Beautiful Quote

I thought of you today, but that is nothing new. I thought about you yesterday, and days before that too. I think of you in silence, I often speak your name. All I have are memories and a picture in a frame. Your memory is a keepsake, from which I'll never part. God has you in His arms. I have you in my heart.

Miss you, Nate...

Love,
Dad

runNYC4Nate...MISSION ACCOMPLISHED!

26.2 miles run....$11,852 raised for FSMA

A little before 4:00PM on Sunday, November 6, 2011, I crossed the finish line in Central Park culminating two years of work. When I registered for the lottery to the NYC Marathon in 2009, I had no idea that it would turn into the endeavour that it did. What started out as a "lark" became so much more. It became a mission to honor Nate and help all the other SMA kids & their families by raising funds for FSMA.

A huge THANK YOU goes to Jen and Owen for their love, support and for putting up with a spouse & dad who is training for a marathon. The early morning runs before work, the long runs on the weekends, the afternoon naps after the long runs, etc... I could not have done it without them.

Another huge THANK YOU goes to all of our family and friends that donated to FSMA and offered their support & encouragement to me as I prepared for this marathon. I continue to be amazed at how many people Nate touched in his short time here with us. I am extremely grateful for your generosity!

Here are a couple of photos I wanted to share:

A shot of the Verranzo-Narrows Bridge from the Green Start Village

A shot of the Manhattan skyline as I cross the Pulaski Bridge:

A shot as I run up First Avenue...the number of runners and spectators was incredible:

My 2011 ING NYC Marathon Finisher's Medal:

Thanks again for your support and generosity!

Trey

Notes from a Dragon Mom

Please click on the link below to read a very moving and accurate New York Times article on what it is like to parent a child with a terminal genetic disorder:

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=3&src=tp&smid=fb-share

Another SMA family posted it on their daughter's blog (http://scarlettshope.blogspot.com/) and I wanted to share it here.

Thanks,

Trey

runNYC4Nate Update - 8/16/11

The final countdown has begun...

Three weeks from today, we'll be in NYC and I will be running the marathon!

A HUGE THANK YOU to all of our family and friends who have donated to Families of SMA! As of today, you have generously donated $8,010 in memory of Nate. I cannot begin to tell you how much this means to me & Jennifer...we truly appreciate your thoughtfulness and support!

I completed my last long run today (20 miles) and now begin my taper in preparation for the 26.2 miles on Sunday, November 6. I also look forward to running in cooler weather as it was in the upper 80's today in Tulsa!

I received my Bib Number last week and I am way at the back of the pack! I am #64-491 and I start running in the final wave at 10:40AM. If you are interested in tracking my progress, here is the website for the marathon and just follow the instructions under "Runner Tracking": http://www.ingnycmarathon.org/

Once again, THANK YOU for your donations and support! Please check back here on the evening of Sunday, November 6, to see how I did.

Thanks,
Trey

Can't the helicopter go get him?

Last night before going to bed, Owen wanted to go outside to look at the moon. As we stood there, a helicopter flew over the house. We then headed inside and back to his room.

After saying prayers, Owen asked if I'd lay in bed with him for a few minutes. We talked about his visit to the dentist, his new toothbrush and the balloon he got for being a good patient.

Out of the blue, he says, "I want Nate to come home" and he buries his head in my chest while wrapping his arms around me and squeezing tightly.

I told him that I wish Nate could come home too but he has to stay in Heaven.

Then he says, "Can't the helicopter go get him?"

I tell him that I wish we could fly the helicopter up there but we can't. We talk about Nate being able to run and play in Heaven and how Nate watches over him from up there. He then wonders if Nate or Jesus has come down from Heaven and grabbed the Batman toy that he left on Nate's grave. After talking about it, we decide to go there on Saturday after my run to find out and put some new flowers on Nate's grave.

I kiss him goodnight and get a big hug in return. I tell him that I love him and get an "I love you, too!" as I close his bedroom door...10 minutes later he is sound asleep.

Trey

Happy Birthday, Owen!!!!

Today is Owen's 4th birthday...HAPPY BIRTHDAY, Owen!

Love,
Dad, Mommy & Angel Nate

Photos of Owen

Jen took this photo of Owen in the backyard last week:

This photo was taken this morning as he went to his Young 4's class at Asbury's Mother's Day Out:

This is SMA. And this is what incredible looks like.

The Gwendolyn Strong Foundation has put together a beautiful photo montage of SMA children...Nate is the fourth photo in the slideshow.

Click on this link to watch: http://www.gwendolynstrong.com/2011/08/this-is-sma-and-this-is-what-incredible-looks-like.html

Thanks,

Trey

Owen at Nate's Grave on 8/3/11

On Tuesday evening, I told Owen that we were going to Nate's grave on Wednesday since it was his birthday. He told me that he wanted to bring Nate a toy as a present and when I asked him which toy, he said "Batman". And that is what he did...you can see Batman leaning against the vase.

Jen and I have certainly been blessed with two amazing boys!

Trey

Happy Birthday, Nate!

Eight years ago today, a special child entered our lives...little did we know, how special he would be. In his short time here with us, he taught us many things and made a profound impact on our lives. As we celebrate his birthday, please also help us celebrate his memory.

Here is one of my favorite pictures...Nate & Jen shortly after his birth:

Here is one of the last pictures of him. Nate & Jen...together as always!

Happy Birthday, Nate! We love you and miss you!

Love,
Daddy, Mommy and Owen

runNYC4Nate Update - 7/31/11

THANK YOU...THANK YOU...THANK YOU!

Through YOUR generosity, I am at 48% of my fundraising goal in less than 2 weeks! So far, $4,795 has been donated to FSMA in Memory of Nate and in support of my marathon goal.

My training continues to go well and stay on track. I run twice during the week in addition to my long run on Saturday or Sunday morning, just depends on our schedule. I am following a stair-step approach on the long runs...two consecutive weekends will have long runs of increasing distances followed by one weekend where the long run is 3 to 5 miles shorter. Last Saturday was an easy 6 miler while today's run was 10 miles. My training plan has me max out at a 20 mile long run three weeks prior to the NYC marathon.

Given the excessive heat that we've been facing, my long runs are starting earlier and earlier. It's kinda crazy to think that I am getting up earlier on the weekends to go run than I do during the week to go to work! But, that's a small price to pay given the satisfaction I feel at the end of the run. I am also glad that I have chosen a fall marathon...I don't think we'll have to worry about the temperature humidity index in New York this November!

Thanks again for your generosity and support!

Trey

26.2 Miles for Nathan and FSMA

Yep, that's right...26.2 miles...a marathon.

On Sunday morning, November 6, 2011, I will be running the 2011 ING New York City Marathon in memory of Nathan and to help raise funds for Families of Spinal Muscular Atrophy (FSMA).

Those that have known me a long time, know that I have done marathons before but this one is extremely special. I am doing this to honor Nate and all the kids who battle SMA with everything that they have every minute of every day.

As I read the blogs and websites of SMA families, I realize that I am not the only one taking on such an endeavour. Bill Strong, whose daughter Gwendolyn has SMA - Type 1, is running in the Santa Barbara International Marathon in November 2011. You can follow this SMA family on http://www.gwendolynstrong.com/

Additionally, Stephen Taylor recently completed his second Western States 100 in memory of Owen Simmons. Stephen knocked out 100 miles in 26 hours and 54 minutes and I feel he sums it up best on why we would do these things for our SMA kids: "we run for those who can't". Click on the following link to read more about Stephen's incredible accomplishment: http://100miles4owen.blogspot.com/.

In addition to running for Nate, I hope to raise $10,000 for Families of SMA (FSMA). This is a great organization that provides huge amounts of support to SMA families and promotes research that focuses on a cure for SMA. I have created a webpage so everyone can donate directly to FSMA: http://www.fsma.org/GiftReg/runNYC4Nate and I have added a link on Nate's blog right above his photo.

Thank you for your support and please check back to see how my marathon training is going!

Trey

Fourth of July - Past & Present

The Fourth of July is always great in our neighborhood...a parade for the kids, a cookout and then tons of fireworks. Owen had a blast this weekend...we had friends over to swim in the pool and cookout on Saturday then 3 nights of fireworks. Here is a photo of Owen right before the neighborhood parade on his award-winning bike:

Nate loved the Fourth of July and we always shot off fireworks for several nights around the Fourth. This photo from 2009 is one of my favorite photos of him as you can see how much he was enjoying it all!

Owen comment...

Tonight Owen and I ate hot dogs out back on the patio while Jen sat in one of the chairs by the pool. At the end of dinner, as I was gathering up the plates, Owen grabbed his glass of water, headed to the gate for the pool fence and had this exchange with Jen:

OWEN -- "Mommy, can you open the gate? I want to relax too."

MOMMY -- "Sure, Owen."

Then he proceed to set his cup down on the side table, climbed up in the other chair and tilted it back.

Birthdays Past

I want to share some of my favorite photos from my past birthdays. I tried to upload some photos from 2010 and 2009 but Blogger kept rotating them to a sideways view. I tried everything but could not get them to display properly...stay tuned for another post when I finally get it figured out!!!

2008

2005

 

2004

Thanks,

Trey

Who says the water is too cold to swim?

On Saturday, it was almost 80 degrees in Tulsa! We'd been outside most of the day and I asked Owen if he wanted to put his feet in the pool. Now keep in mind that the water temperature is in the low 70's due to all the rain we've had! One thing lead to another and he ended up in his swimsuit. He played in the pool for close to 30 minutes and we got some great pictures and a cute video.

I also know that you're wondering about the hat... Owen has been on a Woody and Buzz Lightyear kick since Easter when Jen got him those two toys. Earlier in the day, our neighbors, J & Jessica, brought over some old Halloween costumes for Owen and one of them happened to be a Woody outfit. Needless to say, the hat has been with Owen ever since he found it in one of the bags of costumes!

Thanks for checking in on us...

Trey

Remembering Nate

1 year…52 weeks…365 days

It’s still hard to believe a year has past since Nate died. At times, it seems like it was “just the other day” because the grief and memories are so intense. Some days are better than others but no matter how “good” the day is, there is always something missing.

Nate was a very special soul. Jen & I are grateful to God for each and every day that He allowed us to spend with Nate. Nate fought a valiant battle against SMA and he did it with a smile on his face. Sure, he had his share of bad days but when you go back to look at videos and pictures of him that smile is always there.

As I prepared to write this blog update, I came across a post that I titled “REFLECTIONS Blog Post 4/30/08”. It was written almost exactly 3 years ago shortly after Skylar, another SMA child, earned her Angel Wings on April 28, 2008. The following quote from Aron Moss is so much better than anything I could come up with and captures the essence of not only of Nate and all the other SMA kids but for ANY handicapped child:

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for his parents, all extraneous reasons to love him fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

Nate, we LOVE YOU and MISS YOU so much!!! Please continue to watch over us and send us some of your strength & smiles to help get us through the days ahead…

THANK YOU to all of our family and friends for their love & support! 

Trey