Welcome to Holland

A while back I came across a poem titled, Welcome to Holland by Emily Perl Kingsley. It seems to be floating around the internet quite frequently. The poem speaks about raising a child with a disability and trying to describe it so that others might understand. Personally, I do not think of Nathan as having a disability because of his transplant. Actually, it is quite the opposite. I think that he has been given a wonderful gift and that he now has the opportunity to live a full and wonderful life. So I read the poem a little bit differently. He may not have a disability but we have been faced with a chronic medical condition that has changed our plans a bit. When first finding out about Nathan and Harrison's diagnosis of alpha-1 antitrypsin deficiency part of the process of dealing with it was grieving for the loss of (what I thought) were my two perfectly healthy boys. I had so many thoughts of, "It's not fair," "Why them," "Why us,"
"How will this affect their future," "Why can't they be healthy." Fortunately, I did not stay in that frame of mind too long. But, I do think that it is normal to have those thoughts and to question the fairness of it all as long as you can eventually come to a place where you can turn to God and say, "Okay God, I don't understand it all, but I am willing to trust you and allow you to give us strength and carry us through." But, I think that you do have to acknowledge that things are different, but different is not always bad. We have learned a lot throughout the last year. We have learned how to trust more and have strengthened our faith. We have seen and felt the love of many friends and family. I could go on and on about that.... But, the point is - sure, our lives are now different than we had planned but our life is wonderful and we are blessed. You could also take this same poem and apply it to any change of plans in your own life. Whatever our circumstances, we have to take what we have been given and enjoy our trip to Holland...

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley

Donate Life Month

April is Donate Life Month. National Donate Life Month was established in 2003. Every day in April, people across the U.S. make a special effort to celebrate the tremendous generosity of those who have saved lives by becoming organ, tissue, marrow, and blood donors and to encourage more Americans to follow their fine example(organdonor.gov). We are so thankful for Nathan's donor and donor family for making the decision to give the gift of life. I have been thinking about the day that we received the call that a liver was available for Nathan. Many people have asked us what that day was like. I thought that I might tell a little bit about it here.

Nathan had been listed for transplant during the middle of November. He had to be removed from the transplant waiting list during December because of an infection. He had been placed back on the list the week before Christmas. Even though he was listed, we didn't have a sense that Nathan's transplant would be right away. We actually did not know what to think. It really depended on who we talked to as far as being given a time table (of course no one really ever knows). We were told that it could be that day or many months away before a match was found. I tell you all that to say that we were not sitting around waiting on the phone to ring. We tried to go ahead and live life as normally as possible, even though thoughts of transplant did dominate our minds.

On Christmas Eve Nathan did not feel very well. He had very little appetite and had been tired all day. When it was time to go to my parents house for dinner, Nathan was lying down on the tile floor in our foryer, because he did not feel well and did not want to walk to the car. He was receiving IV antibiotics four times daily to help clear up his infection. It was very hard to see him so sick and to see his health deteriorating. I remember hoping that his transplant would be soon because it just felt like we were on the verge of him becoming even sicker. At the same time, I could not imagine thoughts of transplant and actually putting Nathan through such a huge surgery. There were just so many unanswered questions and so many unknowns about everything. We really did have to fully place our trust in God. We knew that only He had the answers and only He knew the timing.

Christmas Day arrived and Nathan was so excited. He had received a guitar and a talking parrot that he asked Santa to bring. We had lunch with our family. We had eaten and opened presents and had just begun to let the kids play with their Christmas toys when Stephen happened to notice a couple of missed calls on his cell phone from a number that we did not recognize. I had left my phone in the car (we really were not expecting a call on this day!). Someone suggested that we might should see who had called since after all, weren't we waiting on a call for Nathan! Sure enough, Nathan's transplant surgeon had been trying to call us himself to tell us that a liver was available. We had just gone outside because Harrison had twisted his ankle in the neighbor's yard. I was going across the street to check on him when Stephen yelled over at me that Nathan's physician was on the phone and they had a potential liver for Nathan. I am not sure how I thought I would respond when I heard those words; but when it actually happened, I felt as if the breath had been knocked out of me. There was such a rush of emotions. I was happy, thankful, scared and overwhelmed. At this point I think I was more scared than anything. It took at least an hour before I could really think about what lay ahead of us and the preparations that needed to be made.

We rushed home and started making calls and packing a few things. The next hours would be a blur. What I do remember is an overwhelming outpouring of love and support from family and friends. People began praying. Once at the hospital, all of our family arrived plus many other prayer warriors who came to offer us support and to pray for Nathan. Although we had tried to prepare Nathan a little, I am not sure that he knew what was about to take place. He was really kind of excited and happy and liked all of the people coming to see him. I am so thankful for the outpouring of support that we received on that night. It helped us to remain calm and to have peace about the whole situation. It also made this time happy for Nathan. He played his guitar for whoever would listen. He gave a lovely rendition of Jingle Bells. It was also very humbling that so many folks had left their family gatherings on Christmas to be at the hospital with us. There is so much more that I could tell you about that night. I wish that I could tell you about all of the people that spent the entire night waiting with us praying. I wish that I could tell you about all of the many kind things that our loving church family did to make the experience bearable for us. But then I would be writing for days.

Nathan was taken to surgery around 11:00 on Christmas night. His surgery was completed around 6:30 the next morning. Most of you know the story from there. His surgery was successful from the very beginning. He has not had one single complication. His liver numbers are all normal now. We have been so blessed. We have seen so many answered prayers and we have seen people reach out to us and be the very hands and feet of Jesus to our family. The fact that Nathan was transplanted on Christmas will always be special to us. Of course Christmas has always had special meaning as we celebrated the birth of our Savior, the greatest Gift of all and the One who came to give us eternal life with our Father in heaven. How fitting for us that we can celebrate Nathan's gift of life on this day that we celebrate Jesus' birth.

If you have read this far, thank you. It was helpful for me just to think through that day again and to put my thoughts down. During Donate Life Month, will you join me in being thankful for all of the donors that have made the gift of life possible for Nathan and so many others.



Lora

A few facts on organ donation...

Just wanted to share a few facts about organ donation -

As of today, there are 98,619 people waiting on the national transplant waiting list for an organ donation due to end stage organ disease...

There are 16,390 people waiting nationally on a liver...

In Alabama (as of 03/21/2008), at UAB where Nathan had his liver transplant, there are 3,158 people waiting on an organ donation...

At UAB there are 88 people waiting on a liver...

January - December 2007 there were 28,353 transplants nationally...

In the year 2007 there were 14,394 organ donors who gave the gift of life to others...

Each day approximately 77 people receive organ transplants...

Each day 19 people die waiting for a transplant...

The above information was obtained from the following sites: http://www.optn.org/data/
http://organdonor.gov/

I wanted to share a couple of pictures with you. The first is a picture of Nathan before his transplant and the second one is a recent photo after transplant (he is about to blow out a candle on his birthday cake).



Can you see the difference? I know it is hard to tell from a picture, but there is an amazing difference in Nathan. Like many of you, I never gave much thought to organ donation before we were faced with the possibility in our own family. It is not that I was against it in any way. I have always thought that organ donation was a great thinng, I just didn't think about becoming an organ donor myself. Nathan is the picture of organ donation.

Would you consider becoming an organ donor today? If you would like to register to become an organ donor, you can go to http://organdonor.gov/donor/index.htm and click on your state to register. We will forever be grateful to Nathan's donor and donor family. In the midst of their grief, the family of a 16 year old young man chose to give the gift of life. There are not words to convey our gratitude. The only thing that I know to do, is to try to show others how this gift has changed Nathan's life and our life as a family. That is what we will do.

Back To School!!

Today was a big day in the Shelton household. Nathan had his first day back at school since he had his transplant. He has been at home since early December. Prior to his transplant, Nathan had been in and out of the hospital and was at home receiving IV antibiotics for an infection before Christmas. We received a call on Christmas day that a liver was available for Nathan. What an amazing Christmas gift! Nathan came home from the hospital on January 4th, and since that time he has been at home. I really kind of liked him being at home. While he was here, I felt like I had some control over what things he came in contact with. I hate to say that I kept him in a bubble, but I kind of did! I have made it my goal to keep him away from crowds and out of public and tried my best to keep everything clean around him. All of that had to come to an end today. But it was time. Nathan was so ready to go back to school. He was very excited today, as you can probably tell by the above picture. He could not wait to see his friends. I think he is probably tired of me pulling the camera out for everything though. It is kind of like when you have a new baby and you want to take pictures of all his firsts. I feel like I need to capture all of Nathan's firsts after his transplant. I did try to get him to take one last picture in front of the school and he quickly said, "No" and covered his head up with his jacket! I guess that was his limit. He didn't want to be seen taking a picture by the front door! I walked him to his classroom and he went right in and started unpacking his bag and talking to his friends. I felt like I was leaving him at big school for the very first time. It brought a mixture of emotions. I am thrilled to death that he is back at school and doing so well, but I also have just a little twinge of sadness that he is back in the real world, a world that I have no control over. It was also a reminder to me that God has blessed us tremendously with three wonderful boys, and it is our job as their parents to guide them and direct them and to teach them about God. But when we do that, we then have to turn them over to God and trust that He will protect them. Today I feel like I let Nathan back into the real world, and now I have to trust and have faith that it is the right time and that God will protect him and keep him healthy and safe. Proverbs 3:5-6 says, "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." I can't think of better words to live by today. I pray these verses for all of my boys as well.

Happy 7th Birthday Nathan!!

On Friday Nathan turned 7 years old. It seems like only yesterday that he was born. I always kind of shrugged it off when someone with older children would tell me, "enjoy these years because they go by fast." Now I truly know what that statement means. It seems as if the days go by so very quickly. At the same time, it seems like so much has taken place within 7 years. I never thought when Nathan was born that his future held anything other than perfectly healthy days. I had no concept of liver disease or liver transplant. I am actually really glad that we did not find out about Nathan's liver disease until last year. It allowed us to live totally care free days without the worry of a looming health crisis. The events of the past year will shape our future, but I choose to look at things in a positive manner. I think that we will look at birthdays as a little sweeter and maybe enjoy these days (when the kids are so young) a little longer.

We spent the day at Smith Lake. The lake is our home away from home during the summer months, but we usually don't go very often over the fall and spring. We had not been since last August. Whenever we go to the lake for the first time of the season, it always seems new. Even though I have been there so many times before, I am always amazed at the beauty of the water. Nathan absolutely loves the lake as well and he couldn't wait to go fishing today. He did not catch anything, but he did not seem to mind. I thought I would share a few photos of our day at the lake.

Video of Nathan

I have created a video slide show of Nathan from about this time last year through transplant and a few days after. I hope that you enjoy it. You will need to mute the sound on the play list at the bottom of the page in order to hear the music with the slide show.

Make a slideshow - it's easy!

Faith

Have you ever given much thought to when you turn to God? I've given some thought to that over the past months, and I think that it is true that as long as everything is going well in our lives, we seem to be pretty self reliant. We think that we actually have control over our lives and that we can make plans and that those plans will actually take place. In essence, I think that we rely only on our own devices and don't necessarily seek guidance from our heavenly Father. Oh sure, we may thank God for our blessings and put forth our supplications or requests to Him; but I am not sure if we put our full trust and reliance on Him. I can say that before the events surrounding Nathan's diagnosis and transplant, the above described me. But what happens when something unexpected comes our way? What if our plans don't turn out to be God's plans? How is our faith affected? I think that there are two choices. Either we can totally crumble under the circumstances and get really angry at God for messing up our plans or we can choose to turn to Him and rely solely on Him to carry us through. Actually, I think it is more of a process. For me, it was more like I initially was angry and so unsure of how to turn to God. Then, as time went on I was able to see that my faith and trust could only be in Him and not on any strength that I had. Because really we have no strength apart from Him. It is almost that through a sense of brokenness, we can fully see our need and desire for a relationship with Christ. I think in this sense that going through a trial can strengthen our faith. A song by Mercy Me, Bring on the Rain has meant a lot to me over the past months. Here is a small portion of the lyrics:

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Can we really say, bring me anything that brings you glory? And what about when we experience pain in life - do we praise Him? If that's what it takes to praise you, Jesus bring the rain. It is almost hard to say that statement. Certainly we do not want to experience trials or pain, but if (and when) we do, will we allow the trial to bring glory to Him and will we lift up our praises to Him? I pray that we will.
Lora