The story of noreen
once in a blue moon
1983 December – 1985 February
Created by noreen on 18/02/2012
Once in a blue moon a very special person is born,I was so lucky to have the pleasure to have the gift of a baby girl Alana,
Alana came into this world with so many complexed problems it is a wonder that she was able to have the time here on earth that we were to be blessed with.
From day one she had problems breathing but she fought and began to hold her own when Alana was 7 weeks old her breathing began to deteriate and she was placed on a ventilator, as the days went by she once again was able to come of life support and back onto her own ward where the nurses were so wonderful not only to Alana but all our family, Alana had her heal prick and it was found that her thyroid gland was not working so she was put on thyroxin and everyone was hoping that this could be the reason when she had problems breathing but alas this was not the cause, every day was a struggle for Alana but she always had a smile even when she was having needles stuck in her , when Alana was 12 weeks old the doctors approached us to say that they needed to give Alana a lung biopsy because things were not getting any better and Alana was dependent on oxygen, so this was performed on good Friday which fell on the 19th of April.
They came and took our daughter down to the theatre and as the doors shut and she was no longer in our view panic struck as all I could think about was what if she didn’t make it, and as both john and I sat there he held me tight and after what seemed like a life time the surgeon came and sat down beside us just looking at his face we knew there was something wrong but we were not ready for what we heard, our beautiful daughter Alana had had abnormal lung tissue and we were told that he did not want to say till he had examined the tissue and he would then come and see us with her diagnosis.
Over the next few weeks our Daughter was so brave she was poked and prodded and never screamed or sobbed, it was me that did all that just thinking that how could a little girl so frail be so brave when her family were falling to pieces, every day we were allowed to hold her but she always had to have her oxygen mask on and if it came off for just a minute she would turn blue and only then would you ever see panic in her eyes.
After 2 weeks I was sat at Alana’s bed side and I saw the surgeon come onto the ward fear over took me I really didn’t want him to come and see us but he did come in and asked me if I would get in touch with john and ask him if he could come up as he wanted to speak with us both went numb I think we all know that when a surgeon says that something’s just not write .I phoned john and he had to get someone to look after our little boy Luke who was such a beautiful little boy who was missing out on so much and yet he also never moaned he was our little man and the apple of our eye.
When john got to the hospital the surgeon and sister came into Alana’s room and sat beside us ,he asked us hoe we felt Alana was doing, john and I looked at each other and told him we knew things were not right but we had got used to this now , he took my hands and he said I want you to both listen to what I am going to tell you , I hoped that what Alana had was interstitial pneumonia, because children can grow out of that but it isn’t that Alana has got fibrosing alveolitis and it is a terminal illness ,I really didn’t want to hear this but we had no option ,he asked us did we have any questions, I had loads but nothing would come out of my mouth and john was just beside himself when we were able to talk the first thing we asked was how long did we have with our beautiful daughter he told us he really couldn’t say it was up to Alana as to how much she was prepared to fight. We were devastated we cried I screamed and I felt my heart was breaking then I looked at our daughter and she gave us the biggest smile and she made us realise that we had to enjoy every minute that god would allow us to have with her, we also had to realise that our son had to be part of this even though he was only 2 yrs old.
It was in the April 1983 we were told this so we lived every day as though it was her last we felt that way we would not miss anything out.
The ward that Alana was on was also the ward that children with cystic fibrosis were treated on and we really did make some wonderful friends both parents and the young patients, the nurses were some of the best, I had the most wonderful husband, John allowed me to live in with Alana to tend to all her care he kept everything in order at home he also had 2 other children who he looked after to a previous relationship an never once did he falter.
John was my rock I was in hospital most of my pregnancy with Alana so we hadn’t had a family life from me being 3 months into my pregnancy but john never missed one day when he did not come up and he always brought the kids with him how do I tell my john how much I love him because there is no words that could show how I feel.
I never had much money as john had to keep everything going at home and also try and give me what he could, and one day I didn’t have any money as it was the day before we got played a lovely axillary who loved Alana said she would bring Alana some homemade soup as Alana did not eat food even though we tried every day she would nine times out of ten bring it back up , but this day I thought I will try her with the soup and will have a little myself just my luck lol she ate the lot and then had a little more I just couldn’t believe it.
That day our little girl did things she had never done before she was in a baby walker with her little oxygen mask on we couldn’t believe it, but it was to be short lived ,Alana was agitated all night I asked for a dr to have a look at her as I knew there was something not quite right, all the dr said was we both needed a good night’s sleep how those words hurt me the next morning one of Alana’s drs came in to see her and asked me how long had she been like this I told him what the dr the night before had said ,he went mad from that moment on it was panic stations Alana was on 100% oxygen and still couldn’t breathe the dr asked me to get john up when john came I was frantic to have to stand and watch them trying so hard to save Alana’s life was heart rendering , the dr came out and told us they would carry on trying but Alana was not responding so I asked them to just leave her and to let peace come to her at 4 pm on the 14?2?1985 our beautiful daughter Alana Kate Bailey flew away with the angels leaving us with such proud memories if I was given the chance to erase the 14months we had with Alana I would never change a thing apart from her suffering because Alana learnt us so much and made us what we are today .
Sleep sweetly my little one mummy and daddy’s work will one day be done and then our lives will once again be as one loving you always forgetting you never
From your mummy and daddy and all your family