9:45 p.m. last night

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

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!

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

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

Owen Update

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

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"

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

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

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

Some confusion???

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...

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

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

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!

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

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

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)

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

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: