Laurence Moon Bardet Biedl Society
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LMBBS Laurence Moon Bardet Biedl Society |
Why do we come to the conference for the weekend, to meet new people, have bundles of fun, stroke the lovely guide dogs, eat the fabulous food, drink the bar dry and come home having had a fantastic time??? Well that kind of sums most of it up, but this will be easier to explain from back to front!
When your hear from the parents in the morning on going home day, that their children had a fabulous time and could not stop talking about their day at Drayton Manor, with you. That they slept like a log and that they can't wait now till next time…that in it's self makes you feel proud to have made someone happy and created those great memories for them.
This year we looked after Kieran and Natalie. Kieran was happy to leave the fast rides to Natalie, although we did all go on the train ride together. The park caters for all disabilities and we were able to get every one on and off the rides safely. Natalie's face was a picture on Shockwave, she was bouncing from wall to wall to go on it again.
Finding out the next day that we encouraged someone to do something they might not have normally done, and for them to build up that trust in you to do it, is really very rewarding. To hear that Natalie slept in till late which was a bit out of the norm for her and that Kieran was still smiling just made our weekend. But, not forgetting spending time with our family and all the friends we have made, make it all worth while and such a great time.
The course Sue and Julie ran on the Friday evening for guiding the visually impaired was a great refresher for us to help make Kieran's day great, although Natalie helped too with all her descriptions of the park and even the water ride Excalibur, which we all went on. The evening was great too, Natalie was too tired to join us in the evening activities bless her, but Kieran and I played pool together.
To start with we came to the conference to support Kevin , Julie and their daughters Danielle and Hollie. The next conference will be our fourth one and even with another baby on the way due in January we are committed to coming in April, quite simply because we see this now as part of our lives. It doesn’t matter who you look after, with disability or not, it's important to play our part and support not only our family but also everyone else.
Today's world is sure a fast one, it's not long before the next month, the next year come and then they pass, It's very easy for cousins, uncles, aunties, brothers, sisters, friends and everyone else to become distant and get so tied up with your own lives that you forget others. The conference is invaluable and ensures that this does not happen for everyone but more important helps families and each other to learn more about LMBBS. To be part of this experience is very rewarding and we are only sad that we weren’t part of this before. See you all in April!
LMMBS, what was that? My husband and I didn’t have a clue. IVF was all we knew about, and the long 2 years we had struggling to get our Florence. She came naturally in the end, all that money spent!! It’s only money! During my journey through IVF I met this lady called Julie Sales in hospital. She was so nice, we made friends real quickly. Same silly sense of humour. She had two lovely girls, Hollie and Danielle. After we both came out of hospital we spent time together and grew into great friends.
After Craig and I learned more about LMBBS, we felt that we would like to become carers, even though it was a challenge for us. So, 4 years ago we came to our first LMBBS conference as carers. Craig felt very nervous about it all. Me!! Well, I just took it all in my stride.
We arrived to a beautiful hotel, nice room and very friendly people. I was speechless, here we were, amongst these lovely people and every one of them a different story to tell. Craig and I had a little girl called Chloe She was bubbly, fun and full of energy. We visited Thorpe Park. The bus journey was long but everyone was full of spirit. We took Chloe on the boat across the water. She stood up and screamed in absolute excitement that she was going to the farm.
I cried. The feeling for me was so amazing, this little girl touched my heart – she was living with this disability and for one moment she forgot and the excitement took over. I was lost for words all weekend. I met blind people who had done amazing things and to me they were inspirational.
We returned home, I sat and cried not tears of sadness, but admiration for the families I had met.
These families live day to day lives, just like us, and as they had said to me “you just get on with it”. These to me are special people. Just like Florence is to us, after this weekend I felt I had added to my family, extended it. I wanted to stand on the tallest building and tell the world how special they all are.
Every day I wake, I get a huge feeling of happiness knowing that my husband and I can contribute to helping these families in any way we can. It’s so easy being on the outside looking in, but for Craig and me we no longer stand on the outside. We feel that these families belong in our lives. I just hope that we can express and care enough for them to know that.
The conference has changed me as an individual. I am more patient with my children and more understanding of their needs. Julie, Kevin and all the families we have met have taught me that.
This is our fourth conference and our feelings haven’t changed Thank you everyone for allowing us into your lives.