Stephen helped me put together a short video for a talk I am giving on organ donation. I thought that I would share it with you. 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 video. Have a great day! Lora
Monday, April 28, 2008
Saturday, April 26, 2008
Celebration of Life
Last Saturday, April 19th was the Celebration of Life Picnic at UAB. This is an annual event for organ recipients, donor families and family and friends. I had been looking forward to the event for a couple of reasons. For one, I really wanted to see a large number of recipients gathered together. I know that there are lots of organ recipients out there but at times it seems as if Nathan is the only one. This gathering reaffirmed to me that he is part of a larger community. It was also really nice to see and meet others who are several years post transplant and who are living full lives. It gives us hope for the future.
It was also a great opportunity to honor the many donor families who were present. Several families brought hand made quilt squares to represent their loved one and to hang on a memorial quilt. It was so touching to hear moms, dads, husbands and wives speak. There were many present who had lost their loved one during the past year. They were obviously grieving for life that was lost far too soon. There was one father who spoke that particularly touched me. His son passed away in November and became an organ donor. He had only recently graduated from college and had married to a wonderful young woman (she was also present). He had been married for a few short months when he lost his life in an accident. This family was obviously devastated. The father spoke about how for the very first time since his son's death he felt a sense of peace from seeing all of the organ recipients living life. It of course did not take away his grief, but he said that it helped to see that his son's life and donation will leave a lasting impact. Hearing stories such as his make me even more thankful for Nathan's donor and donor family. His donor was a 16 year old young man who also lost his life far too soon on Christmas day. Somewhere I know that his family is still grieving. It especially makes me aware of the need to always live our lives in a way that is worthy of the gift of life that we have been given. Of course we should always do that, but this was my reminder. After each of the donor families spoke, butterflies were released into the sky as a way to honor the donors and as a reminder that life is fleeting for each and every one of us.
The picnic was also an opportunity to encourage organ donation and to celebrate life. To see all of the people affected by organ donation, just in our area was very humbling. It truly makes the impact of organ donation real. I hope that we all celebrate life each day. It is not just about those who have received the gift of life through organ donation. It is all of us. For our family, the past few months have made us more aware of the frailty of life. There are things that I could worry about or be stressed about, but I try to stop myself. I think I have a new sense of what is important and what is not. So much of what we fret over is just trivial in the grand scheme of things. I know that for sure. So whether you have been affected by organ donation or not - celebrate life today.
Thursday, April 17, 2008
Fun Week!
It has been a busy week at our house! We have had soccer games. Harrison has been at Space Camp. Nathan has lost two teeth. It is only Thursday! I thought that I would share a few pictures with you.
The first pictures are from last Friday when we had severe thunderstorms. The boys were amazed at the hail storm. They wanted to know what was falling from the sky.
They were equally excited to see a rainbow just a few minutes later.
Andrew at his soccer game
The next pictures are of Harrison at Space Camp at the Space and Rocket Center in Huntsville. I had not been there since I was very young, and I had no idea what a wonderful, fun place it is. Harrison had a great time this week and learned a lot. They have a wonderful museum and a lot of rocket displays as well as rides, a climbing wall, an IMAX theatre. I will definitely be taking all of the kids back this summer.
Entering into Space Camp
Harrison at the top of the climbing wall
Harrison's favorite ride - Space Shot
Andrew and Harrison riding a ride
The last pictures are of Nathan. He lost one of his front teeth on Tuesday night.
...and the other on Wednesday night
So, that is our week so far. I hope that you are having a great one as well!
Lora
The first pictures are from last Friday when we had severe thunderstorms. The boys were amazed at the hail storm. They wanted to know what was falling from the sky.
They were equally excited to see a rainbow just a few minutes later.
Andrew at his soccer game
The next pictures are of Harrison at Space Camp at the Space and Rocket Center in Huntsville. I had not been there since I was very young, and I had no idea what a wonderful, fun place it is. Harrison had a great time this week and learned a lot. They have a wonderful museum and a lot of rocket displays as well as rides, a climbing wall, an IMAX theatre. I will definitely be taking all of the kids back this summer.
Entering into Space Camp
Harrison at the top of the climbing wall
Harrison's favorite ride - Space Shot
Andrew and Harrison riding a ride
The last pictures are of Nathan. He lost one of his front teeth on Tuesday night.
...and the other on Wednesday night
So, that is our week so far. I hope that you are having a great one as well!
Lora
Monday, April 14, 2008
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
"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
Saturday, April 12, 2008
March for Babies
On Saturday, April 26th I am walking in the March for Babies (formerly March of Dimes) walk. The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. Their focus is on all babies and making sure that babies are born as healthy as they can be. My personal fundraising goal is $150 but our team is trying to raise $1000. If you would like to help support our team and the mission of the March of Dimes, you can click on the link on the right of the blog to donate. Thanks and have a great weekend.
Lora
Saturday, April 5, 2008
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
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
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