Saturday, March 22, 2014

World Down Syndrome Awareness Day

Yesterday was World Down Syndrome Awareness Day. 
It's on the 21st of March - 21.3 representing the third copy of chromosome 21.

I know a little about chromosomes. I even have my very own geneticist, Jo who has known over the past nearly 11 years, my biggest fears and worries about my kiddos.  Having had two with salt-wasting CAH (chromosome 6 affected) and one with Down syndrome (chromosome 21 affected), can I say I know a little about chromosomes... probably not really. It's a very big complicated field. But from a human perspective, I think I can a little.

It's funny how our heart muscle works. How at precisely the same moment in time, it can feel both heartache and love. That's just one of its mysterious gifts. On World Down Syndrome Awareness Day, my heart feels like this alot. At exactly the same moment, I feel a breath of so much love, so much awareness for people with Down syndrome and yet... at exactly the same moment, I feel the heartache of loss, my own loss of a baby with Down syndrome. And at times on this day as others celebrate the gift of such an amazing child in their life, I think about my gift, gone before she had the chance to stay, for people to get to know and love her. I often would think it was selfish of me to feel this way. But now instead of fighting it and telling myself to suck it up and let the self pity go, I embrace it because it reminds me that my daughter still matters to me and while she still matters she still teaches me....

... and yesterday I was reminded of a beautiful experience I had, of how these special people teach us so much and how privileged I am to be a part of that.

It was a cold blustery day at the skate park bluff in Devonport, the year after we lost Charlotte, and I had left Hallie at a birthday party and headed to MacDonalds to warm up with a hot chocolate. As I sat down, I noticed sitting nearby a lady with Down syndrome a little older than me, and her Mum, quite a bit older,  having Maccas. As they got up to leave the daughter had dropped her glasses case on the floor and had not noticed. It was still pouring with rain outside as I jumped up immediately and grabbed the case off the floor, excited at this chance to speak to them.

As I caught up to them at their car, I handed the case to the daughter with Down syndrome and said, "you dropped this inside". She looked at the case, looked at me and grabbed me in the biggest tightest bear hug, I have ever had. Because she was a fair bit shorter than me, her head rested on my fast beating heart and I hugged her back just as fiercely. In the pouring rain I could not help crying. Her mother touched my arm and looked softly, questioningly at me. 

As the rain beat down on our heads, I told my story of baby Charlotte and her Mum cried and then cried harder as I told her how amazing I thought she was, and what a beautiful gift her daughter was. I looked at her daughter and told her how special I thought she was. I truly felt so much love for these two strangers I had just met. I suppose part of me imagined that's what my future would have been like.(especially the eating at Maccas part) ;)  

During this whole time, her daughter stared intently at me with her beautiful almond-shaped eyes and seeing the love on my face for her, and just knowing that I had an extra special connection to her, she gently placed her hand on my cheek and wiped my tears with her thumb and gave me another bear hug, giving comfort to my heart in a way that only she could.

I am so grateful for World Down Syndrome Awareness Day, for all that it teaches us about support, acceptance, love and awareness that people with Down syndrome are really not much different to you and I.... they just know how to love better.

Friday, March 21, 2014

Bread making

On the 4th Tuesday of each month the Primary kids from church age 8-11 yrs get together to do fun stuff, develop talents, serve others and learn about living the gospel of Jesus Christ. It is called the Faith in God program.

Last month we decided to learn about bread making. We decided that instead of just making bread and eating it ourselves (which of course is always fun) we would make the Sacrament bread to be blessed and passed during church.

We all thought this was a wonderful idea and while the bread was baking, we all took the opportunity to remind each other about how important it is to remember Jesus not just on Sundays when we take the Sacrament but every day of the week as we try to be kind and think of others and try and make good choices at home and at school.

While the bread was cooking, the children had a well-earned break outside, eating brownies and ice-cream.

One the bread was cooked, there was a little left over for everyone to enjoy. A cook must taste their cooking right and it was so yummy, warm bread with loads of butter.

We finished off with some fun outside and some jumping on the trampoline... not too high though!!

Thursday, March 20, 2014

Our new niece

Last Friday, the 14th of March at 4.58pm, my sister Jess had a beautiful baby girl.

(photo courtesy of Jess)

We were super excited to hear the news and can't wait to meet this newest precious little bundle.
Hallie and I head to Melbourne on the 23rd of April for her annual review at the Royal Children's so I'm hoping to spend a few extra days there, seeing as it will be school holidays and get to know baby Nora.

I'm also very happy Mum got to meet and spend time with her newest grandchild, before she leaves for her mission on the 1st of May.

Wednesday, March 19, 2014

An Irish jig { Westbury St Patrick's Day Festival}

On Saturday our town held their annual St Patrick's Day festival. Each year our primary school showcases some maypole dancing and my girls have always loved going in it. Students from grade 3 -6 can volunteer to do it and they have to learn a series of intricate dances. I can't believe next year will be Hallie's last year doing it.

Simon took Flynn and Hallie down as Jonty and I had to pick Oliver up from a birthday party and finish cooking some afternoon tea for a Primary activity we were having that afternoon. As usual the fan club was out in force to watch. I know Flynn can't wait to get bigger so he can stop being on the sidelines of all these fun activities the others get to do.

They started with the parade at 10.30 am through the streets around the village green.

Some of the costumes looked amazing.

Sarra's friend, Tilly from church, had stayed the night so they came down too to check out the stalls.

Hallie had two performances, one at 11am and one at 12.30 pm. Other years when I have been, it is so amazing to watch the ribbons and the way the dancers make the intricate patterns. It is very impressive to watch.

Sarra loves that Tilly hangs out at Deloraine HS with her old besties from Westbury PS and it was lovely for them to all catch up together. 

Amongst some great food stalls there was also heaps of fun activities for the kids to enjoy.

Another great day at the St Patrick's Day Festival and another impressive maypole performance. One of the parent's Cindy Chung, did a great job over the weeks teaching them all the individual dances. One more year for Hallie. I wonder if Oliver will have a go. :)