MOMMY PLEASE.....

Well, I just might win the worst mom award tonight. I had been out to get my hair cut and went to dinner with a friend and didn't get home until about 8:45. It seems that Nathan went to bed without taking his evening medicine. You might think, well that's okay, take it in the morning. But, no, it does not work that way around here with Nathan. We never miss his meds because they are so important for the health of his transplanted liver. His most important medicine is his Rapamune (anti-rejection) which he takes in the morning. He has never missed a dose of it. Two times a day he also takes an anti-viral drug to fight this little virus (EBV) that he has. Tonight he went to sleep without the anti-viral. It probably would not be the end of the world if he didn't take it till morning, but it was only 8:45, and he had only been asleep for 30 minutes. So let's just say I was determined that he was going to take the medicine. Nathan had other plans though. He is a very heavy sleeper, and he absolutely refused to wake up. He moaned and he groaned and cried MOMMY....many, many times. Then he got really upset and just cried and cried and cried. I would stand him up, he would lay down on the floor and cry. He would get back in bed and cry some more. All the while I keep after him to just PLEASE swallow this one syringe of medicine. At this point it might have been more productive to just let him sleep. We literally fought over it for about 30 minutes. Nathan is the most strong willed person I have ever met (those of you who know him I'm sure will agree)! All the while, I don't think he was ever truly awake. Then it really hit me. I just had this wave of sadness come over me. All I could think was, how sad that he has to take medicine each day that is so important for his very survival. How sad that I can't just let him sleep when all he wants to do is sleep. Trust me, I am not feeling sorry for myself or him. Quite the contrary. I am abuntantly thankful that he has medication that he can take every day that helps his body to accept his liver and fight infections. It's just that as much as I like to think that everything is back to normal around here, it never really is. Every now and then I am reminded anew that this is a life long journey for Nathan. I sometimes just wish that he could have one day of his life without medicine. But that just is not in the plan. And that's okay. I am long past the point of questioning all of this. I feel better just getting it off my chest though. By the way, he finally took the medicine and drifted right back to sleep. I feel certain he won't even remember it in the morning. Now if I could just forget....

Nathan's One Year Anniversary

Today is a milestone day for our family, particularly Nathan. It was one year ago today that Nathan received his liver transplant. We received the call on Christmas day that a liver was available for him. We had been celebrating the day at Aunt Melinda's house when we received the call. It came as a total surprise even though Nathan had been waiting for a little over a month. We had no idea when the call might come but it was none too soon. Nathan was becoming sicker and sicker. Here he is on Christmas night at UAB waiting to go to surgery.

The picture below is on December 26, 2007, just a few hours after his surgery was completed. Today we are celebrating the gift of life he was given one year ago. Nathan has had a wonderful year of good health with only a few bumps in the road. He is enjoying second grade. He loves his dog, Sunny. He is a huge fan of Star Wars, Indiana Jones, Chronicles of Narnia and of course Scooby Doo. Today and throughout the past year it has been hard not to compare each occasion to the one a year before. Nathan's birthday, the start of summer, Halloween, Thanksgiving and Christmas have all given us reason to celebrate. We celebrate Nathan's life. We contemplate how much different this year is than last. We are now concernced with normal stuff, not life and death. We think about the gift of life given by an organ donor and we wonder about what the donor was like and we think of his family. We thank God for loving us and for all of our blessings. Today especially I can't help but remember all of the many people who have loved us and supported us throughout the year. All of those who spent the night at the hospital with us while Nathan was in the surgery and those who took care of every little need we had over those first days, I will never ever forget their kindness and their presence. Nathan actually remembers the night he went to surgery and he remembers so many people who were there and he remembers playing jingle bells on the guitar and singing for everyone. It was a tremendously special night for us and I will never forget the prayers that were lifted up for him. Happy first liver birthday Nathan.

All of the pictures below are from our Make-A- Wish trip to Give Kids the World and Orlando. There were so many pictures I could have included, these are just a few.

It was cold and dreary when we left Birmingham and we packed way to much stuff!

All of the boys were able to go to the cockpit and meet the pilots.

Nathan even got to wear the captain's hat.

Florida was sunny, 80's and beautiful.

Our first day at Disney.

Nathan was thrilled to meet Scooby and Shaggy.

Curious George is another favorite.

Stephen and Harrison with the guys from The Mummy.

At Give Kids the World, Nathan was given a star by the star fairy. He was able to write his name on it and then it was placed on the ceiling in the Castle of Miracles. He was then able to go and find it on the ceiling. His is the last one here on the third row. The room is absolutely beautiful with a star present on the ceiling for each child who has stayed there.

The village had a great heated pool and the boys enjoyed swimming in December.

Each day different characters came to Give Kids the World so we avoided the long lines at the parks to meet them. Here is Goofy, Mary Poppins and Pluto. Pluto is Nathan's favorite.

All of us with Mickey and Minnie

Santa came to visit on Thursday night and gifts were passed out to all of the children. We even had snow in Florida on this special night.



This is the street we stayed on. Our villa is the one on the left. It really is a little village filled with families who have children who have all been through, or are going through amazing challenges. It is such an wonderful place. They go out of their way to make the kids feel special and give them a week of no worries and only happy memories. The very first thing they did was sit us down to go over a few things, and the volunteer told Nathan that he was the boss for the week and that we had to do whatever he wanted to do. Kind of scary, huh? I was a little worried, but he didn't let it go to his head. I know that they do this on purpose to let these children feel like they have a little control in a life full of medical challenges. For Nathan, a life that revolves around us telling him when to take medicine, when to have labs done, go to the doctor, etc.. The village also has a free ice cream shop open all day long. How great is that? The village is staffed by some regular employees but mostly the place is run by a staff of volunteers. The volunteers range from older adults living in the area to college students performing community service, to youth groups spending a week serving others. Truly amazing. I wish that I could tell you all about the place and the many special things that made this trip so wonderful. I just don't have enough space.

This picture was taken yesterday on Christmas day. I love these boys dearly. Wow. What a difference a year makes. Thanks for reading if you made it this far. Merry Christmas and Happy New Year from the entire Shelton family.

Home Sweet Home

We made it home from Disney and had an absolutely wonderful time. I thought I might post some during the week, but we did not have wireless access in our room. I would have had to walk to the front check in / guest area which was a nice little walk down the road (and after walking all day at the parks, I just couldn't walk anymore!). I can't wait to tell you all about it and post some pictures (hopefully tomorrow). We stayed at Give Kids The World which is an amazing place. They work closely with wish organizations like Make-A Wish who sponsored Nathan's trip to Disney. I am off to unpack and get some sleep. Tomorrow I might actually start my Christmas shopping then I will post again with some pictures. Good Night!

Disney World Here We Come!

Well - tomorrow is the BIG day! We are leaving for Nathan's Make-A-Wish trip to Disney World. We can't wait to tell you all about it. We will try to update some during the week.

Stephen and Lora

Halloween Pics

Check out the boys all dressed up for Halloween. Harrison is Dracula. Andrew is a race car driver and Nathan is none other than Scooby Doo.

Two Posts In One Month! Wow!

Two posts in one month - what's the world coming to? Yes, I know it is rare that I post very often these days, but I have something to share today. Last night our family had the most amazing experience. What could it be you say on a Wednesday in the middle of October? Well, we arrived at church last night and saw a swarm of people wearing red t-shirts lining the walkway into the entrance of our church. Immediately the boys starting asking, "Who are all those people? Is there a party?" Harrison actually asked, "Is it my birthday party?" We had to say, "No Harrison, remember your birthday is in February. IT IS ONLY OCTOBER!" But, you can't blame a boy for wishing I guess.

Wishes. Hmmm. A while back I had a post about Nathan's night serving ice cream for the Make-A-Wish foundation. But, I didn't actually tell you his wish. He wished to go to Disney World at Christmas. Those of you who know Nathan know that he absolutely loves Christmas. As soon as we take down the pumpkins, he will start thinking about decorating his room and his own special Christmas tree. I can't think of a more fun time for him to go to Disney World. So after we saw this big group of people at church, guess who else we saw?

If you guessed Mickey Mouse, you're right! Mickey Mouse comes walking out into the parking lot to give Nathan a big hug. Yep, it seems that Nathan's wish is coming true thanks to the Make-A-Wish foundation and the girls of Chi Omega Sorority at Samford University. These amazing young women are sponsoring his trip. I have gotten to know several of the girls personally this year and I have been blessed to know them and work with them. They threw us a party, complete with surprises for all the boys, mickey mouse ears, dinner, treats, and a very talented man who made balloon creations, including the best goofy, mickey and pluto ever! We also had all of our family there with us as well of some of our very best friends. We were also surrounded by our wonderful church family who has supported us all along the way of our journey with Nathan. I can't imagine a more special place to have received this gift.

Needless to say, the boys are on cloud 9. Getting to bed last night was almost impossible. I did have to explain to Andrew that the trip is a few weeks away. I think he might have thought we were leaving last night! So now we will start counting down the days. Disney World here we come!

Did I tell you how incredibly humbled and blessed we feel? It really feels strange to be going on a trip that someone else has provided for us. But I am so happy and proud for Nathan. Looking at him now, you would never know what he has been through over the past year and a half. I know others have been through so much more. But he has endured 8 hospitalizations, one huge transplant surgery, 2 liver biopsies, many outpatient procedures, I can't even count the number of physician and clinic visits and blood draws. I hope much of the hard stuff is behind us. I feel almost certain it is. Nathan is now living a full and normal life. He is doing normal 7 year old things like playing soccer, attending 2nd grade and playing with his puppy, Sunny Dog. But I think of this trip as a reward for him for all that he has been through, helping him to make happy memories from an experience that hasn't been so much fun for a little boy. I know that he will have an amazing time. I think the boys are perfect ages (9, 7, 4) to remember this trip forever. They will also remember the incredible generosity of a wonderful group of women at Samford Unviersity. They will remember the love and support of their church family and their grandparents, aunts, uncles and friends. At times it is hard to fathom the generosity of others. During the most difficult life events the love, support and care of others is abundantly evident. So with grateful hearts we say, THANK YOU CHI OMEGA, THANK YOU MAKE-A-WISH, THANK YOU LIBERTY PARK BAPTIST CHURCH. We love you all and can't wait to share memories of our trip with you.

Blessings,
Lora

Blessings

I thought I would share a story with you from this week. On Tuesday night I had the opportunity to go to the UAB Townhouse apartments and visit with some of the families that are staying there. Since I first heard about this ministry a while back I have wanted to take part. The Medical Apartment Ministry is a service provided by the Birmingham Baptist Association. The apartments are for patients and families who are receiving medical care in the Birmingham area but who live out of town. I had heard that there were many transplant recipients and those waiting for transplants who are staying there. I know that there are others as well who are receiving long term care of some sort, whether it is cancer treatment or something else. I feel that our family has been so blessed to have Nathan's transplant here in Birmingham. This has allowed us to stay in our own home near our families and support system. We have been able to continue working and really to live our lives rather normally. But many folks, particularly those who may experience complications post transplant or those who need to be near the hospital in order to wait on transplant, have to pick up their lives and leave their family, friends, church family, jobs. I can only imagine how hard that must be. So long story short, I wanted to visit with them and maybe offer encouragement to someone.

As I sat down to eat dinner, the man sitting next to me asked, "Are you a recipient or family member?" It caught me off guard a little bit because my plan wasn't really to talk too much about myself and our story. So I proceeded, "Well, I am here with.....but I am a family member of a recipient. How about you?" This wonderful man and his wife then proceeded to tell me about their son who died unexpectedly 2 years ago at the age of 18 from a brain aneurysm. He then went on to tell me about how his son was an organ donor and he was so proud and honored. You may be thinking, "Well why was he there?" because I was thinking the same thing. This mom and dad were there to support the recipient of their son's heart who has been staying at the apartments since her transplant almost 2 years ago. Can you imagine? They have also met the recipient of their son's lungs, pancreas, liver and one of the kidneys.

Now for another part of the story. I have wanted to write Nathan's donor family. Many of you know his donor was a 16 year old boy who died on Christmas day. I have thought about what to say. I have pondered over it. There are so many emotions. For one, it is almost impossible to express our extreme gratitude. Our gratitude for the gift of life. The gift that saved Nathan's life. Think yourselves for a minute about trying to put that into words. It is no easy task! Aside from our relationship with our heavenly Father I can think of no greater gift. On another note, there are also thoughts about how the family might perceive the letter. Will they be happy to hear from you? Have they been waiting? Will it bring back sad memories for them? Will it be hard for them to hear about how well my son is doing? Or, will it bring them peace? Will they feel a sense of pride and joy that their son brought life to someone else?

Last Friday night I sat down on the couch and decided to just write from my heart. Stephen was gone and the boys were busy and I decided it was time. So I wrote and I cried as I remembered the day he received his new liver and a new chapter of his life began. I cried as I thought about this family whom I don't know, and whom I may never know, who so unselfishly gave. And then when I was almost done, Nathan asked what I was doing. I told him I was writing the family who gave him his new liver. He wanted to write a letter also. He got some paper and in his 7 year old, second grade writing he wrote the sweetest few sentences. He was so excited to write and he knew what he wanted to say. We talked about buying some pretty paper to rewrite it on and then mailing our letters together. On Saturday, he couldn't wait to go to the store and pick out stationary to rewrite his letter on. But, even after all of that I still wasn't sure about mailing it just yet.

Back to Tuesday night.......This father shared with me about how much it meant to them to hear from the donor families. They wanted to know what the recipients were doing. They wanted to know that they were doing well and that they were well cared for. He said they have found all of the recipients but one and he said it is his mission to find that person. He also talked about how he felt he had found his calling in life sharing with others about organ donation. He speaks at local hospitals. He talked about how he was never much of a public speaker, but he can now get up and speak about his son and about how donation has been such a blessing for his family as well as those who receive the life saving transplant. I felt so humbled to sit next to this family. It was as if I could have been sitting next to Nathan's donor family. As I left I thanked him for helping me. He hugged me and told me to mail my letter that the family was waiting to hear from me.

I have to say I feel like God was speaking to me Tuesday night. It's funny, I thought I might be offering encouragement to someone else, but I think I am the one who came away extremely encouraged and blessed. I was reminded that we are never placed anywhere by accident. God always goes before us and has a plan for us in each and every situation. I am so thankful for this family. Please pray for them and for the many others who are staying in the apartments. Many are healing and have had very long journeys and still face long journeys ahead. There are 2 who are waiting on transplants now - one for a heart and one for a lung. Within the room I could tell that there was such hope but also hearts that were hurting and in constant anticipation of an unknown future. I know a little about that. It is a very hard place to be. Of course none of us know our future from one day to the next but I think you probably know what I mean. Our journey to transplant was short but for others it has been years in the making. They need our prayers.

Pray for Nathan's donor family as well. I often wonder how they are. Our lives are getting back to normal now. I wonder are theirs? Join me in lifting them up in prayer today.

Blessings,
Lora