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: http://www.active.com/donate/buddywalk08/sydney2008

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

Peace,
Randall

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 http://downrightfaith.com 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 http://downrightfatith.com/weblog.

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.

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. (http://downrightfaith.com/weblog).

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.