Reality

On another note...inclusion...leaves me with a broken heart anyway.

We also had a birthday party to attend this afternoon for my step-sister's daughter. She's 6 now, so it was the first "organised party", other than just a birthday tea with family. We were kind of not invited to the main party (roller skates), but welcome for lunch and party games after the skating/disco.

We get there, kids happy to see my dad, but I've always felt like they are given the short end of the stick with regards to his time spent with them compared to the other grandkids. It's always hurt me, but whatever. Since most of the kids were probably 5-7, Katie was wandering around not really being included and not really touching her food, but she was happyish playing with the balloons. Ben was just happy to eat ;-).

The main point of this is Jack. He was not handling it well at all. First off, he can't eat so he's the only one at the side of the room when they're all having fun and eating, so I pulled him up to the table next to Katie. He's happy for a minute then starts getting upset when they move the tables to make space for the games. He's crying and I can't figure out what he wants, some of the kids are looking at him. I put him on the floor with them - "NO!", try to cuddle him "NO!", go outside "yes", then 2 seconds later "NO!" and he's trying to push me away and jump out of my arms all this time.

I took him back in and again he starts getting upset and motioning at the chairs. Does he want to sit at the table? "yes". Take him over there "NO!". Finally figure out he wants to sit at the table where the food is, even though there is no-one else there any more, he's happy. Again, for 2 minutes. It was like he's watching everything that's going on around him, knew he couldn't join in and just didn't want to be there. Not as in "not allowed" to play, because I sat with him to do pass the parcel, etc, but he KNOWS he is different and he physically cannot do what he wants to do, which is what all the other kids were doing without a second thought.

I sat to the side while Tony went for a walk with him and just wanted to cry. My dad was sitting next to me and I couldn't even say "dad, this is so hard, I really hurt". I really wanted to cry for my child who could not find enjoyment in a birthday party because he is overwhelmed, things were going to fast for him, he couldn't participate and I couldn't work out what to do to help him. It is times like these where I wonder what will happen in the future for him. Where the tiny things we take so much for granted are such huge obstacles for him. I get angry at his behaviour, in general when out and at home, I try to be understanding, but I just end up frustrated. I can't teach him how to act, I just can't get through to him. We have not been able to find one single thing to make him feel safe, or counter whatever it is that is triggering him and I just can't tune the shouting/crying out, it grates right through me... and then Katie and Ben copy his noises, argh.

I see very obvious terrible twos behaviour (over the past month or so) which is not the issue. It's the mix with the other behaviour that has been going on for 3 *years* in October. I just can't take it any more. He's like two different children and when he is happy, it still breaks my heart because I see the boy he could be if we could just figure it all out.

Hence why we hardly ever do anything as a family. Do you know how difficult that is? This is our reality. These are the most special years of a child's life and we can't ever get these moments back. For Jack, Katie and Ben. We're stuck between a rock and a hard place. We have to keep exposing him to outings and different situations otherwise it would just be worse, but that time is miserable for everyone. Or, we leave him behind. And I die a little further inside because I feel our family is being broken up.

Please, let his physio get him a walker for home soon. Maybe he would feel like he has the tiniest bit of control in his life. He knows *inside*. I know he knows. Cognitively, he is doing very well, but his communication and his body lets him down and he is going crazy, he must feel trapped. So, I feel awful for him and what he goes through, yet utter frustration at him at the same time. And then when he sleeps, the guilt comes every night for feeling the way I do.

The guilt of parenting

We were supposed to be taking Katie to the cinema for the very first time today. I didn't think she was ready for it until now. Our local cinema does a kids club on Saturday and Sunday mornings where the child gets in for quite a cheap fee and the adult goes free. It is all we have talked about for 2 weeks, she has been so excited. All of her acting up has been squashed with "remember... if you want to go to the pictures, you need to be good".

We very rarely get one on one time with each child. The car was due for its service so the plan was to take Jack and Ben to my mam's, drop the car off, then take Katie to the movies while it was getting done (just down the road from the garage). We dropped the car off at 9.30, the film wasn't on until 11.00 - Horton Hears a Who - but it wasn't open to buy the tickets early. We killed some time shopping, headed to the cinema, get around 6 kids from the front - SOLD OUT!

OMG, I thought my heart would break for her, I felt awful. It was her first time, we'd talked about the huge tv in the dark, with popcorn, I was expecting tears. I pulled her to one side and told her there were no tickets left for today, but you know, *tomorrow* is Saturday!!! (she knew we were going on Saturday) and we were going to come back tomorrow and see the movie, hurray. She bought it. I still felt just awful.

I'd been buying some running gear in the last shop we had been in and on a rare occasion, tried the stuff on before I bought. I never do that! I detest shopping...well, except for my new-found addiction to running clothes, but I still avoid the changing room like the plague. Chances are, it would have been sold out anyway, but I still felt like it was my fault. Anyway, Tony and I took her to McDonald's instead, she's only been around 3 times in her life and the ice cream was enough to keep her happy :)

So, tomorrow! We will make sure we buy the tickets as soon as it opens before we kill time. I can't wait to do this with her.

Bye bye bottles

I forgot to mention, Ben has given up bottles as of a couple of weeks ago (or rather, cruel mother took them away). His bottles were becoming worn and I didn't want to have to buy new ones, so I just persevered with the cup. He has done great since then and doesn't seem to miss them. Katie was off bottle by her first birthday, so I wasn't sure whether to let him keep them, but I'm glad now so that we don't need to deal with it further down the line.

He is growing up too quickly. He seems younger to me though since he can't walk. He is 15 months old today! Where has the time gone. I love him so much.

Katie's heart scan

We finally had the appointment today.

I'm so thankful (that sounds a bit mad really!), that she is so experienced with hospitals due to the boys, so she wasn't scared and quite enjoyed being able to have tests done for a change!

She had her ECG and echo, her SATS were 96% and the cardiologist couldn't find any cardiac explanation for her blue spells. I am so glad there is no problem, but of course that doesn't explain her lips going blue for no reason.

I was anticipating everything being ok, but still worried until we saw the doctor. I really like him. Jack will see him in July for his heart review, hopefully his repair is still working as good as new.

They aren't really going to do anything further. He said she was perfect and normal - I don't usually get words like that when I go to hospitals ;-). He said sometimes the body protects the organs by moving heat away from the less important areas, lips, fingers and sometimes in children it can work a little wonky, so he thinks it is more a circulation issue than anything. She sweats very badly at night so maybe her temperature regulation is off.

It was just odd as at its peak, it would happen more if she was running or cold, understandable, but also just when she was sitting watching tv and doing nothing out of the ordinary. Now that it is warmer, I have noticed the blue a lot less, so either it's just one of those things and she'll grow out of it, or we'll see it happen more often when it gets colder again and explore the circulation avenue.

She's been telling anyone who'll listen about being at the hospital today, so cute. She "saw her heart on the tv" and "had "jelly" on her tummy" and kept saying "hello, I'm Katie".

I'm very relieved, but am so beaten down with all these appointments. I'm going out of my mind and taking it out on the kids. If I hear Jack tell me NO one more time... argh. I do have a brief reprieve though, our building work has been pushed back to next week!

My Favorite Monday

I can play this one! Tib wants to know what our favorite beverage is. Until the past year or so, I would have said Diet Coke without a doubt. When I was pregnant with Ben, being so horribly sick - again! - the only thing I could drink was Diet Pepsi. Since then, Diet Coke just doesn't do it for me, Pepsi seems to have an edge. I don't get to drink it very often, but it tastes best from Pizza Hut in a nice refillable glass :)

Lime and Coconut cake

Triple layer!

Delicious, even if I do say so myself.
I don't get to bake often, but I do like making something from scratch when I can.

I made it extra tangy for Tony. My cheeks are still recovering.
I'm going to get shot for admitting this - I just licked the plate too.

I missed it

:(

Jack used a walker for the first time in his life at school today. If I had known, I would have made an effort to be there so that I could see. They could have at least sent me a picture. I missed a *huge* thing, he has never, ever "walked". Feeling a bit sad about that.

Mis-pronunciation

Hilarious!

Katie will tell you that she goes to gay group (playgroup). Tony came home tonight and had a company car he had to drop off at work, so I had to follow him in our car so that he could get home. He set off with me behind and enroute we passed Katie's playgroup. Katie knew she was going to Daddy's work and must have gotten confused in her excitement because she exclaimed "oh look, it's daddy's gay group".

Now that is one statement that could have been very misconstrued! Lol!

Hubby gone again

:(

Tony is away for work again today and tomorrow. I hate this. Katie said "I need him, I miss Daddy". Again, I don't know how people cope when they are really separated for long periods.

It is very strange though. For the past couple of times he's been away I've thought that I would comfort eat in the evening and here is it 10.20pm and all I've had are two soft boiled eggs. There are tons of sweets and chocolates in the cupboards (still have Easter goodies) and I haven't been bothered. I think I'll have a cup of tea and some Maltesers now though. In bed! Start my new book.

Dermatology

Busy, busy, busy.

Took Jack for his dermatology appointment today. They think there are two issues with his stomach. G-tube infection, for which he's had 5 rounds of antibiotics so they swabbed him again, and irritant dermatitis caused by his stomach content leaking out of the tube site. It is actually looking really calmed down at the moment, so hopefully the barrier cream (high strength) they have prescribed will keep things at bay.

If we can get it 100% under control, I guess we'll have to get another referral to the gastro-enterologist to see if there is anything they can do with the over granulation (build up of skin) around his stoma as that is what is preventing his tube from sitting flush with his stomach, therefore contributing to the leaking. But, they couldn't do anything to help while he had infection.