Saturday, December 25, 2010

Merry Christmas


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

Saturday, December 18, 2010

Owen's cardiologist appointment

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...


Friday, December 10, 2010

Owen & his heart monitor

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

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...

Thursday, December 09, 2010

Owen misses Nate

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!

Tuesday, November 30, 2010

This is SMA

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.


Tuesday, November 16, 2010

Owen's doctor's appointment

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...

Monday, November 15, 2010

Guess I spoke to soon...

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

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...

Sunday, November 14, 2010

Owen's scary episode

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...


Tuesday, November 02, 2010

Halloween Night

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

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

Shannon's Halloween party.

More Pumpkin Patch

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

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

Owen's Halloween Class Party Pic

Owen's Halloween Festivities

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

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!

Thursday, October 28, 2010

Nate's First and Second Halloween

2003 - Nate the lion

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

Nate's Halloweens

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

Tuesday, October 19, 2010

Charlee Bisch & SMA Awareness

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:


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

Saturday, October 16, 2010

Up With Trees (Nate's Tree)

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

SMA Race n Roll Kansas City

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

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 .

Owen at Cousin Daisy's Baptism (Youtube Video)

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!

Saturday, September 18, 2010

Signs from Nate

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 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!!!

Monday, August 30, 2010

Nate gained a new friend in Heaven

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 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!

Thursday, August 26, 2010

Owen's words of wisdom

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!

Monday, August 23, 2010

Happy Birthday, Owen

We love you,
Mom, Dad & Angel Nate

Tuesday, August 17, 2010

Youtube Video of Owen

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!

Wednesday, August 11, 2010

Nate's Grave Marker

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...



Tuesday, August 10, 2010

A bunch of Ducks & A Swan

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...

Tuesday, August 03, 2010

Happy Birthday!

Happy Birthday, Nate!!!


Mom, Dad & Owen

Wednesday, July 28, 2010

Life is slowly changing

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.

Nate's Room/Play Room Pics

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 :)

Sunday, July 11, 2010

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

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!

Owen with Nana

Baking a cake with Nana

He likes it!