Friday, 18 January 2013

A new day

This morning I went shopping with my daughter. Her birthday is coming up and I promised her we would go shopping and buy her something nice to wear. It was so nice to hang out with her at the shops, buy something to eat and drink and walk around looking at clothes. She is great company and it was wonderful to spend that time with her for it has been sometime since we have had that opportunity. She is growing up so fast and even though I miss the days she was a little girl I love the young girl she's become.

Jayden and Luke went to the park with Danny while we were out and when we got home they were so happy to see us. It was great for danny to have that time with them and I'm so glad it went well, even though it started off poorly. When they left Jayden was crying and screaming for me and it took all my strength not to run to him and pick him up to take with us. According to Luke he cried for me in the car all the way to the park but when they got to the park he was happy. So pleased. Danny and I talked about it afterwards and it didn't occur to us that he might think he's going to the hospital without me as the drive to the park they went to was the same way to go to the hospital. Poor little mite. I'm so glad that wasn't what he was doing and no doubt he was as well. You just don't think of these things at the time and when you realise afterwards it makes so much sense.

He's had a good day otherwise, no vomiting and eating really well. When we saw the naturopath on Friday she put him on a gluten free, wheat free and dairy free diet and boy, has that been challenging. Trying to find a bread that even remotely taste nice that has no gluten in it is pretty tricky. He use to eat spelt bread quite happily before but now we've been told that that has gluten in it as well, damn. Made my first homemade gluten free loaf the other day and everyone of the kids turned their noses up! Looks like I will be eating that for a while. He's been good on the dairy, has taken to almond milk well but the yogurts we are still working on- that's really tricky.
He's also been given natural supplements and has been really good taking them, bit of a star patient considering he's only two.

I had a bad day yesterday, a sad one. After going through old photos and videos of a time that was once in our family. When I woke this morning I read a beautiful comment by a woman whom child's has the same condition and her words really made a difference. They made me feel incredibly understood and gave me a hope that one day I won't feel so sad for the past.

Everyday is a new day and everyday is a challenge without a doubt. If I get through it without crying I'm doing well however that doesn't necessarily mean I'm fine. If I manage to listen to my kids, laugh with them and play with them I'm also doing well but it doesn't mean I'm not aching inside. If I call in and have a coffee and a chat with you it doesn't mean my mind isn't a bundle of worry. This is just how my new life is now, learning to live with the pain and fear. Learning to manage to live a somewhat normal life even though I'm hurting like hell inside. I now know to take one day at a time and that is what I do, all I can do.
Today my kids are well and happy, today I'm with them and today was a great day.
What made it even better is my sister arrived this afternoon and to Jayden, she is the bees knees. Well, all of us actually. What a huge smile she put on his face and what a brilliant time he has had with her. Beautiful.




- Posted using BlogPress from my iPhone

4 comments:

  1. Hi ! Just to help out there is a great gluten free bread called Countrylife Bakery and comes in white, multigrain and fruit! You can buy them from most IGAs, coles and woolworths but you may have to look around but it is definitely worth it !! It is dairy free as well!

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  2. I have commented in the past about my son Connor who was diagnosed with a brain tumor 2 years ago. His dr. Is Dr. Goldman. Wonderful man. When we finally finished treatment Connor would not stay with anyone other then me. I couldn't be in a different room as him that's how bad it is. It takes time and I had to learn to leave him for short periods. It is hard on the other children my oldest is 8 and he sometimes resents Connor for always needing my attention. Part of it is my fault for letting it happen. He just had his one year out of treatment scan. The feelings you have never go away but they do get a little easier. I always have in the back often mind what may happen in the future. May this be his last Christmas? I had to learn to let to a little bit. Connor has come so far in the past year he is in preschool and goes everyday. He will stay home with daddy now. He still has a lot of fears but constant reassurance helps. Everyday you leave him for a little while will get better. Your other kids need the attention. My oldest was 6 when Connor got sick he is now 8 and still sometimes has a little resentment towards his brother and that is my fault. They see him as better and don't understand what may happen totally and really should they? Give Jayden some time it will get easier.

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  3. Hi, there is a gluten-free bakery at the Winthrop Shopping Centre called 'Alternative Bites'. The bread is quite similar in texture to real bread and you also get a larger loaf than what is in the supermarket. There are also GF cakes, sausage rolls etc. Worth a try!

    Coles has the better gluten-free range usually and so do some of the Supa IGAs. There are some good GF pastas now - the trick is just to watch them and make sure you don't overcook to retain a better texture.

    Most of your regular family meals can be made gluten-free by making sure you use GF products like pure corn flour, and sauces etc which are labelled as GF. If you are unsure then Google is a great source of information about products.

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  4. You can get soy yoghurt at supermarkets, not sure if that's better than dairy or not...

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