MWNews 259

William

 I should mention that when William was born, I was preparing to go into the hospital for open heart surgery. So not only was Juanita dealing with the pain her pregnancy was causing, she had to worry about me and surgery. 

I am pretty sure her parents were here at that time. Someone was here with her. The birth itself was nothing really to write about. I don't remember any issues, other than William was in the wrong position again, so they delayed the birth for a week or ten days. I have no idea why, it was going to be a cesarian again, so what difference does the position of the baby have to do with anything. I suppose I just don't know enough about it.

And come to think about it, how was I able to take all that time off work. I was off for I think two months. I was working at CSC but had only been there for a while. How did I have that much time off for this. And was I restricted when I went back. I was in charge of stuff, so how did that work. I don't remember and I don't really care at this time, so let's leave it at that.

William was the baby. Maeghan loved the baby. I do remember stories about him having to eat every two hours. Juanita would have to get up and feed him all the time. He was big and getting bigger. I suppose it didn't really effect me as I did not have to feed him, but I am told it was every two hours. Actually, I have no idea if that is a lot of not. How would I know. Seemed ok to me, I'd like to eat every two hours, so if you can get away with it, go for it. William had the right idea.

Me not being able to lift him or anything was probably also a problem, but I don't remember it being an issue other than getting yelled at when I did something I was not supposed to do. A quick story about what I am sure I have written about before.

The most painful thing about the surgery, and they told me there were a lot of things that would be bad but I never noticed them being that bad. The worst thing was when they pulled the staples out of my chest and leg. Especially, around the ankle. That hurt. I think it is because they cannot really numb the area, just the skin or something, but when they pulled the staples, and they are giant staples, when they pulled them out of the bones, that hurt. Just wanted to mention that again, in case anyone is thinking of doing it. The operation, don't remember it, but the staples, that I remember. But that is my story and not William's.

The problem with William didn't start until he started moving. Crawling, scooting, and then walking, he was always on the move. All the time, anywhere, no matter what else he was supposed to be doing. He would crawl around his bed. He would try, and eventually succeeded, to pull himself up on the crib. He just always wanted to be moving and investigating something. You had to constantly watch him. Turn your back for a moment, and he had climbed out of his crip, climbed up on something, crawled somewhere he wasn't supposed to be. He was on the move. Even if you were holding him, if you turned your attention away for a second, he was trying to get away and into something. 

Around the house, it was not really a problem. You just had to watch him and make sure he didn't get into the cabinets, or up on the counters, or under something. He would open a drawer in the kitchen and climb up on it, then open another drawer and climb into that and then he could reach the counter and would get up on there. I think he only made it a couple of times before we caught him doing it, but getting into the cabinets, you sometimes wouldn't notice and then spend time looking for him and where he went.

The big problem came when we went out. We like to go out for coffee a lot. Just go to the shops and sit and have a coffee and relax. That ended with William. It was two years, maybe more, where we did not go anywhere. He was just too much to deal with. One of us would have to constantly keep an eye on him while the other had coffee. It was not fun. He never did the screaming kid thing, but he did not stay still and was always trying to get out to explore. Strap him in, he would struggle and struggle to get out and a lot of times, he would figure it out and get himself out of the straps. 

He was just curious I guess, and not just in what we were doing. He would go to other people and join them or climb over them to get to something if we would let him. He would just make a nuisance of himself so eventually, we would just have to leave and go back home. After a while we just stopped going. For about two years. It wasn't bad but that kid was the definition of rambunctious. And I have no idea if I spelled that right. It says it is ok but it gave me three options and all of them looked right, so I went with that one.

I don't think William ever grew out of it. He just learned to do it without bothering other people of making a nuisance of himself. He just became William. Curious, always asking questions, looking into things on his own. I know with Maeghan and all the attention she got from doctors and everyone else, he felt kind of left out and I am sorry it had to be that way. Maeghan always had something we were worried about and had to talk about so he didn't get to be involved. I think it has affected him more than we realise over the years.

I am very proud of William. He does things that I would never think to do or think about him doing them. I don't want to bring religion into it, but when we have gone to church or a meeting or something, he talks to people, asks them what is wrong or tries to talk to them and help them. It is just amazing. I don't really want to encourage it, but it is sometimes one of the most amazing things I see. 

He doesn't have a lot of friends, now or ever. He is a bit too sure of himself to really make friends that stay with him. I have always thought he would grow out of it. It is just typical kids or boy stuff. Always has to have a word in the conversation and really tries to express his opinion. Problem is, most of the time he is wrong or exaggerated or just not really straight with the facts. But he tells it to you like it is the only thing that means anything. I love William, but sometimes he is just wrong and I don't want to discourage him from expressing his opinion so I just let him go. But it gets him in trouble with his friends.

William, if you ever read this and I doubt if you ever will, I love you and I am very very proud of you. I am waiting for you to set your life up and get into what you want to do before I really let you know how I feel and try to guide you but I feel I have left it too long. I don't want to discourage you. You keep doing what it is you do and eventually, you will find people that appreciate you for you and not the over-exaggerated stories you try to tell. I have seen it with all teenagers and kids and especially boys, but I know you will become better for it and I will continue to be the most proud of what you have accomplished. Don't let anyone ever tell you you are disadvantaged or anything. You are special and you will make a good life for yourself. I love you.

And with that, I will end this entry. I think I have told most of the stories I wanted to tell. I will now move on the general entries like I used to do. Or, maybe not.

Later

MWNews 258

 Maeghan

Maeghan's second operation was a bit more complicated, or so we were told. They were going to try to fix the split in her spinal column up near her neck. This is the one they had been waiting for. It was the one that would determine if she was 'normal' or if she would be paralysed or worse. I say this over and over, but I don't remember when this happened or how old she was. I am pretty sure it was before she was 3, but I don't know how much younger, or maybe older. I don't know.

The operation itself was supposed to take about 8 hours, I believe. A long time with not a lot of news from the room. I don't know how many doctors were to be involved but I think there were a lot of observers. I am vaguely remembering this, so I am probably getting some of it wrong.

We had to go through the putting her under again. I don't remember if she was walking yet. She didn't walk until she was about 2, so it could have been before that but I don't think so. She was walking and talking. She was always talking. I have probably gone through some of this in the earliest blogs so I should go back and read them to make sure I am not contradicting things. But I won't, go back that is. So if I tell the story differently, the earlier ones are more accurate, so ignore them and try to follow along with the new story.

I really have no idea what they actually did. It was to fix her neck. What that involved is beyond me. Strange that I have not done more research on it. That is what I would normally do, but phones were not what we have now and I was probably using an old flip phone. I know I had the Nokia Navigator back then, for a long time. I loved that phone. But it did not have internet and I am pretty sure no one had heard of an iPhone, so looking things up was not an option.

Juanita seemed to think that Maeghan's spine was split into three but I don't know where she heard that. Maybe they said something at some point or maybe we were just looking at pictures and we didn't know what they were showing us. The surgeon that was doing it said there was just a split and he was going to attempt to repair it. I don't know, but no one ever said three so I will discount that as Juanita misunderstanding what was happening.

I don't remember watching William, so that is why I think it was before she was three. William was born when she was after that, so I think it was when she was two or something. Guess it doesn't really matter.

Maeghan came out of the operation with no issues. Then again, how would we know. We had been given so many warnings about what could and probably would happen, that just having her still with us was the happiest we had been. The doctor came out and was all excited and said everything had gone really well and they had fixed everything. He seemed really pleased so we were really pleased. He said things would show up later in life but for now, everything was good. She wasn't in danger of losing her ability to walk or anything for a while, so it was all good. They had stabilized it and she didn't have any outstanding issues. She still had the fused spine in the lower part of her back, so she would still be small, but for now, she was fine and has been ever since then. Still don't know what the ramifications are for the future, but it was all good back then.

Which brings us to the walking and talking stage and Maeghan being the cutest thing that ever was. I have told those stories before and I might go into a few of them again, but we were happy at that point and could focus our attention on having William and making sure Maeghan was ok.

This entry is kind of short and I was going to go into the whole shoe debacle, but I think I will just end it being short. I might have to actually go back and read some of the other stuff so I know what can be repeated and what needs to be told. Not sure when, I am once again doing this at work, but should be soon. Maybe even today. I need to continue the William story, so that will take some time. William didn't have any problems, he was just such an adventure and I need to emphasize that a bit more than I think I have in the past. 

But that can wait. Have work to do.

Later

MWNews 257

Let's just do a free for all entry. Just kind of some random thoughts and adventures so I can take a break from the heavier stuff.

Of course, I am at work. It is Open Day. I have probably described it before. The school opens the doors for all visitors and students, parents, grand-parents and friends come in. It is mostly a showcase for new students, so they can come in and see if they like the school. I am not sure what the percentages are on each group. I am told 8000 to 9000 people come in each year but I don't think there is an actual count anywhere. Mostly, it is each house group creating food and selling it. Some crafts, but not many. They even have a bar this year. I am told they had one last year but I don't remember it. I can't really imagine an open bar at a school with most of the students still here. Why is that allowed. Not my job. 

My job is to sit in the IT reception area and direct people through to the main areas. When I first started, we closed the doors and no one was allowed to come through, but it is different each year. Last year, IT had their own booth but not this year. Anyway, that is what I am doing while I type this. Probably go get some food soon. I have more than the usual amount of parents through, so I hope that doesn't last.

It is Juanita's 60th birthday in November. We are planning on a trip to Tasmania as none of her family or friends are here. I am in the middle of planning that. Airline tickets, where to stay, car rental and then trying to figure out a place to book for lunch and dinner. 

I say lunch and dinner because some of her older relatives live in Tasmania and they are in late 80's and 90s. They go to bed early, or so I am told. We have talked to someone over there and they are going to arrange a lunch at the casino for all of them. I think there will be 10 or so at that lunch. I am told they go to the casino all the time, so that is a good place to meet. I don't know if anyone else is planning on attending but he said he was going to make all the arrangements so I am not worrying about it. Dinner is going to be the real problem.

I am assuming we are going to have her close relatives there. Her brother and his wife, her sister, and then the nephews and their wives. I am not sure how many or if they will come. She also wants to have her friends at the dinner. I am not sure they will come, or not all the ones she has mentioned. I am sure some of them will, but not all. About 30 or so. Now I need to find a place that can accommodate them. And with that many, I am sure I will have to make a deposit and I am also sure they will not turn up. Ten or so at the most, but she wants about 30, or more if their extended families come. It is a logistical nightmare.

I haven't actually looked at a lot of places, but I need to start. There is a really nice restaurant in the casino that I would like to go to, but it is expensive and that would put most of her friends off. There are a couple of seafood places that I just thought of, so maybe I will check them out. For one of her brother's birthdays, when we lived there, we went to a really nice steak house. But that is way out of the price range I am looking for, even for me it would be prohibitive.

I looked at one Japanese Hibachi place. Lets just say for one person, it is about the price I am expecting to pay for four. So that's out. I even looked at some farm where they only do special occasions with reservations months in advance and you do not know what they will be serving that night. No walk-ins for that one and it servers whatever they are currently growing on the farm. It sounds good, but probably not for the crowd I am bringing.

So, the hunt begins to find an appropriate place that does not price everyone out of and is still special for a 60th birthday. It would all be easier if I was at home or someplace where I could do the cooking. I hope we all remember the 40th birthday party. Maybe something like that, but I don't live in Tasmania and there isn't a place that we could hold that kind of party. I do not want to ask her brother, although that would be a good place to have it, or ask one of her friends, we have had things over at their homes before, so I am stuck with finding a restaurant. Wish me luck.

One thing that complicates the issue is the sister situation. I am not allowed to say anything to anyone, but I am thinking, who reads this. If I put it in here, no one will ever know. No one knows I am writing this again and no one knows I was writing it before, so I am kind of just talking to myself. It might be ok to say something here. I am still thinking about it, so I will move on to something else and see if I work up the courage to put it down on paper. Nothing bad, just a big, big secret. If I do write it, I might say some things that will offend people, so I am precautious.

Right now, I am going to get my free dinner for Open day. Staff get a free meal from one of the stalls. You have to tell them beforehand what you want and then they give you a voucher. I am going to get my curry. I had it last year and it wasn't bad. Could have used a bit more spice, but then doesn't everything. I should be back shortly and if I am not, read about it in the next free for all entry.

Ok, I have had my curry, I am settled in for the next two hours of people walking through and smiling and asking me if they are allowed to walk through here. Am I am ready for doing nothing.

So, the sister situation. I have decided not to write about it in this entry. She said she would make a decision by next week but I doubt if that will happen. I have always said she left it too late and there was no way she could make all the arrangements in the six month time frame she has allocated. It is just too big a decision for not allowing for everything before it happens. But I won't talk about it. At least for another week.

By the way, some of the girls up here are way too annoying. I don't know a lot of the girls, but apparently the most annoying ones flock to the IT area to hang around. Always trying to talk to me and tell me their life stories. Maybe they do it somewhere else, but I suspect they do it because I don't tell them to go away. I just let them talk and go about my work. Every once and a while, one of them will ask me if I am listening. I nod my head and that is apparently enough to allow them to keep going. 

And as I type this, one of them comes up and asks if she can take a photo with me. I am sure I am not allowed to do that, but we did it anyway. What are they going to do to me, make me retire early. I look forward to it.

I am tired of typing. I think I will be going. Sit in the back for a while and get away from all the questions and stories I have to listen to. You can't really say no. Someone will report you for being mean or worse. I was asked the other day if I had been searching one of the girls emails. Not sure why they are asking me, or I understand why as I am with the computers a lot, but in a good environment, they would know not only is it near impossible but I would not be doing that. But I understand that they have to ask. Apparently one of the girls told her parents the reason there was some search on their laptop was that someone in IT did it. Impossible, and not very likely with the crew we have. It just points to the lack of management skills I see in the IT department. But who knows, maybe I am wrong. I know I am old and critical of most things, so maybe I am wrong. An old man complaint, but I wasn't brought up in the business world to manage like this. It is the modern world and how things are done. No going back unless I want to run things again. I do not.

Later

MWNews 256

Maeghan

Maeghan was tiny. She always has been. There were no obvious problems that you could see, other than she was tiny. She moved, she turned her head, she would recognize you when you were there. Just a normal baby. We didn't see anything wrong. Still don't. She is just a happy little kid and always has been.

The doctors, on the other hand, kept telling us it wouldn't last. She had too much wrong with her that something was going to happen and everything would change. It never has. 

I hate the medical profession. I know, it's not their fault, they are doing their best, but this is just a long line of inconsistencies and lies and general incompetence I keep running into. But I am old and forgetful and really shouldn't have an opinion that counts. We live with it because it is all we can do. I generally find nurses very acceptable. They are helpful, concerned and they listen. They always are trying to do what you need to make you feel better. I have only found one, maybe two, doctors that really seemed to know what they were doing and were not just 'following the book' when you tell them what is wrong or what you think might be wrong. Not really helpful, but I have gone into this rant in the past so I shouldn't do it again. It is not the lack of brilliance I see, it is the non-caring attitude. What I keep running into is a lack of sympathy. They just seem to have people on a conveyer belt and just try to get them in and out as soon as possible. But, there I go again. 

Maeghan was doing so well. The doctors wanted her to be some kind of case study for something. At one point, we were told they only knew of 8 cases that were similar to hers in the entire world. I never really checked on that, but I know they contacted someone in Germany to discuss her case with that doctor. He had a little boy with kind of the same thing, but I think he was eight years old at the time. Actually, I don't really remember, but I think that is what they said. Nothing ever came of the case study as far as I know, but maybe she is written up in some journal somewhere discussing her condition. 

Maeghan had to have a couple of surgeries when she was little. Maybe three, but I don't remember. I know she had to go for a lot of MRI scans. I didn't have an MRI until just about a year ago and I can tell you, I hated it. Not really the scan part but having to lay in one position for that long with out even breathing funny. It was horrific. I have no idea how Maeghan did it so many times. Later, she has told me it was not good, but I never knew it back then.

I am not really sure which surgeries she had first or when they occurred. I know she was very little when it happened. What I am going to say is going to make me cry again, and I know a lot of parents have gone through the same thing. I would like to do something to support them and maybe I will after I retire, but it is not a good thing to go through.

Having to hold Maeghan's hand while they put her under anesthesia and not knowing what the results will be is about as terrifying as it gets. Told you I wouldn't make it, Be back to this in a minute.

I know one of the operations was to widen her spinal canal in her lower back. I think it was the first one but I can't be sure. They said they had to do that because it would cut off her nerves and she would be paralysed from the waist down if they did not. Looking back on it after all these years, I just have to say Really? I can't say if it had to be done or if it did not. They are the doctors, but with my experience before and since then, I am beginning to question it.

The problem was, or is, is that they had to fuse her spine on I think three vertebrae. This means she could not grow. She would always be small. because that part of her spine would never get bigger. Maybe it was necessary, but that has really defined her life since then. Not in a bad way, she is still Maeghan and the joy of my life, but it meant she would never be able to do a lot of things we take for granted. To this day, I am not sure we understand all the implications as it is still effecting her. But she is Maeghan. That is what matters to me. She doesn't let it define her life and I am there for her whatever she wants to do. Yea, I make a fuss about it and I get scared when she is trying to do something I think is not advisable, but she is Maeghan, smart and capable of taking care of herself, as much as I would like her to still depend on me, but another story.

I am pretty sure I covered the frog hop when she was little. That is how she got around. Up on her knees and hands and sort of hopped forward. I am thinking about it now and remembering how cute it was. It looked kind of painful but maybe that is just me being old and fat. She got around ok so I guess it worked for her.

I think I have told the stories of me sitting her up on the counter while I cooked. She seemed to enjoy that a lot. I have pictures of it somewhere. She would just sit there and watch. I'd give her something to eat or let her stir something every once and a while. I think she enjoyed it, but it's been so long ago, I don't think even she would remember it.

I am kind of forgetting what I was going to write now. I have some stories from later in life but I think there was something I wanted to get to before that. I'll give it a break for now and see if I remember later. Besides, work, crying, emotional crap, it gets to be a bit hard each time, so this is good for now.

Later

MWNews 255

William

Let's do a little about William, since I have so much trouble typing out Maeghan's. This one doesn't make me cry as much. William is more about being a boy. Lots of issues, but not life changing issues. Although, William has always been a bit life changing.

This one was again, IVF. I am pretty sure the girls were going to donate money for it. I don't recall if they ever did, but as I have said, Juanita seems to think they did. I am not so sure, but let's go with that. The reasoning behind this one was Juanita wanted to give me a son. I had no great desire for another child and I was happy without having a son, but she insisted and we thought we could manage it. 

Maeghan had always been such a calm and entertaining little girl, so we figured, we could do it again. It would probably be the last chance as I was getting older and Juanita chances of getting pregnant was going down, or so we were told. So we decided, let's do it.

Once again, first time, we got lucky. No need to try again and I had figured we wouldn't have done it again if it had not worked the first time, but we will never know. We were living on the Central Coast, north of Sydney, at the time. William was born in Gosford. Not a great place, but the closest hospital. I seem to recall we were informed that she was pregnant while we were up in Newcastle, on a day trip. I have no idea why I think that but it seems right. A text message or phone call or something. The girls were with us and it made us happy. I am probably remembering it all wrong and the news we got in Newcastle was for something totally different, but it's a fond memory so let's say it is true. Who's going to contradict me. 

I'd like to say the pregnancy was normal and there were no problems. I can say there were no problems with William. He seemed like a normal baby doing normal baby things. I seem to recall that they had trouble scanning him a few times. Sent chills into both Juanita and I, but the problems were he would not cooperate for the scans. He would always be in the wrong position or facing the wrong way and we would have to keep coming back for another attempt to get the pictures they wanted. The problems with the pregnancy were with Juanita.

I don't recall the exact issue, but there was something she had wrong. Endometriosis, if that is really a word, or something that was causing her pain. I don't remember what it was. But, she had to spend the last several months of the pregnancy in the hospital. I think it was four months, maybe three. Something like that. Now I am once again thinking, what did we do with Maeghan. I know I was working. I don't know who stayed with Maeghan while I was at work. I don't remember how that worked. I believe Natalie and Adam were living with us at the time, so maybe that was it. Or was it Angela and her kids. Two different places we lived and I don't recall which one we were in. Always had someone living with us, so they must have watched Maeghan.

I do know Maeghan and I spent a lot of time together. Maybe that is why we are so close today. We had a lot of time while Juanita was in the hospital. I remember talking to her and taking her to the park and stuff. Could be I am once again confusing memories, but I know we spent a lot of alone time together. So how did the time I was at work go. It would be nice to know but I am not going to try to figure it out. Let's just say we had a good time.

We visited Juanita everyday. Sometimes brought her food and stuff. Spent a couple of hours there each night but Juanita was not really happy about it. When we weren't there, no one else was visiting her. Not that there were a lot of family or friends to visit, but the ones that were never came up to see her. She made some friends at the hospital but they were usually in and out while she had to stay there the whole time. I know it was not a very happy time for her, but the pregnancy with William was going well, besides the other issues, so we were happy about that. Thinking back on that, I can't believe we decided to do it again, with the devastation of Maeghan's pregnancy, but I think she was such a joy, we wanted to have it again.

William was born, normal baby, although I think he was a bit large. I know he was late and they finally just did him. C-section again. No problems. At Gosford hospital, which was almost an hour from us. At some point, they were transferred to the private hospital that was near our house. Why she could not have been there the whole time, I have no idea. It was a much better hospital in a much better area. Probably a public health care thing, but eventually, they were allowed to go there, if just for a few days. I have pictures of Maeghan singing and dancing in the hospital room with William in the crib. A few pictures of her holding him, but she was so small and he was so big, you could already see the difference in size they were going to be.

Our problems with William didn't really start until he learned to move. Not walk, but the ability to get himself from one place to another. I'll have to leave that for another time as I have been typing two entries today and I feel sure I should be working. But, while Maeghan remained a little girl, William became something completely different. Looking back, I don't regret any of it and look back on it fondly, but that could be because I am not actually remembering everything. We still refer to William's childhood as a terror. We love him so much and he was just being a boy, but man, it was fun while it lasted.

Later

MWNews 254

 Maeghan

So, we were told the horrible news about Meaghan. They told us to take a few days and think about it. They scheduled more appointments later.

I have to say, it was devastating. From my point of view, I didn't really feel anything. I was numb. I didn't think about it, I didn't do anything, I just remember not feeling anything about anything. I am sure I went back to work, but I don't remember doing any of that. I must have, because it wasn't just a few days, it was a few months, so I must have been working. I just have no memory of it.

What I do remember is driving. I know Juanita and I would just get in the car and drive. I don't think we talked about it, I don't remember any plans, I just remember driving. All over the countryside. I can't tell you how long that went on, but I know it was every weekend for several weeks and after every visit to the doctors. I don't know what we did during the week, but we drove on the weekend.

We kept going back to the doctors. We were told all the possibilities, or what I assumed were all the possibilities. They told us she probably wouldn't survive. That, if she did survive until birth, she would most likely be paralysed from the neck down. That she would probably have brain damage. That there were all kinds of things that would not work. Horrible, horrible things that were going to happen to her. It was devastating, each time. Because they didn't just tell us this once, they kept bringing us back in and saying it again and again. 

And I can say, it had never even occurred to me until they said it, but the bastards wanted us to abort. They told us that several weeks after the initial diagnosis. I honestly had never thought about that. I don't know about Juanita, but that wasn't anything I would ever be prepared to do. It wasn't an option as far as I was concerned. After they told us that, and it was several doctors that told us the same thing, they had us go and think about it. 

Juanita and I never really talked about it, only once I think. We were driving, as we always were at that time, and she said she did not want to abort. I said I couldn't do that either, or something like that. As far as I was concerned, it was not an option. She agreed and I think that is the only time we ever mentioned it to each other.

They kept doing scans. Lots of scans. They kept saying they did not see any movement or anything. But Juanita kept insisting she could feel the baby moving. That she knew Maeghan was in there and moving around all the time. The doctors kept saying no, they didn't see it. You may think this would cause me to stop trusting the doctors. To be honest, my opinions of the medical profession did not start there, but I think this is where they solidified. This story isn't about that, but it lets you know some of where I am coming from and some of the opinions I still have today.

The head doctor was really bad. Maybe it was his job to give the bad news, but I don't think he was very nice or sympathetic, Again, maybe that was his role, but a lot of the other doctors were much better at the interrelation part. I don't really know because I was still numb, for most of the remaining pregnancy. I know it had to have been months, I don't really remember at what point we were told most of this. It had to be later in the pregnancy since Maeghan was supposed to be fully formed at this point. Or so I think it was. I don't know enough about it or remember the exact timelines of when things happen, but I think it was probably six or seven months into it when they found the problem.

As I said, I was numb. I don't remember going to work during that time. I don't know what Juanita was doing if I was going to work. I think Juanita's parents came over at some point. Maybe they were already here or maybe it was afterwards. I don't know. Maybe it was one of the girls, or maybe both. Michael would have been there. I just don't remember. Someone would have had to be staying with Juanita while I was working. I don't remember them being with us on the drives. I don't know. Maybe it is part of my disease, that I don't remember anymore. Maybe it was just too terrible of a time and I have suppressed those memories. I don't know. I wish I did, or maybe I am happy I do not. It was the worst time I can remember.

I think I was in there for the birth. It was caesarean. I get confused about what happened with each birth. I confuse the details of what happened with each one. Obviously, Maeghan was born. I do seem to recall that the doctors or nurses were amazed that Maeghan appeared normal, if small, and that she was alive and breathing and moving. It was more of an impression I got and not anything anyone said, but I do seem to recall that they were amazed that she was moving her legs and everything. Maybe I am confused, but that is the memory I have and the one I want to keep from the birth.

I am going to leave it again. I am at work and you know the story. Still cannot type this with any semblance of dignity. I'll get back to it when I can.

Later 

MWNews 253

Maeghan 

I think I have told a lot of this in previous entries but maybe it will be good to do it again. I live in the past a lot lately. Looking at old pictures, the occasional video, so it makes me remember things and wish we could do more of that stuff. Problem is, now it is just weird if I go play in the park, with or without the kids. I still do it, but I feel kind of strange while I am there. 

So we have been through the IVF stuff. Worked the first time, Juanita was pregnant and we were living in Penrith I think. That is where she was born and I can't imagine we moved during that time, so it must have been where we were living. Having lived in so many different places, moved once a year for about six or seven years during that time, so knowing where we were at any given time is problematic. I think I remember them all, just not the order in which we moved and what year or time of year each move came about. So let's say Penrith and go with that.

Juanita's pregnancy went ok, or I do not remember any issues in the beginning. Normal stuff as far as I can remember. And then it changed.

I am about to go into what happened at some point. It might take me a few tries and I am currently at work and I cannot really go into it while I am here. Since you are reading, it may not be noticeable, but I have to say I still get very emotional about it and tend to cry a lot. Even after all these years. I remember it. It might be the worst time of my life. I can think of a few things that might have hit me worse, but they no longer cause me to start crying immediately. It was bad. I think I have gone through it before in here, but I am going to do it again. Not now, from my perspective, not now. I have to work. Hopefully, I will do it soon. But, again, you will never know. This is just a blog entry. No time references. I will now step away.

I don't really get a chance to do this anywhere. I would like to do it at home but I never seem to find the time. Always something else to do, although I don't really do anything. I just never want to sit down in front of the computer and type. I do it at work because that is what I do, but when I get home, I want nothing to do with computers. And when I do sit down at home, I think, maybe I will play Civilization for a while. Eight hours later, I am too tired to do anything else, so I give it up. Maybe I can sneak this in at work. Although, I have been interrupted twice since I started typing this time. And now, I am going for coffee.

Okay, drinking my coffee, kids are in class, no bosses here today, I think I can get five or ten minutes in before the students come back.

Sometime, I don't remember which month, we got a disturbing note from the hospital. We were in for one of the scans, off the top of my head I can't remember what it is called but it is the usual one where you get to see the pictures on a screen. The nurse/doctor doing it said he was unable to focus on some parts of Maeghan. He didn't know what the problem was but after trying for a while, he said he would send the pictures to the doctor and let us know when to come back. We didn't really think anything of it at the time.

A few days? weeks? later, I don't remember how long, they told us to come back in to do the scan again. We did, but when we got there, the head doctor was there, along with some other people, and they all were there to do the scan. I seem to remember thinking that was kind of strange but assumed they would have told us something if they knew anything.

I am doing this from memory and probably have a lot of the actual facts wrong so I might be making part of this up. I think the details might be incorrect but the actual diagnosis and feelings I can still feel. 

The doctor called us in to a private office and told us it wasn't really a problem with the scan. It was picking up what was there. We had been told the first time that they were having trouble focusing on parts of Maeghan, but the doctor was now telling us the issue was here spinal column appeared to be fused, or something like that. He said they could not focus on it because what they were seeing was a mass of malformed tissue and bone. Maybe not exactly what he said, but I think you get the gist.

From that point, he gave us a lot of details of what it might mean and what could happen and what we should be doing. I remember that he told us she would never walk and would be paralysed from the neck down. That she might not even have brain functions. It was too early to tell, but the prognosis did not look good.

I don't know if he sent us away at that point or if he continued, but I do know that they were going to get some other experts to look at it and get back to us with more information. And right now, I am crying so bad I have to stop. I am at work. Get back to it later.

Later