29 September 2007

Abbe the Pirate.

Yesterday, the big brother was running around the house, with a pirate hat on his head and a plastic sword in his hand, shouting. He was a fearsome pirate.

Abbe wanted to be equally fearsome. Half a meter behind, panting and coughing, Abbe fought on with a smile on his face. Shouting and screaming, with a black eye patch. And, in his hand, a yellow flyswatter.

26 September 2007

Thank you!

Both yesterday and today, lots of new people have popped in here to read our blog. This is largely because this man found us and wrote such nice things about my story. But also thanks to others.

This makes me very happy. I’m glad so many people have read. And cried. And laughed. But above all, I’m glad there is room for things like this.

Thanks for all the encouraging comments. Damn it, I so want to continue writing now. And I hope you will continue to comment, ask questions, cheer me on and boo.

/Abbe’s dad

25 September 2007

Kristallen – a bit late, but still.

How many of you watched the Kristallen gala a week ago? I only caught bits of it myself – this, the big office party of the TV world. I was flicking through the channels during the Idol breaks and by pure chance, I got to see Kristallen exactly when the Prize for the best documentary was being awarded.

At this stage, everybody knows it was "Another part of Köping" that took home that category (and later, also "Programme of the Year"). If you have followed the series, you know why. A fantastic series about four mates living in a group accommodation. Not a comedy making fun of disabled people, not a tearjerker either. Just a hell of a lot of love and joy, mixed with reality.

And if you have followed the series, you also know Micke loves doing his speeches. At every party and every do, he grabs the opportunity to say a few well chosen words. Micke has Down’s Syndrome and you can hardly understand what he says but it doesn’t matter. He wants to speak.

And all this ends up being so bloody good and very moving. The Köping gang wins a prize and it’s time for the acceptance speech. In front of the entire Swedish population (at least the ones who watch TV3) and the whole TV elite, an acceptance speech is about to be held. At prime time. This has to be the ultimate wet dream for Micke and naturally – he jumps at the opportunity. And it is the finest, most incomprehensible acceptance speech I have ever heard, finishing with a resounding "Öua, öua, öua, öua". I snivel again. And laugh.

I’ve looked everywhere for a clip of Micke’s speech, but can’t find any. If you have one, or know where to find one, please let me know. You will have to settle for Tobbe’s acceptance speech as they got the Second Prize. That’s also fantastic. Short, but good

At the speech therapist

Today we saw the speech therapist again. That’s the woman who is part of the 22q11-team. We have another speech therapist, at the habilitation unit. It might sound a bit weird, but they have two different roles. Or, rather, they will have, with time. The one at the habilitation unit is sort of following the daily development and the one we saw today is responsible for the anatomical side of things. Doctor’s examinations, potential operations, reports to our own Solveig. I appreciate it’s not easy to keep up with this, I hardly manage to keep up myself.

Anyway. The speech therapist (eg the one who...well, you get the point) brought out a box with lots of things in it. There were little chairs, tables, cars, trains, dolls, cows, horses and so on. Lots of nice little stuff, I must admit. She starts a tape recorder and lets Abbe rummage the box.

– Oool, said Abbe (chair). – Mamma ool (mum’s chair). – Nenning (baby formula, about a little feeding bottle). – Ääshhht (horse). – A-afhh iiil (dad’s car).

And on it went. He did so well. And was so sweet. I melted like ice cream in the blazing sunshine, and grasped most of what he said. The speech therapist understood a bit. But I doubt you would have. You simply need to train a bit on the Abbe-language first. The speech therapist said he seemed to have a good perception of the language. He constructs short sentences, imitates etc. She differentiates between speech and language, we learnt. We talked a bit about what to think about, what to try to avoid and how come he doesn’t have consonants. You know, those M, N and NG-sounds.

I asked optimistically if this is something you can train for. After a slightly too long, pregnant paus, she did that clenched ‘well-how-shall-I-say-this’-look and tilted her head sideways. I’m sure you’ve seen it. And know what it means. No.

It’s about anatomy. Abbe’s palate just doesn’t go all the way back in order to obstruct properly. So the air is streaming where it shouldn’t. And consonants like b, d, g, k and t become impossible. You can’t train for that.

Deep down, I actually knew this all along. I mean, I’ve read up on all this. I consider myself a reasonably intellectual person, who sees things with a clear sight. Even so, I had been hoping there would be a way out. Maybe you can train. But no, instead it makes me so bloody sad.



Abbes older brother has inherited an old Gameboy I had myself, in the 90s. Old, tired graphics compared to today’s gadgets, but he doesn’t care. He loves it, has already found functions I didn’t even knew existed in these games and has been thrashing me since way back. Four and a half year’s old! Of course, Abbe wants everything that his brother has. Yesterday he was tearing and pulling the Gameboy and shouted out loud: "Iiin ey-oy, iiin eyj-oyj!" (my gameboy). Sweet.

23 September 2007

Prepared to cancel.

With hindsight, it was good that Abbe’s operation tomorrow was cancelled already last Tuesday. Considering how ill he has been this weekend it would probably have been cancelled anyway. And then we would have been set on him getting the operation and therefore been very disappointed. Are you following?

It’s better now.

Ok. I think it’s time to declare "all clear" for now. Abbe is feeling better now.

Two nights in a row, we have been sleeping tight together, with all the windows wide open in the bedroom, just to get that well needed cold air into Abbe’s throat. The temperature went down a bit during the night, with the help of paracetamol and he was breathing better thanks to Betapred and fresh air.

Abbe’s mum is back from Käringön. She had had a good time and she deserves it. But I need to sleep. Goodnight.

22 September 2007

Pediatric Accident and Emergency.

After taking advice from the Pediatric A&E, we agreed on the following. As long as the temperature is going down with the help of paracetamol and the respiratory rate stays the same, we might as well stay at home. But as soon as the breathing becomes difficult we go to the hospital to get Ventolin or similar. She gave me various tips on what to look out for on Abbe – the neck, tummy etc – to see if he needed help.

I gladly avoid A&E. Having spent all those hours there – usually nighttime – I’d rather check Abbes breathing once every half hour, to avoid having to go there.

Health Care Advice Line.

"You are placed in a queue, and you are currently number 3."

Abbe’s temperature is a bit over 40°C and his breathing is very rough and heavy. He is asleep now, in an almost upright position, with all the bedroom windows open. Cold air and upright, as it should be. What’s worrying is the poor oxygen saturation he has from the outset, even without the croup cough. The margins. They’re so tiny. This is why, since 30 minutes back, I’m in a telephone queue to the Health Care Advice Line.

But what will they say? My experience is that as soon as you mention the word ‘heart child’ nobody dares to make their own decisions, without involving a cardiologist. Oh … now it’s my turn, hang on …

Ok. As I thought. Go to the Pediatric Hospital, or call them. I’ll try to call them first.

21 September 2007

Murphy’s law.

My wife is away, at Käringön. That’s a wonderful little island outside of Orust, on the west coast of Sweden. She is there with some girlfriends – eating, drinking and enjoying life. Well deserved.

I’m at home with the boys. After the obligatory "yhhs yhhs" with "oh-oohn" and "inn-inn" (Friday cozy night with pop corn and pretzels – in Abbe language), I put the two boys to bed, poured myself a glass of wine and watched the future stars of Idol 2007.

Just as I sat down in front of the computer with the second glass of Friday wine, to write a bit on the blog, I hear what sounded like a dog barking, coming from upstairs. Abbe has got croup.

First time he had it we had to stay at the hospital for a couple of days, him and I. The second time we spent half the night in a waiting room at the Pediatric A&E, with the front door wide open (cold air is good for croup, in case you didn’t know).

And now?

18 September 2007

Sudden changes.

One emergency appointment per week. That’s about as much as the pediatric heart surgeons can cope with at Queen Silvia Children’s Hospital. And today they received no less than three little babies with life supporting Prostivas-drip at the 323 unit. It was a case of fitting them into the scheme as soon as possible and then Abbe fell out of the planning as soon as he’d been falling into it. Instead, he got a new appointment, on 23 October.

We bent over backwards to make this operation happen, given the short notice we had. Notify work, cancel various appointments with speech therapists etc, cancel a dinner we had invited people to and sort out baby-sitters for the big brother. Everything was ready to go.

The nurse who called from the 323 unit this morning felt ashamed. She apologized like mad for having messed things up so much for us and tried in every way to explain the situation. But, what the heck, of course I understand. Just two and a half years ago Abbe came in with Prostivas attached to a needle in his scalp, to keep him alive. I know exactly what the parents of those babies are going through right now. Abbe can wait.

17 September 2007

Short notice.

Abbe is two and a half years old now. Well, he was yesterday, to be exact.

This morning I had a call on my mobile. I was super stressed because we only had a few hours left before an important presentation for a presumptive client. We had been working hard with this during days, evenings and nights for over a week. I replied and in the other end was the Pediatric Heart unit at the hospital. It’s happening again.

I have known that Abbe is to have a second heart operation, since last time it happened, back in July 2005. And lately, I’ve even been aware it’s to happen fairly soon. There has been talk of October.

But now he has got an appointment for Monday. In a week’s time! They asked us to think about whether it would work with such short notice and get back during the day. It was not easy to focus on our presentation, I must admit, but – I managed.

3 September 2007

Dance on my grave.

I do have my low moments, with grim and unthinkable thoughts. How difficult will Abbe’s life be? Will he feel left out, will people understand? Will he be there when I grow old? It doesn’t happen that often, I basically have a positive approach to life. But sometimes, they pop up, these dark clouds.

That’s when I want to listen to a special song, by Bo Kaspers Orkester. It makes me happy and sad at the same time. Gives me hope, in a silly way. I know that Bo Sundström wrote it when he had had his daughter and it probably means something completely different to him, compared to the meaning I read into the lyrics. But what the heck, it does it for me.

Some time ago I was at a BKO concert in Gothenburg’s concert hall. I remember thinking it started a bit lousy, but the song I am talking about came up as third or fourth. That’s when it all changed. My hair was standing on end and tears were running down my cheeks. And the rest of the concert was magic.

"They want to teach you how to crawl, how to walk in step. 
They want to teach you how to march, how to stand to attention. 
Stand in line and clap your hands, agree for the sake of it. 
Learn how the wind turns, walk in a straight line for the sake of it.

They want to teach you how to lie when things are against you.
Learn how to bow and scrape to some idiot. 
I want to teach you how to dance, if it will ever happen. 
If I get to decide about things, then you’ll dance on my grave.

They want to teach you how to doubt on what you believe is true. 
Go around being afraid of your sister and your brother. 
I want to teach you how to dance, if it will ever happen. 
If I get to decide about things, then you’ll dance on my grave."

On Spotify