TRIBE

Something I wrote for Ironman's cause...reprinted from his blog.

TRI-BE
Across the globe, there’s a forgotten and lost tribe of people. They’re the children and families of children who have Trisomy 13 and 18. Their children have been given a death sentence. This tribe is hurt and mostly alone, waking up to face death and the fear of death.
For those in this tribe, they learn not to live in the past or the future, but in the now. They learn how to be. They must be.

Their motto can be summed up in 3 “B” words: (tri be). Battle. Breathe. Believe.

Battle – against pain, fear, death, against the very cells in a body. Against anger. Against ignorance.

Breathe – trisomy babies are supposed to forget how to breathe and die. As a parent, you never take a breath for granted. And as a parent, you learn to just breathe. You keep thinking you can do something – you can’t. In fact, you can do nothing. So, as Robbie Seay the singer says: breathe out and breathe again/know that life is hard, but it’s worth breathing.

Believe – is all we can do and the best we can do. Believe that life is precious. Believe that today is a gift. Believe that there is eternal life for the redeemed. Believe that I have a Savior friend who will see me through this. Believe that there is strength in Him.

Our TRI-BE theme was created by a dad living with a trisomy 18 daughter, Zoe.

Mo' Missy Black : Interview Part 2

Q: You made a decision to do something to support Trisomy and raise awareness. What did you decide to do, and why?

MBB: After I got home from Ironman Wisconsin 2008 I emailed Michael Hennesy and he gave me his website. I read everything on there and then goggled Trisomy 13 and 18 and read as much as I could. I bookmarked all the blogs I found, all the websites and read as much as I could.

My heart was deeply touched. With each child I read about, each family I read about. A little bit about my history here. I lost a baby sister when she was just 5 days old. She did not have Trisomy, but anencephaly. She was born without her brain. It was the hardest thing I went through as a child. I so wanted a baby sister and finally had one and we lost her 5 days later. This helped me relate to the families who were losing their babies to Trisomy shortly after birth.

I also had a little friend Aimee. She was not "normal" in the world's eyes. Most would have said she was not compatible with life. When we were out people would stare as I pushed her wheel chair. They would stare terribly. Aimee lost her battle with life when she was 14. I knew Aimee almost her whole life and wouldn't trade any of those moments for anything. She touched everyone's life that she came in contact with. She was incredible.

As I read about all Trisomy and these families and all they go through I thought of my sister, Blessing, and my friend Aimee. What would my life had been like if I had never known them? My life was made so much better because of them.

I knew right then and there that I needed to do something to help raise awareness for these Trisomy children and their families. I was very touched by Michael Hennessey and his passion for these children and loved that he was incorporting Ironman into his cause.

At t his point I had been doing sprint triathlons and knew that I wanted to do an Ironman someday. At that point it was just SOMEDAY. I still had well over 100 pounds to lose and really wasn't motivated. I was becoming motivated as I read about these babies. Doctors tell these parents that their children are incompatible with life. My sister was incompatible with life, yet we shared 5 wonderful days with her. My friend Aimee, in the world's eyes was incompatible with life, but we shared 14 wonderful years with her.

My question became who should get to decide who is or isn't compatible with life? I shouldn't get to decide that, the medical profession shouldn't get to decided that, the church shouldn't decide that, America shouldn't decided that. My hope in raising awareness for Trisomy is to help parents have all the options given to them. They should not feel that doctors, nurses, and people have given up on their baby, but should feel that people want to help them bring this baby into the world and do all that they can to help this baby. Even if the baby is only here and hour, a day, a year, or 19 years. These children deserve every chance to live as much as my children did.

I contacted Michael and told him that I would like to join Team Trisomy and do what I could to help raise awareness for these children and their families. I have done 5k's in their honor and triathlons. Every race I have someone's name written on my arm, a picture of them, or something to draw attention to the Trisomy cause.

In 2012 I will do Ironman Wisconsin to not only complete my weight loss journey, but to also raise awareness for Trisomy 13 and 18. If these babies can fight for their lives every day, I can fight for them through my weight loss battle on my way to becoming an Ironman.

It is an honor to be part of Team Trisomy and I look forward to my Ironman journey.