Happy Birthday!

Happy Birthday, Nate!!!

We LOVE and MISS YOU SO MUCH!!!!

Love,
Mom, Dad & Owen

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.

Jennifer

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 :)

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!
Jennifer

Owen with Nana

Baking a cake with Nana

He likes it!

Owen Swimming

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

More Parade and Fireworks

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 :(

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

What fun!

Fire Truck at the Parade

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

4th of July Neighborhood Parade

Nate's Grave Site

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

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