Friday, October 31, 2008

Mud and Mire

Part my morning prayer this morning was Psalm 40, but what specifically caught my attention was verse 2

He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.

This caught my attention for a couple of reasons, mainly the phase mud and mire.

Partly because it corresponded with my daily devotional by Max Lucado, he used the phrase muck and mire, he was talking about how Jesus spent 33 years in the muck and mire, experience everything we experience. He went on to say we don't like to think of Jesus this way, we would rather think of the majestic, perfect Jesus. However, that Jesus is not easily related to, that Jesus is not reachable, we can relate to the man, we can follow his example

The other reason takes a bit more explanation. One of the things our church Men's group does is BBQ chickens once a month and then sell a complete dinner (chicken with 2 sides) to the congregation. One of my roles in that is to prepare the beans each month. Which means making several batches of beans. As I do this in a crock pot, it basically takes all week. Well this week I went out and bought a second crock pot. I had been planning to anyway, it is different in that it comes with 3 different size bowls 2, 4 and 6 quart capacity. ideally if I am making a dessert I can use the 2 quart, meal for the family the 4 quart, and meal for a bigger group or beans for BBQ the 6 quart. The other part of this story that is important... if I am going to cook something overnight in the crock pot I have to do it outside, otherwise the smell gives my lovely bride dreams about food and keeps her awake :-)

So this morning it is still dark outside as I begin my morning prayer. The phrase mud and mire jumps out at me, I continue my prayer, the sun starts to come up, I realize the patio table, where the two crock pots should be is empty, no that's not it, it is empty but is is also very clean and the extension cords that should be plugged into the crock pots are running through the glass... ah that's what's missing the glass!!!! Well it seems the table we have had for 7 years has finally stress out, and on the patio is a nice pile of mud and mire. Beans, glass from the table, glass from the crock pot etc.

The best part is I didn't get upset instead, God pulled me from the mud and mire and placed me on a rock and gave me a safe place to stand. instead of getting upset and ruining my day, I continued my morning prayer. Had I not been doing morning prayer, but rather been starting my day less God focused I am pretty sure I would have stayed in the mud and mire.

okay time to clean up the mess before it becomes a slime pit, good thing it's trash day :-)


Thursday, October 30, 2008

Day 1 but who's counting

i have been praying and thinking about habits and how to form a new one, one in which I start my day with prayer, study and blogging. I finally came to the realisation I wasn't going to do it on my own so I did what I should have done in the first place, I gave it to God. Yesterday, whenever I thought I about forming this new habit I would give it to God, as the day wore on my prayer began to form into a prayer to wake up at 6:30. Plenty of time for prayer, study and blogging.

So here I am 30 minutes after having woke up, with God's help, at 6:30 am. I prayed morning prayer via a great online resource I found called the and now I am blogging.

The opening reading for morning prayer for today was "Thus says the high and lofty One who inhabits eternity, whose name is Holy, 'I dwell in the high and holy place and also with the one who has a contrite and humble spirit, to revive the spirit of the humble and to revive the heart of the contrite.'" Isaiah 57:15

What an amazing God. God, whose name is holy, who is the high and lofty ONE who inhabits eternity could do anything he wanted, could spend His eternity in any fashion he chooses, and how does he chose to spend His time, reviving the spirit of the humble and the heart of the contrite! Praise God!

There is a song "Make me a prayer" I always remember one of the lines in this song, humble my heart so that You may draw near. God is as close as we will allow him to be, if we keep him at arms length he will be there, if we deny him and turn our back on him, he will be there. But if we humble ourselves, and humble our hearts God will draw closer... in other words if we get out of the way he will get closer. That is my prayer for today, humble my heart Lord that you might draw closer and that others might see your light shining in me.


Wednesday, October 29, 2008


Habits are a funny thing. Old ones are hard to break, new ones are hard to form, well good ones are hard to form, bad ones seems to happen naturally. My last post was over two weeks ago, I had the intention to post everyday. That statement is an example of both breaking a bad habit and forming a new good habit. The bad habit is wanting to do something but not getting it done, the new habit is writing a post everyday.

So I am trying a new method, not sure how it will work out but the world will see :-)

Here's a hint:
1st Corinthians 7:23-24 tell us "All of you, slave and free both, were once held hostage in a sinful society. Then a huge sum was paid out for your ransom. So please don't, out of old habit, slip back into being or doing what everyone else tells you. Friends, stay where you were called to be. God is there. Hold the high ground with him at your side"

I need to get back to where I was called.

one last note about habits...

a convent caught fire in the middle of the night, the nuns woke up in the smoke on the second floor and pondered what they should do. One of them suggested they take off their robes, tie them together and then use them to climb down out of the window to safety. So, they decided this was the best thing to do and proceeded, upon arriving on the ground they redressed and then called 911.

In the aftermath, with the building smoking a reporting asked one of the nuns if it was true that they disrobed and used their garments to climb out of the window? The nun confirmed this was true to which the reporter asked, "given the state of disrepair of your robes were you worried about them tearing as you climbed out?" "Not at all," replied the nun " as you know old habits are hard to break"

bad pun, good point. But remember Matthew 19:26b "With God all things are possible"


Monday, October 13, 2008

Take a minute for us

Our family is always busy, for good reasons. church, men's group, women's group, EFM, Jen's reunion group, my reunion group, community outreach, dsact, ds events, oh yeah and family activities (just wait until there are games to make, and school stuff).

Needless to say, Jen and I have to work to make time for each other, which I think we do okay at but could always do better. Yesterday was our 6 year wedding anniversary, which means we have been together for just under 8 years! my how time flies. Yesterday we were able to take a few minutes (hours but they flew by like minutes) to be just ourselves. We saw a really good movie and a movie that was good in that Jen was able to take a bit of a nap (I dozed too), we had dinner, at the movie (love alamo draft house) but more important than all of that we got a chance to talk and just be us, without having to worry about where Sydney was crawling off to, or why the boys were so quiet, or the dishes need to be done or or or... it was just us and it was nice.

On the other hand something was missing, the extra noise, the occasional celebrity like status of people wanting to talk to the baby, the having a converstation, between Anthony's conversation, those things that have become part of our lives. The good news is we still enjoy each other's company and had plenty of things to talk about for 8 hours without the kids.

Big thanks to Arthur and Cathy for watching them and for allow Jen and I to take a minute for us.

Sunday, October 12, 2008

One Big Family

Last night Sydney, Anthony and I went with 4 of their God Parents to Walburg. Walburg is a local community with great german resturants and since it is October... So we went to our favorite place, we got there early to get a good seat, in my opinion it was the best seat in the place. center of the floor, under the tent between both band stages.

So we ate dinner, had a beer and got ready for the bands to start. Anthony ran around with the other kids that were there, checking in occasionally, or one of us checking on him. Sydney was passed around too.

The bands started, we were playing dominos and occasionally dancing. But for some reason my radar kicked in, at the time I wasn't sure why. Eventually I figured it out, there was a woman hovering close to whomever was holding Sydney, well it didn't hit until I was holding her and the woman came over and nervously said, "she is so neice has down syndrome" sort of hesitant, sort of cautious, not sure if it was the right that to say or what to expect in response. I said thank you to the beautiful part and then smiled. she then asked if she could take her off my hands for a few minutes, I said sure... radar recalled she sat at a table to my right, Nancy looked over at me with a questioning look. I said, "her neice has downs" to which Nancy replied "Oh. It really is like one big family, having downs I mean"

It is, like one big family. an extra chromosone anywhere in your immedate family and you are in :-) Praise God for that family, and for being able to be a part of it. To be able to proudly go in public, enduring the occasional "stares" and rewarded with the occasional knowing "she is so precious/beautiful" from people who see what God sees :-)

Saturday, October 11, 2008

Time for the Saint's to March

Next Sunday is our second annual buddy walk. We participated last year when Syd was only 3 months old. At the time we needed to come up with a name. We had a great picture of Sydney in a teeshirt her grandmother had gotten her, on the front it said "Miricle" and on the back it had button on wings, I have been calling her my angel since before she was born, and her grandmother calls all her grandkids angels... anyway we had decided that was the picture we would use for the donation site and then found out we would need a name... so all our team members became Sydney's saints. The name has stuck.

What a differenace a year makes, last year we were not sure what to expect. Although we had been participated in many different fund raising events, Susan B. Komes (can't remember how to spell it), Walk for a Cure, Turkey Trot, JDRF, etc. This was our first buddy walk. We signed up, found a few people to join us (20 I think), raised some money and headed out.

It was amazing! it was not like any walk I had ever participated in, it was not about finding a cure, it was not about mourning being too late, it was not about another year of survival, it was more like a family picnic with fun and games, helicopter and swat humvees (to look at not to control crowds), face painting and fun, live music (biscuit brothers) and oh yeah there was a walk.

Well this year we go in eyes wide open, Jen has been on the planning committee from the beginning. I am supporting her and them from the outside, helping where I can. Of course next Sunday is all hands on deck so I am sure I will find plenty of work to do. As of right now we have 40 walkers, haven't raised as much money, not surprising given the current state of the economy. But we are looking forward to going back to our yearly family reunion :-)

I guess I should include information about the buddy walk and the team just in case you are curious.

This is the Sydney Saint Donation page:

There are links there about the buddy walk, joining the team etc.


Wednesday, October 8, 2008

31 for 21 is hard

There is good news and there is bad news about committing to 31 for 21.

The bad news is I haven't kept up, life happens (busy, busy, busy) but no excuses.
The good news is I am getting into more of a routine about posting daily, which is part of the reason I wanted to commit.

I am traveling for work yesterday and today, if I were providing excuses that would be it :-) today at our lunch break we started talking about kids etc. and of course I took this opportunity to brag about all three of my kids. We also talked about special needs resources in the Austin area and were talking specifically about Down Home Ranch and DSACT. I have posted some about the later but not the former....

If you haven't heard about Down Home Ranch check it out. DHR was started by Jerry and Judy Horton a number of years ago. At the time they were looking for resources for their young daughter who has downs, having looking around the country they didn't find what they were looking for so they started DHR.

The mission is to build a rural, self-reliant community for adults with intellectual and developmental disabilities, offering training, housing, recreation, and dignified employment, as well as opportunities for growth in mind, body, and spirit.

The accomplish this mission very well. I first heard about it a number of years ago as a volunteer effort through Dell. I found out a number of cool things about what they do. I immediately told our church about their poinsettia program, which we have used ever since. They have several green houses where they grow and then sellpoinsettias. I also learned about their "training" program where young adults can learn to prepare to live on their own.

They have many programs like summer camps, horse back ridding, etc

If you live in the area, check them out... they can always use volunteers. if you have a child or young adult with special needs, regardless of where you live check them out.

most importantly keep them in your prayers. keeping an operation like this up and running takes lots of work and lots of prayers

Monday, October 6, 2008

Looking back

I have noticed a number of post "looking back" to the "early" days

Jen has reposted the snowglobe story.

Nicole is bouncing back and forth from today to the "early" days.

this got me to thinking about why Jen and I started the blog in the first place. I think I mentioned at first it was to keep family and friends updated since Sydney was in the NICU for the 1st two weeks. that was the start but not the START.

we really decided long before Sydney came, but after we got the news, that we wante to share ur story and journey with other families. I'm a part time internet junkie, when i don't know the answer to something or even when I do to ensure I am right I turn to google, and other search engines. So it should come as no surprise that when we found out we were going to have a baby with DS I went straight for the web. If you have done this, or if you haven't done it lately... try it (later) go to Google or your favorite search engine and search for Downs, Down syndrom, T-21, Trisonomy 21 etc. What you will find, very prevelently is the clinical, medical, cold, often too cold, hard facts about what down syndome is and all the things that MIGHT happen to your baby and all the challenges your child will have, in many ways it is depressing.

So we set out to create a place that not only talks about our journey, but more importantly our journey WITH God. thus was created. it was originally a brief introduction with a link to a photo album and a link to the blog. we have since combined the two and automaticly direct everything to

Needless to say there are MANY websites that tell the factful but loving side of live with DS. where you can learn the joys, the heartbreaks, the ups and downs, hear from mothers and fathers (mothers mostly.... come on dads!!) from the kids and young adults with downs from their syblings. the issue is these sites are hard to find, you have to dig or know where to look, or know someone who knows.

The recent bill that was passed will better help ensure doctors tell both sides of the story to expecting families. And their are many great organizations and websites, in our area it is the Down Syndrom Association of Central Texas (DSACT). Many of these sites are easier to find for several reasons, they include a part of the country and they are linked to by many sites. so when people refine their search, from Down Syndrome to down Syndrome central texas or down syndrome texas or down syndrome Austin etc they will likely find DSACT. These organizations then often have links to family websites etc that I talked about earlier.

Okay i know i know what's the point. the point is there are MANY factors that get links moved up in the Google results criteria. Several of the important ones include page loading time, content, how many sites are backlinking to you, their quality and much more...

page load time is up to your service provider
conten is up to you
how may sites are backlinking to you an their quality are up to other people.... for your site. But for their site... you are other people :-)

so my challenge to all who are reading this is two fold:
1. more dad's tell us how you feel
2. link to each other... it will help people find you.

Prayer for Healing

A quick post... I am not in the habit of posting everyday, but I will make up for it today, I hope :-)

My wife and I lead a discussion with memebers of our church, the topic was special needs acceptance. I worked with the youth and Jen worked with the adults. As it worked out I finished a little early and headed over to the adult class to watch her in action :-) she was close to wrapping up when a good friend of ours asked an interesting question "With people with special needs, is it okay to pray for healing?" the conversation when deeper (you can read Jen post here). In a nut shell is praying for people with special needs, e.g. blindness, deafness, genetic disorders, etc. to be "cure" or "healed" okay?

I have several thoughts on this and I am sure there are others. 1. Pray what is on your heart. 2. when praying for someone else, asked them what they would like/need prayers for. 3. Somethings don't need to be "healed" or "cured"

I believe everything is created the way it is for a reason. or said another way, I believe God creates each of us in a unique way, for unique reasons, which we may or may not accomplish. I believe we often assume to be "healed" is to be made like me. I don't think that should be the definition, I think the definition should be to be healed is to be make like Jesus but since none of us can be Jesus then it would be to be like the person Jesus calls us to be, to live the life of the Kingdom of God. Jesus tell us in Mark 10:13-15 that unless we receive to the Kingdom of God like a child we will not recieve it.

So perhaps it would be more appropraite for us to pray that we were more LIKE people with DS, loving, accepting, caring, rather than that they were more like us.

Friday, October 3, 2008

Payday thoughts

It's funny It's funny how the mind works. As I processing what to write on the blog today, I was reflecting on some of the things my wife has written on her blog ( one of the most inspiration and thought provoking things is her snow globe analogy on the "mother's perspective" page in which she talks about life being like a snow globe and everything had just settled down and was calm and then God picked up her globe and shook it. I am probably not doing it justice... please read it yourself it is a wonderful story.... The point was :-) I have read many people's stories about what it was like getting the news getting you are going to or you have had a special needs baby. One of the more famous is you on a plane to go on vacation and ending up in a different country.

For me, I think I went through the various thoughts a father might have, I mourned for the things she wouldn't be able to do and as a result the things I wouldn't be able to do like she wouldn't be able to marry/and I wouldn't get to walk her down the aisle. I think most of those thoughts were quickly replaced with the thoughts that she would be able to do anything she put her mind to, same as my sons, same as anyone else, she will live up to her potential and into her expectations, if we don't limit those, neither will she.

My next thought was a fear for her outward appearance, not that I wouldn't love her but that other people would find it hard to get past it to her heart. If I am honest the image that first came to mind was the one from middle school health class, the black and white picture of a boy with down syndrome, I think it might have been entitled "Mongoloid Child". It only took about two minutes to search online to replace that image with hundreds of others, children that were beautiful. You can see Sydney on the right, but if you go to my wife's website you can see other pictures of her as well as find links to many other families blessed with children who have down syndrome, if you have that "mongoloid" image in your mind I encourage you to replace it, that is a face of down syndrome yes but it is taken out of context. That same face with a smile or that same face looked at with love is a thing of beauty.

I seem to be chasing rabbits this morning... I will come back to those and other thoughts in a later post. The thing I thought about today and thought about when we got the news 2 years ago and honestly think about every two weeks if not more is money. Not the typical money questions, truth be told I am not a worrier, I truly believe God will and has provided for our every need. That being said I still catch myself worrying about the future, not my future but Sydney's.

One difference in parents who have children with special need and those that don't is how they think about the future. Before we got the news that Sydney had down syndrome my thoughts were I will be 41 when she is born, that means I will be 59 going on 60 when she starts college or said another way I will be ready to retire when she starts her career 65 - 24. Now my thought is still the same, she will probably be ready to start college at about the same age. This is a BIG change from 20 years ago... in the '80s people with downs life expectancy was about 25 years and graduating from high school much less college was un-heard of. Today the life expectance is about 49 (doubled in the last 20 years) who knows with medical changes etc etc Sydney and her peer's life expectance might grow that much again which would be 75 (or 98 if it doubled). which brings me back to where I started..."Payday thoughts" What can I do..? How do I...? What is the best way to go about...? What should I be doing...? to make sure Sydney is taken care of after we are gone?

Here is my thought process. Sydney is 41 years younger than me. When she reaches the current life expectancy of people with downs, 49, I will be 90 years old. When she reaches 75 I will be 116, my goal has always been 110 so that is push it a little :-) What can I do to make sure she is as self sufficient? How do I help her live on her own? What is the best way to go about making sure her brothers are there to help her, but not do it for her? What should I be doing to get her ready to live on her own, a self reliant productive life in which she is in control. How do I ensure all three children are ready to live their lives, understand money, not make the same mistakes I have made. I think I know how to do this with the boys, I am not sure I know how, YET, to do this with Sydney.

So, what do I do...honestly sometimes I cry, sometimes I run through worst case scenarios. Ultimately I do the only thing that works... I give it to God. I know that God will provide for her and the boys the same way he provides for Jen and I. I know that God will open the doors and lead the way if I let him. As a good friend of mine puts it, I am God's son, and they are my children, but they are not God's grandchildren, they are in fact His sons and daughter, and he loves them as much as me and you. So the one thing I can do is set a good example, and into God's promises, and in their own time, they will do the same. This then ends the worrying :-)

Praise God!

Thursday, October 2, 2008

31 for 21 challenge

October is Down Syndrome Awareness Month. There is a challenge called 31 for 21. The rules are simple, there are no rules. The goal is to post every day for the month of October preferably about down syndrome, aka Trisonimy 21 or T-21. thus the name 31 (days in October) for 21 (T-21 or down syndrome).

The real goal is to raise awareness and remove stigma and/or dogma about down sysndrome.

I am the father of three wonderful kids. 2 boys 8 and 4.5 and a 15 month old girl. My daughter, Sydney, has down syndrome. My wife and I, mostly my wife, post about how the day in and day out details of raising a special needs child in a life of faith and how we rely on God. (

We started that site, when Sydney was born becasue she was in the NICU for the first 2 weeks of her life, and we needed a way to communicate to the masses that everything was okay. At first we just posted pictures and an occasional update. As time moved on we turned it into a real blog. The idea was we, both my wife and I, would post. My wife was a bit more diligent about it than I was, and now almost a year and half later I feel like I am invading her space when I post, though I don't think she sees it that way. So I thougth I would strike out on my own...

1 chose the verse 1st Samuel 16:7 as the title for the blog because I think it speaks to how God sees all of us, and it reminds us how we should see people. The world sees the outward appearance, but God sees the heart. Later Jesus tells us (Matthew 22:37-39) that the greatest commandments is to love the Lord our God with all our heart and all our mind, and the second is like it, to love our neighbors like ourselves. I believe this is what we are called to do with all people, regardless of outward apperance, we are called to love them will all our heart.

so that is my goal for October and beyond amist my ramblings and posts to bring to light the beauty that can be seen when we look at each other with the love of God.