Tribute pages are going up… share your story today!
Ideas to help you get started:
It doesn’t have to be perfect, just share the part of your story that you feel inspired to share right now – you can add to it or change it later. Start with the basic facts and then focus on one particular part of your journey.
If your child was “born sleeping” or you had only a short time with your child then your focus your story around the time you had, your prenatal experience. Describe the moments when you found out, discuss the support that was or was not there for you, Talk about the non-tangibles: Do you receive “TrisomyTinks?” You know, signs, coincidences, things that happen and you just know. Talk about that. You get started and I promise you that you’ll know what to say!
Perhaps you could describe your experience with the medical community during your pregancy or your birth experience. Did you have a Birth Plan? If so how was it received? If you had limited time with your child, how did you spend it? Describe what life is like for your family, discuss the child/sibling interaction or the lessons your other children learned or are learning. Talk about what your child likes or liked to do, what makes him happy? How life has changed since your child was born?
The medical details are important but what is most important is the journey. We are here for those coming after us. The families who are just today hearing the word “Trisomy” for the first time. The families whose world is about to fall out from under them. The families who are a part of TrisomyWorld, they just don’t know it yet! Let’s give them a foundation to stand on.
I’ll be the first to admit I would never have been so noble as to put my hand up and volunteer for life as the parent of a disabled child. I would not have believed myself capable. Nope, not me. In fact I would have hidden in the back so as to be certain not to be called on. But called I was. I fought it. I struggled against it. I just wanted my life back. I wanted to wake up from the nightmare.
But then something happened, I found the stories. The families – back then there weren’t very many to be found, the internet was in its infancy. And with the families I found Hope. And that Hope was what gave me the determination and the resolve to put on my “big girl panties” and step into this new world I was traveling to. To become the advocate my daughter was going to need. The stories armed me to face the outside world. The world that, like me just weeks earlier, wanted no part of any of this. The world that from that moment forward would never again understand my life.
Your story matters. Your story can make the difference between someone having the courage to walk their Life Path through TrisomyWorld with grace and dignity finding all the hidden unknown treasures this experience has to offer, and someone looking only at their fear of the unknown and the pressures of a World that doesn’t want what they can’t fix. The things they see as broken. Your story can shine a light of hope into their lives.
Come on Family, let’s give them Hope. Let’s give them Belief that the journey will be worth it. Let’s give them the courage to Do Life. Let’s help them find the beauty in this World of Trisomy and the amazing children who Live there.