Organ Donation

I saw this video (just click on the link) posted on Liver Families today and thought that I would share it with you. It is about a young boy in Dallas who received a liver transplant from a young drowning victim. Maybe it is not the most upbeat of topics but it was certainly a reminder to me of Nathan's gift of life. At times it is hard to think of the loss of life on the other side of transplant, but it is a very real fact that another life was lost so that the life of my child (my Nathan) could be saved. I think that it takes amazing courage for donor families, who undoubtably are facing the hardest moments of their lives, to choose to give life to others. In many instances, maybe the family knew the wishes of the donor. But even so, I still imagine it is a hard decision. In Nathan's case, a 16 year old young boy (16 seems younger and younger to me as the boys get older) died in a car accident on Christmas Day. Can you imagine? I don't ever want to forget the sacrifice that they made for Nathan. I want to remember every day. Each day that he can get up and do normal things like play with his new puppy or go to the library, play with his brothers, eat ice cream or ride a bike is because of an organ donor. And of course because of our great God who is so faithful. If you have ever considered being an organ donor, tell those you love. You might just have the opportunity to give life.

Alpha-1 Antitrypsin Deficiency Conference

We have just returned from St. Louis where we attended the National Alpha-One Antitrypsin Deficiency Education Conference. Read more about alpha-one here: http://www.alphaone.org/alphas/?c=01-What-is-Alpha-1-Alphas As you probably know, both Nathan and Harrison were daignosed with Alpha-One Antitrypsin Deficiency last summer and this is what lead to Nathan's liver transplant. I am so glad that we were able to attend. It was a wonderful opportunity to hear about the latest research, meet top physicians who are working in the alpha-one community, and meet other families with children who are affected. Even though alpha-one is present in 1 in 3000, only about 5,000 people in the U.S. have actually been diagnosed. That seems overwhelming to me when I think that 2 of those 5000 are my children. There are about 25 million carriers of alpha-one. Stephen and I are both carriers. This means that we carry one normal and one abnormal gene for alpha-one. So each of our children had a 25% of having alpha-one (Harrison and Nathan), a 50% chance of being a carrier, and a 25% chance of not being affected at all (Andrew). I remember how I felt about this time last year. It was so overwhelming to be faced with an unfamiliar diagnosis and an uncertain future. I think that is why a conference like this is so important. It seems like the more I can educate myself about alpha-one, the better I am able to face the future. One physician who spoke at the conference said something that really stuck out to me. He said that, "You (who are affected) have to be your own expert when it comes to your diagnosis." This makes sense to me. There are not that many physicians who have extensive knowledge about alpha-one. That means I have to know everything I can about this disease that affects my children. I have to do everything I can to work towards a future where a cure is possible. So now my mind is churning with different possibilities of how I can be a part of working towards a cure. Who knows what we will come up with. But, I think as a family that we have to do something. Maybe it gives us some power over this disease, I don't know. I don't feel I can just wait on someone else to do something. Stephen has some crazy ideas on how to raise money. Of course, I am a little more practical. We'll see what we come up with. If you would like more information on how to help, you can look here: http://www.alphaone.org/help/ . I pray that there will be a future where Harrison and the many others who are affected will not have to face the effects of this disease. Now that Nathan has been transplanted, he is essentially cured of the alpha-one. But, we have traded alpha-one for the effects of living post-transplant. Now we find ourselves a part of both of these communities. Oh how I long for the simplicity we had last April....

We did a couple of fun things while we were in St. Louis as well. We went up in the arch (yikes!) and we took the kids to a Cardinals game. I will share some pictures later.

Organ Donation Video

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

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.

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

Alpha-1 Antitrypsin Deficiency

I have found a video that I think gives a reasonably simple explantation of Alpha-1 and its effects on the liver and lungs. I thought that you might like to see it. It helps me to visualize what is going on in the body.