Nathan's World

Beautiful Quote

2011-12-18T14:51:00.000-06:00

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!

2011-11-14T07:46:00.004-06:00

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

2011-10-18T07:10:00.000-05:00

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

2011-10-16T20:34:00.000-05:00

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?

2011-09-07T12:41:00.000-05:00

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!!!!

2011-08-23T16:08:00.000-05:00

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

Love,
Dad, Mommy & Angel Nate

Photos of Owen

2011-08-22T15:57:00.000-05:00

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.

2011-08-16T13:00:00.000-05:00

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

2011-08-05T22:30:00.000-05:00

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!

2011-08-03T08:50:00.002-05:00

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

2011-07-31T17:07:00.000-05:00

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

2011-07-16T16:22:00.002-05:00

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

2011-07-04T22:52:00.000-05:00

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...

2011-05-30T19:45:00.001-05:00

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

2011-05-11T18:44:00.000-05:00

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?

2011-05-01T19:54:00.000-05:00

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

2011-04-28T08:09:00.001-05:00

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

Merry Christmas

2010-12-25T08:39:00.000-06:00

Nate,

MERRY CHRISTMAS! We hope you have a great day in Heaven....WE LOVE YOU & MISS YOU!!

To all of our family & friends,

We wish you a MERRY CHRISTMAS!

Trey, Jen & Owen

Owen's cardiologist appointment

2010-12-18T18:53:00.002-06:00

Owen's appointment on Friday went well. The results from his halter monitor were good and Dr. Lundt was very pleased with him. It took a little bit of time to get his EKG done at the start of the appointment since he would not stay still....surprise, surprise! We'll keep his medication the same and he does not have to go back until next December.

I consider that an early Christmas present for Mom & Dad!

Thanks for checking in on us...

Trey

Owen & his heart monitor

2010-12-10T21:27:00.000-06:00

Here is Wednesday's post from Jen's Facebook page on Owen:

Every six months Owen has to wear this heart monitor & halter for 24 hours to see how his heart defect (SVT) is doing. I was worried he wouldn't leave it on but he has been great!!! No problems! What a good boy! He's even playing with the monitor part of it saying it's his "Secret Box" (from a SpongeBob Squarepants episode) !!!! :)

Owen & the Cleaning Ladies

2010-12-10T20:47:00.005-06:00

This morning, Nancy took care of Owen while I was having my knee surgery (all went well and it actually feels pretty good right now). Every other Friday morning the maids come and today was one of those mornings.

Owen really likes these ladies and he is always trying to help them clean. Several of the ladies that come have done so for several years and are quite attached to Nate & Owen. I'll never forget the total shock and sadness on Betty's face that Friday morning when we had to tell her that Nate had just passed away.

The best plan with Owen on "Cleaning Fridays" is to get him out of the house! One thing Owen loves to do is play in Mimi's car so that is where they were this morning when the maids arrived. One of them happened to be Betty so she walked up to Nancy's car to say HELLO to Owen and here was Owen's response...

"I am going over to Mimi's house. You can go inside and clean. We'll be back later."

Not exactly what she expected to hear but priceless...

Trey

Owen misses Nate

2010-12-09T21:00:00.002-06:00

This evening as we were winding down the day and getting Owen ready for bed, I told him that Mimi was going to be here when he wakes up in the morning. I told him that Dad is going to the doctor's office tomorrow and Mimi will take care of him until Mommy & Dad get back.

In reality, I am having arthroscopic surgery on my right knee to repair a torn meniscus so I can get back to running.

He and I talked about tomorrow morning because, for a long while after Nate passed away, Owen always asked when someone would be back as they left. Both Jen and I attributed this to the fact that he realized that Nate left and never came back.

About 5 minutes after I told him "night"and closed his bedroom door, I heard him kinda whimpering and talking softly. I went back into his room and asked him what was wrong. The answer was not what I expected...

He told me that he was missing Nate and that he was sad & crying. I was stunned...I told him that we all miss Nate and that he is doing great in Heaven.

He then asked if Mommy was driving me to the doctor's office, who is driving Mimi to our house and a couple of other questions. I told him that everything will be OK and not to worry that I just have to go see the doctor. He wanted several hugs & kisses and I was very happy to give them to him!

Owen is a true blessing just like Nate! Sometimes I wonder what he remembers and understands then something like this happens to put it all in perspective...

Thanks for checking in on us!

Trey

This is SMA

2010-11-30T21:27:00.002-06:00

The Gwendolyn Strong Foundation created this moving video about SMA. Jen & Nate are in it...the photo is one of our most cherished memories as it was taken shortly after Nate was born and it was the FIRST time that Jen held him.

Link to This is SMA: http://www.youtube.com/watch?v=m2sqOEkjnOg

Thanks,
Trey

Owen's doctor's appointment

2010-11-16T12:57:00.003-06:00

Well...Owen's right ear and throat are infected. We don't know if he has strep throat or something else but it's definitely one of the causes for his fever. His white blood count was almost 23,000 (double the normal amount) and his throat looked horrible so Dr. Cyrus started him on an oral antibiotic. Since he got home, he's eaten 3 Popsicles and the ibuprofen has kicked in. Hopefully, he have a good nap!

Thanks for the thoughts & prayers and we'll update everyone tomorrow...

Trey

Guess I spoke to soon...

2010-11-15T15:03:00.003-06:00

Shortly after my last post, Jen called to tell me that Owen is back to running a fever. His nap was only about an hour & a half long and he just wants to lay around. He is definitely trying to fight off something and we have moved his doctor's appointment to Tuesday morning.

Owen's Monday Update

2010-11-15T13:28:00.002-06:00

Owen woke up with NO fever this morning! His night was OK but it was a somewhat restless night of sleep for him. I could tell that he was dreaming a good bit because he talked and mumbled a lot during the night. If fact, about 3:20AM this morning, I heard him singing "Old MacDonald Had A Farm" and I am not joking! He sang the whole main part including EIEIO...

I had given him a dose of medicine at 3:00AM and I thought that he was still awake from that. When I got into his room, I realized that he was sound asleep but singing in his sleep instead of talking!!! It provided a much needed laugh even though it was the middle of the night...

Thanks,

Trey

Owen's scary episode

2010-11-14T16:34:00.002-06:00

Yesterday, Owen woke up with a fever and ran one all day long. It ranged from 99 to 103 and we could tell that he did not feel well. It wasn't like he was extremely sick...he drank juice, milk and water...ate some scrambled eggs...he just seemed like he wanted to lounge around for most of the day.

About 5:00PM, I was in the kitchen, Jen was in the den and Owen headed into Nate's room to watch SpongeBob. Shortly thereafter, Jen heard a sound that just didn't seem quite right so she went to check on him. When she walked into the room, she found him on the floor by his chair having convulsions. She screamed for me to call 911 then picked him up and carried him out to the den.

Our immediate thought was that he was choking. I tried to get my finger into his mouth to clear out anything that might be in there but his teeth/jaw was clenched shut. He was breathing loudly so I put my ear to his chest and heard his heartbeat. I then realized that he was having some sort of seizure.

Jen was on the phone with 911 and we could hear the sirens from the Bixby Fire department heading our way. I just kept talking to him and checking to make sure he was still breathing and had a heartbeat. I had Jen get a couple of ice packs out of the freezer and I put them on his face, torso and arms to try to stimulate him.

A few minutes later, the Fire department arrived and got O2 going on him. The Captain and the EMT helped me with him and he started to come around slightly. The O2 mask on his face irritated him and he started to fuss, which was a good sign. EMSA arrived about 4 or 5 minutes later and began checking him out as well. Once he was stabilized, we took him to the ER at St. Francis. On the ride over, he pretty much just stared out the window and looked around at the inside of the ambulance.

The paramedic said that it sounded like a febrile seizure, which is a fever induced seizure. Jen notified the pediatric cardiologist on call for Dr. Lundt and he told her the same thing. Once we got to the ER, he slowly returned to his normal self...he wanted to be held by either me or Jen and he wanted to go home NOW. All of the tests (blood work & EKG) were normal so the conclusion was that he did, in fact, have a febrile seizure. The theory is that his fever spiked (his last dose of ibuprofen was at 12:30PM and he was just about due for a dose of Children's Tylenol) and this is how is body reacted. The ER doc gave him an IV antibiotic in case he does have an infection that is causing his white blood cell count to be up. If it's viral, there is nothing that we can do except to try to keep his fever down with Ibuprofen & Tylenol as it runs it's course.

Owen slept pretty good last night even though we had to wake him at 3AM for his dose of Ibuprofen. Today he has been doing pretty good...he is still running a low grade fever and doesn't really want to eat much. He does want to play and has been alternating between me and Jen as his "playmates"!

Needless to say, the whole episode scared the hell out of me & Jen. Our biggest fear is that something will happen to Owen and that was the first thing that popped into our minds. With Nate, we always knew what to do and how to do it when an emergency situation arose. This time, it was scary because we didn't know what to do right at the first. There is a 10% chance that he could have another febrile seizure but they are NOT life threatening and do NOT cause brain damage. They usually last about 15 minutes and that was pretty much the timeframe of his episode. Going forward, we'll have to keep his fevers under control and we hope & pray that we never see him like that again!

Please keep Owen in your prayers and we'll keep you updated on how he's doing...

Thanks,
Trey

Halloween Night

2010-11-02T10:33:00.004-05:00

He loves these girls, Sophia and Olivia!

Eating pizza with Olivia, Sophia and Carter

Ready to Go!

He knew just what to do to get his treat! And he even said thank you - most of the time :)

Halloween Parties

2010-11-02T10:32:00.005-05:00

At our neighborhood Halloween party waiting for the hayride to start with another spiderman.

Shannon's Halloween party.

More Pumpkin Patch

2010-11-02T10:29:00.006-05:00

This was a very cool corn maze that had scarecrows along the way.

Owen rode Shadow the pony for a long time all by himself! Last year he was clinging to my dad for dear life as he rode the horse. Wow, how he has changed in one year! Brave boy riding horses and camels! :)

A real pumpkin patch at the end of the corn maze.

Pumpkin Patch

2010-11-02T10:27:00.003-05:00

Owen loved the camel rides! He wasn't afraid one bit!

Owen's Halloween Class Party Pic

2010-11-02T10:25:00.002-05:00

Owen's Halloween Festivities

2010-11-02T10:19:00.003-05:00

What a long, busy, fun weekend it was! Thursday Owen had a costume parade at school and then a party in his classroom. I was able to stay and enjoy that with him. Friday morning we went to the pumpkin patch and we all had a great time! Saturday our neighborhood had a costume block party, which was a lot of fun, with food, games, hayrides, and dancing. Sunday (actual Halloween!), we had another party to go to hosted by our friend, Shannon (she helped with putting together Nate's Up With Trees). Lots of kids and fun at this party as well! Halloween evening we went over to our neighbors (The Nalleys) for pizza before trick or treating. Owen loves those kids! And then finally trick or treating! Owen did great, much more into this year. He tired out pretty quickly but had a lot of fun! We missed our Nate. Halloween was different without him, but almost everything is different now that Nate is not with us. But at least Owen keeps us going and keeps us smiling and having fun! Nate is probably loving watching his brother enjoy life! :)

Enjoy all the pics! Jennifer

Nate Paying it Forward

2010-11-02T10:12:00.006-05:00

We have donated a lot of Nate's equipment and supplies to different charities. But some of the equipment we really wanted to know where it was going to help someone like Nate. Our friends, The Gundy's (who have a son, Kyle, with SMA Type 1 as well), have a local charity that donates equipment to needy families with SMA or conditions similar to SMA. We gave them the Vest and Cough Assist, along with a few other items. The vest and cough assist were very crucial in Nate's care and are wonderful medical devices. Both of those have been given to families that needed them. I received a note from a mom, Jennifer, whose son Zeke, has Cystic Fibrosis. They were the ones who got the vest. It has already helped Zeke so much since they have had it and has helped make his life easier. That makes us so happy! :)

Above is a picture of Kyle Gundy enjoying Nate's old swing! He's almost too big for it, but at least he will get to enjoy it for a short time. Then I'm sure they will pass it on to another family whose child would love it as well. This would all make Nate very happy to know others are benefitting from his old equipment and enjoying his swing!!! :)

Yesterday Owen and I went to a birthday celebration for Kyle at Chuck E Cheese. He turned 6 years old! Yeah Kyle! It was good to see them and be able to enjoy Kyle's special day with him. The only hard part was when we pulled up and Owen saw Kyle in his wheelchair Owen yelled "Nate!". I said no, that's Kyle, but he's a lot like Nate. Then he seemed fine and had a great time. Happy birthday sweet Kyle!

Nate's First and Second Halloween

2010-10-28T14:02:00.003-05:00

2003 - Nate the lion

2004 - Nate the frog (too many cute pics this year to just post one!)

Nate's Halloweens

2010-10-28T13:42:00.005-05:00

2006 Nathan Russell, M.D. (SMA Specialist)

2007 - Nathan Russell, Police Officer

2008 - Nate the Sailor

2009 - Nate the Jailbird

Nate loved Halloween. It's going to be a tough weekend without him. Since moving to our new house when Nate was 2, we would always sit outside or in the garage with Nate and hand out candy. He loved seeing all the kids and all the kids loved seeing Nate in costume. It's going to be a lonely, different holiday this year. Here are my favorite pics of Nate from each year except 2005 when he didn't get dressed up. I believe he wasn't doing well at that time and we weren't able to celebrate. Enjoy our handsome boy in costume! Love and miss you buddy! Hugs and kisses! Mom, Dad and Owen

Charlee Bisch & SMA Awareness

2010-10-19T17:13:00.006-05:00

Charlee Bisch is the daughter of Steve & Meri Lyn Bisch, who live in St. Louis. Steve and I were roommates and Delta Kappa Epsilon fraternity brothers at Vanderbilt and we have remained good friends over the last 20-plus years.

At the end of August, Meri Lyn sent us an e-mail about Charlee participating in the 2011 Miss Missouri Outstanding Teen program. One of the components of the competition requires that the contestants have a platform to promote. Meri Lyn offered several suggestions but Charlee told her that it had to be something special to her and told her that she had selected "SMA Awareness" as her platform. Meri Lyn then shared one of the papers that Charlee had to submit to compete in the preliminary competition:

AWARENESS OF SPINAL MUSCULAR ATROPHY (SMA)

In 2003 my Dad's college fraternity brother was expecting his first child. Nate Russell was born a beautiful and perfectly healthy baby boy. At five months old they noticed delays in his motor stills. They had him examined and tested by several physicians. The result's they received from the testing were something they never imagined. Nate was diagnosed with type 1 SMA. SMA stands for Spinal Muscular Atrophy and is a disease which affects the motor neurons of the spinal cord and the brain stem. Sadly, type 1 is the worst of the three types and most often fatal. Doctors told Nate's parents that he would never live past his first birthday. His first birthday passed, then his second, then third, fourth, fifth, and sixth. Nate wasn't able to celebrate his seventh birthday. Fighting as hard as he could on April 28, 2010, Nate earned his Angel Wings.

I have always loved children and I remember meeting Nate for the first time. In 2006 my family moved from California to St. Louis and while driving our motor home to St. Louis we stopped in Tulsa, Oklahoma to visit with Nate's family. We saw many pictures since Nate was born and followed his blog but had never met him in person. My family entered his room where he was sleeping and immediately I heard the noise from the machines that monitored him. I thought, WOW this is some kid!

My second encounter with Nate was in 2008. It was a wonderful weekend. Four of my Dad's fraternity brother's families met in Tulsa to celebrate Easter with Nate's family. One of the major affects of SMA is that Nate was not able to talk. Instead, he used his gorgeous big blue eyes to talk and sometimes he made a faint sound in his throat. Nate was completely mesmerized as I would read books to him. Nate also loved watching SpongeBob and the younger kids would often watch with him. We all dyed eggs for Easter. We brought the eggs to his room because he wasn't well enough to join us.

The Miss Missouri Outstanding Teen Program will offer me numerous opportunities to promote my platform, "The Awareness of Spinal Muscular Atrophy". I would like to start a 5k walk promoting SMA awareness targeting all age groups. At the walk I plan to have several booths to help educate everyone on the facts of SMA and show everyone that raising awareness can be fun and educational.

Seeing Nate sleeping peacefully assured me that God blessed him with six and one half crazy amazing years of life. It showed me that he was here to make a difference in people's lives and this is why I am now sharing Nate's story. Nate's life made me realize that more people need to understand this disease and know that the children with SMA are no different than us but just packaged a little differently.

I am very happy to report that on Saturday, October 16th, Charlee was named Miss Gateway St. Louis Outstanding Teen 2011 and will be moving on in the competition to become the 2011 Miss Missouri Outstanding Teen. Here is a picture of her winning the crown:

Jen and I are honored that she would select SMA awareness as her platform and will do all that we can to help her educate people.

Charlee, THANK YOU so much for selecting SMA Awareness as your platform and helping us keep Nate's memory alive!!!!

Trey, Jen, Owen & Angel Nate

Up With Trees (Nate's Tree)

2010-10-16T17:08:00.004-05:00

Today we went to Hunter Park for the planting of Nate's tree, thanks to Up with Trees, and donations made by my dear friends to make this possible. It was perfect! Beautiful weather, beautiful park, beautiful spot. This park is special because we used to take Nate here to feed the ducks and walk around. We still take Owen there a lot and I run there on occasion right by all the trees. The spot they picked for Nate's tree is right by the path, and right by the pond. We loved it! I had a very hard time this morning. Tears were flowing. I never have any idea how things are going to affect me. Knowing this week that the planting was coming up, I never thought I would get so emotional. It's still so hard, I go days without crying and seeming "okay", and then I will cry and cry and cry! Oh how we miss our Nate. This tree is just another wonderful gift given to us to remember him and we appreciate it so very much! Jennifer

Up With Trees - Nathan's Tree

2010-10-16T17:05:00.003-05:00

SMA Race n Roll Kansas City

2010-10-16T16:59:00.003-05:00

Trey and I went up to KC a couple of weeks ago to run in the 10th Annual SMA Race n Roll to benefit SMA research. It was a great day. Very emotional, especially when I met the Sykoras for the first time (son Charlie is Nate's age with SMA Type 1 also and reminds me so much of him!). I kinda lost it then and also during the speech before the race. It's so nice to meet people who you have so much in common with, but emotionally Trey and I are still very raw and it's hard to keep it together. I wore a pic of Nate on my search to honor him. My brother ran the race with us also. My sis-in-law, Aunt "B", watched and cheered us on. It was a good turnout and we will definitely make this an annual event! Next year, maybe we'll be a little more healed and will be able to meet more families and stay a little bit longer. It was a fun weekend in KC with lots of festivities with two of our favorite people, Jeff and B! Thanks for having us!

More Owen's 3rd B-day pics (a couple months late!) And a Youtube Video

2010-10-16T16:52:00.003-05:00

These were at Incredible Pizza riding go karts! He loved it and we let Uncle Jeff and Owen win and receive the 1st place ribbon! Then he got to eat filet for one of his many b-day dinners. Not a big fan of steak quite yet, but he loved the ice cream cake. Youtube video of that is http://www.youtube.com/watch?v=YsJIwrNg54w .

Owen at Cousin Daisy's Baptism (Youtube Video)

2010-10-16T16:41:00.004-05:00

Too Cute! Owen is listening intently to priest and "reading" the Bible during the baptism. He keeps saying "God is Great, Amen", which is part of his blessing we recite before we eat. What a sweetie!

http://www.youtube.com/watch?v=D3SnZ6ssHOg

Signs from Nate

2010-09-18T22:08:00.002-05:00

For the last couple of weeks, I have really been missing Nate. Today, he decided to help me out a little by giving me three separate signs...

One of the ways I have dealt with the grief of his death is by running. Back in June, I tore the meniscus in my right knee so, after a cortisone shot, I have gone to a combination of biking and running. This morning during my bike phase, I was riding up a hill in the older neighborhood north of Twin Creeks III. Both Jen & I view hills the same way, we ride and run them with a vengance "for Nate" because, while they are the toughest parts of a ride or a run, they pale in comparison to his battle against SMA and what he went through every day of his life.

I was thinking about him as I went up this hill and about 3/4 of the way up, a butterfly suddenly landed on my left hand and, just as quickly, it flew off. It was almost like a quick kiss, it was so brief. I knew it was him and it was something that I really needed.

After biking, I went for my run and decided to run up the same hill. While it would have made a great story for me to see another butterfly on that same hill, it did not happen. As I was heading back home, I decided to run down the street behind us then come up our street to end my run. Normally, I just make a left turn and run to our house but Nate had another sign to give me. As I was coming up our street, which is a hill, three small butterflies (flying in a straight line together) literally bounced off my left leg then flew off in front of me. I couldn't help but smile...

Now here's the topper...After my cool-down, I started walking up our driveway when I glanced to my left. There in the middle of our driveway, was another butterfly just sitting on the ground. I stopped and decided to walk towards it. As I got close, it flew off about three feet then landed. I walked closer and it did the same thing again. Every time I got close to it, it moved away but did not fly off...it moved just out of reach. The symbolism of this is not lost on me...while I would give anything to kiss, touch or hold Nate, even for the briefest time, I know that he is always around me but will always be just out of reach...

Thanks for the signs, Nate, Dad really needed them today! I love you and miss you SO MUCH!!!

Trey

Nate gained a new friend in Heaven

2010-08-30T21:27:00.003-05:00

On Sunday morning, Nate gained a new friend in Heaven. Mike Lisk, a good friend and coworker for almost 20 years, passed away after suffering what appears to have been a massive heart attack. Mikey was a larger than life character who never met a stranger. He and I worked, traveled and shared many a Guinness beer together. In fact, one of my best "small world stories" involved Mikey and the Black Rose Irish bar in Boston.

One of the things I will treasure most about Mikey is his care and concern for Nate. One of his sons was born prematurely and required a very high level of care after his birth. Mikey was one of the few friends who could truly relate to the challenges and struggles that go with being the parent of a fragile child. He always asked how Nate was doing and would do anything for him or us, if we needed it. And that is how he was for everyone.

Mikey will be buried on Friday with full military honors as he faithfully served our country for 20 years as a USAF Combat Controller. Like so many others, I will miss all of the "Mikey Stories" but I do know a few things for certain...

When Mikey got to Heaven, he found Nate and gave him two big hugs...one from me and one from Jen...then he sat him down and started telling him stories. And if I know Mikey, he still won't be done when Jen and I finally join them!

Trey

Owen's words of wisdom

2010-08-26T07:11:00.002-05:00

On Monday evening we were swimming with Owen and talking about his birthday, Nate and all the things that we had done that day. We told Owen that Nate is wishing him a big happy birthday from Heaven in the sky. We said "Hi, Nate...We Love You!". Then Owen said "Nate's on vacation". So true...Heaven is the BEST vacation ever!

Trey

Happy Birthday, Owen

2010-08-23T13:31:00.002-05:00

HAPPY 3rd BIRTHDAY, OWEN!!!

We love you,

Mom, Dad & Angel Nate

Youtube Video of Owen

2010-08-17T10:30:00.002-05:00

Owen's first celebration of many for his 3rd b-day which is August 23rd. This one was at Pop and Grandma Annie's house in Dallas. So fun! He had a blast!

http://www.youtube.com/watch?v=WlY9OXZ5QZg

Nate's Grave Marker

2010-08-11T20:52:00.005-05:00

Nate's Grave Marker was installed today and it is beautiful!

This photo was taken with my BlackBerry so we'll take better ones with a real camera and upload them soon...

Thanks,

Trey

A bunch of Ducks & A Swan

2010-08-10T22:33:00.003-05:00

On Sunday, Owen and I went to Floral Haven to see if Nate's marker had been installed. It had also been a while since I had been to Nate's gravesite and I really felt the need to go there. Unfortunately, the marker hasn't been installed yet and I've called to see why there has been a delay.

When we get there, I always give Owen the choice between sitting on Nate's bench or going to see the ducks. Of course, he wanted to go see the ducks...

We walked over to the area where the ducks usually are and there weren't any ducks. Off to our right about 30 yards, there were a few geese but no ducks. I told him that I didn't see any ducks but we'd walk down to see the geese.

Literally within seconds of starting to walk that way, all of the ducks that were on the other side of the roadway (about 50 yards away) started crossing the road and heading our way. I am not talking about a couple of them...I am talking about 25 to 30 ducks! The ENTIRE group crossed the road, went under the fencing and came down to where we were standing. This was a mix of ducks...momma ducks, daddy ducks and ducklings still with their fluffy feathers. Owen and I stood there mezmerized and watched them come down to us.

Then, in the pond, a black swan and a white swan swam by. I told Owen to check out the swans and about 2 minutes later the white one came up the bank and waddled toward us. It literally walked up to about 3 feet from us...only separated by the fencing...and just stared at us.

The ducks and the swan just stayed around us. Most of the ducks settled down under the shade of a tree and the swan just stood there. I think most of you readers remember Jen's swan experience and all I could do was think of that story.

After a while, Owen and I went walked back to Nate's bench and sat there for a bit. I KNOW that Nate sent the ducks and the swan to us and I am so grateful for that experience. I have REALLY been missing Nate and his sign really helped...THANK YOU, NATE!!!!

Thanks for checking in on us...

Trey

Happy Birthday!

2010-08-03T03:53:00.001-05:00

Happy Birthday, Nate!!!

We LOVE and MISS YOU SO MUCH!!!!

Love,
Mom, Dad & Owen

Life is slowly changing

2010-07-28T17:01:00.006-05:00

It's been a tough couple of weeks. Of course, the dreaded thing you have to do when you lose a loved one is figure out what to do with all of their stuff, clothes, medical equipment in our situation, furniture, and our handicap van. And then, there's Nate's room. Oh, I how I love Nate's room. Definitely the funnest and coolest room in the house. Owen loved Nate's room as well. He spent a lot of time in there. So, with all of these changes we were faced with, we decided to take on the easiest ones first.

First was all of Nate's medical supplies like meds, syringes, catheters, diapers, special formula, etc etc. We decided to donate all of this to medical missions through our church. We did this awhile ago and the lady was very grateful. All of the stuff about filled her van!

Second, was selling the van. I know it's a handicap van, but I loved this van. I was very attached to the van because it was really "Nate's van". Very special to me. At first we contacted the place we bought it from and thought about selling it back to them. Then Trey put the word out if anyone needed one. Through a friend at work we were contacted by a couple who is caring for their elderly parents, one of whom is wheelchair dependent. They have been having to take public transportation and never went anywhere but the dr.'s office. After a few visits, and a test drive with the parents (they loved being out and about, other than the dr.'s office), we made a deal. We are so happy that Nate's van is being put to good use and we know where it is and it's improving somebody's quality of life!

Of course, Nate's clothes are still all hanging in his closet, because it won't be too long until Owen is fitting into all of them, so we will leave them there.

Nate's room was a hard one. Couldn't think about this for awhile. Trey and I thought maybe a reading room, somewhere quiet where we can reflect and read, etc. Also thought about an exercise room, since Nate couldn't move his muscles, a way to honor him was to be healthy and work out. Then, it hit me. I really don't want to change Nate's room. Nate's room is a fun room, and it's perfect for a little boy. Perfect for Owen to play. We moved the hospital bed and all of the shelving with medical equipment, out into the garage and pretty much just moved stuff around. We moved all of Owen's toys from the living room and middle room to Nate's room. I LOVE IT! And Owen is so excited. He plays in there all the time. And now I go in there all the time! I know Nate is smiling down on us having fun and laughing in his room and enjoying it the way he did. I have attached pics on the post below.

Nate's major equipment (suction machine, nebulizer, cough assist, and bipaps) are still here at the house. Not sure if we are going to donate them to MDA or SMA. Still waiting on that. Also, there are his wheelchairs. I have some contacts here in Tulsa through Nate's old therapists, and hopefully we can find somebody who can really use these chairs and Nate can "pay it forward". There is a possibility we will donate these to MDA or SMA also. Not sure yet.

Nate's headstone should be ready soon. I've only been out there once since Trey and I were there with Owen and it was very difficult. We will definitely go when his marker is out and take pictures. It's going to be beautiful. It has three of our favorite pictures etched in it.

I know in my last post I was talking about this hole and emptiness, which is still and will always be there. Some of you mentioned maybe volunteering or adopting. Yes, Trey and I have thought about a lot of different things. I know I will be giving back in some way to honor Nate and to give back the gift that Nate gave me, which is a love for special needs kids. I just don't know when and what that will be. Time will tell. God will lead me.

Friday, Owen and I have been invited to Nate's kindergarten "Class reunion" at a splash park. I'm so excited to see all of Nate's friends and hopefully Mrs. Lacy, Nate's teacher, will be there. But I'm also worried I'm going to break down balling my eyes out. That was such a special time for Nate and the kids were so sweet, and some of them even came to his service. But, I know I will keep it together for their sake, and be strong. Then when I leave, I'll probably lose it! But Nate would want me to go see his friends again and tell them hello from him and how much they all meant to him and that's what I'm going to do!

Trey and I are headed to Vegas this weekend and I'm a little nervous leaving Owen. But I'm sure things will be fine and hopefully Trey and I can enjoy ourselves. It's going to be hard because Nate's 7th birthday is on Tuesday, August 3rd, and we will be in Vegas. But it doesn't matter where we are, special birthday wishes, kisses are prayers are heard from anywhere!!!

That's it for now. Thanks for checking in and I'll post more about our trip, Nate's class reunion and Nate's 7th b-day next week.

Jennifer

Nate's Room/Play Room Pics

2010-07-28T16:57:00.007-05:00

What these pics don't show is the ceiling which is really cool. Nate loved his ceiling. It has big stickers/pictures of Superman, Spiderman and Batman. Owen loves them too :)

I know, it's been awhile so here's an update (long one!)

2010-07-11T14:01:00.005-05:00

Well, to tell you the truth, I just haven't been in the mood to post. I don't know. I just have been trying to "ignore" everything. Things became too painful, I just wanted to escape and not think about anything, not talk about it, and especially write about Nate and my "feelings". I wouldn't even get on the blog to check it. I've been having a really hard time lately. So has Trey, but he's much better at handling things than I am. Either that, or he internalizes it all (which is probably the case). I try to internalize, which means I just withdraw. Keep my mind occupied on other things or nothing at all and just be alone or play with Owen or watch meaningless television. I still have a hard time looking at Nate's pictures, videos and going into his room. I go into this tunnel vision thing, where I go in there, but I don't think, if I start to think about him and what once was, I freak out! I do start thinking all the time, but I block it out, move on to another thought or something to do or distract myself. Trey has been able to keep busy at work, but there's a lot going on there as well that has us stressed. (Hopefully, that situation will work out!) I seem to be more lonely. Just me and Owen at the house all day, it seems so quiet. I spent a lot of time getting out and being around people for awhile, then I just wanted to hibernate and be alone, with Trey and Owen. I need to find a balance. But, it seems like I'm one extreme or the other. It's hard to be alone, but also very hard to be "social" and "normal". But Trey and I are trying to work things out and we just take it one day at a time, and time seems to be flying by. But yet it seems like yesterday that Nate passed away. I've come to realize the pain will ALWAYS be there. I cry at random times, never know when it's coming. At church a couple of weeks ago, a downs syndrome choir came out and did a presentation of music with sign language. I lost it! I had to leave and go the bathroom and ball my eyes out. Just seeing special needs children, my heart just aches for Nate, but I also am so moved by them. I LOVE special needs kids! I thought it would get easier, but it's actually gotten harder. I miss him more and more every day. And I think because at first with all the calls, cards, etc., losing Nate was somewhat bearable (not really). But that of course passed. Time to move on. But not for Trey and I. We've tried, I've tried. Our "moving on" is plain and simple - being and living in the moment and trying to handle the pain day by day. But, I need to (as Trey has been able to do) not forget Nate and not ignore the feelings or the memories, but remember, reflect and thank God for his life. Even if it's painful. That's the hard part, I hate feeling sadness and pain. I feel like I could die, it's so painful to lose a child. But ignoring it, won't make it go away and it's not fair to Nate. He deserves to be remembered and thought about. Even if I cry all the freakin' time - LIKE I AM RIGHT NOW!!!!! UGH!

As far as signs from Nate, I get one almost daily. A while ago, I was running (during all the times I was posting early with all my "signs"), and I of course was looking for something. All of a sudden, this beautiful white, angelic butterfly was flying next to me while I ran. It stayed with me for the better part of my run, flying all around me and following me. Since then, I see a white butterfly in our backyard or frontyard on a daily basis. Sometimes randomly, but mostly when I'm thinking about him or ask him to give me a sign, there it is, the angelic butterfly appears!

Owen, our dear sweet, funny, lovable Owen. He has been such a blessing! He's kept us busy and to the extent he can, kept us preoccupied and from sinking into depression! He keeps us smiling and he keeps us GOING! He's a busy, wild little one. He's talking up a storm and has quite the personality. And such a sweetheart. We still stay our prayers nightly to Nate and sometimes Trey or I will cry a little (it's hard not to!). But what really gets my tears flowing is when Owen says "Mommy cry, mommy hug" and he gives me a hug. He pats me on the back and says "mommy miss Nate". Oh my, love that little guy!

As far as Owen's heart defect, he's doing really well. He is taking his medicine three times a day without much of a problem. I think he has come to realize this is just part of his daily routine now and sometimes even reminds US when he needs to take his medicine :) !

Owen is also swimming like a fish. He took one week of swimming lessons and you wouldn't believe what 5 days did for him! He's jumping off the side and going under water! But he's still a little attached to his floaties. And Trey and I are too, safety and comfort knowing he can just play around is nice! We've spent a lot of time in our pool and at the neighborhood pool. Owen loves being around the other kids.

The 4th of July neighborhood parade was a big hit! Lots of fun and Owen had a great time! It was sad not to have Nathan with us. He loved the parade and fireworks! It's so weird, because we had so much fun with Owen, but yet I cried at the parade too b/c I was missing Nate and wishing he was enjoying it with us! Good times, but yet such hard times.

So, that's it for now - enjoy the TONS of pictures!

Thanks for checking in!
Jennifer

Owen with Nana

2010-07-11T14:00:00.004-05:00

Baking a cake with Nana

He likes it!

Owen Swimming

2010-07-11T13:58:00.005-05:00

As you can tell, he likes to jump off the side!

More Parade and Fireworks

2010-07-11T13:56:00.005-05:00

This is Owen's "new" wagon. It was Trey's when he was a kid. Trey's mom (Nancy), had it refurbished and it looks brand new! Pretty cool! :)

Last Year's 4th With Nate :(

2010-07-11T13:51:00.003-05:00

Nate loved the fireworks!

After the parade, and the downpour! Nate thought this was so fun! He loved running through the rain!

Before the rain, Nate loving it then as well!

Owen Riding in the Golf Cart at the Parade

2010-07-11T13:50:00.004-05:00

What fun!

Fire Truck at the Parade

2010-07-11T13:49:00.004-05:00

Probably Owen's favorite part of the parade, meeting the firefighters and going inside the truck!

4th of July Neighborhood Parade

2010-07-11T13:44:00.005-05:00

Nate's Grave Site

2010-05-31T10:21:00.004-05:00

A couple of pics of his bench and grave. There's a nice fountain in the background, and you can hear the water. Nate loved the water. We didn't stay long yesterday because Owen was all over the place. We'll go back by ourselves when the marker is ready and take pics of that.

I have a really hard time at his grave. I don't feel comfortable there yet. I know his body is there underground and I want to dig him up and see him again. I know that sounds so weird and creepy. It's easier for me to talk to him in his room or anywhere at the house, because I'm talking to his spirit, to him as an Angel. At his grave, I know his body is there and it's so hard!!!! His body underground, that's just not right!!! But that's how it is with everyone who passes away, so why am I not able to deal with this aspect of it???? At home, his body is not here, it's easier to accept him being an Angel and a spirit. At his grave, he's there! I just can't handle it! But, I have to. I just have to.

Jennifer

9:45 p.m. last night

2010-05-29T07:57:00.004-05:00

Trey has his watch alarm set to go off every night at 9:45 (the time Nate passed away). The alarm beeps for like 10 seconds. He did this to say a little prayer at this time, or just think of him. Last night I was just getting to bed and the alarm went off. As soon as it went off, I heard Owen over the monitor wake up from a deep sleep saying "pool, pool, pool" over and over again, until the alarm stopped, then he went back to sleep. Now, let me just say that Owen is a VERY good sleeper. He rarely ever wakes up in the middle of the night, and he has never woken up and "talked". I truly believe that this was a sign that Nate was visiting Owen in his dreams and they were playing in the pool together in Heaven! I know it! I had a rough evening last night and this put a smile on my face and I fell asleep smiling! :)

Youtube Video of Owen's Prayers

2010-05-26T12:43:00.003-05:00

Every night, before Owen goes to bed, we all go into Nate's room and say prayers to Nate. Then we all blow a kiss to Nate and Owen tells him he loves him. HAD to get this on video!!!

http://www.youtube.com/watch?v=jScqdmToIbc

Owen is loving the pool!

2010-05-26T12:40:00.003-05:00

I'm MAD! But getting over it...

2010-05-26T12:24:00.003-05:00

It's me. I haven't been able to post anything in a couple of days because I'm really just sick and tired. Sick and tired of depressing news, stress, sadness, etc. I needed a few days to accept reality (AGAIN!), and get over my initial feelings of random emotions, the most popular emotion being anger. I mean, what in the world? A heart defect, seriously??? It was, needless to say, a crazy weekend. I initially wanted to beat someone up, yell at God, scream at the top of my lungs. It took time for me to process what was going on. I didn't really even know exactly what Owen had until Monday I think. Didn't want to know. Didn't want to hear the three initial diagnosis of one of my son's, AGAIN! Didn't want to know what caused it, NOTHING! All I wanted to know when this all first happened that he was going to be okay. I didn't get that feeling until late Friday afternoon. So, here I am posting about Owen and SVT, not Nate and SMA. And in the midst of major loss and grieving, a curve ball is thrown our way which distracted us for a few days - all focus was on Owen. And still is of course. But the grieving for Nate has reappeared. And now we have grief, which will always be with us, but also a heart problem with Owen. But, I am relieved that SVT can be controlled, and when he's 12 to 14 years old, can be healed of this heart defect.

Owen is doing fine. The heart medication he is on slows his heart rate and has caused him to sleep more and get a little more fatigued easily. But, the dr. said his body will adjust to this new medicine in time. Our main worry was him actually TAKING the medicine. He is a bit picky about medicine. It has been a little bit of a battle, but I think we are making progress and with each dose, he seems to do better. Thank the Lord because we're not talking about tylenol here, we're talking about HEART medication! UGH! And, supposedly if he takes the medicine, he should have no more episodes of SVT.

I've posted a few pics of Owen. One is of him Monday when he had to wear a halter with probes all over his chest to monitor his heart rate for 24 hours. We had to give him a sponge bath that night. Also one of him listening to Trey's heartbeat. Now we are using Nate's pulse ox on Owen (unbelievable!) to check his heart rate throughout the day and also listening to his heart with the stethoscope. So now he likes to take part and listen to everyone else's hearts :) - my darling boy!

Random pics of Owen

2010-05-26T12:20:00.001-05:00

Owen Update

2010-05-23T13:35:00.004-05:00

If you don't say or think "Are you freakin' serious?" at least a half dozen times while reading this update, I will be surprised!

As you know, Jen and I had planned to make a quick getaway to Las Vegas but since I am posting this message, you can tell that we're not in Las Vegas...

On Friday morning, Jen took Owen to the doctor's office because he was running a fever of 101. He started running it on Thursday morning and that evening complained that his ear hurt. Our thought was that his ear infection had flared up again and that he probably needed to start his antibiotic again. We just wanted him seen by Dr. Cyrus or Dr. Rippy before we headed out of town. During the initial part of the exam when Jen is telling the nurse about his symptoms and she's checking his vital signs, she says that his heart rate is too fast and that she needs to get a pulse oximeter to get an accurate reading. When they hook it up to Owen, the reading shows a heart rate of over 200 beats a minute...in fact, it ranged from 215 to 250 bpm while they had him hooked up to it.

The nurse immediately gets Dr. Cyrus who checks him out and tells Jen that he has SVT (Supraventricular Tachycardia) and that he needs to get to the hospital right away. Needless to say, Jen freaks out given all that we've been through with Nate. I am walking out to lunch with a buddy when I get the call from her while she's sitting with Dr. Cyrus in his office. I am thinking that she's calling to tell me that we were right about the ear infection and she is off to get the prescription filled. I stand stunned in the parking lot as she tells me that Owen has a heart problem, his heart rate is over 200 bpm and Dr. Cyrus wants him to get him admitted to St. Francis. This is extremely hard to process since Owen is not showing any outward signs that this is bothering him at all!

I met them at the ER and we get in pretty quickly. Dr. Cyrus has called ahead, told them that we are coming, told them about Owen's status and that Nathan just passed away on April 28th. The ER doc has us try a couple of things with Owen to see if we can get his heart to "reset" itself naturally...of course, none of these work. Now, we must try Adenosine so they start to put in an IV while the doctor talks to us about the risks of Adenosine. The way she explains it, the Adenosine will "stop" his heart then it should immediately restart and beat normally.

Jen and I are totally stunned by what is taking place...we had hoped to never see the ER at St. Francis again and definitely not 24 days after losing Nate. Owen cannot have a serious medical condition...this has got to be some fluke incident...these are the thoughts going through our minds.

After getting everything prepared, they inject the Adenosine and his heart rate immediately starts dropping and within a minute or two, it's down to a normal rate. The situation is back under control and things begin to calm down somewhat. Eventually, we get him transferred to room at The Children's Hospital and get a chance to talk with the resident on the floor and the pediatric cardiologist.

The cardiologist explains that Owen does in fact have SVT and that it is an "electrical" problem with his heart. Basically, he has an "accessory pathway", which is an abnormal "bridge" of tissue that connects the atria and ventricles. This extra pathway provides a second route by which electrical impluses in the heart can reach the ventricles and it allows these impluses to travel abnormally fast. In Owen's case, something triggered this accessory pathway to start working and the electrical impulses in his heart got into a circular pattern...they were going down one pathway (the normal or the accessory), and then back up the other. This circular pattern is what caused his very rapid heart rate.

The next part of the discussion is a blur of medicines, options on how to treat this and a discussion of a procedure in 10 or so years to "zap" this accessory pathway. Even though we have a pulse ox at home and can hook Owen up to it for the night, she wants to keep him overnight for observation. They hook him up to a handheld EKG monitor that will record every heart beat and be monitored by a tech in the PICU downstairs. If he has no other episodes for 24 hours, then he can go home.

I went home about 7:00PM to shower, change and grab stuff for an overnight stay at the hospital. Jen and I sit with him until about 9:00PM when we can tell he is about ready to fall asleep. She heads home as he & I spend an uneventful night at the hospital...he slept for 11 hours and only looked up at the nurses when they took his blood pressure and temp. during the night.

Morning comes and he is back to his normal self...constant motion, numerous walks around the floor, visits to the play room and the solarium...hard to believe that this kid has a heart defect!

The cardiologist comes and we talk some more about the next steps. We'll go to her office on Monday and they will give us a monitor for him to wear for 24 hours. This will record every heart beat and then we'll go back on Tuesday to get it off. In a week to ten days, they will have the results of this and we'll visit with her about the report. She'll also do an ultrasound of his heart just to make sure there are no "physical" or "structural" problems.

The good news is that this is not life-threatening...it can be controlled by medicine and he can undergo a procedure when he is about 12 years old to "zap" the accessory pathway.

The bad news is that Owen has a heart defect and it friggin' sucks! Yes, I know that he is going to be fine but the timing of all this is terrible and I feel that we've already had WAY MORE than our fair share of medical issues to deal with!

Since we've gotten him home, he's been fine. The medicine does not taste too good so it will be a challenge to get him to take it 3 times a day...bribery for a bite of a brownie or a cookie worked last night but not this afternoon!

Jen will do another post tonight or tomorrow so stay tuned...

Both of us know that Nate will watch over all of us, especially Owen, and things will turn out all right. We continue to thank you for your love, prayers and support during these difficult times!

Trey

Cloud Slide Show Presented by God and Nate

2010-05-19T09:46:00.003-05:00

Here I go again. I wasn't going to post this, because it's another SIGN. Yes, I know. My birds, rainbows, swan, clouds, etc., etc.. It's over the top. But I had scribbled down notes from something that happened to me the other night that I don't want to forget. Knowing I will eventually lose this piece of paper at some point in time, I want to have it here, SO I REMEMBER!

One of my many nights, outside, crying by myself, asking questions to God and Nate. Talking to them, and praying. I was so upset because I needed to know he was being take care of. I KNOW God and Jesus are taking care of him. My head and heart know this. But I just wanted to see it. See that Nate was okay. Taken care of like I took care of him, or of course, better than I took care of him. You see, I knew Nate and how to take care of him better than ANYONE else. No offense to Trey (who is the best dad EVER!), but I was with him ALL THE TIME. And the care he required was intense. I knew every little thing about him. And now, it's out of my control. God and Jesus are taking care of him. But he's healthy now, so they have it easy - LOL :) So as I'm crying, questioning, asking to know that he's okay, the slide show appears. It was a windy night, storms were on their way, so clouds were passing by quickly. Each cloud picture stayed for about one minute and then the next would appear. So, here's what I saw:

First, a heart (Nate is loved)
A cross (Jesus is with him)
A rainbow (Nate's Rainbow)
A person with a strong body (Nate is now strong)
A house (God's home - Heaven)
Then a hand was holding on to the house (Nate is holding hands with Jesus in Heaven)
A smiley face (He is happy)
And then a tone of birds fly by.....

The End.

"The Story of Owen"

2010-05-17T13:36:00.015-05:00

Okay, so here it is. A very personal story, but one I want to share. God has worked miracles and given us blessings through Nate and you've heard a lot of those stories. But, you see, God also gave us a HUGE blessing with the life of Owen.

When Nate was about 1 1/2 years old, Trey and I started thinking about having another baby. But, of course, knowing SMA is genetic, the chances of having another baby affected with it was 25%. To us, too big of a risk. So we looked into other options. I had just been to the SMA Convention and learned about a procedure called PGD (pre-genetic diagnosis). Basically, you do in vitro fertilization. Then the embryos are sent off to a lab to test for SMA. The ones that aren't affected are sent back and those are the ones that will be implanted. The SMA affected embryos will either be destroyed or sent to a lab for research. You can look at this two ways. 1) We need research to find a cure; or, 2) That's a Nathan - that's a life!. I felt strongly about both, but leaned heavily towards #2. That is where my heart was the whole time. But I convinced myself that sending them for research was OK. So we started the process. About half way in, things weren't doing what they were supposed to do in my body, so we had to quit this cycle and had the choice to start again with my next one. After tons of money wasted and my gut & heart telling me this wasn't the right choice, we moved on.

We let things be for awhile and then about a year later decided to try donor insemination. Trey and I discussed this at length many times. He wouldn't be the biological father. But it didn't seem to matter to him or to me. It's just like adopting right?? For about a year, month after month, I went through the insemination cycle. Nothing. Then, it happened, I got pregnant! However, about 7 or 8 weeks into my pregnancy, I started having pain. I had an ultrasound and found out it was an ectopic pregnancy. I underwent surgery, which wasn't successful. Had to go back in for another treatment to "rid" my body of the fetus that was still in my tube. The dr. told us the chances of me getting pregnant again were very slight. My one tube was now severely damaged with scar tissue and since I had an ectopic pregnancy already, the chances of having another one was a lot higher in either tube. Trey and I were very upset, but had to tell ourselves, that it just wasn't meant to be. The baby probably had something wrong with it, or this wasn't God's plan. To be honest, I don't think Trey or I ever felt comfortable with the method of donor insemination anyways. I just convinced myself it was the only way because I WANTED ANOTHER CHILD DANG IT! Selfish me, again.

So now what? Of course, we had always thought about adoption, but knew we would not be the type of family first on the list. Because we had a handicapped child who required so much care, the chances of getting accepted for an adoption was next to none. And foreign adoptions were out because one or both of us would have to travel overseas and that was not possible. We had never really talked to anyone with an agency, but just from what we had heard, and read, we knew it would be nearly impossible to adopt. But, we started seriously looking into it again. Gathering information, getting ready to contact some agencies to see if there was ANY WAY we would qualify.

And then, guess what I do find out - I'M PREGNANT! What ????? Now, let me just say, without getting too specific, Trey and I were VERY careful. Since doing the donor insemination, I had to do an ovulation kit every month for a year, so believe me I knew EXACTLY when I was ovulating. And I did not get pregnant during that time. And the fact that I had scarred up tubes. Unbelievable! Of course, our first reaction - a combination of shock and happiness. Second reaction - don't get our hopes up, it's probably ectopic again. Also there was a lot of anxiousness at first - what if the baby has SMA??? The doctor even mentioned terminating the pregnancy. Are you kidding me!!! No way! SMA or not, this was meant to be. This was how it was meant to be! And we had an advantage if the baby had SMA, we knew all about it and how to care for a child with it, etc. It didn't matter. After the first ultrasound showing everything was where it was supposed to be, relief set in. It was not ectopic. That's all we cared about. We chose to forego any in utero testing for SMA, because we had faith and didn't want to risk anything. Again, it didn't matter. So testing would be done after birth. It takes two weeks to get the results. But to tell you the truth, the moment the dr. said "you're pregnant", I knew everything was going to be okay. A complete miracle from God. I just knew it! So, God took control of our "baby" destiny. He always had a plan, and that was for Owen to be a part of our family. We had to go through a lot to get him, but it was worth every minute! God gave us another redheaded, blue eyed, STRONG, SMA-free baby boy. What would we do without our Owen? Owen's middle name is Bennett. We chose that because it means "blessing or blessed". And by the way, the name Nathan means "Gift of God". So God gave us a Gift and a Blessing in two redheaded boys.

Owen and Nate have very different stories. But God had His hand in both their lives and for this we are very grateful. We are the luckiest parents!

Jennifer

Therapeutic Writings

2010-05-17T13:13:00.005-05:00

This blog, and writing, have become my "therapy". It's a good way for me to express my feelings and get them out instead of just laying in bed crying and thinking and thinking about things (which I do also sometimes).

The past few weeks have been a blur. The first week after Nate passed was horrible. Emotionally draining. Cried more than I've ever cried. Then when company left and life began again, I got busy. Busy playing with Owen, going out to eat with Trey, planning trips, taking Owen out and about, to neighbors houses, running, going to the gym, shopping, etc. I rarely would allow myself time to stop and think. Because I couldn't. I still have a hard time going back into Nate's room. Haven't watched any videos of him yet. Pictures are even hard. During the last few weeks, I hate to say it and I feel so guilty, but I'VE also enjoyed being "SMA free". I didn't think about Nate being gone, only SMA being gone. Owen has been able to do things that he couldn't do, Trey and I have been able to do things we couldn't do and plan things we haven't been able to do. No machines, no treatments, no pulse ox alarms, no nurses, no therapy. Stuff that consumed my daily life. But now that a couple of weeks have passed, I am thinking okay, I had my break and now where's Nate. WHERE IS HE! I want him back!!! I will give all the freedoms up in a heart beat to have him back! But that's selfish. It's been selfish of me to enjoy these freedoms, but also selfish of me to want him back because HE would still have SMA. I could deal with it, but apparently Nate couldn't anymore. I still can't believe he is gone forever (at least from earth anyways). In my mind, it's going to get harder over time, not easier. The longer he is gone, the more I will miss him. Everybody says, time heals. But I just don't think so. I guess I have no choice, but to move on, life keeps on going. I cannot say Nate is dead or that he died. Haven't been able to since that night he passed away. See, passed away is so much easier to handle. Dead and died - way too final, too harsh of words. HE'S NOT DEAD! He is still living, just somewhere else. And he continues to live in me and in Trey and in Owen!

Trey and I are still planning our quick getaway to Vegas this weekend. I hope and pray we are able to enjoy each other and have a good time. I don't want to spend it feeling guilty and crying the whole time. I have a feeling we will have fun and then we'll get back home and I'll have a couple days (or more) of sadness/guilt/depression.

I forgot to post awhile back that Trey and I picked out Nate's Memorial Marker for his grave. That was very difficult. We also got a bench with his name on it. Hopefully, they both will be ready by Memorial Day. I haven't visited his grave since he passed. Not ready. But once the plaque and bench are out, I'll be there. Crying hysterically I'm sure. The grave site is beautiful. We wanted to make sure Nate was by the water and he's pretty close to a beautiful water fountain. There are lots of ducks and geese around. It's very peaceful. I will be sure to post pics of it when we go visit.

I got a call today from a girl who is a member at First Baptist Church. The same church where my b/f/f Michelle goes and where Gayle Crist is a member (she's the one I met in the nail salon who had been praying for me - see previous blog post if you haven't read this story - it's a good one!). The call was from Megan and she does articles for their monthly newsletter. She wanted to do a write-up on Nate and on the story of me and Gayle meeting. Of course, I said yes! The more people who know about Nate, the better. His life is worth sharing with EVERYONE! He affected so many people while here on earth and it seems even more now that he's an Angel In Heaven! I'm honored to have a story written about God's work and Nathan's Life.

That's about it for now. I'm sure in the coming days I'll ramble some more :)

Jennifer

Attached is one of my favorite pics of Nate, which will also be on his Memorial Marker.

Random Stuff

2010-05-13T08:43:00.004-05:00

We're hanging in there. Thanks to Owen, we are distracted quite a bit. Trying to stay busy. If I stop and think, I lose it. But I know I need to do that too. It's just so hard, I'm in a way trying to avoid those feelings. I'm trying to figure out ways to fill up the days. Part of me wants to have something planned every second and then part of me wants to just crawl in bed and cry. But, thankfully, I'm more of an active person and like to stay busy. I went to a Bible Study yesterday hosted by some neighborhood friends. Just what I needed! Our neighbors have been unbelievable - so kind and thoughtful! Trey and I are trying to run more, which is good therapy. I'm hoping to get back to tennis this weekend and I'm going to the gym more. Now, I have no reason to not be in shape!!! Trey went back to work Monday, which I know was good for him. Being around his friends there and focusing on business. We have no idea if it's going to get easier or harder over time. But as our pastor said, take it five minutes at a time.

Trey and I are going to Vegas in a couple of weeks for a few days just for a quick GET AWAY from it all. It is all free thanks to miles and travel connections through Trey's work. I'm excited but it's also bittersweet, knowing the only reason we are able to make this trip is because Nate is gone. The focus has been on Nate for so long, our marriage was a little bit "ignored". It's time to focus on that and on Owen, of course! Hopefully, Trey and I will do a longer, relaxing, romantic trip to a beach this winter.

Owen has been so sweet. I think he has changed dramatically since Nate's passing. I believe Nate gave him a part of himself. Owen is more confident, outgoing and talking more! He's so funny. When he meets people he extends his hand to greet them with a handshake and says "Hey". So cute. He does the most touching things. Trey already mentioned how he grabbed all of Nate's stuffed animals to sleep with at night, but that's not enough. When he gets up in the morning and after his naps, he has to carry all of them with him to the living room and sit with them when he watches TV. We also all go back to Nate's room before Owen goes to bed, kneel and say prayers. Then we all blow a kiss to Nathan and tell him we love him. Owen has enjoyed getting out more and playing with his neighbor friends. The older girls have really taken him under their wings and of course, he's loving it!

We are in the process of selling our handicap van. Probably going to donate Nate's medical equipment, wheelchairs, lifts, stander, etc. to MDA. Soon we will have to figure out what to do with Nate's room. Can't think about that yet.

As far as any more signs from Nate, I think he gave the more substantial ones to me when I needed them the most. I see little ones here and there and am so thankful for that. I miss him so much, but am also so relieved he doesn't have SMA anymore. I can't wait to see him in Heaven a healthy & strong boy.

Thanks again to everyone for EVERYTHING! I just can't express enough how much all the love and support have helped us through this time.

Jennifer

Owen by Nate's Tree

2010-05-12T08:10:00.000-05:00

Some confusion???

2010-05-12T07:56:00.003-05:00

The last post was done by Trey, not me. It was his birthday! Mine isn't until October, thank goodness because it's my 40th - UGH!

A Birthday Wish...

2010-05-11T07:10:00.003-05:00

These pictures were taken on May 11, 2004, my 38th birthday. Nate had just spent pretty much the entire month of April in the St. John PICU but was able to come home in time to celebrate Mother's Day and my birthday. I knew at the time that my birthday celebrations with him would be limited and they should be treasured. Ever since that day, the ONLY birthday wish that I wanted granted or gift that I wanted to receive was to be able to celebrate the day with him.

Today, I have to "celebrate" my birthday without him. It won't really be a celebration for us but I sure hope that Nate gets to eat a big slice of cake and a huge scoop of ice cream in Heaven! That is my birthday wish for this year...

I love you, Nate!

Mother's Day

2010-05-09T13:34:00.006-05:00

We went to church today and took Owen to Sunday School for the first time. Trey and I have members of Asbury for a long time, we used to go all the time before Nate's diagnosis. We were married at Asbury almost 9 years ago, both boys were baptized at Asbury, Nate's Memorial service was there and Owen has been attending Mother's Day out there as well. We had always wanted to be involved in the church before Nate was diagnosed, but obviously our obligations were to Nate and his care. I'm sure God understands :) So, this being the first Sunday to attend church in a long while, I think it appropriate that it was Mother's Day. Since I don't have many "church" clothes (or nice clothes for that matter, mostly Nike stuff!), I had to dig in my closet to find something to wear today. I still have it, the sweater I bought for and wore to Nate's private baptism ceremony about six years ago. Of course, that is what I wore today. I've posted a couple of pics from Nate's baptism and today with Owen. In the chair, I'm holding Nate's Mother's Day present he made for me in school (a nest with three eggs), and Owen's present to me, the flower made of his hand print. Also a couple of pics of us playing on Nate's bed this morning before church. I'm so blessed, but still so sad. I miss you Nate! Love you tons, Mommy

FSMA Donations

2010-05-09T07:42:00.003-05:00

Also sending a BIG THANK YOU to those of you who have donated to Families of Spinal Muscular Atrophy in memory of Nathan. To find a cure would be the ultimate gift! So appreciative and thank you again!

Thank you, Thank you!

2010-05-08T15:02:00.010-05:00

Nate's teacher came by yesterday to deliver this (along with the Mother's Day present below). A picture of Nate's class that was taken during the Valentine's Day Party. In the picture, she had printed "Our Loss, Heaven's Gain, Mrs. Lacy's Kindergarten Class 2010". Tears were flowing for a long time after opening this...So thoughtful!

A couple of weeks ago, Nate was having school here at the house with his teacher, Mrs. Lacy. I was asked to leave the room because he was going to make my Mother's Day present. She delivered this yesterday. Trey and I couldn't believe it. A nest, with three blue eggs. Pretty significant considering all my "bird signs" I've been seeing lately. Trey said the nest is Nate holding the eggs which are me, Trey and Owen. Sweetest present EVER! Of course, we both cried.

I have some wonderful neighborhood friends, some that I haven't even met yet, who gave me this beautiful necklace. It is Nate's birthstone (and Owen's also). I am looking forward to getting to know my sweet neighbors better and joining in a Bible Study they have every Wednesday. I can't thank them enough for this gift, I wear it all the time (and kiss it all the time!). So very thoughtful!

These are pictures of a Magnolia tree that was sent by Trey's friends at work. The marker reads"In Memory Of Our Sweet Little Angel Nate, Love Always". We planted it today. What a wonderful gift!

This arrangement was received today to me in honor of Mother's Day by our dear friends, Mike and Beverlee Rudberg, who live out in California. It's shaped like a rainbow and the card reads - "To an extraordinary mother. We wish you a rainbow of peace. All our Love". LOVE IT! So sweet - thank so much Mike and Beverlee!

I was also asked by some friends on my Facebook account if they could set up a FB page - Nathan Russell's Contribution Fund, which is a fund set up to accept donations to plant a tree in his honor through "Up with Trees" of Tulsa. It will be planted somewhere in town with his name under it. Again, I'm speechless by the thoughtfulness of everybody! Thank you Shannon and Jeri!

And thank you to Trey's friends at work for the gift cards to restaurants. Those have and will come in handy!

These are all the flower arrangements and plants we received before the Memorial Service and also ones that were delivered to the funeral home - Beautiful.

We have been overwhelmed and so appreciative of all the love and support we have received. And we are also so thankful for the gifts, the tons of food and flowers. These are just a few examples of what we have gotten. Thanks again everyone! Don't know what else to say but Thank You and We Love You!

Jennifer

My Dear, Sweet Husband

2010-05-07T14:26:00.004-05:00

Trey and I are so much alike, but also so different. And that is a good thing. Since Nate's passing, Trey has been able to handle things I just couldn't bear to do, and I have been able to do things that he couldn't do. Luckily, we both agreed on the decision to let Nate go. No more suffering or struggling. It was the hardest decision we've ever had to make, but neither of us regret it. It was right and it was time. And we got to say goodbye and be with him when he took his last breath.

Right after Nate passed, as we were laying there with him. I had to get up. To me, Nate was gone. He was an Angel and I couldn't bear it anymore. I just went to the corner and cried like I never have cried before. Uncontrollably. Trey continued to lay with him and talk with him. Then he asked the nurse if he could give Nate a bath. I couldn't believe it. I wanted to leave, to me Nate was gone. But I stayed and watched him gently give Nate his last bath (something Nate loved - his baths). I cried and told Trey I was sorry I couldn't do it with him. But he said, Jennifer you bathed him every day, it's okay, I want to do this, out of respect for Nathan. I'm just in awe of him. All I wanted to do was leave, but when we did leave, all I wanted to do was go back and pick up Nate and run out with him. I felt like I was abandoning him, leaving him behind. But, it's not him, just his physical being. I had to keep reminding myself of that. And I couldn't bathe him and wanted to leave because I wanted my memories to be of him smiling and laughing and alive. I just couldn't handle it, but thank God Trey could and Trey did all those things I couldn't do.

Another example of that is the viewing and getting Nate's body dressed and ready to be put to rest. Trey wanted to make sure he looked "like he normally does". He just had to make sure before the viewing that it looked like our Nate. Again, this is something I just could not do. So, Trey went to the funeral home and made sure he was dressed in his Spongebob T-shirt, navy shorts, navy crocs, was holding his puppy (with only one ear) that he has had with him since the day he was born, and a blanket that Nurse Jenny made for him. He told me he looked like an Angel, and I didn't doubt it. He always looked like an Angel. I am so thankful that Trey did these things for me and for Nate.

Another example of what a wonderful, sweet Dad Trey is - he would say prayers every night with Nate before bed. I saw him praying to Nate the night he passed, and he has prayed the same prayers every night since he has passed.

Trey has been able to take Owen into Nate's room to talk to Nate. He's taught Owen how to say I love you to Nate's spirit. They have played on his bed. I have been able to do this a little bit, but not so much yet. In time, it will come. But for Trey, these are moments he treasures. I treasure them as well, but now from afar, as I just can't handle that yet.

So, let me say a big THANK YOU to my husband, Trey, who is the best Father on the planet!

Signs from God I've had in the past

2010-05-07T13:55:00.006-05:00

I know, I've posted quite a few signs/messages since Nate's passing that I have received. But, God has spoken to me before Nate's passing (when I've asked him to). The first message we received, of course, was on the day Nate was born - the rainbow. We didn't know the significance of this until much later. At the time we just that it was a beautiful way to start the day when our first born would enter the world.

We started testing Nate at three months old to determine what was wrong with him. At 5 months old, we got the call. To come into the office to meet with the Dr. He didn't want to talk with us on the phone. We knew it was not good news. I went to pick Trey up at Thrifty, so we could all drive together to the Dr.'s office. Obviously, a complete wreck, I needed strength from God. While waiting for Trey in the parking lot, I asked for some sort of sign. I always seem to look up at the sky for signs. I got out of the car and looked all around, crying. Nothing, until finally I saw it - a big white Cross on the top of a church a couple miles down the road. I felt comfort, even in the midst of knowing we were about to get bad news. It was the perfect thing to see at the time. Knowing we would need God and Christ to give us strength to get through the days to come.

The second time, I asked God for a sign, was after a very scary episode of almost losing Nate a couple of years ago. He got a mucus plug. We bagged him, called 911, went to the hospital, but then were back home that same evening in the middle of the night. Thank the Lord! The next morning, as I sat outside having my coffee, I prayed. That event had scared me so much, almost losing him, I just needed comfort and peace. I couldn't relax. Then a beautiful white dove appeared on the house behind us. It stayed there for the most part of the day. I kept going out and seeing if it was still there, and sure enough, it would still be there. I was overcome by peace. Nate has a lot of birds that come to visit. We have bird feeders outside his window. All sorts of birds come - finches, sparrows, black birds, cardinals and doves (but I had never seen a pure white dove in our neighborhood before and haven't since). Just beautiful!

So, at times when I've needed those signs and messages from God, he's given them to me. Other times, throughout Nate's life, I didn't need them because Nate was doing well and God was in him, in his eyes, and in his heart. Now, after Nate has passed, I NEED them and am asking for them and I have received!

Sometime soon, I am going to post another miracle/blessing story about Owen. Some close friends and family members know the story. It is a very personal one, but one I want to share. Because, again, it was God's hand that brought us the miracle of our Sweet Owen. And just because we talk about Nate so much and what a blessing he was and is, doesn't mean we don't feel the exact same way about Owen Bennett! Love them both dearly :) Both Gifts from God!

Birds (Angels Playing)

2010-05-07T09:23:00.004-05:00

Ok, at this point, people probably I've really lost it! As much as I love sharing Nate stories (both while he was here and after he passed), this blog also has another purpose - to document our memories, so we never forget certain moments. So here's another "moment" -

I was outside having my morning coffee, and two birds were playing and chasing each other right in front of me. I thought, that's probably Nate and another SMA Angel, flying and playing. I will think of birds as all the SMA Angels flying free and playing together. I went in to get my second cup of coffee, came back outside and look up to see a HUGE, HUGE group of birds flying over. But they weren't flying straight or fast. It was very slow, rhythmic, like they were dancing/swaying. Another beautiful site I will cherish. Fly free little man and play, play, play with all the other sweet SMA Angels - Have fun! Love you!

A Brother's Love

2010-05-06T20:43:00.005-05:00

Two very touching stories about Nate & Owen...

Number #1 -- The morning after Nate passed away, Owen went into Nate's room as is his normal routine when he gets up. When Nate wasn't there, he didn't seem to know what to do but he just walked up to the bedside and patted the bed as if he was patting Nate. I asked him if he wanted to climb up on Nate's bed and he said "YES". So he climbed up then grabbed all of Nate's stuffed animals in a big bear hug and just laid there in silence.

On Monday night, we decided that we'd ask Owen if he wanted to take one of Nate's stuffed animals and start sleeping with it. We asked and and he said "YES". So we pulled him up on the bed and told him to pick one. You can probably guess what he did...he grabbed all four of them in a big bear hug and has been sleeping with them ever since.

Number #2 -- On Wednesday, I was going back to Floral Haven to settle up and Jen & Owen were in the office as I left. When I got back Jen told me the story behind the picture below.

As Jen was sitting at the desk, Owen walked over to the closet in the office, opened the door and pulled out one of the programs from Nate's Memorial Service. He then walked back to the desk, grabbed a blue pen and started trying to trace the outline of his hand on the program. Here is what he produced:

Nathan's Song

2010-05-06T15:25:00.002-05:00

For those of you were attended the Memorial Service, and for those of you who couldn't, I want to give some background to the song that was played during the service called "Nathan's Song". Six years ago, during Nate's first hospitalization (and a scary one at that! This is when he had his feeding tube put in and had aspiration pneumonia - he was 7 months old), at St. John PICU, they had a CD player. Nate's love of music started at this point. We played a lot of music for him during the stay, but mostly a CD that the PICU had by Michael Card, called Sleep Sounds in Jesus. I loved this CD so much, that after Nate got home from the hospital I had to go out and buy it. At the time, all I could find was a double CD set which also included another CD by Michael Card called Come to the Cradle. This CD had a song on it called "Nathan's Song". Of course, the first thing Trey and I did was read the lyrics. We couldn't believe it - it sounded like it was written for Nathan! Then we listened to it - beautiful, beautiful song! Ever since then this song has had a special place in our hearts and of course, has always been, and always will be, "Nathan's Song". There was no doubt, when we were planning the Memorial Service, that his song would be played. The lyrics are as follows:

Welcome now, little stranger
To a world filled with wonder
Filled full of the fragrance
Of life's sweet bouquet
But dear one, take warning
That birth's like a morning
To a lifetime that flies past
Like one single day

Soak up like a sponge
All that's joyful and best
And squeeze yourself out
Upon those who are blessed
A God-given gift
Has been wrapped up in you
You show more of Him
Than I'll ever teach you

There are no words to thank You
For a heart that can see
And gaze in the face
Of this small mystery
You knit him together
In a most secret place
A most certain sign
Of Your wonderful grace

Welcome now, little stranger
To a world filled with wonder
To a world torn asunder
To a world that's in pain
My son, life's a battle
So you be a rebel
Stand ready to fight
And never stop loving the Light

Nathan's Rainbow (Again!)

2010-05-06T15:22:00.003-05:00

Trey and I were sitting by the pool talking today. Very sunny day with a few wispy clouds. I looked up and said "Do you see that rainbow?" He did. Except this wasn't like any rainbow, it was upside down, shaped like a big smiley face. There were some wispy clouds around it. Just beautiful. Again, we said hello. I told him I loved him and blew him a kiss. It slowly disappeared and again, I thanked him and God. :)

More Visits/Signs from Nate

2010-05-05T09:10:00.007-05:00

As you know, if you've seen the previous posts, I have received a couple special visits from God and Nate (the rainbow and meeting Gayle Crist at the nail salon). Here are a few more moments I want to share.

I'm always looking for signs. Mostly in the clouds or birds, but really anywhere and everywhere. I was sittiing outside the other night and asking Nate to speak to me. I was looking at the clouds. I thought, what about a cloud smiley face or a heart? I just stared at the sky. Then I starting thinking about possibly getting in the pool this week. Decided to call time and temperature to see what the weather was going to be. The advertisement sponsor for time and temp was Floral Haven Funeral Homes, where Nate is laid to rest. I smiled. Then when I hung up the phone, I again looked up at the clouds, and there it was a cloud shaped like a heart. Then I smiled big!

I talked to my mom the next day. She watches Boston Avenue Methodist Church service on TV. She had taped it and watched it on Tuesday. The service "just happened" to be about grieving. They played Amazing Grace during the service, which of course was also played at Nate's Memorial Service.

The most profound thing that happened to me, was yesterday. My body was tired, my mind was tired. But I went for a run anyways. I have run through my neighborhood, the same route, for years. There are a couple of spots that are my favorites. A couple of ponds that usually have some ducks and geese. As I approached one of these spots, a couple of ducks crossed the road. Then I looked to my left and there is this huge, beautiful SWAN! I stopped. It just looked at me and then walked over to me. I decided to go to the side of the road and sit down. It followed me and stood inches from me. It honked and honked (talked) to me, then it would just stare at me. It was so close to me I could've hugged it. I know swans are NOT people animals and they can be very mean, so I decided instead of trying to touch it, I would talk to it. (I know, go ahead and say it, I need to go into a mental instituation - HA). I talked, it listened, then it talked and I listened. I just took it all in, smiling and smiling. Then after awhile, I decided to move on. I said can you show me how you can fly? I wanted it to do something else for me before I left. I walked very slowly away from it, kept looking back (it's still talking to me this whole time). I got around the corner, and a neighborhood friend pulls up beside me. I tried to explain what just happened, then we just talked about Nate and how sorry she was, etc. I could see the swan from afar moving it's way toward me again. Before I knew it, there it was again, in the middle of the street, next to the van, standing inches from me, honking louder than before. Kari and I were stunned. Then it pecked my leg. I just laughed. Kari said "he doesn't want you to forget about him". I said "Oh, I won't". I then started home, running away from him, as his honks got louder and louder, I heard them for most of the rest of my run. I laughed all day and told Nathan how funny he is. And thanked him and God.

Some people might think I'm crazy, I'm making something out of nothing. Some people might call these incidents coincidences. If your eyes and heart aren't open to receive these special moments, you won't see them. I take time to look for them and I embrace them for what they are - plain and simple, GOD.

Flower Bouquet from Nate's Class

2010-05-05T08:01:00.005-05:00

Nate's teachers (Mrs. Lacy and Mrs. Streetman), had the kids write down something about Nate. Then they put this beautiful arrangement together with the kids pictures and their messages. Sweetest thing I have ever seen. Here is what they said:

I liked his smile

I liked playing in the gym with Nate

You are my friend

I liked his eyes

I liked the big races

I liked when I met Nate

I liked giving Nate Valentines

He is cool

I liked playing red light/green light with Nate

I liked his blog

I liked his Spongebob shirt

He is fun

I liked playing with him

I liked reading stories with him

He is nice

I liked meeting him

He is a good friend

He is my best friend

I love you

I miss him

A wonderful message from Vin, a friend of Nate's

2010-05-04T19:51:00.004-05:00

The morning of Nate's Memorial Service, as we were loading up everyone in cars, we look down on the driveway and see this. From Vin, who lives across the street and is also in his Kindergarten class. Who would think on this morning, I would smile. But Vin, you made me smile! If you can't see what it says clearly, just click on it to enlarge it. Kids are so special! :)

Nate's Yellow Ribbons

2010-05-04T19:46:00.002-05:00

I want to thank everyone in our neighborhood, Twin Creeks III, (especially Beth, who I haven't even met yet!), for putting yellow ribbons on all the mailboxes (because Nate loved Spongebob so much), in memory of Nate. I KNOW we were put in this neighborhood for a reason. I could go on and on and why, and all the things that have happened, special kids and parents here in Twin Creeks 3, but it would take too much time. We love it here and so did Nate!

Nate's Sweet Hand

2010-05-04T16:29:00.002-05:00

This hand mold of Nate's hand was made by the St. Franics PICU right after he passed away. It's unbelievable how real it seems. I loved to hold his sweet, soft hands. So glad we have this.

Remembering Nate

2010-05-04T09:35:00.002-05:00

Last night, I really wanted and needed to see Nate before finally going to bed. As most of you know, we have posted numerous videos of him & Owen on YouTube over the last couple of years. This is the video that I watched. It was taken on a Sunday morning (March 22, 2009) as we were getting Nate squared away. We were getting ready to put his BiPAP mask back on but he was doing so well, we decided to keep it off for a while and just let him be. What we got was an amazing video of sounds, expressions and head movements. It is the essence of Nate...this is the Nate that I will always remember and cherish!

http://youtube.com/watch?v=qHgshwjhcUE

Our YouTube channel is "rer3family" if you want to see all of the videos.

Trey

Another remarkable sign from Nate and God

2010-05-02T08:39:00.002-05:00

Yesterday, I went to have my nails done. I haven't done this in years. First I had my pedicure and was scheduled to have a manicure afterwards, but I needed to get back home to greet family from out of town. Decided I would come back later for my manicure. I was sitting in a chair waiting to have my nails done, next to two ladies talking. Most of their conversation was about God and Church. I had a feeling about the lady next to me. I can't explain it, but I wanted to tell her about Nate and ask her to pray for me and my family. I was included in some of their conversation, just talking about her Yorkie she had with her and nail stuff. When we got back to more talk about church, I asked where she attended. She said First Baptist Downtown. I told her my best friend since 2nd grade (Michelle Bauer Folks) went there (thinking no way would they know each other - it's a HUGE church), she said Oh, yes, I know Michelle, John, Charlie and Evelyn. We worked together at the church. She said she would tell Michelle she met me. I then told her that Michelle would probably tell her something else about me - the story of Nate. I then poured my heart out, all about Nate, his life, his passing - all to a stranger - crying and crying. She listended. Then she said, "You know what, I've been praying for you and your family already". Michelle had put us on a prayer list and the lady already knew about us and Nate's passing. Her name is Gayle Crist. She is a Stephen's Minister at First Baptist, Tulsa. We continued to talk and cry. Then as she left, she hugged and kissed me and told me she will continue to pray, just as she had been. Unbelieveable. Thank you again God and Nathan.

Nathan's Rainbow

2010-05-01T08:58:00.002-05:00

The morning I was in labor, August 3, 2003, on the way to the hospital, there was a big rainbow in the sky. I haven't seen a rainbow since. This morning, I was sitting outside and it started to sprinkle, but yet was a little bit sunny outside. I thought, will there be a rainbow. I kept looking. A few minutes later, it appeared. I called Trey and Owen outside and we just stared at it. We said hello to Nathan and thanked him and God for the sign that all is well. Within a few minutes, the rain was gone and so was the rainbow. What a special moment that was. I pray as time goes by, Nate and God will continue to send us signs like this to help with healing.

Nathan's Arrangements

2010-04-30T09:54:00.002-05:00

Viewing on Sunday, May 2, 2010 from 12:00 Noon - 9:00 PM at Floral Haven, 6500 S. 129th E. Ave., Broken Arrow, OK 74012, 918-252-2518 (www.floralhaven.com). Memorial Ceremony followed by Reception on Monday, May 3, 2010 at 11:00 AM at Mason Chapel - Asbury United Methodist Church, 6767 S. Mingo Road, Tulsa, OK 74133-3309, 918-492-1771 (www.asburytulsa.com).

In lieu of flowers, please make donations in Nathan's Memory to Families of Spinal Muscular Atrophy - FSMA Donations, 925 Busse Road, Elk Grove Village, IL 60007 or https://www.fsma.org/Fundraising/Donate

Nathan is at Peace

2010-04-29T00:00:00.002-05:00

It is with profound sadness that we let everyone know that Nathan earned his Angel Wings Wednesday night at 9:45PM. He passed away with Jen & I at his side talking to him, letting him know that he had fought a valiant battle.

We are extremely thankful for all the thoughts, prayers and support that all of you have given Nate and our family. Please know that he is running around in Heaven with all of the other SMA Angels enjoying all the things that they could not do here with us.

Trey & Jen

Nathan to the hospital

2010-04-28T08:55:00.002-05:00

HORRIBLE NIGHT!...Nate's worn out so we are transporting him to the PICU at St. Francis. Jen & Nate just left in the ambulance and I right behind them...will update when possible...NEED EXTRA PRAYERS!!!!

Dr. also not sure what's going on!

2010-04-27T13:05:00.003-05:00

It's not an ear infection, doesn't seem to be allergy related, possibily bronchitis (although his lungs sound clear). Started him on a Zpack today. Mobile x-ray coming to do chest x-ray this afternoon. Nasal swabs were taken to check for bacterial or viral infection. If it's viral, obviously we just have to wait it out - bacterial, and hopefully the z-pack will take care of it. He is having these coughing spasms that last about an hour. Non-stop coughing. It comes and goes at random times of the day. It just wears him out. We use the cough assist and get some stuff out, but his coughing spasms continue. Sometimes, he needs supplemental O2 and his heart rate is way high, other times, his saturations remain normal during these episodes. He's never had anything like this before. I'm actually hoping it's bacterial form of bronchitis, so we will have an answer and the z-pack will work!!! It's so FRUSTRATING!

Prayers would be appreciated! Thank you!
Jennifer

To this dr. this morning

2010-04-27T08:34:00.003-05:00

Nate had a really rough night. Don't know what's going on with him. He's on so many different medicines and nothing seems to be working. Dr. appt 10:00. Will update later.

Extra Prayers

2010-04-26T21:46:00.002-05:00

Nate's allergies have flared up again and he has had a REALLY ROUGH day...tons of secretions, coughing, gagging, choking, etc. It was a repeat of what Easter Sunday was like except that his heart rate has been lower and he's not running a high fever.

We changed to a new antihistamine this morning so hopefully we'll start to see results soon. Until then, a few extra prayers would be appreciated!

Thanks,

Trey

PLAY BALL!

2010-04-25T08:45:00.005-05:00

NATE PLAYS BASEBALL! He's in Challenger Baseball League, on a team called the "Jets". All kids have some kind of disability. Nate's team seems to have the most kids in wheelchairs. He had his first game yesterday morning It was a so fun! We met a lot of nice people and Nate enjoyed "throwing" the ball around and batting. So special! We'll probably post pics every week from each game. It was hard to get very good pics or a good video this time because Trey was dealing with Owen (typical 2 1/2 year old all over the place!) and I was helping Nate throw and bat.

Not knowing what to expect, since this was his first time to play, we learned a couple of things. Owen needs someone else to watch him, so Trey and I can both be with Nate. Trey missed out on a lot because he was chasing Owen around the whole time! Nate needs to be in his power chair, not his manual chair - it was very heavy and hard to move on the grass and dirt. Plus, he will love driving around the field! Next time, he will be in full uniform! Too cute! Hopefully, we can get some videos and pics of him throwing the ball with his teammates, batting and rounding the bases.

Nate Off His Bipap Today

2010-04-18T17:13:00.003-05:00

He's lookin' good! And it's a great sign that he's a lot better when he can be off his "pappy"!

Owen Conked Out!

2010-04-18T17:11:00.002-05:00

He just started using a pillow. Before you know it, he'll be in his big bed and the crib will be history. He is getting big for the crib, but it's nice to have him "confined" for now :) !