Stay tuned

We've all been very sick so I haven't felt like blogging.

Highlights since Friday have been Jack's Christmas party hosted by Down Syndrome North East (good fun!!), his paediatrician review yesterday - had a very good chat with his lovely teacher - and Katie's toddler group Christmas party this afternoon (poor baby didn't understand the concept of PASS the parcel).

Will try to catch up soon.

The answer

If ever I was to ask the question "why?", today I got my answer.

Who am I kidding, I ask "why?" quite a lot. Not as in "poor me, I'm so badly done to, let's get the violins out", but more introspective like why was I given to these kids, am I doing a good job, surely they deserve more than me and my feelings when I find it difficult to cope. What is the meaning of it all, what message am I supposed to be learning?

Today was Jack's school Christmas concert. He goes to a fantastic special needs school with kids aged between 3 and 11. It lasted for two hours and I have never been so humbled in my life. I know every parent is very proud on occasions like this, no matter what their child's age or ability, but it just felt different. Extra special.

It started with the older classes doing various singing and dancing from shows like Grease, Mary Poppins, Singing in the Rain, etc. There are some profoundly disabled children there and even though not all can walk or talk, every single child had a role to play and every child went on stage. One of the songs was Over the Rainbow and that really brought the tears to my eyes! To see the innocence and joy on their faces and how special they felt in the spotlight.

Ben and Katie were rather tired as they've both been sick so it was difficult to keep them quiet and I had to go to the back of the hall with Ben at one point, but it was eye opening to watch everyone and just observe.

Jack's foundation class and the younger kids did the nativity story. I kept looking and looking to see him and couldn't find him - and then - there he was. He was wheeled on stage to be one of the innkeepers who said no room at the inn. Well, they knocked on his tray and he waved at them, lol, and signed (Makaton) no. He was beaming! He was moved to the back, but I could still see him and he sat throughout. No getting upset or being bored, just taking it all in. He then came back in the middle of the stage until the end and he just looked so happy.

He of course had no idea we were there. When it was all over, the kids were going for lunch so we went to see him in the corridor and when he saw us he did a double take and was like "woah, HI!!!!" He was very excited to see us. He's never been very touchy feely until recently and was sitting in his chair and waving his fingers for a kiss and cuddle!!

I got lots of pictures and video. I don't know what the quality is like, but I'll sift through them later to see if there is anything to upload.

I was very proud of him. So. For those times I'm pulling my hair out when he is acting up, or feeling frustrated that yet another person wants to make an appointment to complicate my day, I'll remember back to this moment, to seeing him up there, to seeing how hard these kids work and the obstacles they have to face every single day of their lives just to get by... and appreciate that every achievement however small and insignificant it may seem is the reason, or answer to, "why?"!

Sick kids

Poor Katie was pretty ill today, another bad cold. She gets very clingy and emotional when she's sick. She's also teething her bottom molars. She's woken up crying at least 4 times tonight already and her throat seems really sore. We were supposed to be going to a christmas party at her toddler group tomorrow, so looks like that won't happen, she was really looking forward to it! Ben has also been coughing and his nose is constantly running. Jack is ok for now, touch wood. I think it is just a matter of time for him. Looks like he has another infection of his g-tube site though. He has his review with his ped on Monday and the gastroenterologist next Thursday.

Ben...what a sweetheart. He is trying so so hard to move. He's just spinning in circles or going backwards, but I'm hoping he'll crack it in the next couple of weeks. He's up on his arms and looks like he's trying to get up on one knee, but at the last minute ends up flat again. He does seem to be more determined to roll lately, he's done it a few times today :)

Bullies

I know kids are kids, but I was so annoyed at Katie's toddler group today. Same little (older) brat that has hit her in other sessions, whacked her with a toy at snack time and jammed her fingers in the play kitchen. Then later, tried to take away her drum while singing. The mother was nowhere to be seen, he just runs riot. He is a terror and won't be going near her again!! I was right there, but had a hold of Ben at the time and couldn't reach out quick enough. Poor thing, she's coming down with something I think so was really upset, usually she just brushes these things off.

Down in the dumps

I've been feeling out of sorts since Jack's op was cancelled and I tend to withdraw when that happens. Almost seems to be a permanent feeling these days. Sorry my blog has been very quiet!! I've backdated as much as I can remember since then so will hopefully keep up to date from now on.

Thank you Lisa for checking on me, I'm fine. Time to put my big girl pants on and get on with things.

Playgroup

Or pre-school as they are tending to call it lately. I called in today to sign Katie up. We can't really afford more than two mornings a week, so from January she will be going from 9-12 on Mondays and Fridays. I'll stay with her for the first week, then she's on her own! My girl is growing up. I think she'll do alright. It's the first time she'll have been anywhere without family. We go to a toddler group on Tuesday and Thursday afternoons, but those are where the parent stays. This is completely children and staff. It's just around the corner from home so that is good too. She already has a place lined up in September for nursery school (funded), which will be every afternoon Mon-Fri, so hopefully by then she'll be used to that environment.

I'll not know what to do. Jack is in full time school, Katie will be gone a couple of mornings, it'll be just me and the little boy - who really is a good baby, so he better not give me any trouble :)

Christmas evening

Jack's school had a little Christmas event tonight. A raffle, music, Santa etc. We thought we'd take the kids to see how it went. Not well! Jack didn't like it at all, too loud, too dark, too many people. Katie was disappointed as I'd accidentally told her it was a party so she was expecting balloons, food, presents (remembering Jack's birthday). Ben was fine!

I thought to heck with it, we'd wait to see Santa anyway, so we endured the queue and tried to keep him occupied as much as possible. When he got to the front he was really starting to object, but when we went in, it was through a silvery, shiny door way thing which he thought was cool! Katie was *very* standoffish when she saw "Santa" as he made his way to the grotto, so I thought she'd not like it, but they both enjoyed it when they got in and talked to him as it was all decorated and had lights.

Santa to Katie "and what would you like for Christmas?"
Katie "an owl".

Um, ok, lol.

She was particularly happy when she received a little bag of sweets and Jack and Ben some bubbles!

We left after that and though I wanted to give up, I faked it with them when we got to the car and tried to keep things very upbeat and they had a great journey home. Katie was constantly "Ooooooh! Look at the lights, LOOK!!!!" as we drove past decorated houses.

They all enjoyed the bubbles at home :)

Ben's feet

I took him to get measured for a different type of shoe on Monday as he keeps escaping the current ones and hurting his feet. They look very cool, like little spaceman boots. Hopefully they'll be ready soon. He finally saw the consultant today and says his feet are "coming along". I was feeling a bit down and disappointed though as in the waiting room, there was another boy Ben's age who had surgery on the same day as him back in June and his feet are perfect now. We go back in another 3 months where I guess he'll decide whether Ben needs another operation.

He told me the date of Jack's new surgery while I was there. Great news, it's not too much of a delay. Bad news, it's on 16th January - Tony's birthday!!!!!! Something like this always happens, we can never celebrate anything on time. Miscarriage on our anniversary in 2004, surgery for Jack two days before christmas in 2005, surgery for him the day before his birthday 2006. Sigh. Ignore me, I'm in a fed up mood.

Bowling

We finally got round to taking my brother and his girlfriend - that was supposed to be for her birthday in August! Every time we've tried to arrange it between then and now, something has come up on either end.

My mam came to mine so the kids could be at home, then Tony & I went to Paul's and watched Mission Impossible III on HD DVD. Very impressive quality. The movie was good and action packed, but a little cheesy in parts.

We then went bowling and I got absolutely thrashed! I won the last time we went and was 33 weeks pregnant at the time! Nothing went right tonight, I couldn't find the right ball - that's my excuse, lol. We went back to theirs when we were finished and they treated us to kebab and chips. Yum.

It was a nice few hours break, much needed after this weekend.

My little doggy

We went to the library this morning and happened upon a christmas activity morning. It was going great, Jack was even being good - until the puppet in the show he was watching let go of a half filled balloon and he went THROUGH THE ROOF! We couldn't get him to stop crying no matter what we did or where we moved him so we had to cut it short.

Katie was able to write a letter to Santa, decorate a xmas stocking and get her face painted though. It was a little smudged by the time I could take a picture as she was crying when we had to leave :(