Wisdom of a Four Year Old - Rewards

Context: As part of potty training, we used to give K candy for successfully using the toilet.

K: Can I have another lollipop.... it was a really long poop!

Back to the Hospital

J is in the Pediatric Intensive Care Unit of the Stollery.

We had to call an Ambulance for her last night around supper time.

She has been sick for the last few days. She is at high risk for pneumonia. Because she doesn't move much a cold can quickly become pneumonia. Most children in her situation get pneumonia and die, eventually. I expect that one of these times, she will not be able to recover.

She seemd to be ok on Friday. We have a caregiver come in once a week, on Friday. She had a daughter in J's situation, so when she is sick I always get her as a second opinion. We were both concerned, but she did some physical therapy we do in these situations and she seemed better throughout the day.

Several time I have taken J in to the doctor concerned that she might have pneumonia, only to have her be ok. Other times we waited too long and had to go to the hospital. This was one of the latter times. Yesterday she was coughing a bit and sleeping more than usual but I thought this just might be due to the cold and her body trying to get over it. I checked her again later and she was very pale. I picked up her arms and they dropped to her sides like a dead fish. Her breathing was very shallow. I knew this was not normal and more than just "cold" sick.

They sent us the paramedics and had to send the ambulance from Tofield as all the others were on calls. After putting in a breathing tube, we took the ride to the Stollery, siren screaming, the full meal deal. Thanks to everyone on Whyte Ave who moved quickly out of our way.

She seemed to be stable throughout the ride but as we arrived at the hospital, her heart rate dropped dangerously. As we started moving through the emergency ward, the paramedic monitoring her vitals announces "Heart rate dropping, 50. We have to move, now." Since her heart rate was around 120 at home when they were working on her, that is quite low. We start running through the ward with him calling out progressively lower numbers. "Forty-five. Forty. Now thirty-five. Thirty." I thought her heart was going to stop right there. They got her in and started working on her.

I have been the "Concered Parent" a number of times now, and I always find it interesting how the medical people deal with me. Not that they don't like the family/parents, but you know that parents can be add complications to their job. They are doing things that may not look nice to your child and you can see how a hysterical parent can be distracting. I find it interesting how they offer to get you to sit down (always in a corner where it is harder to see), and ask you all this background information such as name, date of birth, Alberta Health Card number (J spent a month in this hospital when she was born, what with computers I am sure they have all this stuff). The one thing they do ask which I like to answer is about her condition, is she usually this pale, what other hospital stays, etc. This information is useful, might help them and it does serve to distract me.

They got her stabilized and up to the PICU. The wife and K came to pick me up and we left at about 11 pm last night. I am about to leave to spend some time with her. We called this morning and she is stable although the nurse told me that her heart rate is down a bit. They think this is due to all the drugs they have running through her system. They are taking her off some of these slowly, so things should go up.

Thanks to all the doctors, nurses and EMT's who helped my daughter last night.

Wisdom of a Four Year Old - Growing Up

K: Mommy, what will I be when I grow up?

Mommy: Anything you want, Sweetheart.

K: OK. Then I will be a Grasshopper.

Wisdom of a Four Year Old - Reality

I am going to start a weekly feature here at MLWGF called wisdom of a Four Year Old.

K has said a number of things that are funny or profound. I will post a new one every Friday and include some context if necessary.

Wisdom of a Four Year Old - Reality

K: Daddy, how do I know that when I wake up I am not still in a dream?"

Me: "I don't know."

You Don't Win Friends With Salad

The wife and I are fans of The Simpsons (the older seasons, when they were cutting edge, not the crap they put out now). Without The Simpsons, we might not have every been married, but that is another story.

About a year ago, we were watching the Lisa the Vegetarian episode, most famous for the above clip. Lately, I have been going a bit crazy and have started to sing all sorts of weird songs when driving with the kids in the car. Mostly jingles, kids TV songs, or nonsense, made up on the spot songs. K recently picked up on this habit and, out of the blue, started singing "You don't win friends with salad" while we were driving in the car. I, of course, joined in.

After a few minutes of this, I realized this may not be such a good thing. Four year olds tend to say the things they have learned at inopportune times. I could see her telling some adult "you don't win friends with salad" during a meal at their home. Also, I thought she may get the idea that friends are something you are supposed to gain by giving them somethings. So I decided that I best explain that this song was a joke and how you should make friends.

Her reply: "But Daddy, you should be friends with everyone, even salad."

Best Book Ever

This book encapsulates what every parent feels at one time or another about bedtime.

Kneel Before the Power of the Fire Sharks

K's soccer team, the Fire Sharks, are crushing the opposition.

There are a few boys on the team that are a bit older than the average and have played before. Once they get the ball, they simply dribble down the field and kick it in the net. We try to keep it even by manipulating the lines. It got so bad that, during a game last week, the other coach asked me if I could do something so her kids didn't get discouraged, such as asking our team to ease off. I am not a big fan of telling kids to do less than their best.However, these kids are 4-5 years old, and the good players are very competitive. I knew that that would not work. We had to put all the girls on a line to allow the other team to score and keep it a bit even.

The most interesting thing is the difference in style of play between the genders. The boys are all aggressive and go it there kicking, even giving the elbow or a little push to jockey for the ball. K will go to the ball, but half the time she stops when she gets to it, as if to say "No, you take it this time." Other times she just runs after the pack, laughing to herself, not even paying attention to what is going on.

I guess my dream of her playing on Canada's first female FIFA world cup winning team is dead.

Surprise Brithday for the Wife

This month the wife turned 40.

I decided to throw a surprise party for her. Actually, I have been planning it for over a year and was going to do it last year.

The wife is very suspicious. Any change in routine sets off her spider sense. Once that is going, she starts paying attention to other things and builds up to figuring what you are up to. As an example, if she is on the couch watching TV I might ask her if she wants something to drink. Her reply will most often be, "Yes, but you are not getting any tonight." I, of course, reply with righteous indignation. However, she would be correct as to my motives.

Suffice it to say, for a variety of reasons, she is very attuned to any changes in behaviour or activity. You can see that presented real challenges to pulling off a surprise party.

I thought about doing the surprise for her 39th, but that seemed sort of lame. So I started the planning last year. The party itself was very easy, BBQ in the backyard and invite all her friends. The hard part was keeping it secret.

To pull off the surprise I used a combination of secrecy and misdirection.

The first part was to say nothing to K. I forbid those who were helping me from saying the P word (party) in her presence. We had a family only party before the surprise party, and K gave away some of that. The wife even asked K some questions, trying to get information out of her. Luckily, K did not know anything and 4 year-olds have a problem with linear time. The wife told me later that when she hit up K for info, she said something about a party, but started giving her info about the family party, as if it was still to happen.

To help keep the surprise, all communication was done by email. I forbid anyone from calling me on the phone. Our phone saves all received calls, so I started deleting those on a regular basis, a few months prior, to build up a pattern. During the day as I surf the web, I usually keep my browser open and she often uses my login to surf when she comes home. I was sure I would forget and she would see my hotmail open with "Re: Surprise 40th birthday party" on an email header. I had to password protect my login. I thought this might be enough to set her on the trail, but I had a few things going for me. I had kept a password on my login before, and, just before I was going to put up the password, K got onto the laptop and closed all my tabs on a bunch of stuff I was reading. I made a big deal about this and then put on the password.

The misdirection was the most important part of the plan. She put on a surprise for my 40th, so no matter what, she was going to expect me to do the same. My plan was twofold. Have a family, low key party and rely on my reputation as a lazy, insensitive husband.

Her actual birthday was a week before the surprise. She had asked me to go to a dance with her the night before. She is always appreciative when I attend these functions, so that, plus a spa day I gave her (the thing to get her out of the house on the day) should be enough as a present. I got a friend of hers to go with her (to keep her under control), but even that raised suspicion. I had to coordinate with her to ensure we had our story straight, as the wife was sure to ask her. The story was I happened to bump into this friend and had mentioned to her that I had got the wife a spa day. The friend had then said that she had been wanting to go to a spa and would go with her. Again, as luck would have it, I actually bumped into her friend before this was to happen (although the story was already coordinated by email). One cannot just mention this to the wife. If you just start to tell her stuff, she will get suspicious as to why you are giving out this information. Luckily, I had K with me. One of my routines is to have K tell mommy what we did today. This was a great opportunity to get the information out that we had seen this friend and set up the plausible reason as to why she was going with the wife.

A funny bit to this saga, the friend who was to take her to the spa invited her for one of these Tupperware type parties (but it is not Tupperware, its something else that I cannot remember). The wife thought that this might be the surprise. She must have been so disappointed going into the party.

In conclusion, the surprise was a success. I think the wife is a bit upset that she was not able to figure it out. She prides herself on detecting these things. When I asked her if she was surprised, she played it down a bit, but I know I got her. She just doesn't want to admit it.

Future surprise notes: One may not wish to use a spa day where they get a deep tissue massage, to keep the surprisee away from the party. They tend to look tired and underwhelmed. Not the best way to act when you have 20+ people at your house.

Not A Good Dad

I don't like the kind of father I am turning out to be.

K asks a lot of questions, makes a lot of demands and statements, as any four year old will do. I seem to get exasperated with her very easily. When I am doing something I tend to focus on it to the exclusion of everything else and any disruption or interruption is unwelcome. It forces me to change my focus. It is never a problem with adults, but K will fire off a constant stream of statements, usually when I am having difficulty dealing with her sister. I cannot keep the exasperation out of my voice when I answer " Yes, K".

I find that adults tends to think kids understand less than they do. K is smart, I think she already knows that her dad's answer really means that he does not want to talk to her right now. That is not how I want my relationship with my daughter to be.

J is sick, she has a viral infection. Infections and colds are dangerous for her. Because she cannot move around, the usual was of clearing ones lungs are difficult. Most children in her situation die of pneumonia or something related to it.

When she is sick I get worried and stressed. Last night I was holding her for 30 minutes while her body spasmed with coughing, as we tried to get the stuff out of her lungs. During these times, my worry is at its peak, as I deal with the feelings of helplessness, guilt for not doing enough and the what ifs. Of course, it is during this time that K will come up to me and demand juice or tell me that Santa's elves are very talented. Wrapped up in my own worry and doubt, I cannot keep the exasperation out of my voice.

I am pushing her away with my tone. Someday soon she will realize it, if she has not already.

How can I change these feelings? Will I lose both of my children, one to early death, the other to her father's rudeness?

Introducing the Fire Sharks

We signed up K, who is now 4 years old, for soccer this year with the local association. I got wrangled into being the coach. I played soccer up until University and am familiar with the game. take anyone's job I signed up to be an assistant coach. soon after they called me up desprately asking me to be the head coach. At the U6 level, the coach is really the guy who brings the equipment and collects the jersey security cheques from the parents.

However, one of the key things you have to do is pick a team name. The association sets your team name like NASCAR, so everyone is Team (last name of the coach). It's not like I paid for the team, so I don't think naming it after me is appropriate. I decided we would let the kids decide, so before our second game we had a vote.

Due to me being the last one to pick up our jerseys, we got silver as our colour. I liked the name the Silverbacks, but another good suggestion from one of the players was the sharks. Unfortunately, by the second game he had entirely forgotten about his suggestion and wanted to be called the fire hawks.

We put it up to a vote, and, of course, my attempt to dodge any responsibility for the name failed as three voted for fire hawks and three for sharks.

Coaches command decision: Fire Sharks.

Adventures in Beekeeping - Prelude

We have decided to take up Beekeeping as a hobby.

When we moved out of the city, part of our reasoning was to have a bit of a hobby farm. We wanted to have a dog but I don't beleive in having one unless you have lots of room. Also, being more independent, living off the grid, all those things appealed to me. So anything that helps prepare for the Zombie Apocalyse is of interest to me.

Why Bees? Unfortunately, the left wing wife is a bit squemish when it comes to the harvesting part of farming. I am no expert (we both grew up in the suburbs), but the point rasing your own food is to eat it. The wife wants to have all kinds of animals but she refuses to eat them. I am not having a herd of cows or sheep just to watch them die of old age. That is a pretty expensive (and tasty) herd of pets. We are not so rich that we can afford to feed all these animals and not get anything back. We already have two children, I am not adding more unproductive animals to the mix.

So why bees? They are a compromise. They are relativley cheap (I spent less than $500 for everything needed to get started) and it is not such a big deal if I screw up and kill them all. They need some care, but not as much as many animals, and if you neglect them the most likely result is no honey, as opposed to a stinking cow carcass.

And if we get our place designated as a hobby farm, I can cut my property taxes by half.

Posting Again

I am going to start posting again. Things have been busy around here. With the kids growing up and various new hobbies we are pursuing, there might be stuff worth posting.

This blog will focus on the following (in no particular order):

Deal with the left wing wife
Dealing with the kids
Taking care of a severely handicapped child
Country life around our 20 acres
Beekeeping (just started it yesterday)
Politics

So expect a wide variety of stuff with a focus on the lighter side.

If anything I post interests or informs you, great. If not, too bad.

It really is more about me, not you.

Thank you Al Gore

Here is a picture taken of my back yard on Friday.

Global Warming my ass!

Normally, there is so little rainfall in our part of Alberta, I can go much of the summer without having to cut the grass. Spring is the time I have to do most of the cutting, and this spring has been very wet. I consider spring begun when I have to do my first cutting.

K did get one last chance to build a snowman. The snow was think and easy rolling. I had cut the grass twice before this snowfall. With the two cuttings, there was a lot of mulch on the lawn.

She named the snowman "Grassy".

Irony thy name is The Laugh Shop

The wife had her birthday on Friday, so I took her out for Indian food and to a local comedy club called The Laugh Shop.

Now, I have been to comedy clubs before. I wanted a seat not too far in the back so we could see, but not too close to the front, so as not to be in the firing line. Guess where they put us? The club is very small, so our table was to one side, practically on the stage. The light was shining in my eyes and it felt like we were on stage with the guy. There was another table beside us, in the same situation, however, those people did not show up. On the other side of the stage there was a large party so their tables were pushed together, out of the light. Even the front row, directly in front, was less obvious than us, as they were out of the light and much lower than the stage. Ironic.

I was the biggest target all night. To be fair, I offered us up when I volunteered that the wife was having a birthday. Of course, the guy focused on me instead.

His name was Mike and was from New York, and served as the opening act for the headliner. I actually thought he was funnier than the other guy.

After picking on some poor blue collar, already half in the bag already guy Trevor, he focused on me. His main thing was suggesting that I was "retarded", that I thought my family were pickles, and I was going to my house on the moon after the show. He called me "Pickle" all night and did the stereotypical mannerisms of a "retarded" person. The crowd thought it was funny. I, less so, seeing as I was the butt of the jokes.

As our daughter is severely mentally handicapped, the wife was not too impressed and was going to write about our situation on the back of the comment card. I stopped her. Some of you may know of a case brought up to a Human Rights Commission in B.C. where this comic made fun of some lesbians. Comedy can be hit and miss, but I would rather the guy be free to say what he wants. Writing on the comment card would do nothing, except perhaps for the owner to refuse some acts because they might offend. Being offended is a chance you take and I would rather take that chance than have censorship.

I did not get a chance to bring up the situation of our daughter. Too bad, I thought that would be really funny, in a put-the-comic-in-his-place sort of way.

The sad thing is, I wish and I pray that my daughter was only as mentally handicapped as the stereotype that Mike portrayed. Imagine if J could walk, talk, take interest in things and smile.

That is irony.

More posting

Well, things have been a bit busy around the house for the last few years. However, I think it is time to start up this blog again. I will begin posting, some recent stuff and also looking back and updating on our lives.

Update: You may find things a bit disjointed. I will be writing about the last 2 years as well as what has been going on recently. It's my blog, so you will just have to suck it up.

The Challanges of being a Stay-At-Home Dad

Let me be completely honest. I didn't think taking care of the kids would be very hard. Cooking, washing clothes, etc, it's not that difficult. My opinion hasn't changed. What has changed is my appreciation of the mental aspects. I had no idea my sanity would be taxed this much. I wanted to have kids, and found, for the most part, I enjoyed dealing with them. I helped teach taekwondo for a few years, so had some small measure of an idea what they were like.

I am still able to deal with my daughters in a way I am happy with, the problem comes when I get frustrated, angry, etc. This, I think, is when most parents act or deal with their children in a way that they are not proud of. We are all human, we all make mistakes The key is reducing those moments to the smallest number possible.

The main mental challenge I face is the isolation. Two year old conversation consists mostly of "Don't do that", or "Put that down!"interspaced with "Why are you crying?", "Tell Daddy what you want", and "Use you words".

In order to keep from going insane, you have to get out. Unfortunately, a few things conspire to make this difficult. Firstly, I am a bit of a home body. I like to stay at home, in my sanctuary. Having two the same age also makes it more difficult, as well as Jocelyn's situation.

But the last thing is the most difficult. People can claim otherwise, but the only reason any parent takes the kids anywhere is to talk to other adults and have an adult conversation. The kids don't really care. My daughter will find a cardboard box or a rock as interesting as a trip, so why go through all the trouble of getting them dressed, getting diapers, toys, wipes, food, etc together just to go somewhere when they would be just as happy at home?

It's for the parents.

That is where being a man is a problem. In this area of Alberta anyway, being a stay at home dad is still a bit of a novelty. Based on my own observations, 99.9% of all stay at home parents are women. When the Wife was pregnant, she came across a stay at home mom group advertising at the local mall. She asked if her husband could join, as he was going to stay home with the kids. They laughed. They were tripping over themselves once they saw she was serious, but, even with all the crap about equality over the past 20 years, it did not occur to them that she might be serious.

So how to join one of these groups? Although I am sure I would be outwardly welcomed, (politically correctness and all that) I feel a bit uncomfortable. It is always all women except me, and I feel like an outsider. I feel like the only guy at the slumber party and I am somehow inhibiting these people from being themselves. I understand that, as any group of guys is not the same when there are women in the group. Besides, they want to talk about women things, which I am not very interested in. The only thing we share in common is raising kids, and that is the last thing I want to talk about. The only solution is some sort of Dad group.

As you can imagine, in our area there are plenty of mom groups around. Dads, not so much. Stay at home dads are somewhat like sightings of Bigfoot or the Lock Ness Monster. When people find out I look after the kids, they often say they know a friend of a friend of a friend who stays at home with their kids. However, no one knows their names or has ever met them. So far, I have heard of two other men in our town looking after kids, and both of these had all the detail and credibility of a Bigfoot sighting.

If there are any guys in the Edmonton area wanting to prevent kid-induced insanity, drop me a line.

A Severe Lack of Posting

I haven't posted on this blog for over three months. I just haven't felt like it.

Well, that is not completely true. When the problem with my daughter came about, the focus of this blog changed. The political of differences in world view between my wife and I became less important. I hoped that this blog would be more about dealing with our situation and would provide information to other stay at home dads and those dealing with one mentally handicapped twin. A somewhat small set of people.

I hoped that this blog would provide information and support. I hoped it would provide hope.

And that is the real reason for a lack of posting. The truth is I have not been very hopeful these last few months. In fact, I have been depressed. More depressed than I have been anytime in my life.

I think I am a generally upbeat person, more about getting on with it than wallowing in mistakes or situations that I could not change. I recognize now that there have been difficult times in the past that have affected me. But never has it been this bad.

The truth is I am not interested in getting up in the morning. Each day is exactly the same. Get up, change babies, stop one of them from doing various things, encouraging others, feed them, make dinner, put them to bed. Repeat until death. In fact, I have spent more time in escapist pursuits, such as reading, to make me forget about my situation. In fact, I am like a crack addict, my life being counted out between "hits", except my hits are those times when I can forget that my life is all about menial tasks that never end, and will never end because one of my children will never be able to take care of herself in any way.

I have more respect for my stay at home mom than ever. I don't know how she did it and I have felt many times over the past few months that I cannot. I always thought I would be a good father. Staying home and looking after the children has made me question that.

In addition to constantly questioning my fitness as a parent, there is Jocelyn. I can't help but be depressed every time I think about her. With what limited mental capacity she has, I can still see a personality there. All I can think about is the lost potential of her life. And the close sister that Katherine is missing out on. The unique experience of having an identical twin, which should have been a wonderful experience for both of them, is gone.

And then, in moments of my own selfishness, I think of myself. The one thing about having kids and going through all this with them is the thought that they will eventually grow up. I can survive a few years of changing diapers and blowing runny noses if there is light at the end of the tunnel. Except there is no light. Jocelyn will never grow up. For the rest of my life or hers, I will be looking after an infant. The only release from this obligation will be death of one of us. Since if I die I won't care about getting my life back, the only way my family will ever be normal is if she does. And it is a likely occurrence. Most kids in her situation survive five or ten years. So, my salvation from a life of being responsible for every aspect of my child's life is her death. I hate thinking this. Yet I cannot imagine what life would be like without her and I would miss her terribly. So, release from this obligation means a giant hole in my life and the guilt that some part of me, however small, wished for it to happen. Or I can continue to have this obligation, with no end in sight and the feelings that go along with it.

I have heard how often some people, after many years of life, are accepting of death. Either they feel they have lived a good life or welcome death as a release from pain, physical or emotional. I never understood that. I always thought that I would want to live forever, always interested in what might happen next and in seeing everything there might be to see in this universe.

Not anymore.

How you know there is nothing they can do for your child..

...when they start to focus on you.

Yesterday we took Jocelyn for her appointment with a specialist who focuses on the problems with her spine and hip. We got pretty much what we expected, but some, sort of good news. Although her spine is curving and will likely eventually bend her so it starts to compress her organs on that side, there is a small chance it may not progress any further. Also, it will take many years, (probably 4) before it gets that bad, so we have time. The same thing for her hip. Although it appears to be starting to dislocate, there is a chance it will progress no further. We have about 2 years before that becomes critical. We can pretend to be a normal family for a bit longer.

The real interesting part comes after talking about her. This is when he talks about us, the parents, and alternative therapies. Alternate therapies are those with no studies showing they work or do not work. Alternative therapies range from stretching (no studies prove that this will help with her hip) to all sorts of weird, witch doctor type stuff.

effect, something like 40% of people will report improvement from anything as long as they He did not propose or endorse any of these things. He made it clear it is up to us and that we must look at it. (The wife has been doing a lot of research on this stuff and seemed to know more about some of them than he did. Also, due to the placebobelieve it may help.) The only caution he gave us is the effect that alternative therapies can have on a marriage and families. There are people who have mortgaged their house to pay for this stuff. As well, usually one spouse wants to try anything while the other thinks there is no point, and this leads to serious problems when the family is poor and living on the street and one spouse thought it was a waste of money.

So, it seems that since there is very little we can do for our daughter, the biggest problem we face is dealing with the effects of that and the possible break up of our marriage/family.

For me, I want to do what is best for our daughter. To me, that seems to be making her as comfortable as possible. At this point, there is nothing we can do to treat her problem, only the symptoms. I am not willing to mortgage the farm when it won't address the problem.

If there was even a slim chance we could treat the situation with her brain, I might feel differently.

Try these shoes on for a while

Robert Latimer is back in the news. He was up for parole this week after spending the last 15 years in prison.

There has been some discussion of this issue at SDA and Halls of macadamia, two blogs which I frequent.

I wanted to give a bit of perspective on this issue from someone who may be facing it in the future. My own opinion of Mr. Latimer is that while I don't condone what he did, I can understand the circumstances. He has more than paid his debt to society and should be released.

A lot of the comments I have read on this issue come from people that I think have not examined the situation.

Try this.

Look at your child. Bring up all the feelings you have for that child. All the love, the desire to protect, the feeling that you would do anything for that child. Now, imagine that when that child was 3 months old, you were told that, not due to anything that anyone did, through no fault of your own, it just being "one of those things", your child was severely brain damaged. Although that is not exactly true. The truth being that she does not have much of a brain to damage. In fact, you figure her brain is about 25% of her twin sister (the doctors don't tell you this, it is your estimate, based on the fact that her head is noticeably smaller than her sister and you saw the scans of her brain, and there was significantly more black areas (areas of nothing, just fluid), than white areas).

At your pediatrician's you ask how long she is expected to live. He says 5 years, 10, maybe 20, maybe more, we just don't know. However, he will tell you that he he has never seen a baby with this much damage survive (the doctor is in his sixties and has probably been practicing for over 40 years. He is well known throughout the city and is respected as a good doctor). He then suggests that you may want to consider how much you want to treat her when she gets sick. He tiptoes around the point by stating that in most of these cases, the baby gets pneumonia from fluid in the lungs and most parents deny extreme measures (ie antibiotics. (when did antibiotics become extreme?)) and after a few bouts of pneumonia, probably over a number of years, the patient dies.

Your wife drives home because you can't stop crying. And I mean crying, like uncontrollable sobs, while the words, "how can I make a decision to let my baby die" run over and over through you mind.

Fast forward one year. Your daughter is not in pain, but it is a struggle to get enough of the food she needs through the tube in her stomach. She throws up at least once a day, and you have spent the last year changing her feeding habits, formula, time and the rate in an effort to minimize it. When not asleep, she sounds as if she is fighting to breathe and not to choke. You have an appointment next week where you will discuss what to do about the fact that her muscle contractions are starting to force one hip out of alignment and she will probably dislocate it soon. Her spine is severely curved, even for a baby so young. At least she doesn't have seizures (they think she does not have enough brain matter to have them).

class or girl Now consider that, with such little brain matter, she is not going to get better. Her quality of life will not improve past that of a month old baby. She will never walk, talk, or feed herself. She will likely never reach for anything voluntarily, to form a desire to do something and then do it. She will never be able to say I love you daddy. You are not even sure what she can see or hear, although she does seem to, at times, turn towards the sound of your voice. You decide that you will take that as a sign that she knows that you are her dad and you will hold that as tight as you can.

However, you cannot live in a fantasy world all the time. You have to fact the facts. No amount of physical therapy, visual therapy, stimulation or anything is going to improve her quality of life, even though you do all of them. What else can you do? She is your child. Now, imagine forward ten or eleven years from now. The curved spine and hip are not going to get better. All they can do is slow the rate at which they progress. What will her hip and spine be like in then, if she is even alive? How much pain will she be in? What will her quality of life be like. Remember also that you have other children. You want their live to be as normal as possible. Do you want your other child to miss out on ballet and girl guides because of her sister? Do you want them to begin to resent their sister? What if your disabled daughter outlives you? She is your child, it is your duty to care for her, but do you really want to burden her sister with that when you die?

Welcome to my world.

Try putting yourself in Mr. Latimer's shoes before you condemn him.

Annoying Telemarketers

We recently got high speed internet access. Before, I would spend much of the day connected to the net at dial up speeds, browsing blog, read news, etc.

Now the phone is free. This is a good thing, as now I don’t mess calls about Jocelyn’s medical appointments.

However, the down side is now I am rushing to answer the phone and am getting all the telemarketers.

Citibank is the worst. We don’t have any business with them at all, which I suppose is why they are so insistent. They got the wife’s name somehow and they call at least once a week. Of course, she is never here when they call, so they always say they will call back. I few times I pretended to be her, just to see what they want (They don’t even have her first name, just an initial, so you know they are selling something). They just want us to use their credit card with the “new, low introductory rate offer”. How stupid do they think we are? Nine percent for the first few months then up to 18.75% and a yearly fee. Some deal.

Once, I thought I would test them a bit (Sometimes its nice to talk to an adult) I said I was interested but my present credit card has no fee, and I want a lower average rate, what can you do for me? The silence on the other end was deafening. They actually hung up on me.

Of course, that gets tiring real quick. So after only a few days of answering the phone where 90% of the time it is Citibank, I have had enough.

The next time they call I am going to threaten them by saying I will blow an airhorn in the phone if they do not stop calling. A Man’s home is supposed to be his castle and time is precious. I shouldn’t have to spend a portion of that fighting off salespeople.

Oh, and don’t talk to me about do not call lists. I should not have to call someone to tell them to stop calling me. I should be able to tell them when they call not to call anymore.

Why would I ever want to be their customer if they do not respect my wishes not to call me?