As the Founder of the Foundation, I’ve come to know these three truths above all else –
- Trisomy 18 is a devastating condition for any family and developing child.
- Trisomy 18-impacted parents are as diverse as the American public, indeed as diverse as parents all over the world.
- Trisomy 18 is not a recent phenomenon. It has always been a major cause of miscarriage, stillbirth and early infant death.
In the weeks and months ahead, we’ll use this space to talk about these “truths” in more detail and hopefully have some lively conversations together as you all express your own views on these topics. We’ll also talk together about some of the common controversies that rear their head from time-to-time in the public at large and within our community — where our very diversity as families can sometimes challenge our community’s unity and focus on Trisomy 18.
These controversies from within and without can (and do) challenge our commitments to each other — a commitment above all others to be a warm and welcoming and accepting home for all the hopes and all the pain and grief each family brings with them to this community when they first hear the term “Trisomy 18.” The Trisomy 18 journey is a life-long journey for every parent who loves a child with Trisomy 18. It extends from the moment that a new mother learning she is pregnant to that terrible moment that no parent ever forgets – the moment when a doctor says there is something terribly wrong with their child. Then follow all the heart-wrenching discussions about Trisomy 18 that are imposed on parents from that moment on — painful questions and terrible decisions that no parent wants to every make or consider.
Is my child’s death really inevitable and how will it come? What will it be like? How can I possibly watch my child die? Will my child suffer? Is there really nothing that you can do to save my child, Doctor? Will all my future children have Trisomy 18 too? Will I even be able to have future children at all? Is this my fault? What did I do to cause this? What did I not know to do to prevent this? What could I have done to prevent this? How can this be happening to me, to us, to our family?
And then later that same day, as they try to go to sleep on that very first night . . . Is there any way out of this nightmare and this pain? “How will I . . .” and “How will we ever live through this?” And then finally, “Will we ever be the same again?”
Every family has asked these questions in that terrible first day after hearing the words — “Your child has Trisomy 18.” Every single family. And as a community, we must be there for them that very first day and every day that follows through the rest of our lives, as we live with the loss and the memory of the child we love with Trisomy 18.
That is the FOUNDATION upon which we stand as a community united to “Take on Trisomy 18” together. We take on this condition — Trisomy 18 — and all the consequences it has in the lives of families and their children. And together we fight. We stay united and focused on the fight against Trisomy 18 and its consequences. We take all our pain, and all our grief, and all our anger and sadness, all our dashed hopes, and all our new hopes we can learn to have — and we “Take on Trisomy 18” and fight back!
We have lots to talk about in the days and weeks ahead. So much has happened just in this last week as the national media at large came calling to ask (finally) “What is Trisomy 18?” We can all thank Bella for that! Beautiful little Bella—writing her own story as she lives with Trisomy 18 in the loving embrace of her prominent family. I’m looking forward to having this time and space to continue our talks with one another. I think of all of you and each of your children that I have had the honor and privilege to learn about and care about in the 11 years since the birth and death of my own baby son, Isaac. So, so many names — each one of them just as dear to me now as the name of my own son.
Many years ago this statement graced the birth announcement that was also a death announcement for my baby son — and it is just as meaningful today across our community as a unifying belief as it was to me back when the words first found themselves into my life: Every child with Trisomy 18 . . . no matter how fragile their life, or brief their days, forever changes our world. Those are words we can live by. At the Foundation, in THIS community, EVERY child matters and EVERY child with Trisomy 18 forever changes our world.
Now let’s go be a force for change, a force for good in the world, and Take on Trisomy 18 together for them!