THE VOICE OF A RARE CHILD

Please take a moment and read this article we just had published in YOUR PREGNANCY a magazine in South Africa.

http://www.yourparenting.co.za/child/special-needs/living-with-trisomy-13 

A very special thank to YOUR PARENTING for publishing this article and helping us to spread awareness!

Reflections of Life

As I sit as my desk in my home office working on transferring all the site albums over I have an inspiring moment I thought I would share. I am looking at all this amazing and miraculous children and I started to cry. I to this day am amazed at how each and everyone of them has the same facial expressions. I see Isabel in all of them. Today , I was reading a story and all I could do is think to myself that I can't wait to see Isabel at that age. Looking at this little boy with ailments similar to my daughter I have hope.

I now reflect on a time in life when hope was not there. A time when I couldn't buy Isabel clothes a size bigger than what she was wearing at the time. I would think to myself what if she never gets to wear them and they just hang in the closet taunting me. When I used to say to my husband I HOPE Isabel lives to see that age, now it's I CAN'T WAIT until Isabel is that age. The families thank me all the time for what I am doing, but now I must THANK YOU all!!! Thank you for being my inspiration, my strength, and my hope. While I may not have given birth to all your children, they are still like my very own. Most importantly, THANK YOU FOR MAKING ME A BETTER MOTHER. As we embark on this journey to growth , I felt the need to stop and reflect on the past. Here is to new beginnings and new dreams. May your dreams carry you faster than your mind can plan!!!

Hugs and Blessing

Vanessa

If nothing ever changed, there'd be no butterflies. ~Author Unknown

I saw this quote this morning and it must have been meant for me. Living With Trisomy 13 is making huge changes. As we grow into our role in the community as a Non-Profit organization we are still trying to find our  place. The small web based community we once were,we are no longer. LWT13 is now that caterpillar changing in to the butterfly. This journey is long and tedious but all for the greater good. As we look at life beyond the immediate we see a new horizon. We are going to change the way families are treated when dealing with these rare diagnoses and we are going to be their support system. I hope everyone will join us on this new journey as we evolve into a greater organization. I think Albert Einstein said it best “Life is like riding a bicycle. To keep your balance, you must keep moving.”  So, we will keep moving and I hope you move with us.


Hugs and Blessings
Vanessa

TAG (Trisomy Advocacy Group) Stroll for HOPE - 2012 SOFT Conference

The Trisomy Advocacy Group Board Members will be participating in the STROLL FOR HOPE at the 2012 S.O.F.T. Conference and would love for your financial support in honor of our team.


Please follow the link and PLEASE SHARE THIS LINK on your personal page to help spread the word, and raise money for the S.O.F.T. organization.


SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18,13 and related chromosomal disorders.