Nathan's Magical Wish Trip- Pre-trip report

[jessica52877]

What a cute picture! Is that at DL?

 

[niclmac]

Carol,
You are such a strong person, just amazing!! We live in San Antonio and my husband is from OKC. We are a huge OU Sooner household~~
I have 2 boys. One is 6 and the other is 2. They are my world!!!
I wanted to share with you that my 2 year old was a preemie too. My water broke at 28 weeks. I was able to hold off a while, while staying in the hospital, but eventually, delivered a tiny miracle shortly thereafter. He stayed in the NICU for quite a while. By looking at him, you would never know. Don't get me wrong, he is little for his age and he still has some "little" issues (his skull never fused completely, so we are looking at a metal plate possibly, we did OT and speech too). He is my miracle child and his older brother is such a ray of sunshine!!!
I too am a speech therapist. I work part time in the local school district here!! I LOVE my job!!
Anyway, I am loving your pretrip report so far, can't wait to hear about your trip, we leave in 2 weeks!!!

 

[oklamomof4boys]

What a cute picture! Is that at DL?

Yep-that was at Disneyland this summer. That was the day we were "dreamed" with our dream ears. The boys wore theirs for a little bit and then asked me to carry them. I would have worn mine all day but it was hot and they were making my head sweat. But my sweet husband wore his ALL day! He is such a loveable goof- that is one of the reasons I love him. I can't imagine what life would be like if I had married someone who wasn't as Disney crazy as I am!

 

[oklamomof4boys]

Carol,
You are such a strong person, just amazing!! We live in San Antonio and my husband is from OKC. We are a huge OU Sooner household~~
I have 2 boys. One is 6 and the other is 2. They are my world!!!
I wanted to share with you that my 2 year old was a preemie too. My water broke at 28 weeks. I was able to hold off a while, while staying in the hospital, but eventually, delivered a tiny miracle shortly thereafter. He stayed in the NICU for quite a while. By looking at him, you would never know. Don't get me wrong, he is little for his age and he still has some "little" issues (his skull never fused completely, so we are looking at a metal plate possibly, we did OT and speech too). He is my miracle child and his older brother is such a ray of sunshine!!!
I too am a speech therapist. I work part time in the local school district here!! I LOVE my job!!
Anyway, I am loving your pretrip report so far, can't wait to hear about your trip, we leave in 2 weeks!!!

A Sooner fan living in Texas-that could be dangerous-lol!

28 weeks-man that is early! Life in the NICU is indescribable. While I certainly am not "happy" about all that Nathan and the rest of the family have gone through, I certainly can see some blessings. Like you, we witnessed miracles first hand-not everyone can say that. And we received such an outpouring of love. It was ( and still is) just absolutely incredible.

Being a speech path in the schools is great, isn't it? I love being able to control how many hours I work. When the kids were younger, I only worked 15-20 hours a week. Now that they are all in school all day, I work pretty much the same hours they are in school. But it is great to have the school holidays off!

Have a great trip in 2 weeks!

 

[twinmum]

Carol - I am totally in awe of the communication you have with your boys, and the way you are able to describe each of them just demonstrates that so clearly. I am mother to Mark and Douglas, who are 9 year old twins (see our pre-trip...http://www.disboards.com/showthread.php?t=1883215&page=3...we leave for Mark's Wish Trip to GKTW and WDW on November 1st.

While Mark is very open and talks quite eloquently about his disability and how he feels (he has cerebral palsy), his brother is just like his Dad - neither my husband or Douglas talks much about how they're feeling. Until (in Douglas' case) it all spills out in a jumble oh heightened emotions.

Anyway, I was also reading the exchange about having premies and thought I'd chime in too. Our guys were born at 26 weeks, so count us into the mirable club too! I posted last night about our beginnings on the pre-trip, including pictures. I'd forgotten just how tiny they were.

Happy planning!
Alison

 

[maroo]

Hi there! I have enjoyed reading your PreTrippie and reading about your family. They sound really cool. It is so neat that they are involved in lots of stuff...I know that is hard on you, but it is so cool for them and they will appreciate it even more when they get older.

I just wanted to quit lurking and actually post!

 

[oklamomof4boys]

I have been going through pictures today. I had all my pictures just thrown in a cabinet. I decided it was time to organize them. I put all my Disney vacation pictures in one box chronologically. That got me looking at all the pictures and reminiscing with my husband- ah, what wonderful memories. Going to Disney is much easier now that the kids are older, but I do miss those days of having all those little boys and the look of awe on their faces. I am going to try to post a few of the pictures ( I am amazed every time I successfully post a picture! I'm already surprised that I remembered how to scan pictures!)

This first picture is our first trip to DL. Tucker was 4 and William was 1. This is on Minnie's couch- I can't find the one on Mickey's couch.

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This is 1998- we've added Sam to the family ( I was pregnant with him on the first trip). Tucker is 6, William 3 and Sam is nearly 2. I am pregnant with Nathan at the time. I showed the picture to David and asked him, " Do you know what Sam is saying here?" We both knew, Sam was saying, " CHEESE!!" Anytime he saw a camera he would give that silly grin and yell "cheese!"

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Finally we go to DL with our completed family. I was happy to be there unpregnant-finally. This is March '02. Nathan is 18 months old. He was not very excited about Disneyland. We didn't really think it through very well. Nathan spent the first year of his life virtually in isolation. He didn't go ANYWHERE except the doctor's until he was 9 months old- after that he was also allowed to go to church. He got over stimulated very easily for quite a while. You can imagine he was not a happy camper a lot of the time ( we did a lot of time back in the hotel). He hated the characters. We have very few pictures of him anywhere near a character.

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If you look back a few posts, you will see our most recent picture of the boys on Mickey's couch- I didn't bore you with all 10 pictures on Mickey's couch!

I can't wait to add our wish trip pictures to our collection. They do have Mickey's house somewhere at WDW, don't they?

 

[AmberGreenawalt]

Such sweet pictures Carol! Thanks for starting my day with a smile.

 

[tinkfan355]

Wow I just started reading this today and it amazes me! Your such a good mom. I cant wait to hear more updates!

 

[oklamomof4boys]

I have been bad about updating. Things are going well here. Last weekend we went to see our favorite group in concert. We had to drive 3 hours on a Sunday night, but it was worth it! The group is Denver and the Mile High Orchestra. They are a Christian big band- they got 3rd place in that show on Fox last year-The Next Great American Band. I first heard them on the radio 4 1/2 years ago and we drove to a church in Amarillo ( 2 1/2 hours away) to see them. We stayed afterwards and talked to them. Then 3 months later they were in concert an hour from my parent's house ( but 6 hours from ours). It was in the summer so we planned a vacation around it. The concert ended up being on Tucker's birthday. My husband had the email address of one of the band members ( ends up they went to the same college and had mutual friends) and told them that their concert was where Tucker wanted to spend his 12th birthday. They ended up calling him onstage during the concert and the entire place sang happy birthday to him! Well over the years we have followed them to many concerts and they even held a concert in our small town ( it was a stop in between 2 other concerts-they didn't even charge us anything except dinner-which the church cooked, hotel rooms-which were donated, and we took up an offering). We have become pretty good friends with them. It was so good to see them- it has been awhile. We were on our way to see them last year in Dallas when Nathan had a seizure. We talked to Denver for quite a while on Sunday. He hugged us and told us he loved us and how much they have missed us- and that they have been praying for Nathan. Tucker made a DVD this year that is a community outreach for Pediatric Cardiomyopathy. He goes to different civic groups and presents it-trying to raise awareness and money for Nathan's disease. He used some of Denver's music for the project. Denver was honored that he used it. Speaking of Tucker's project, the Children's Cardiomyopathy Foundation ( the organization that has helped us so much- founded by a mother who lost 2 children to Nathan's disease. It does so much for families like mine) is going to feature Tucker and his project in their spring newsletter. They are hoping it inspires other families to do similar projects.

Nathan is on the front page of our local paper today. There is an article about his upcoming MAW trip and the fishing tournament that is raising money for MAW in a couple of weeks.

We got our first disboutique gift yesterday! It didn't include anything to clue me into which disboard member sent it ( well, it did have a return address and name, but not a disboard name). I'm not sure if I'm supposed to post their real name, so I won't ( I know many people worry about privacy). But they are from Houston, Tx- and I'm sure they know who they are so hopefully they will come forward! And I hope they are doing okay in Houston! Anyway, she sent penny holders ( for penny pressing) for each of the boys! They loved them-they were made out of mini m&m containers and they still had the m&ms in them. Since it had been a warm day-the candy was warm. The candy shell was still intact but the chocolate inside was ooey-gooey! Oh, so yummy! Yes, I have to confess- I snuck some out of each of theirs. Shhh-don't tell! It was a wonderful surprise on a Friday afternoon after a long week of school! Unfortunately, our camera was acting up, so I didn't get any pictures!

They also got postcards recently from their "Fairy Godmother" at WDW. You guys are wonderful!

Well, I guess I'd better go get out everybody's clothes for church tomorrow!

 

[jessica52877]

Just wanted to check in and make sure everything is okay! I worry about everyone when they are MIA for a couple of days. I know life gets busy though, especially with 4 boys!

 

[oklamomof4boys]

Just wanted to check in and make sure everything is okay! I worry about everyone when they are MIA for a couple of days. I know life gets busy though, especially with 4 boys!

Ah- it is nice to know I am missed! I know what you mean though about worrying when you don't hear from someone. Things are good here-just busy. I can't wait until fall break next week and having a few days off. But then Nathan's birthday is Saturday the 11th and we are having his party on Thursday of fall break. We are taking 5 extra kids to Laser Quest ( which unfortunately is 90 miles away-one of the pitfalls of living in a small town) and then having them spend the night-so I'm not sure how much of a break it will be!

We had Nathan's Make a Wish celebrity fishing tournament this past weekend. I am waiting for my husband to download pictures from it so I can post them in my report about it. But I might go ahead and write about it tomorrow and add pictures later. I will say he had a great time and won a great prize.

 

[macntosh]

Wow I am completely moved by your writing and your parenting skills! My kids were NICU babies as well. Aidan our youngest was in for 8 months, his older sister Mya was only in for 17 days which I thought at the time was forever. I'm enjoying reading your report as we just go a call early this week that Mya will be granted a wish. Tomorrow they speak with her. If she chooses Disney, which I think she is leaning then I only hope to write as well as you.

 

[oklamomof4boys]

Today is Nathan's 10th birthday. We had a great day. There is a little carnival in town and we took Nathan and a friend to it. Then we went to our favorite restaurant and home for presents. We got a Splash Mountain Sorry game for him when we were at Disneyland this summer. I also ordered him some Mickey Mouse sheets for his bed and a sketch pad and pencils ( he loves to draw Mickey Mouse!). He is going to have his big "friends" birthday party on Thursday when it is Fall Break. We are going to take them to play laser tag and then spend the night.

But this time of year is always emotional for us-we always remember the sequence of events the year he was born. Does anybody else think about the anniversaries of big events-both good and bad? This year I seem more emotional. I'm not sure if it is because it is the 10 year anniversary or because we are planning our wish trip. David and I always talk about " X many years ago today such and such happened." We really don't talk to anyone else about it. Not that we wouldn't want to talk to others- it just doesn't seem like something other people want to talk about. I do talk to my parents. They were such a source of support through all of it.

If you all don't mind, I might use this to reminisce/reflect on the events of 10 years ago. Each day that something happened that really sticks in my mind, I will write about it. Don't feel like you have to read or comment on all of it- it just makes me feel good to write about it. My mom says I should journal about it sometime. But this year- all my extra computer time is spent on this trip report.

Nathan was born at 7:30 pm 10 years ago. We were very nervous because he was 7 weeks early. I asked every nurse I came in contact with, " Do 33 week babies do okay?" The NICU doctors and nurses were at his birth. They were amazed- he was a little over 5lbs, breathing on his own and looking great. Still, they whisked him off to the NICU. My doctor told us later that night, " You must have been saying some powerful prayers because he is doing better than anyone thought a 33 week old baby would do!" Still they were going to keep him in the NICU for a few days for antibiotics since my water had been broken for a week. They had kept me in the hospital that entire time monitoring for infection and making sure I had plenty of amniotic fluid. My doctor had told me if I went into labor, they wouldn't stop it because it was the baby's way of saying he needed out. But on October 11, 1998, it seemed like all of our prayers had been answered and our trial was over. I was overjoyed even though I felt a little sick. I was achy and was running a slight fever- but the doctors thought it was just from being in bed for a week. Little did I know that I had a little virus- a very common virus that just about everybody gets at one time or another-and I had unknowingly passed it on in utero to Nathan ( we now know in hindsight- that is the "reason" he needed out). For most people this virus just causes slight nausea, headache, aches and pains. But in some people it attacks their heart muscle-doctors don't know why. But the symptoms of neonatal viral myocarditis ( virus attacking the muscle of the heart of a newborn) don't show up until the babies are 8 days old. In fact, all the extensive tests done in the NICU showed Nathan to be perfectly healthy. So for 8 days ( 6 in the NICU for antibiotics and tests and 2 at home), we lived in ignorant bliss. In fact, when we saw all the " sick" babies in the NICU, we felt guilty that our son was doing so great.

But that was 10 years ago and tonight my precious boy is asleep in his new Mickey Mouse sheets.

Oh, and I realize I still need to write about his fishing tournament. I'm waiting for David to get the pictures downloaded. Hopefully tomorrow.

Carol

 

[bex271]

HAPPY BIRTHDAY NATHAN!!!!!!!!!!!!!!!!!!!!!!!!!. I hope you have fun at laser tag later this week.

Carol,
Yes i do remember the good and bad anniversaries big and small. Christmas Eve is still a hard time for me that's when Jonah had his arrest. So i totally know how you feel when you look back on anniversaries.

I can't wait to hear about the fishing tournament and see the pictures.

becca

 

[LindaBabe]

Happy Birthday, NATHAN! ​

 

[oklamomof4boys]

Well, David has come home from work every evening exhausted so I hate to hassle him to download pictures of the fishing tournament. So I decided just to write about it and then I can add pictures later.

Anyway- a recap. James Boone is a professional baseball player from our small town in Oklahoma. He and his wife decided to sponsor a "celebrity" fishing tournament to benefit MAW and specifically Nathan ( they wanted to sponsor a wish of a local child.) They want this to be an annual event, but this was the first year, and a bit disorganized. We weren't really sure what to expect. We knew that on Sat. Oct. 4 we were supposed to be at their ranch at 9:00am. When we got home from the HS football game on friday, we had a message on the machine that they wanted us to be there at 8:00 am. This would be fine, but we had waited up until the older boys got home from an after game party, and didn't listen to our message until midnight. UGH- not much sleep for any of us. That was fine though. We were excited.

We got there at 8:00am and there were a couple of other wish kids there from Oklahoma City ( 90 miles away). Allison ( James' wife) said that some didn't get the message that it was going to start early, so did we mind waiting. We said that was fine, so we sat in the car ( all 6 of us- we are a very "all together" family and assumed it was a family event) and waited and waited and waited. A few more families showed up. She was expecting 10 but at 9:30 only 5 were there-luckily, she decided to go ahead and start. We drove down to the pond where all the "celebrities" were. I put "celebrities" in quotes because they were all sports figures that even my very sports savvy boys had not heard of. But they were very nice and we were honored that they gave up their time. A couple of other players -some they had even heard of- were supposed to be there but couldn't make it. They paired each celebrity with a wish kid and took them out on a boat. There was room for my husband to go with them. Off they went. But here was a problem- there were not enough boats or celebrities to take out my boys ( they were the only siblings there). There was one extra boat and one of the HS football boys was taking it out and he offered to take out Sam. So Tucker, William and I waved goodbye to everybody from shore. We took pictures and videos for a while but quickly they became bored- Nathan's boat was far enough out we couldn't see them anymore. Oh well, they weren't going to be back for several hours, we'd just take the car back home for a bit.....until we realized that David had forgotten to leave the keys with us. So we walked around the pond for a while-okay actually until 1:00pm! We didn't even have chairs with us! We did have cell phones and I had several friends say, " Why didn't you call me! I would have picked you up!" I don't know why I didn't think about that! Finally, the fisherman came in and the sponsors brought us all lunch. My husband felt so terrible about forgetting to leave us the keys. But I was so touched by my older boys. They never complained a bit-even though they essentially had been waiting around for 5 hours! I told them I was sorry, that I didn't realize how the tournament worked and I should have let them stay home. They said, " It's okay mom. We are hear to support Nathan!" Oh, those boys make me want to cry!

When all the boats were in, they told each team to keep their biggest 5 fish. They weighed them and were going to announce the winners at the silent auction at 3:00pm. Nathan had never been fishing before- my husband is not a fisherman at all! He had a great partner-Brad Holman who used to play for the Seattle Mariners. He taught Nathan a lot and Nathan caught some great fish and was hopeful he might get a prize. We went to the silent auction where they had a lot of stuff donated from merchants in town and also a lot of signed sports stuff. Bar-S had also donated smoked sausage, hotdogs, etc that they had cooked up and were giving away.

Finally it was time for the prizes. One of the wish kids had to leave early, so there were only 4 there. That is probably good because they had 4 prizes- and they were all good. 4th place-Nintendo DS, 3rd PSP, 2nd XBOX 360 and 1st-PS 3. And with 14.9lbs of fish, Nathan got first place! He was so excited-he also got a huge trophy! He felt like such a star. The newspaper came and did another front page feature! The older boys had been so good that we bid, and won, a signed Adam LaRoche Jersey ( evidently he plays for the Pittsburgh Pirates). At the end of the long day, Tucker-my 16 year old, strapping young man-came up to me with tears in his eyes and gave me a hug. The entire thing was very emotional for us.

Today Nathan took his trophy to school. They recognize achievements outside of school on Tuesday's morning assembly. Nathan got to talk about the tournament and walk around showing his trophy. All those times of having to hear about everybody else's sports awards, he finally got his chance.

Speaking of school, Friday I took cupcakes to school for Nathan's birthday. I was talking to his teacher and she said she loved cupcakes and sometimes just brings them to share with the kids. Well, the principal found out and told her she couldn't have snacks unless they were celebrating something. The teacher is a breast cancer survivor. In her class she has Nathan, a boy with leukemia and a boy with diabetes. I told her, " The Principal doesn't understand and unless you have had someone close to you with a life threatening illness maybe you can't understand. But for some of us, every day is a celebration!" She said, " I agree. I think if we all woke up and made it to school for another day- that is a reason to celebrate!"

 

[LindaBabe]

OH MY GOSH! That is one of the most touching posts I've ever read! Definitely got to find the tissues. Not only Nathan, but ALL your kids ROCK!

 

[AmberGreenawalt]

Carol, I am a puddle of tears. What a wondeful post. Thank you for sharing. You can tell what a GREAT mom you are by how AWESOME all your boys turned out!

 

[oklamomof4boys]

Thank you both for the kind words. I just feel blessed that there are people who care enough to read what I write!

While I have time to write, I would appreciate anyone who could say a prayer for my 12 year old, Sam. Sam had a terrible trampoline accident nearly 7 months ago. He didn't fall off, he just landed wrong and broke both leg bones right above the ankle. They thought he would lose his foot- it was attached just by some skin, the nerves and the blood vessels. I wrote about it in a previous post if you are interested in all the gorry details. Anyway, it has been a long 7 months of sports and that has just about killed Sam. We go back to the surgeon tomorrow to see if he will release him to play basketball this season. I'm not sure if he will make the decision about football next year yet. Please say a prayer that Sam is released to play-that will help his mood so much and I think it will just about kill him if he doesn't get to play.

Carol