Not wanting to be outdone by the London Olympics I have
decided to award a few
medals of my own.
A short time ago Jess celebrated her second Birthday.
Unlike her older Sister she did not have
friends around to play pass the parcel with or just to run around outside in
the garden, as at the moment those things are outside of her capabilities. She did not sit down to enjoy jelly, ice
cream and other party food as she is fed through a gastrostomy tube. Nevertheless she had a family party. There were balloons provided by Aunty Sarah
who has got very good at making dogs and other various things out of the
special balloons that you can buy for this purpose. There was a Birthday banner and of course a Birthday cake. The nicest thing about the party was the
fact that we had all come together to celebrate (as we do for Christmas and
other special occasions). Jess enjoyed
every minute, she felt the excitement of her Sister who was also sharing the
experience and getting very excited in the process.
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| TO MY WONDERFUL FAMILY |
I am also proud to belong to another very special
‘family’. None of whom I have ever met
in person yet but I feel as if I know a lot of them personally. This is the SWAN family. SWAN have an internet support group for
families of children who have a Syndrome Without A Name. This group allows people to share
information between other SWAN members, to be able to rant freely about the
things that are getting them down in the knowledge that they are communicating
with people who have probably had similar experiences and therefore understand
what they are going through.
I was a bit sceptical about joining at first. My Daughter joined and told me about it and
I decided to join up so that I could help her to find information or people in
similar positions.
I once joined another internet group for people with an
interest in dogs and training. At the
time I had three and was having a bit of a training problem with two of them. I
decided to join to see if anyone could offer advice. What a big mistake!
. Anyway I ventured putting my
query on line and was totally taken aback by some of the comments
received. They were downright rude and
very judgemental. It was obvious that
there was within the group a small clique who would just join forces with each
other and gang up on anyone who did not seem to fit their criteria.
I felt very uncomfortable that I should be treated to this
‘cyber bullying’ and promptly left the group (after leaving a few choice words
on there first!) and vowed never to join another online group again.
I am so glad that I joined SWAN. Although opinions may differ at times I have never come across
any bad comments etc., and if a comment is taken the wrong way by someone (as
can happen with the written word) then the matter is quickly put right and
there are no hard feelings. Everyone
tries to help each other. I have on a
few occasions spent an evening worrying about a post where someone’s child has
been rushed into hospital or someone is going through a bad time. I have waited anxiously for a reply to say
that everything is now fine again and have felt a surge of relief when it
comes. I know I am not the only one
that feels this.
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| TO MY SWAN FAMILY |
Water Babies are a u.k. franchise that specialise in
teaching babies to swim from a very early age. I have to declare a personal interest here as my Daughter is a
swimming teacher and assessor for them.
My first Grandchild learnt through them and loves the water and is now a
member of a swimming club and can swim a length of the pool unaided. Her Sister who is the SWAN also goes to
Water Babies (I take her and her Mummy is the teacher). The company have helped Emma raise awareness of children who have no diagnosis and
also the benefits of swimming to children with other disabilities. This has also helped to spread the word
about the SWAN Group.
Recently another Swan member appeared on her local
radio station to talk about SWAN and the fact that her Daughter swam with Water
Babies. Her Water Babies class were raising money for SWAN with a sponsored swim. The link to her blog is below.
Please take the time to read it and also the radio link within the
blog. You cannot help but hear the
enthusiasm in her voice. I HEARD IT ON THE RADIO
| |||
| TO WATER BABIES |
I am so lucky to have been blessed with a
wonderful circle of friends, some I have known for a long time, some I have
only just got to know but no matter what the circumstances or the time span I
am grateful to each and every one of you for your support when I have needed it
most
| |
| TO MY DEAR FRIENDS |
And last but by no means least, YOU for reading my
blogs. I hope that you continue to
share my journey, your support and comments mean a lot.
| ||
| TO MY BLOG READERS |
I would like to finish by sharing a video clip. I am keeping
a video diary of the various things that Jess is achieving. And this from the little girl who they said
may never walk …. A TRULY GOLDEN MOMENT…
ps excuse the wobbly camera work, my eyes were a bit watery at the time!
