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.

An Interview With Melissa Bastian Black

God sends you friends. Melissa Bastian Black and I have talked over the past months trading blog comments and Facebook encouragements. Recently, she sent me this:

Hey Greg and the Batiansila Family. I'm doing a 5k this morning and I'm running in honor of Zoe. I want you to know that I am inspired by your family and your little girl. Right now I am battling my weight and have a goal of doing an Iro...nman in 2012. My battle is nothing compared to your little Zoe's and she and other children keep me going. If they can do it and battle every day of their young lives then I can do it and swim, bike, and run in their honor.

Then, she followed up with this:

Hey Batiansilas. I just ran my best 5k ever. I have never been able to do it in under 50 minutes and I did today. I did it in 47:19. Zoe helped me especially in the last mile. Give that little girl a hug and kiss for me. I couldn't have done it without her.

Which made me think. We all need to know more about Melissa Bastian Black. Here's part one of that interview.

Q: I had never heard of Trisomy before we had Zoe. How did you become aware of Trisomy?

MBB: My trisomy journey started on September 6th, 2008. I have been doing sprint triathlons and had decided that I wanted to eventually do an Ironman, so I decided that I would volunteer at Ironman Wisconsin.

The Saturday before the race I volunteered at gear check. I got to meet so many of the athletes and help them check in their gear. In walks this Cowboy with the biggest grin on his face. I helped him put his gear where it needed to go and noticed his hat. It said, "tri-ing for trisomy." I asked him what trisomy was and that is when I first learned about it.

He told me all about this precious children and their families. He told me that most doctors and medical professionals consider these children non-compatible with life and a lot of couples are encouraged to abort their babies. A lot of these children don't live long after they are born or don't make it to their first birthday, but he told me about kids who are making it past their first birthday and beyond. He was so passionate when he told me these things.

He told me how he was racing his Ironman races to raise awareness and was heading to break a world record. I believe Ironman Wisconsin was his 13th race that year and when I made a comment about that he would not let the conversation turn to him, but rather back to these children and their families. This conversation really touched my heart and I knew that day that my heart had been changed forever.

Q: How long have you known Michael Hennessey and how did you come to know him?

MBB: I met this Cowboy at Ironman Wisconsin 2008. When I asked him his name he told me that it was Michael Hennessey. After we talked I asked him how to get in touch with him after IMWI. I believe he gave me a card. I put that card away, we finished talking, and he left to finish his Ironman journey that weekend.

I got to see Michael on the run of the Ironman the next day. He was smiling as he ran through the aid station and I was able to cheer him on, even got a hug. I was working the finish line when he crossed it. He still had that smile on his face. I don't think he ever stopped smiling. That really left an impression on me. I cheered for him when he crossed the finish line.

I might have even given him his finisher's medal. Then he gave me the BIGGEST HUG ever. I didn't know if he would let go. It was not only the BIGGEST hug, but also the Sweatiest hug. I'll never forget it. I was so happy I had met him the day before, so happy to be part of his race day, and I knew during that hug that I had met someone very special with a wonderful cause.

I stayed and worked the finish line until the race ended at midnight. I cheered in the last runner, headed to my car, and then back to my hotel. I emptied my pockets onto the night stand and there was his business card all crumpled up. Before falling into bed I remember that I knew I had to contact this man. I believe I emailed him the next day.

We have been friends now for a little over a year. I am forever changed for the better from meeting Michael Hennessey.

Q: How did you find out about Zoe?

MBB: Michael Hennessey has a blog on his website www.ironmanforkids.com and he had asked people to pray for this baby named Zoe. I read about her and was very touched by her valiant fight. My kids and I started praying for her. I bookmarked your blog and follow her journey there and on facebook now. I like to call her my Zoe girl or just Zoe girl. She has captured my heart and I love her very much.

Q: How do you think Trisomy is handled and accepted in the U.S. today?

MBB: The fact that I was 34 and had never heard of Trisomy shows me that this is not a priority in this country. I was surprised to learn that Down Syndrome was Trisomy. The only people I have come in contact with that knew what Trisomy was when I talked to them, were families that I know with Down Syndrome children.

The fact that the doctors and nurses, in general, think these children are incompatible with life and never even give these children a chance in their minds shows me that this country is not accepting of children with Trisomy.
These families are not given any hope.

These doctors get to decide who is compatible with life and if it doesn't fit their definition then there is no reason to keep or even give birth to that child. (side note: I know families affected by trisomy that have had great doctors and nurses, so I want to give a shout out to the doctors and nurses who care and who give these little ones a chance.)

It's a shame that in 2009 that there is still so much prejudice in this country. People are prejudice based on race, wealth, and health and so much more. It's time to come together as a country and not judge people just because they are different then you.

God Bless The Ironman, Part II

"We're not trying to fix these children...we're just trying to love them."

If you have 8 minutes, listen to the Hennesseys speak...pray for them. Thank you, Ironman and Janelle.

God Bless The Ironman

Just read Michael Hennessey's comments on the last post. Gosh, I love that guy. A heart for service, for kids like mine. A heart for the Lord. And a fiendishly great athlete. Please take 3 minutes of your day and click play. He's our Ironman. He's legit.

World Record Holder And His Ironman Family With Birthday Wishes!

Okay, this was done quickly, not our best work, and Janell realy does have a mouth but Michael's big head gets in the way---so funny!
We wish we could be there with you guys in person. Celebrating that wonderful life that is Zoe and your many blessings with your whole crew!!
Many thought, prayers and joy your way!!!
love,
the Hennesseys

**Michael holds the WORLD RECORD for most Ironman races completed in 12 months. He does it to raise awareness for Trisomy 13/18. Read more about his mission for TRIBE at the link on the right.

Ironman's Ink

Ironman - Michael Hennessey, current world record holder for most Ironman competitions completed in a year - did an interview where he mentioned Zoe! Thanks, Ironman!

Continue to pray for him and his quest to make people aware of Trisomy 13 and 18.

Hennessey Sets The World Record

Michael Hennessey has done it. Today at about 8:30 CST he crossed the finish line with his traditional two-step and now owns the world record for most Ironman finishes in a year.

I am so proud of Michael for his dedication and care for kids - one of whom is snoring behind me. I pray that God blesses Zoe with his physical determination in the coming 48 hours.

Ironman Interview

I'm pretty sure you have to hear Ironman talking to understand how truly dedicated, and how truly insane he is. I mean that in the nicest way possible. Ironman can't stop thinking about his quest. There is no doubt that he has been given a calling by God.

Here's a really cool interview with Ironman.

Ironman Speaketh

Continue to pray for Michael Hennessey in his quest to break the world's record for most Ironman races completed in a year. His knee is painful, but he's slowly trying to get himself back to competing.

Here, he speaks about the progress of his quest on another blog.

Toughing it out

Hi everyone. I talked to the Ironman, Michael Hennessey. His knee is really hurting him, but he just wants to know if the pain he's experiencing will result in permanent damage. He's trying to get some help to get an MRI - since right now, he's between insurances.

I asked him what this meant for his quest, and he said it was really a matter of dealing with pain and just working through it.

So, if the Ironman can tough it through a marathon and 140 miles of biking and 2.5 miles of swimming with a painful knee, I'll tough it through my stuff, too. How about you all?

I talked to my friend once when she was upset. She was in tears and she just said it was so frustrating to be a pawn at work. She told me how it hurt, how it was a big mess.

I told her that she's got to get up. Right? You got to get up. You fall down, you get up. That's what we do. Right Michael? Right, Zoe? Get up.

these carbon shells

i got an email from the ironman. his knee is hurting him so he's going to sit the next race out. it won't deter his quest, but it's time to pray for him and his mission and his call. and his knee and his wife and six kids in their little house.

pray for zoe. we met with her cardiologist today and her blood oxygenization is now between 70-80%. she goes in for an ultrasound next week so they can get a better view of her heart, and then big decisions need to be made about what to do next.

i don't know about you, but i hate begging. i hate it. i hate feeling abject, i hate needing you all and needing help. recently i thought God had blessed me in a special way that would have made me feel a little less dependent, but that's been taken away. back to being a poor and begging man. i think in another stage of my life, i'd be angry. but i'm too tired to be angry. i turn myself back to the scars that mark His skin. and lose myself.

the economy of mercy
by switchfoot

There's just two ways to lose yourself in this life
And neither way is safe
In my dreams I see visions of the future
But today we have today
And where will I find You?

In the economy of mercy
I am a poor and begging man
In the currency of Grace
Is where my song begins
In the colors of Your goodness
In the scars that mark your skin
In the currency of Grace
Is where my song begins

These carbon shells
These fragile dusty frames
House canvases of souls
We are bruised and broken masterpieces
But we did not paint ourselves
And where will I find You?

Where was I when the world was made?
Where was I?

I'm lost without You here
Yes, I'm lost without You near me
I'm lost without You here
You knew my name when the world was made

Ironman Weekend

Here's some pics...we had a chance to spend a night in an incredible suite at a resort and then goof around at some waterparks, and then go see Ironman finish his race. Now, that's a weekend. I'll youtube the video when youtube comes back up. Keep praying for our Ironman.

The Ironman Twosteppeth

We just got back from a weekend of water slidin' and hanging with the Ironman. So many good stories and better pictures. We're currently working on getting the pictures and a video of the Ironman doing his race-closing twostep for you.

In the meantime, we're brainstorming a whole bunch of ways to help the Ironman on his quest. First job is for you all to get on your knees. The incredible web of prayer you've built for Zoe can include this man of God.

As he finished his race, a volunteer went to him immediately. She did a bunch of talking and he listening and they were sharing. And they both cried.

Her neighbor has a Trisomy 13 child who is 18. And she wanted to share it with him. And I will with you. He's touching lives and hopefully changing a few. Pray for him and his quest.

Comments From Mrs. Cyborg

Janelle said...

WOW, WOW, AND ANOTHER BIG WOW!!!
I have tears in my eyes that you have embraced Michael so, when really it is your family and sweet Zoe, and so many like yours that have taken a hold of our hearts and turned Michael into that Cyborg!!
When the Holy Spirit gives that quiet tug at ya, you try your best to answer. That's all you can do really, the grace of God does the rest, and I guess a cyborg is born!! So funny!
I think the hugs from you will mean more to Michael than you will ever know. It is your fervent witness, and beautiful humble witness at that, to the sanctity of life, abandonment to a Fathers plan, and persevering strength that may feel weak at times, that witnesses and teaches us daily. A few ironmans is the least we could do to open up some hearts to the same.
I only wish I could be there to meet you all too, and hold sweet Zoe, but we barely got Michael there.
Oh, and as far as ironman.com article disappearing, hmmm-don't know if our cause was too pro-life or what, but it was up three days---like the Trinity---like the third chromosome---funny or providential---maybe they will put it back if more people bug 'em in a nice way! Case in point--these wonderful children need the respect of any other child.
God bless you guys.

Zoe's Cyborg

It means that much to him.

Michael Hennessey wants to set the Guinness Book of World Record for the most Ironmans. He's doing it so that people start finding out about Trisomy 13 and 18. He's trying to qualify for a huge race in Kona, HI. He's doing more for kids like Zoe than anyone I know.

Makes me want to hug him. What about you? Well, he's coming to Madison, Wisconsin on September 7, and we Bats are going to break off our little trip away so we can give him a hug.

If you all plan on going to meet him in Madison, let us know and we'll all show up together. Who wants to see the Ironman with Zoe? I'll try and get a picture for you.

If you all have any more questions, please get them to me and we'll do a little q'n'a. That's question and answer.

Michael Hennessey's Article That Was Pulled From Ironman.com

for reasons we do not know, the article below appeared - and then disappeared from Ironman.com. If you click this link a few times, it might work. It's hidden on their server. Maybe we should all write the author and let him know - nicely, everyone - how much we support this man.

Ironmanlife: Michael Hennessey's Mission

Kevin Mackinnon profiles the man behind Ironman for Kids

Published Friday, June 13, 2008

While I am fully aware that attempting 20 Ironman races in a year is tough, Michael Hennessey isn't likely to get a whole lot of sympathy each time he returns from a race over the next year. Not when he's leaving his saint of a wife, Janelle, back home with ... are you ready for this ... six kids, the oldest a whopping seven years old.

I can remember when our oldest was seven. Her two younger brothers were five and two. My wife claims I covered as many races as I did for no other reason than to escape the bedlam of the household. That was with three. I can't imagine what it's like to deal with six. Heck, they probably have had at least three kids in diapers for the last four years.You’d have to have a pretty good reason to head out the door for 20 Ironman races over a year, knowing that you’re leaving that sort of work behind you, and Hennessey certainly has that. Hennessey has started a non-profit charity called Ironman for Kids. The charity is raising money to bring awareness of a genetic disorder called trisomy to the world.

Trisomy is a genetic disorder associated with the presence of extra material in the chromosomes. Trisomy 13 has as extra 13th chromosome, where as trisomy 18 has an extra 18th chromosome. Down’s Syndrome is trisomy 21.

“But the other trisomy syndromes don't get as much attention (compared to Down’s) until a mother is diagnosed at birth or prenatally with the early prenatal screening,” wrote TheresAnn, who’s daughter Natalia was born with trisomy 13, in an e-mail earlier this week. “In most cases families are told their child will not survive, futile to treat and the treatment option prenatally is termination or early induction. Trisomy families just want to bring awareness out so all families are informed of their options, so they, the parents can make the decisions, and not have the decisions made for them.”

Hennessey is working hard to help us all be aware of the syndrome, but he’s learning the hard way that it’s not going to be easy to achieve any of his goals. He had originally envisioned doing 18 Ironman races in a year, which he figured would get him a spot in the Guinness Book of World Records. That was until Stefaan Engels heard about his goal. Engels had planned 15 Ironman races this year … then moved that goal up to 18 so he could compete with Hennessey. I’m actually afraid to publish this column – now the two of them will likely start looking for mid-week Ironman events so they can get more in.

“I’m also learning that getting to the start line of all these races is often harder than the race itself,” Hennessey says. On his way to Ironman Brazil a few weeks ago, the 42-year-old Texan was kicked off the plane until he could get a visa. A whirlwind tour of Houston got him to the Brazilian consulate in time – he got to the race with 16 hours to spare.

Hennessey isn’t just trying to finish most of these events, either. He’s hoping to complete Ford Ironman Coeur d’Alene in 10 hours next weekend, which he hopes will net him a qualifying spot for Kona in the 40 to 44 age group.

There’s only one man on the planet who would agree to coach anyone with a race schedule that includes 18 to 20 Ironmans – that would be Petr Vabrousek, who routinely finishes eight to 12 Ironman and long distance triathlon events a year, almost always in the top-five. I think the only reason the Czech pro is helping Hennessey is so that he can finally answer the inevitable “Why do you do so many Ironman races every year?” question at every press conference with “I’m only doing half as many as the guys I’m coaching.”

Hennessey is quickly becoming a living endorsement of Ironman’s “Anything is Possible” theme. He did his first Ironman in 1984 when, as an 18-year-old, he was the third-to-last finisher in Kona in 16:53. Twenty years later he raced at Ford Ironman Florida, where he knocked more than six hours off his time. Now he’s trying to get back to Kona again, all-the-while raising money and awareness for a great cause.
Just ask ThereseAnn, who I’m sure would be more than willing to help Janelle out any time, despite her own challenges at home. I hope you’ll find a way to help out, too.

You can learn more about the program at www.ironmanforkids.com

You can reach Kevin Mackinnon at kevin@ironman.com

Batblog Feeling All Kinds Of Official-Like

I think we've crossed some kind of threshhold: Batblog being quoted by a website.

Michael Hennessey, our Favorite Ironman competitior Ever, did an interview with www.lifesitenews.com , which liberally quotes Michael's interview with us on the Batblog!

Now, if only lifesitenews.com would have contacted me, we could have traded links and become powerful internet friends. (hint, hint, lifesitenews.com).

Talking With Trisomy's Ironman

Michael Hennessey's wife, Janelle stumbled across the Batblog and wrote a comment a few months ago. I went to Michael's site and was amazed and intrigued by what he is doing. I've done a lengthy - but really informative - interview with him. Please take it in.

If I was more of a newsman, I'd lead with Hennessey's brief take on medicine's stance on Trisomy. But I'll leave that for you to read. Instead...here's an interview excerpt:

I tell ya, you have to trust

Jesus to take a leap of faith especially on the

financial front. At the same time it is fun, and

humbling to see how He has worked so far.

So finally I will just say there are so many families

out there going through a pregnancy with a trisomy

baby or delivering one and they are simply on their

own to figure out what best to do for their precious

precious baby.

We hope that they know they are not

alone-in the unknowns, and the struggles, that there

are people out there that care, not because their

child may die, but because their child IS and we

celebrate that! We as a society can get so involved in

our own little worlds and the only time that we get

involved with a cause is when we are directly affected

by it.