Pages

Monday, September 29, 2008

The Strength To Keep Going

Matt Bryant did what he could. I know the feeling.

I think Matt wishes he was a geneticist or some kind of faith healer instead of a guy who kicks a ball. I think it's close to me right now, sitting and trying my hardest to think of what kind of video I'm going to make tomorrow.

Isn't there something I can do? God has seen it fit to wear out all my mind, all my spirit on work. Probably because if I didn't, I'd be doing what I do the other few waking minutes I get: cry and beg God for my girl's life.

It was some field goals. And I make some videos. But it was his gift. I think, on Matt's behalf, I think we both hope that the gift is good enough.

Sunday, September 28, 2008

Your Favorite Baseball Player

Your Favorite Baseball Player, Chris Sampson of the Houston Astros, continues to show his heart of giving and service. Here's a link to an article at MLB.com about his plan.

I still struggle with the love and care people show to us. But I'm convinced I can't stop people who are being guided by God to do His work. I can only be a grateful recipient who wishes you all knew how wonderful it is to be lifted by God's hand.

Saturday, September 27, 2008

What To Pray For

A new friend asked me what I'm praying for and I confessed what I've kind of confessed to you all - praying for complete healing for my daughter is so hard for me.

I think Zoe has been about me absolutely submitting my will to God's, absolutely seeking His will.

Much like when the phone rang tonight at 7:49. A coach from Kellen's school, Living Word, called to tell me that Kellen had a bad injury. He said Kellen was refusing to get into the ambulance. I talked to Kellen. He said he wanted me to come and get him. I spoke to the Fire Department representative and he said he was pretty sure Kellen had broken his leg.

My thought process: 1) guilt (should have been there) 2) I can do nothing to protect my children 3) not his leg. please. not his leg.

I drove my car onto the field and they helped me carry my giant son into the car. Guess where our next stop was?

Children's Hospital Wisconsin.

I wish I could explain to you how tied up into knots I get going by the EXIT to Children's. But, there we were, pulling up to the emergency room.

Almost 5 hours later, after X-Rays, we were heading back out to the car. Bad contusion. Crutches.

But no broken leg.

To pray for Kellen's health and his leg was natural. It's just as easy for me to pray for Zoe's health and heart.

It's just that complete healing is so inconceivable to me. Perhaps that makes me Sarah, laughing at God's limitations. And by no means follow my lead here. Pray hard, pray without ceasing. Pray for Zoe however you are led.

I wish it was as easily resolved as Kellen's broken leg.

Tuesday, September 23, 2008

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.

thanks, but

So somebody read this here blog and wrote an overzealous email to Zoe's doctor, who is upset after reading the blog.

And responded by calling Jen and telling her she has been more than fair, and some other comments regarding the thoughts I've posted here.

Makes me want to stop writing here. But i'll keep on going. I have looked at what I wrote about Dr. Frommelt in my blog. I don't see a mischaracterization. I see me being impatient, and human. I thank you all for your care. I wish you would have let us know when you want to help.

Here's what I wrote:

1. Zoe visited the cardiologist today for an ultrasound. The ultrasound confirmed that her heart isn't working as well as it did. This regression was predicted before Zoe was born.

Dr. Frommelt also noticed her heart is thicker - an unexpected observation. They're not sure why the thickness has occurred.

Dr. Frommelt is going to present Zoe's case to her peers tomorrow and will let us know Friday what the next steps are.

2. Dr. Frommelt didn't call today. I don't like that one bit.

When she looked at Zoe's ultrasound this week, she said that Zoe's heart was thicker. Does that mean it's a thickened heart? It's a good question, given the grave characteristics of thickened heart.

3. Dr. Frommelt, renowned pediatric cardiologist, might have called today. we don't know because it was after Jen had called begging for news. Whoever it was didn't leave a message.

Maybe everything's great and she has no news. (denial) I just have an inkling that there is news, and I wish that I could somehow trade some of my wasted heartbeats to Zoe. (bargaining)


I guess you could get me for mentioning the Doc's name? I've mentioned other doctors.

Jen is deeply, deeply saddened. She says she's going up to her room with her daughter, whose heart is failing her, and whose heart doctor is upset with me.

Meaning

"meaningless, meaningless, utterly meaningless..."

I try to fit all of my expectations, all of my hopes and desires into a frail little girl whose heart is slowly failing her. Why did I think she could hold all of those things?

Perhaps its the knowledge that God made her, no matter how frail or little. An innate knowledge that she - and we - were constructed for a purpose, for something more than a consistent pulse and to exhale CO2. There's something more.

The world we've constructed is pretty meaningless. It's a world where someone named Lindsay Lohan is well known. Where Don Rickles, it was breathlessly announced, finally won an Emmy.

But that's not to say that WE are meaningless. We, like Zoe, were built for more.

"Atheism turns out to be too simple. If the whole universe has no meaning, we should never have found out that it has no meaning..."

--Mere Christianity

Monday, September 22, 2008

Zoe At 6 Months

Zoe turned 6 months today. When the doctors broke their news to us 183 days ago, we were sure we wouldn't have 6 days. Or 6 weeks. We are truly blessed to have 6 months.

We sang happy birthday to her and had a candle on some brownies that Teia made. The boys wore hats (Aidan ripped Ethan's off and stepped on it).

Here's my sin - through it, I've somehow shifted from grateful thanks to "Now what?" (anger)

Dr. Frommelt, renowned pediatric cardiologist, might have called today. we don't know because it was after Jen had called begging for news. Whoever it was didn't leave a message.

Maybe everything's great and she has no news. (denial) I just have an inkling that there is news, and I wish that I could somehow trade some of my wasted heartbeats to Zoe. (bargaining)

Thank you everyone for all your wonderful prayers and wishes. This is a day filled with so much pride and emotion for all of us. We're truly humbled by what we've been given.

When You're Smilin'

In case you thought the banner picture was a fluke...here's a bunch of pictures of Zoe smiling. Posted by popular demand.

Friday, September 19, 2008

No Word? No Word.

Dr. Frommelt didn't call today. I don't like that one bit.

When she looked at Zoe's ultrasound this week, she said that Zoe's heart was thicker. Does that mean it's a thickened heart? It's a good question, given the grave characteristics of thickened heart.

I almost typed that Zoe turns 6 months on Monday, which would have been assuming i get the two days in between.

Pray for my daughter's heart. And her dad and mom's.

Tuesday, September 16, 2008

Zoe Update

Zoe visited the cardiologist today for an ultrasound. The ultrasound confirmed that her heart isn't working as well as it did. This regression was predicted before Zoe was born.

Dr. Frommelt also noticed her heart is thicker - an unexpected observation. They're not sure why the thickness has occurred.

Dr. Frommelt is going to present Zoe's case to her peers tomorrow and will let us know Friday what the next steps are.

Monday, September 15, 2008

CW's "One Tree Hill" Showing A Little Robbie Seay Love

Tonight's episode of One Tree Hill - that bastion of Christian ideals - features Robbie's "Shine Your Light On Us."

It's playing right now...how cool! Under the dialogue, you hear Robbie singing "if you feel lost, sing along..."

Houston Friends

Before Zoe was born, I think I thought I knew a few people in Houston. Now I'm praying for and thinking of Robbie and his family, Your Favorite Baseball Player Chris Sampson and his family and then the other million and a half people ravaged by the storm.

I'll let you know if I hear from anyone.

keep praying for marcia

I was able to communicate with Marcia. She's 5 weeks from having her baby and is very concerned. The baby's current weight is under three pounds. Please keep her in your thoughts and prayers.

I did cut and paste all of your comments and send them to her - Thank you all.

Friday, September 12, 2008

My 4 AM Friend

You've heard me talk about Zoe and me at 4 am. And how she just wants to be awake and kind of stare and make weird noises as if she's talking. I'm sure she thinks she's talking.

She likes interacting this way with me more than her mom. I'm not sure why. Some mornings, this whole interacting is beyond me and I doze off - that's when I get the Zoe punch. Some mornings, I'm actually pretty awake and lucid. And, as I've written before, some mornings, I'm just swept away by the reality of losing her.

I don't belong here. In this world, little kids die because they have an extra chromosome and its no one's fault. There is no logical or even emotional way to explain why this truth even exists. This is direct evidence that I was not made for this world.

C.S. Lewis says, "If we discover a desire within us that nothing in this world can satisfy, also we should begin to wonder if perhaps we were created for another world."

beautiful letdown

by switchfoot

It was a beautiful letdown
When I crashed and burned
When I found myself alone, unknown and hurt
It was a beautiful letdown
The day I knew,
That all the riches this world had to offer me will never do.

In a world full of bitter pain,
and bitter doubts,
I was trying so hard to fit in,
Fit in, until I found out

I don't belong here (I don't belong)
I don't belong here (I don't belong)
I will carry a cross and a song
Where I don't belong
I don't belong

It was a beautiful letdown
When you found me here
Yeah, for once in a rare blue moon
I see everything clear
I'll be a beautiful letdown
That's what I'll forever be
And though it may cost my soul
I'll sing for free

We're still chasing our tails
In the rising sun
In our dark water planet still spinning
In a direction no one wins
No one's won.

See, I don't belong here (I don't belong)
Well, I don't belong here, I don't belong
I will carry a cross
With a song where I don't belong
I don't belong
I don't belong here (I don't belong)
No, I don't belong here, I don't belong
I'm gonna set side
And set sail
For the kingdom come, kingdom come
Your kingdom come
Won't you let me down, yeah
Let my foolish pride forever let me down

Ah, Easy living, you're not much like the name
Easy dying, you look just about the same
Would you please take me off your list
Easy living please c'mon and let me down

We are a beautiful letdown
Painfully uncool
The church of the dropouts
The losers, the sinners, the failures, and the fools
What a beautiful letdown
Are we salt in the wound
Hey, let us sing one true tune

I don't belong here (I don't belong)
It feels like I don't belong here, yeah
It goes like I don't belong here
I don't belong (I don't belong)
Won't you let me down (I don't belong)
C'mon and let me down (I don't belong)
You always let me down (I don't belong)
So glad that I'm let down (I don't belong)
C'mon and let me down (I don't belong)
Cuz I don't belong here
Won't you let me down!

Thursday, September 11, 2008

Tracking Rare Incidence Syndromes

I had the honor to email interview Dr. Debbie Bruns who works for the TRIS project. I introduced myself but she had already found the blog.

It's interesting to me to talk to people who spend time talking and thinking through what is happening today. Here's an excerpt of our talk:

before my Ph.D., I was an Educational Therapist in a Skilled Nursing Facility in NYC. I had two girls with t18 in my class. They were three years old at the time and this was in the early 1990's. I looked for information to help me adapt materials and activities for them and found nothing. No, I did find something, literature telling me children with t18 don't survive to their first birthday.

Read her entire interview here.

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

Tuesday, September 09, 2008

Vaccinations

As an additional "take that" to those who find Trisomy 18 "incompatible with life" - Zoe received 3 vaccinations today. She's crabby and working through. Just adding a little fight to the fighter's world. Seemslike she's got more than enough.

Zoe Update Day 171

Zoe spent a good part of this morning - from 4-6ish - uncomfortable. We're pretty sure it was her reflux because after receiving medication, she conked out. Or else she just ran out of gas.

But outside of that episode, she's been really doing well. She sat quietly at the waterpark (held, of course) and did...ok in the car.

It's easy to see where she is in her interpersonal development. She's definitely trying to say something to us when she's awake and animated.

For those of you keeping track, we were told that 90% of babies diagnosed with Trisomy 18 die before 6 months of age. In days, that'd be in 9 days. In months, that would be in 14.

Pray For Marcia

A commenter asked me if I'd talk to Marcia, a young woman who is dealing with a pregnancy - and a diagnosis that her child has Trisomy 18 - alone.

All of the love and goodness and prayers you all have offered me have really been part of my solace. The other part is kids like Aidan, who in the pictures in the previous post, thought he'd put some suntan lotion on. I guess what I'm saying is it takes a lot to make it through. Marcia needs our prayers.

Monday, September 08, 2008

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.

Sunday, September 07, 2008

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.

Friday, September 05, 2008

Cookies by the Ironman

I'm eating some great cookies made by our favorite cyborg, Michael Hennessey. He guaranteed they'd be the best cookies I've had, and that's what happened.

And trying to figure out how this very kind and pretty laid-back guy does it. I have no idea. He mentioned today that the families of kids with Trisomy don't have the time to work on awareness - that's why he's working so hard.

Yeah, that's right. Michael isn't driven because he has or lost a child to Trisomy. He is driven because he has heard God's call and he's doing everything he can to bring awareness about the lives of children with Trisomy and their parents.

Please go to Michael's site, and donate. In hearing God's call, he and his six kids and his dear wife are stretching themselves out to their limit for kids and families everywhere. For Zoe. As he strives for the record, he's getting chances to talk to media (tonight he did a phone interview with WTMJ) (thanks, Erika and Chris) about Trisomy. In his pursuit, he sometimes eats less than he should or wants so that he can achieve his goal.

Wednesday, September 03, 2008

Politics and Life

1) abortion is not the government's choice. "My body, My choice". Let's take care of the millions of starving BORN children in the world first. Obama '08

2) http://www.dailykos.com/storyonly/

I guess we've hit the big time.

I'm getting comments from people talking politics. The first comment quotes...something and I think the writer thought by quoting that something they had authority.

I have no idea what the quote has to do with Zoe. Zoe's body? Zoe's choice? Her choice is to live. Her mom also chose to let her live because God has seen it fit to let her live. I think all three of them have made that choice.

You can throw me and my body in, too. Both of us choose to let Zoe live.

If anyone and their body would like to weigh in on their choice, let me know. I'm open to hearing from all of you.

The second comment I didn't reprint fully because it's just sinister. The fact that it is up on this blog is part sad/sick and part...awesome. The fact someone thought a good idea would be a post a link to an article insinuating that Sarah Palin faked her pregnancy because her daughter was truly pregnant...wow. Way to go. The article included statistics about what demographics deliver children with Down's Syndrome as PROOF.

Thanks to all you kooks. And your bodies. And your quotes. Keep them coming.

LinkWithin

Related Posts with Thumbnails