Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Thursday, January 14, 2010

New Friends... even though I havent met them.

Through Ellies blog, which has been up and running for about 4 months I met a few other mums who also have children with WHS. Then most recently I have met more WHS mums on facebook.  Mostof them live overseas, America, Spain, England, etc and one of them lives in Ballarat, and its funny because even though I have never met any of these mums, you have this strange connection and bond through both having a child with WHS. And when they say to you, I understand what you are going through, They REALLY do. 

Im not saying that other mums dont understand because they may, but mums of kids with no health or genetic issues, will never truly feel or understand the frustration and upset that comes with having a child with a disabilty. 

With saying that there is also alot of joy that comes out of having a child with special needs, such as when they reach a milestone, and it may be something as small as clapping, shaking a rattle, or even eating a new food and enjoying it. Then comes the big milestones such as rolling, sitting, walking etc... They are truly to be celebrated.

I could have written a sad, frustrated post today because we really have had a bad week, after Ellies seizures on Saturday and Sunday, we have been left with a child, when she is not asleep is iritiable, agitated and hysterical and nothing we do can seem to help. This is what seizures do to Ellie. I dont think it is the seizures that we dislike the most, it is more the aftermath of them, and the effect they have on Ellie... 

So... As I said I could have written a frustrated post today, but I thought that may not help our situation, instead lets celebrate the friends that I have made out of having a child who has WHS, even if some of them are miles away.... Thank you!!


  1. I couldn't agree more with your blog. It is because of moms like you that get me through the good times and the challenging times. We are all in this together. I am so excited to see our girls grow up together.

  2. Love your post! And Hannah said it perfectly, WE REALLY ARE ALL IN THIS TOGETHER! I am blessed to be your friend and who knows... maybe one day we will make it to Australia. MY HUSBAND HAS ALWAYS WANTED TO GO THERE! We love you and Ellie and are happy to walk the road with you!

  3. yup mel... that's true! i can feel the bonding that ties us! only people in the same shoe will understand what we've gone and will go thru...

  4. Great post! Am very much looking forward to meeting you guys. I think the 27th seems to be the day that worked for you was it? I am at the RCH 25th, 27th and 28th. I will message you anyway!! I always refer to our Aussie support group as our "other" family. Because it truly is what it feels like. When we went to our first conference it felt like coming home. Finally we had found people who could help us and support us.