Holly's practical Drama exam went well she thinks, although she wont know if she passed until August. The examiner was laughing so that's a good sign.
She is off school at the moment with a sickness bug but she is starting to feel better now cos she is getting cheeky!
Jack has had a couple of days of really bad seizures but they seem to have calmed down now. Wednesday was a particularly bad day and he was so exhausted that he hardly moved. Yesterday he was a different boy and his eyes were wide open and he was taking everything in. I love it when he is like this, he was even smiling at me with the odd chuckle thrown in though I am not sure I want to know why he thought I was so funny.
I have two very cheeky kids.
Maz from Unique, the support group for families who are affected by chromosome abnormalities has put together a video to highlight their work. She did this in her spare time and it took her a nearly a year, not surprising when she was trying to fit it in on top of working and looking after a child with a rare chromosome abnormality. See if you can spot my gorgeous boy.
Unique supports 8000 families in 81 different countries and is not government funded. Their work is so important because having a child diagnosed with a chromosome abnormality is so isolating and the future can seem quite frightening and there is usually very little information the geneticists can give you about your diagnosis as it is often so rare. Unique brings together families with similar conditions and professionals who are able to learn more about these chromosome abnormalities which in turn makes them better informed and more able to support families during the initial diagnosis.
It feels good to have a network of families who understand just how hard life is at times.
My friend Angie (who was the encouragement behind yesterdays post) is doing the Race for Life this weekend. These are events run by Cancer Research UK that take place across the UK which consist of 5k and 10k races. You can run, walk, hop, skip....whatever floats your boat, all for charity. It's a great event, one my niece, Diane took part in 2 years ago.
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| She ran it for me! |
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| at the finish line |
I was a very proud Auntie, especially so when I learned that it was my name on her back. I was quite emotional!
So best of luck to Angie, her two daughters Debbie and Shelley and their friends this weekend and I hope you have a great time while raising money for such a great cause.
The very best of luck to all those who are running the Race of Life this weekend, most of which are in memory of loved ones. A fantastic cause. Of course I spotted your gorgeous boy! I've always said that he is gorgeous. Look at his lovely smile in that photo and he has such wonderful eyes. Fingers crossed for Holly's results, but it certainly looks hopeful!! Unique is obviously a wonderful organization to help so many families like that. Hope you all have a lovely weekend, Lyndy-Lou!
ReplyDeleteOf course I spotted that handsome young man. He was the star of the show for me. I don't have a doubt about Holly doing awesome but it is a shame you have to wait so long to actually find out. Unique is a very special organization. I am glad you keep us up to date on whats going on. Have a great rest of the week.
ReplyDeleteI am happy to her that Jack is feeling better. :) Always good news with a sweet smile.
ReplyDeleteGood luck to the race runners and bravo to your lovely niece.
He is a cutie pie! What a smile. Wonder where he gets it? This was a beautiful video and bless every single one of you that deal with this day in and day out. Walking angels on earth I say!
ReplyDeleteThe world needs more supporting groups like these. It would be a better place for everyone because they would be able to see just the impact these children have on the world.
ReplyDeletehttp://theadorkableditzmissteps.blogspot.com/
Very interesting post. My hat's off to you and your optimistic nature. I think you're a blessed person.
ReplyDeleteI visited Scotland once. It's so beautiful and the people were really friendly. My son is going there this summer I'm excited for him.
Found you on BPOW and am now following.
Yes I spotted him I thought the video was just great. Good to hear that Holly thinks her exam went well.
ReplyDeleteIt's great you have a support group like that to rely on! Jack is sure a sweetie :)
ReplyDeleteMaybe I missed it somewhere, but why doesn't Holly find out her results until Aug?
How inspiring that your niece did the race in your name.
Loving the good vibes in this post and that video is very moving: I've just shared it with our Special Needs Parents Association in Ireland xx
ReplyDeleteThisisme - I think they will have a good laugh at the race. Yes Jack has a gorgeous smile, it lights up my day.
ReplyDeleteOdie - awww thanks, he is such a cutie. I know it's a long wait.
SkippyMom - yep he'd better keep having good days this week or else! lol
Bouncin' Barb - I love his smile :)
AD - so true and very well said
Sharon - welcome to my blog. Your son will love Scotland in the summer, hope he has a total blast.
Jo-anne - it's a lovely video isn't it? Yes if she thinks it went well, it's a good sign.
Kellie - here in the UK they sit their exams in the May and their papers are sent away to an examining office and they are then marked. This happens in the whole of Scotland so there are a lot of papers to be marked so takes a good few months. It's a long wait.
Looking for Blue Sky - Oh wow, you rock! X
I'm 100% certain that Holly passed! There's no way that extremely talented, smart, beautiful young lady could do anything less than pass with flying colors!
ReplyDeleteUnique--what a wonderful organization! There's just nothing quite like support--and on an international level at that! These are the kinds of groups that keep hope alive!
EmptyNester - lol I so hope so but privately, I know so :)
ReplyDeleteThese groups are fab, make the world that little bit smaller too