did you know?

Did you know that couples with a child with a chronic illness have a divorce rate of 75%? That is not good at all, the normal 50% divorce rate is high but 75% is a huge jump up. That means only 1 in 4 marriages survive. That is terrible, so my thoughts are now turning to what makes the difference, what makes it work and what causes the marriages to fall apart? I have no answers only questions. I do know this: I want to be one of the 1/4. So I suppose I have to find the answers and work at it.

Have you lost a tooth yet?

Have you lost some teeth? Little Em is starting to get asked this by people. No, I say, she has a cleft lip and palate and that is where the gap in her gumline is. It will be fixed when she is older. I guess i does look like she has lost some teeth. I don't think she will lose teeth for quite a while. Although J was only 5 1/2 when he lost teeth, that gives us at least a year for Em.

No phone call yesterday so I am feeling a little relieved, although part of me thinks they could still call today ... or tomorrow... or? Anyhow, El had a huge cough this morning and it didn't sound quite as moist. So heres hoping that the worst has gone.

Getting back into schoolwork was fine last week, but we are struggling a bit more this week. I think it comes back to my attitude to it all. The added stress of waiting for that phone call or not, has really affected my attitude to everything so I think today will be better. Loving learning about maps and space, as are the kids! Bring on the treasure map!!

references to clefts

I read a couple of books which have references to cleft lips. Harry Potter and the chamber of secrets, at the end, Prof Lockhart, says, " the witch who banished the bandon banshee had a hare lip. I mean, come on..."

I also read a book by Jeffery Archer, I think it was Kane and Abel, (great book!). I don't own this one so can't look up an exact quote but it was set in an immigration place in the USA and someone was turned back becuase they had a hare lip. I think it was set in about 1940. I was surprised that someone would have been denied entry because of a cleft. But I suppose it is a medical condition. I wonder if it is still something that would affect your ability to work in/ live in another country. I hope not!

El is still coughing like a trooper, even though she has been on antibiotics for 5 days. Will have to wait and see if we get a phone call on monday. Hope not. Have I mentioned that I hate waiting?

Mad

I read yesterday that it against the law in Australia for siblings (or anyone) to find out if they are a carrier of CF until they are 18. This makes me angry as I have been thinking about getting J and Em tested so that they and we know. So when they are teenagers you can start talking about the implications of that. I don't understand why you can't find out. What would the harm be? I also don't know if this is actually the truth as it was just something I read online so will have to check with the clinic.

Prayers today for Rebecca who is taking her two kids for their annual cf reviews. Clinic appointments are always stressful for me and then the week after waiting for phone calls of results is like torture! (which is where we are at the moment). I thought perhaps it would get better, but I don't think the fear of the unknown will ever go away.

CF Sucks!

back

I've been away for a week. glad to be home and not. getting back into school for term3. El's cough is much worse so she is on antibiotics, also trying nutrini drink twice a day to try and boost her weight. And got the creon 10000 so she doesn't have to take quite so many enzymes in a day. El sings songs and talks all day long now.

They are all happily building lego at the moment. J's birthday is three weeks away and all he wants is lego starwars. Last year it was all about transformers. Now he hardly ever mentions them, before that it was thomas and bob the builder. So grown up. Given his obsession with star wars at the moment it is quite surprising that he has never watched any of the movies! Only read the lego catalogue and some books!

Miss Em is gorgeous at the moment siniging and dancing through the house. Dressing up and changing clothes about a dozen times a day. The washing doesn't like it! But she is happy!

Well that was a whole blurb about absolutely nothing. just the mood i'm in I suppose! Happy days!

Not the dentist!!

I hate going to the dentist! Unfortunately, I make my kids go, which means I have to go too. I feel like a hypocrite telling J he will be fine, when I am so nervous. so am I actually lying to him? I don't think so I am just trying not to pass my fear on to him. We (J, A and I) see the dentist in two days and three hours. YUCK! Em has an optometrist appointment on the same day. Because unfortunately she has my eyesight. We did make a deal when we got married that our kids would have A's vision (20/20) and my nice straight teeth with no holes. But it has not worked out that way!

El's cough is a little worse, so just keeping a close eye on how she's going. Haven't phoned the clinic yet as I don't think they would do anything at this point. Even more worried about her food intake now as she is also coughing up a bit of food (tiny amount).

sick

Well all three of my lovlies have a cold of some description. Not good. Doesn't seem to bad so far. Of course I am worried about El, particularly because her appetite has really decreased over the last two weeks and has now, due to this cold and not being able to breathe through her nose, decreased even further. After only putting on 200g in 2 months I am more then a little concerned. There is not a lot I can do. You can't force feed anyone particularly a very determined 1 year old. Maybe that is what bothers me most the fact that I can't do anything!

We have also doubled her physio, to help shift the extra gunk. At least its the holidays so I don't have to fit in school work as well.

motherhood

I have always wondered why I have been given these three children or any children at all for that matter. I never asked for children. Don't get me wrong I love my kids and am grateful for the opportunity to raise them, but why me?

My friend once told me that God has specifically chosen my children for me, it had never occured to me before that for some reason God matched us up. So if this is true, which I believe it is, then I should have the skills and resources and everything I need to raise them. Why then do I feel out of my depth so much of the time? Maybe that is just a human thing, I don't know.

People say God never gives us more then we can handle, with his help. Strangely enough this helped me through Em's operations because if God knows I can handle this, then I can handle it. Sometimes I don't think I can handle the unpredictability of CF, but no one truly knows what tomorrow holds, so am I any different from anyone else? Maybe holding on to the promise that God never gives us more then we can handle is all anyone can do? Enjoy today and make the most of it, trusting that God knows us, and what we need, and what we can handle, and what our children need and can handle too.

Having a low couple of days. Plans being cancelled, El has a dry cough again, the weather is miserable wet and cold (can't get the washing dry). Not very fair for the winter holidays. The kids are loving watching too much tv and playing far too much DS. Although a little house bound. I never tell them plans until I am sure they will go ahead, so they don't get disappointed. But I am! Some adult conversation would be really nice. Anyway, hopefully our plans for today will go through.

We did go to the library and pick up some books yesterday, so at least I have something nice to read!