About Me

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Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Tuesday, 12 July 2011

A note from mummy...

I can't believe we have come to a year down the line...this time last year we had a nearly 3week old perfect baby boy. Little did we know that in 2days time our world would come crashing down. On the 14th July 2010 at 11oclock I got a phone call from the health visitor to say she will be coming round at 1pm with a colleague. She kept going on about Ricky being there with me which he couldn't. This was only his second day back at work. I was supposed to be having Catherine round for lunch. The health visitor rang a second time just to make sure there was no way Ricky could be there. No I said. Still I didn't think anything was wrong, you don't do you. No parent expects to hear that their is something wrong with their perfect little baby. After speaking to Ricky he said he was coming home. I told him not to worry, it's probably just routine! Maybe I was just too tired and sleep deprived for the alarm bells to really kick in!

So 1o'clock comes, Ricky's home and there is a knock at the door. Theres Elizabeth (hv) and a lady called Pat. After a brief chit chat they get down to the real reason they came....I can still hear her saying it to us now...remember the exact words she said...something has shown up in Ethans heel prick results...have you ever heard of cystic fibrosis...

I think my heart skipped a beat there and it felt like time stood still while i took that in, was she saying there was something wrong with my boy. Of course we had heard of it but didn't have a clue what it was. Pat went on to explain basically in layman terms for us to try and understand what that meant. The one thing that stood out above everything she was saying was life threatening....life threatening! So my perfect 3week old gorgeous baby boy was going to die.... my boy, our boy! This cant be right, they must have got it wrong, got the wrong results, mixed up the blood test. Something, anything...it cant be true! I sat there with Ricky crying, just holding my boy, squeezing him. how can this be happening, I'm his mum, mums are there to protect their children, to help them, to make everything better yet there is nothing i can do about this. Helpless, sick, failure...those words barely even come close to how i felt right then!
Pat and Elizabeth were great, very supportive and explained things as much as they could. The next step from here was to go to the Royal Brompton hospital tomorrow for a sweat test to have it confirmed, then they left.

There we was, sat there faced with these horrible thoughts running through our minds! In the last hour our whole world had flip turned and crashed with a ten mile pile up. We had to make the call to our family and tell them what had just happened. How can you tell your parents that their first born baby grandson has a life threatening condition that will eventually kill him. One of the hardest phone calls i have had to make. We tried. through the tears, to explain it as best we could. Of course we missed out bits and forgot loads. The family rallied round to support us. That night went by in a blur, not only was we adjusting to life with a newborn baby, we had all this to contend with too. All night i had all sorts running through my head. How is this going to affect his life? will he look any different? how long have we got him for? all this was answered the next day.

After having the confirmation and talking to the team at the brompton things seemed a little clearer. He will not look any different, which i was pleased about as children could be so cruel and i didn't want him to be bullied through school for being different. The way they put it then was that he is just more prone to coughs and colds and if we don't treat it in time he could get quite poorly, they explained the physio and medication that he would need and sent us on our way. We had to go back the following week for full 'training' as it was and to be educated fully. We left there feeling slightly better about it all.

Still doesn't take away the thought that we could possibly out live our precious little boy. Although life expectancy has gone up to 37 now, that is still way too young. and only a percentage get that far, how do i know he will be one of those. All we can do now is keep Ethan in the best health we possibly can, keep him away from anything that could possibly harm him like people with colds and smokers, and keep up with all the preventative methods such as physio and medication to try and keep it all at bay. Keeping ethan healthy is my objective now, if i cant do that what can i do?

I pray every day that a cure will be found this month, this year, just as soon as possible before this horrible condition takes over my boy. Everyday we are reminded that he has this, we don't get a break, we just get on with it. But to have my boy each and every day makes it worth it. There is nothing i wouldn't do for him and if i could take it from him and give it to me i would do it in an instant. It breaks my heart knowing the facts and I'm always asking that question 'why him'  but am so grateful to have him, he is my absolute world and i cherish every moment with him. To reach his first birthday and in general be pretty well was fantastic, this time last year we didn't have a clue what the future held, we still don't but the first year was overall a healthy one.

Life is a time bomb no matter who you are,

But when it comes to my boy..... every day is a gift xx

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