Sickness

This something you have to get used to. I know kids get a lot of colds and stuff but Charlotte does get more than most. See she finds it hard to regulate her body temperature so often when it is very cold she feels hot and removes the lovely warm clothes she has on. When she was younger it did mean removing them all, but thankfully she has grown out of that.

The problem is we can't wrap her in cotton wool, so often we push through with plans when maybe we shouldn't have. This weekend for example, Charlotte has had a cough so we headed into town on Saturday. Which was OK because it was all inside but Sundays trip to the local supermarket was I think a step to far. She has now been off school for a week.

although she did love the trip to town as she and Mari went Girlie clothes shopping while I sat outside. She was very happy. Once she had shopped, Mari had to shop for clothes too which she helped with. On leaving the shop. Cahrlotte informed us that it was my turn so I now have two new work trousers and some socks....woo hoo

Sitting back the other day I noticed how much my Little girl has grown and become just and independent young one. I think the strange thing is how quickly it has happened. One day we are having to get up with her, she wont let let us lie in and wants us to be with her. The next she is getting up, making her own breakfast (including toast and Jam), entertaining herself.

In truth it hasn't been a hard job. Certain things have taken a while, but on the whole it has come down to not accepting certain things. The question we often find ourselves asking is "IF she didn't have down's syndrome would we accept that". The answer is of course no, Well I know I wouldn't. Obviously there is a line but it doesn't have to be a broad line. I have Mari a lot to thank for that. Sometimes I feel I was helping to much. It is often easier to do something than to watch someone struggle, or have the time to wait for them. The truth is at some point we have to let go (as long as they are not in danger). Milk can be cleaned up, Counters can be wiped down, the toast will still be there.

So Mari and I started giving Charlotte the freedom an Eleven year old should have. The results have been very encouraging. Like I said she pretty much takes care of herself in the morning. The next thing we are working on is Kitchen knives.

Tears of Joy

When I said that the only time I cried about (I think I used broke down) Charlotte was just after she was born. This is bit of lie because I have shed many a tear over her. fortunately most of the time they have been tears of joy.

I have had the opportunity to enjoy all her achievements in a way that I think other parents are not able. I remember the first time she grabbed for my hand. I choked up so badly. Then there were the milestones in physio. Rolling, Reaching, sitting up and then finally walking.

Holding back the tears as she swam her first length in the pool un-aided. read the words from a book. Performed in the chorus at her last school, only needing her friend Jackie to prompt her. Seeing her with her peers is something I can't describe. Kids who see her as Charlotte. Even now a joy is overwhelming as I write this. Not sure I would feel this emotional (And it is a good feeling) had things been different

No Thanks to :

I guess this would be the first rant (well not really a rant but a shout out to those who tried hard to pull me down)

Eye Doctor - Silly old tosser who did Charlotte's Eye correction. At the assessment he told us. In a matter of fact way that he was only doing the surgery for cosmetic reasons as she would never read anyway. Charlotte now reads at level 5 and is on of the best readers in her class. UP YOURS.

SQN LDR Marshall - While trying to impress a young lady officer told his infamous I want a dog so I can him syndrome. I will let you work the rest of the joke out. Needles to say he was a) Very nearly shot with a flare gun b) Asked never to return the tower...twat didn't even work there. UP YOURS.

Oh there are plenty more but most are ignorant arses who find it all very funny until something happens to them.

The truth is it is very easy to get angry and want to hit out at these people. I have not included the kids who have (I guess through no fault of there own picked on her) but the truth is it makes you no better. I am now getting very good at the emotion come back and making them feel very small.

And finally

It was a bitter sweet home coming for us. After eleven years I don’t really remember much about it. If there was anyone there to greet us. I know at some point we took Charlotte in to see the people at work. Charlotte's Mum became more withdrawn and I found myself looking more and more after her. She attend one or two of the physio meetings but after that it became my responsibility. She also attended the medical meetings but day to day it was down to me.

Around about four weeks after Charlotte's birth I was called into my bosses office and informed that I was in fact being promoted and posted but that I would have the choice of two local air bases. The money at this time was to good to turn down so after discussions it decided an Air base Wiltshire was the best solution. For the time being we were allowed to keep our house, as this prevented re-assising for a new authority.

Sadly I struggled to cope with the job, a very good and rewarding one for a rank that I was. However with a great many things on my mind I struggled and made many mistakes that affected me a lot. I was working NATO shifts (2 days,2 nights and 4 days off), which was great but I got handed Charlotte on my 4 days and very rarely saw her mum. I might be doing her a dis-service but that is how it felt. The upside to that is a got to spend a lot of time with her and formed a bond that is as strong today as it was back then.

I decided that I could not cope with home life and the new job and decided to request a preferential posting back to the air base I was at. (knowing the job and that I could the job meant I could concentrate on home life). You would think that this would have been easy bearing in mind my situation but it proved very stressful. You see the forces are great when everything is going positive and people are happy, but soon as something comes up that is out of the ordinary they are crap at dealing with it. After a very tough battle, where Charlotte's treatments, physiotherapy, speech etc were ignored, the reason I got the posting back to the Air base was because we only had one car. One f**king car.

So it was back to Odiham, which meant we got to keep the house we were in and therefore treatments could continue with people who knew Charlotte.

Guess in terms of my story this is good place to leave it for now apart from tying up some loose ends. I finally managed to snap Charlotte’s mum out of the depression by taking Charlotte away from here. It was enough for her to see what she would be missing. I left the RAF in 2000 to work in the interweb. Charlotte's Mum and I separated a few years after and finally divorced. I would like to stress that this was not caused by Charlotte. That is completely different kettle of fish and I may rant (or have ranted) about it before. I have since re-married amazing women who has taken Charlotte to heart. Helped largely by whom she is but also that her uncle has Down’s Syndrome. Charlotte and she have formed a loving bond and as her Farther I am very happy to see that.

I will now start posting current experiences with Charlotte and my family. I may dig further into the past if and when I feel I need to explain things further.

A bit of a shock and time to decide.

Following the rather confusing and frustrating diagnosis from Doctor Bosnia, we were moved to a lovely private room. Seems strange but I can’t remember an awful lot about the emotion of the time. I knew that Charlottes Mum was struggling, and who can blame her. On the other hand for me I discovered a strength I never thought I had. To explain that I would have to discuss aspects of my life that aren’t for this blog but to say that having been more less controlled in marriage up to that point I found I had to deal with a lot a of things. Most of all Charlotte.

I know I went back to Parent ex laws house and had a kip. At which point I think my parents had arrived. I could hear a lot of crying and discussion but managed to fall asleep. Then it was back to the hospital. I guess the conflict in Charlottes mum’s mind was what to do with her. I know that she was seriously considering adoption and leaving her at the hospital. I am not writing this to be spiteful but just being factual. My mistake was telling her that I would support her, knowing damn well that there was no way in hell I was leaving my daughter there. I was becoming a rather dab hand at this point at tube feeding my girl and changing the nappies. Various people came in to visit. All with the kind of sympathetic look on their faces. Difficult to know what say really. Of course the clichés came out “They are very loving”, “they are happy”, “You have been chosen because you are special people”. Can’t really blame them, I guess people look for the positives.

My own thoughts were more on the lines off. I have a blank book now. I don’t need know all the stats on when she will walk, talk, read etc. I knew she would but it would take a bit longer. I never immersed myself in the how’s and why’s of the condition. Still don’t to be honest. I know what I know and that is Charlotte is a little girl who, will be what she will be.

Guess the hardest part was telling people. Not because I was embarrassed of anything. It was hard because people have an expectation when you are having a baby. So of course as soon as they see you they want to congratulate you. Then you have to tell them, then you have to watch them trying to search for something to say. In the whole I think I did ok with this. First was my boss at work, to ask for more time off to deal with it. I also asked him to tell everyone as it was easier than me having to go around individually. I also asked not to be promoted or posted. I was in the RAF at the time and both were immanent. The one I did screw up was our neighbour. Having gone back to our house for the first time to collect a few more things. I walked past Charlotte’s room and lost it. Probably the first and only time. I had been supporting everyone else at that point so it was my turn to take a moment. Anyway I ran into the lady next door. Who of course bounded up with a cheerie. “Congratulations !! How was it?” To which I coldy replied “ Did anyone tell you She has downs syndrome”. That knocked the stuffing out of her and felt awefully bad about it. A few days later I did apologies with a large bunch of flowers and explained that I had not been in full control at that moment.

Mean while back in hospital things were much the same. Well after ten days I decided it was time to take Charlotte home.

The beginning

Like all good stories ours must start at the beginning. Not right in the beginning as that would be a whole different kettle of fish. Our story will start at the birth of one Charlotte Neve. Guess the first thing to point out is that before that day I knew nothing about downs syndrome apart from seeing the occasional person. The next thing to establish is that throughout the pregnancy there was no indication of what was to come.

I was awaken by Charlotte’s Mum at around 2am proclaiming that it was indeed time to go to the hospital. None of this waters breaking or contractions staring at 1hour apart nonsense. Straight in to main event of every 5 minutes and constant. Grabbing the bag and the car keys we headed out to the local hospital. Charlotte was born at 6am and 5 pounds and 8 oz. At that moment I was so excited but I did notice that she did not look like either of us. I put this aside by thinking that she has just been born and too be honest I had never seen a new born baby before. Taking the change I had bought I sought a pay phone (yes in those days not everyone had a mobile) and began ringing parents. I also remember thinking as she was born I will need to start saving for a wedding.

Back in the room the midwife kept popping in out looking at Charlotte, taking her aside to measure and weigh, which seemed reasonable. “Is she ok?” we said. “Yes, she has 10 fingers and toes” was the reply. Really should have been the first clue. I think by this time Charlotte’s mum’s parents had started to arrive.

Then it happened. Two hours after Charlotte was born we were told the news. I can’t remember the exact events. What I do know is we had some Doctor who could hardly speak English trying to tell us what was going. He was talking, the midwife was translating. We were stunned. It was a bit of a shambles really. Everyone talking trying to ask questions which he did not understand.

I looked at Charlotte and knew that I had to protect her. This was my daughter and nothing was going to hurt her. Nothing.