to him, they responded to his sounds, they carried him around when he insisted on it and they picked up on his likes and dislikes.

I felt such a sense of relief…

115651447362760691

L is in hospital. Again.

His tonsils are so swollen that he can barely breathe. He was put on a minimal amount of oxygen to help with breathing.

Last night I slept next to L’s cot in hospital. Two nurses were on duty. They nebulized L, they saw that his IV fluid was running and they were both kind and efficient. They also saw to the kids in the rest of the ward’s needs.

L woke up on two separate occasions simply bubbling with secretions. It even came from his nose. He coughed and spluttered and, not being able to swallow very well even under ideal circumstances, his eyes just went big and he started choking on the gunk in his throat and nose. I usually wake up immediately when his breathing pattern changes. Last night, by the time the nurses realized that something was amiss, I had already suctioned him. The third time this happened, neither of the nurses was in sight. I could smell toast from the kitchen and guessed that they were making themselves a well-deserved (and I mean it – no sarcasm) snack. I suctioned L once again as he was coughing and spluttering his way through awful phlegm.

Next moment, one of the nurses came into the room, frowning: “Should you be suctioning him so often? she asked. “You are irritating his throat even further. “

Very good point. Except that if he chokes or his airway gets blocked by secretions, he may not be around to worry about the state of his throat. I explained as well as I could and left it at that.

When morning came, I went home to get fresh clothes and see to M. D took Anna (L’s caregiver) to hospital. When D arrived, he was accosted by the nursing unit manager who asked him that we don’t suction L as it may inflame his tonsils even further. When I arrived he duly relayed the message. And that’s when I lost it.

The ward’s nursing unit manager walked into the room and I asked her what the story was. She said that L was wheezing when she arrived on duty and that she was told that I had irritated his throat by suctioning him too often. I told her that he had been wheezing all night – even when he was fast asleep and that it boiled down to a choice between choking and throat irritation. She kept on challenging me – talking to me like a wayward child. I realized I wasn’t going to make any impression on her being reasonable and grown-up and expecting a fair exchange of opinions.

So I silenced her, not too friendly, and said that I’m not going to waste time reasoning with her. But that I do want to state one thing. If anybody questions my authority as a mother ever again or tells me what I should or shouldn’t do regarding my son, there will be huge trouble. She said she’s just acting in my son’s best interest. I said, funny, me too. She said she is just stating facts. I said, so am I. And the fact that I’m stating is that I’ll polish the floor with anyone ever talking to me again like you just did. (very grown-up of me, don’t you think?)

D was furious with me. He has a point, of course. I could have acted with more grace and patience. And I’m shamed when I realize that in an exchange like that there really cannot be any winners. But man! I really felt provoked and vulnerable and misunderstood. And I don’t take kindly to such a supercilious tone of voice. They call me, “Mom”. The only people allowed to call me Mom are my kids. It’s the same as the irritating habit (mostly nurses) have of walking into a room and sunnily asking: How are WE.

Dear. Last time I checked I was fine. I actually don’t give a rat’s ass how you are.

(Writing it down like this makes me see how funny it really is! Next post I’ll have a better demeanor. Promise. If my child could just get out of that hell-hole!)

PS And this, dear friends, is the problem with LIFE. I think I’m all saintly and can now finally not “sweat the small stuff” and then. BAM

115640910985120401

Christening

L’s christening went well and in the end only my parents attended.

M couldn’t decide if he wanted to help bring his brother to the front of the church or wanted to be with D and I. It certainly brought a bit of comic relief! Especially when he clung to a pair of legs he thought was his father’s and it turned out to be the minister’s. He was horrified when he realised his mistake. My mom was there to save him , but I still felt sorry for him. I tried to explain the concept of a christening in simple terms: Jesus shows that he loves us thaaaaaaat much….but I’m sure the whole thing seemed a bit confusing to him. L certainly didn’t appreciate the water on his forhead and started sobbing…

Afterwards people (some of them strangers) came to us and congratulated us. They told L that they love him and that he is a blessing to them. It meant a lot to me.

That night we witnessed how God has been with us through difficult times. I also tried to explain what it is like having a child with special needs. For this I used the Christy Everett’s post A year later… thanks Christy for giving me permission to do so! One of our ministers also witnessed about his depression and how he finds it difficult to see God in the midst of it. He shared that L’s christening brought him comfort in the knowledge that he has also been baptised. I think what he meant was that we may feel that God is far, but that God still has a relationship with us (despite our feelings and our depression) and that He stays unchanging. He loves us no matter what and is able to fix what is broken…

L wasn’t well that day – lots of arching and hyperextensions. It always causes him to be less “there” – as if he is in a world of his own. So, taking pictures posed a bit of a challenge. I’ve been holding off posting them – hoping that I could use my usual picture hosting service, but I’m unable to access it for some weird reason. So, given the time Blogger takes to upload images, I’ll stick with only the two pictures for now. More later, I promise.

115556369180404198

Rites of passage

A christening is a rite of passage. It is an affirmation of the belief that God includes our little ones into His plan for the world. It is an acknowledgement of faith. It is an occasion to be joyful and proud and for family togetherness.

This Sunday, God willing, we would like to christen L. My parents will be there and I’m considering asking my mother and older son to jointly bring L to the front of the church. I’ve been thinking that I need to get a smart outfit for L, have M get a haircut and buy a new dress for myself. We’ll invite a few friends for tea afterwards and hopefully take lots of pictures.

That evening D and I have been invited to share our story. I plan on making the most of it. I hope and pray that I can make people understand that they should look beyond the label. I want to focus on the positive. I want to thank God for my son’s life in public. I want to speak life.

But in my heart there is a small pang of sadness.. D’s parents won’t be there. D’s father is a retired minister of religion and he has christened all his grandchildren so far. We’ve asked him to also christen L, but he has declined. On a practical level, I can understand this. He suffers from Bell’s palsy and he is, after all, 76 years old. I can see that it may be emotionally difficult for him.

The fact that they won’t be attending the christening at all is another matter. However much I try to understand and explain it away to myself, I just can’t. My in-laws are very sentimental and family-oriented people. I’ve known them to travel 500km to attend a school concert….

D has accepted their decision with uncharacteristic quietness. And this bothers me more than I would care to acknowledge.

Whatever our shortcomings in the eyes of the world, God accepts us as we are. There is nothing we can be or do or say that will change his love for us. Families are God’s representatives on earth. Our love is an echo of God’s love. It is unconditional love.

And when my little boy with the heart of a lion faces the curious and judgmental eyes of strangers, I want him to be bolstered by that kind of love. The kind of love that makes people blind to imperfection. I want him to be surrounded by family. Preferably ALL of his family.

But if it cannot be, then that’s how it is. Then our love will just have to be enough.

115521282116604697

More on lemons …er.. limes

Our two-year old son is at the stage where repetition is very important. His favourite video is Stewart Little Two. He has managed to memorize passages from the film. Heck. He watches it so often that even I am able to quote whole scenes.

Taking into account that English is not our home language, it is clear that his quotes from the video have nothing to do with the meaning of the words, but everything with the sounds.

“Falcon!”he’ll yell, giggling madly.
“Catfish!” This one cracks him up no end. Catfish must be the funniest word in the English language.
“GRRR. Hairball. Major hairball!”

And then the grand finale. Wait for it.

“I’m a LIME! I’m a LIME!” (I’m alive. I’m alive.)…

Remind me to record this so that I can blackmail him once he is bigger…

115504667312309172

Edited to add link ABR – more info

ABR (Advanced Biomechanical Rehabilitation) is a fairly new and reasonably unknown rehabilitation program, but there are ABR centers around the world.

My understanding is that there are mainly two ways brain damage could be approached. One is through therapies that target the nervous and sensory systems. The other is bio-mechanically. I think that both have a place and should preferably be used together. We are choosing to focus on biomechanical repair for the moment because L’s sensory integration (not to speak of his health!) is affected by his poor biomechanical condition. But even people with reasonable biomechanical structure could benefit from this therapy.

ABR strengthens the smooth muscles in the body (the muscles that surround organs and make up most of the volume of the body) through a hands-on technique. Smooth muscles are usually the ones affected most by brain damage in terms of volume. And because there is no volume in the torso, neck and head, the outer muscles and skeletal bones are not aligned correctly and limit functionality of the torso, neck, and limbs and even lifeline functions such as breathing. Once volume, strength and correct alignment is achieved, the brain receives a correct electro-mechanical picture of the body and is able to find pathways to restore normal function such as head control, sitting crawling and walking – in that order.

ABR do not claim to improve brain function or mental ability. But often these also improve with an improvement in structure. Human beings are so complex that straightening out one problem often causes a ripple effect with positive things happening even on emotional level.

The technique is spectacularly non-spectacular! But it works.

Look at the Belgian ABR website (in the links sidebar of this blog) for more info. Also see the Canadian ABR website which gives a very good explanation of ABR.

115504590113888399

Lemons

We’re back from Johannesburg. And boy! Am I glad. We’re not used to spending hours in traffic – which is exactly what we had to do the whole week. In freezing temperatures and with an irritable two-year-old and a sick baby in tow. Fun? Not.

Krista and Kris from Belgium presented the training sessions. They were appalled by L’s condition and they want us to put in more hours of ABR therapy. They are reasoning (correctly) that his life is currently in danger and that we need to help him with his breathing as soon as we can. So we are going to concentrate on chest ABR, head ABR and mouth floor exercises. Five hours a day. Yep.

To prove them right, L’s secretions developed a nasty colour while we were in Johannesburg and we took him to the ER to have him assessed. While we were giving one of the trauma nurses our history, another came back from her tea break, gave an arching and noisily breathing L an alarmed look, grabbed him from me and started yelling for oxygen. I literally had to run after her and grab her arm to stop her. When I explained the situation, she laughed sheepishly and said she couldn’t understand why her colleagues were standing around doing nothing. L gave her one of his focused stares and promptly decided she’s a GOOD THING. I don’t think he minded being in her arms one bit!

Even so, X-rays confirmed that the bronchio-pneumonia was back to a degree. We got given another course of antibiotics and it finally looks as if his lungs are better now.

I am once again very impressed with the improvements in other ABR patients. Clint, a thirty-odd year old man with muscular dystrophy has deteriorated to the point where his breathing was affected and he couldn’t even smile any more. After six months of dedicated ABR therapy by his mother and wife, he looks like a new person. His face has filled out, he can smile once more, his eyes are more prominent and he seems much happier. Stephen has autism. The structural changes in him are noticeable, but the big surprise is the improvement in his behaviour. From storming into a room and destroying things, he can now greet, interact and obey commands. And every other patient had his or her own little victory..

We learned a lot and we were reassured that our technique is correct. It would be truly heartbreaking to spend all those hours and not do it correctly.

We were motivated by stories of drastic improvements on younger children. It is definitely to L’s advantage that we started earlier. But, as Clint proved, you don’t have to be very young to also benefit.

Now it is just finding the hours that remain a problem. L has “co-operated” by not sleeping more than four hours a night for the past three nights. Well, you know what they say about life handing you lemons…