National Organ Donation Month

This post is long overdue. April is National Organ Donation Month, and I want to spend some time telling you a little about Kyle's heart donor and encouraging everyone to sign up to be an organ donor.

It has now been 16 months since Kyle received his new heart. Our lives are back to what I guess you could call normal. Kyle is in the best health he has ever been in. Taking medication and the extra precautions to keep him healthy have now become part of our daily routine. He has adjusted so well and is thriving. I still think back to those days in St. Louis and I am sure the memories will never leave me. I don't like to think about it but still sometimes when it is quiet I reflect back on those times. Kyle's question, " am I going to die?" still haunts me. But thanks to a stranger's unselfish act of kindness in their moments of deep sorrow, Kyle was given a second chance. I will forever be grateful.

I wrote Kyle's donor family back in December when his one year anniversary approached. The next month I heard back from them. Writing to them was hard, receiving their letter was just as hard. We now had a story and pictures of Kyle's donor. It truly made it real. They have asked us to keep in touch with them and I have made a goal to get a letter sent back to them this month, in honor of National Organ Donation Month.

I will not show Kyle's donor's picture or go into great details as I have not asked her family's consent but I do want to tell you some about the young woman who saved Kyle's life.

She was 24 years old. We do not know where she was from but I have a good idea. Her mother wrote the letter to us telling us about their daughter. Kyle's donor had been born with an illness

she had from birth. Like Kyle she had frequent doctor visits, surgeries etc. throughout her life.

She was required constant care by her parents.

Coincidentally about the time we went to St. Louis to get Kyle evaluated in October 2008 and found out he needed a heart transplant, their daughter's health began to deteriorate and she was back in the hospital. According to her mother she was declared brain dead on Dec. 3rd. It was that night that the mother and father talked and even before anyone came to ask them, they asked if their daughter could be an organ donor. This amazed me that they thought to do this. The mother went on to tell me the amount of testing that her daughter's body went through the next day, while at the same time Kyle was in the hospital in St. Louis going through preparation and testing. It must have been so hard for them.

From the family's letter it was apparent that she was a very special girl and they loved her very much. She brought them so much joy and despite her illness was very strong willed. I can not imagine their pain and how much they must miss her. I will never take lightly the wonderful gift they gave.

It has given me some peace in that it was their choice to donate their daughter's organs, even before anyone asked, and I know they knew what a difference they could make in another person's life. They knew the suffering from frequent hospital stays, watching your child suffer, the countless doctor's visits, blood draws, horrible hospital food and sleepless nights in hard back chairs watching over your child. They knew they could save another child and family from those horrible things. Kyle's donor was someone you would have never expected to be an organ donor. Yet her parents helped her become a hero. Her heart was a good one. Her mother told me that she knew that it was. At Kyle's last cardiac cath the doctor told me "it really looks like he has the heart of an athlete". That doctor knew nothing about Kyle's donor.

Do not think that you can not be a donor because you have "this or that" ailment. Yes, many times certain diseases will limit what organs or tissue can be donated. But if Kyle's donor's parents had thought that because of her illness she couldn't be a donor, Kyle might not be here today. Talk about organ donation with your family and loved ones, sign your driver's license or become a registered donor. So many lives can be saved.

The Few Things You Really Need to Remember

I am so happy to finally see some warmer weather. So many things to look forward to this Spring. We are getting excited for Baby Johnson to make his arrival. I will be 30 weeks as of Tuesday so we are on the downhill slide. I have been looking back at pictures of Jess and Kyle when they were little. I have this picture of them framed and sitting above my scrapbooks.
I think they were about 4 and 2 then. It is definitely one of my favorite pictures of them.
Can't wait to experience the joy and innocence of another little one.
I also found a great site for poems, quotes etc. called http://www.appleseeds.org/index.htm. I found this great poem there.
I hope to incorporate it into a scrapbook page for each of the kids.

The Few Things You Really Need to Remember

Remember that your presence is a present to the world.
Remember that you are a unique and unrepeatable creation.
Remember that your life can be what you want it to be.
Remember to take the days just one at a time.
Remember to count your blessings, not your troubles.
Remember that you’ll make it through whatever comes along.
Remember that most of the answers you need are within you.
Remember those dreams waiting to be realized.
Remember that decisions are too important to leave to chance.
Remember to always reach for the best that is within you.
Remember that nothing wastes more energy than worry.
Remember that not getting what you want is sometimes a wonderful stroke of luck.
Remember that the longer you carry a grudge,the heavier it gets.
Remember not to take things too seriously.
Remember to laugh.
Remember that a little love goes a long way.
Remember that a lot goes forever.
Remember that happiness is more often found in giving than getting.
Remember that life’s treasures are people, not things.
Remember that miracles can still happen.

Our Drama Queen

Jessica had individual state speech contest yesterday and did very well. She took her musical theater piece from Pirate Jenny and also performed a literary program that she wrote. In musical theater she got two I's and a II. In her literary program she got all I's which can qualify her for All-State competition. We will not find out until later this week if she gets to go to All-State or not. She really loves performing with all of the singing, dancing and acting. She definitely did not get her talent from me. Those of you who know me or grew up with me know I am so scared to get in front of people for anything. After seeing her perform I was just amazed and told my mother-in-law, " I'm not sure she is really my child." Just kidding! I am so thankful God blessed her with her talent.

I actually got a scrapbook page done today for her.

Very simple in style but I am trying to simplify things and focus on the journaling and the photos. The journaling reads:

Since you were a small child you always have enjoyed performing in front of people, whether it is in plays, singing or playing your trumpet. This year you are a junior and you talent has seemed to blossom. You seem so comfortable in front of people. Whether it be in the plays, musicals, or speech contests you are showing so much talent. You made it to the State level of competition in both the group and individual speech contest. Your individual literary program got all I’s at the State Competition and a chance at All State while your individual musical theater piece got two I’s and a II. At these contests you have made great friends and you enjoy visiting with others who have similar interests. You have definitely found your niche. We were not surprised at all when you told us this year that you wanted to major in music at college and maybe participate in theater.

In other news Kyle has started driver's ed. I will have another driver on the road soon!

10 Years Now

March 11, 2000

10 years ago today Kenton and I were married at The Little Brown Church in Nashua, Iowa.
It is hard to believe 10 years has passed. It is also hard to believe all that we have been through!

Another Busy Week

We have had another busy week and weekend. Yesterday Kyle went to his first FFA Contest in Corning. He looked so grown up all dressed up and wearing his FFA jacket. I wanted to get a picture but we were running late and Kenton had to take us into town to meet the bus being as we had snow again Friday. We left the van in town Friday night because we were not sure we could get it home. Anyway, Kyle did very well at contest and scored 3rd out of 26 in the competition he was in. He will now go on the the district competition here in a couple of weeks.
After getting the van back home, Jessica and I took off for Des Moines to go Prom dress shopping. It is quite a struggle for her being so tall. We went to Stacey's in Urbandale and found it to be quite an experience. It is a large building and they advertise to have over 5000 prom dresses. We had to take off our shoes before going back to the large room where all of the dresses are. They assign you a dressing room and a helper and you then start going through all of the dresses. They are grouped on large racks with the sizes at the end. The place was packed and I don't think I have ever seen so many girls shopping for prom dresses. After about an hour and a half and thanks to our helper, Alana, Jessica found the perfect dress. It was just what she had been looking for and good for Grandma Johnson it fit perfectly. It won't need any altering and it is actually long enough. It is strapless, turquoise in color with silver bead work on it. It is very full and poofy on bottom. She looks gorgeous in it. I had to be the one to take the heavy dresses off the hanger, help her get in and out of them and then put them back on the hangers.

By the end I was exhausted, and have a new respect for sales consultants who do that on a regular basis.

On the way,we stopped at the fabric store in Creston, Quilts and Other Notions, to get some more fabric for decorating the baby's room. I had gone with Kenton's mom a few weeks ago and we found some that I fell in love with. I am not really any good at sewing but love fabrics and all of the beautiful colors. I decided to go with a rust color and green. We are going to work some farm animals into the decor as well, after all he will be a little farm boy.

I am so lucky that Kenton's mom is such a great seamstress. She is making bedding and sheets for the crib out of these materials. Can't wait to show the finished project. Baby Johnson doesn't officially have a room yet but we are working on that and probably will still be working on it after he is born.

We are home the rest of the weekend and getting ready for another busy week. It is snowing outside again and we are suppose to expect another 5 inches today. I hope Spring comes soon!

A Favorite Book and How Important Our Friends Are

The kids and I all share a love for reading. It is not uncommon to find all three of us with our noses in a book on these cold winter nights. Kenton, not so much. He reads the occasional farm magazine but does not share that love for reading that the rest of us do. I recently read this book by Kelly Corrigan called The Middle Place. It was a wonderful read. It discusses the author's struggle with breast cancer, and finding herself in that "Middle Place" where many of us are at. We are parents trying to care for our children, yet still someone's child needing our parents. I have to admit I am still a Daddy's girl so I could totally understand where the author was coming from. The book also includes this exert that Kelly reads on this You Tube video:

(I will warn you it can make you cry as it talks about our friendships and connections with other women.) http://www.youtube.com/watch?v=u_4qwVLqt9Q

I did a mini scrapbook a while back on the importance of the women, (friends and family), in my life. It was based on the album and products we received in a Rusty Pickle class I took a few years back at a Creating Keepsakes Convention. It is still one of my favorites.

We have had another busy weekend at our house. Yesterday was my birthday, the kids and I spent the day shopping for some clothes they needed for upcoming events. Kenton was busy working outside. Today he is stiff and sore. I think he aggravated a back problem he already had. I got to spend a little time scrapbooking, Kyle spent the afternoon ice fishing again, and Jessica continues to work on her individual speech material for contest. We are headed out for a 4 -H meeting now.

Update

I know it has been about a month since I last updated our blog but times are really busy. January was a a busy month for us. I participated in the health fair that the hospital sponsored in Maryville. Brenda Neff, Joshua Allee and I had a table with information about organ donation.
Since Kyle's transplant I have wanted to get involved with promoting organ donation awareness.
There was a good turnout and we were asked some common questions that we were glad to get the answers out there. Brenda and I have become friends not only through the common bond of organ donation, (her family lost their little girl, Abrielle, in a tragic car accident and they donated her organs) but also through our shared hobby of scrapbooking. Joshua and I work together at St. Francis as he is our hospital chaplain as well as a long time adopted part of our family.

I am now 23 weeks pregnant with Baby Boy Johnson and we are trying to get our home ready for the new little guy as well as pick him out a name. It has been quite a family involved deal and lots of fun to see what names the kids have come up with. We are still undecided. I am feeling good, just very tired. Probably another reason I haven't blogged much lately.

Kyle is doing wonderfully! He had his yearly cardiac catheter in the first part of January. The results were amazing. This time they checked his coronary arteries due to the fact that transplant patient have a tendency to develop coronary artery disease. Kyle's looked great and the doctor even told us, "actually, it looks like a heart of an athlete!" I almost cried. I never dreamed I would ever hear that said about my son's heart! What a miracle! We continue to monitor his anti-rejection medication levels. The doctors in St. Louis want him a little on the high end as he is so at risk for rejection, esp. with the rejection he had early on.

Also in the early part of January we received an amazing and emotional letter from Kyle's donor's family. I hope to post about it soon. It was a beautiful letter and her story is remarkable. I can't wait to tell you all about her.

Kyle has been busy watching football, basketball and ice fishing with Kenton. Sunday Kenton's brother-in-law, Kenny, brought up his ice fishing hut and they fished on our pond. I walked down to check it out but was having camera trouble so this is the only picture I got. If you like fresh fish, the ones caught this time of year are so much better than in the summer. They taste so much better, because of the cleaner water I guess. They do not taste so "fishy".

Kenton has been busy pushing and blading snow-what a crazy winter this has been! We are all craving green grass and sunshine. Spring can not get here soon enough. We started having baby calves this week. The first one was born on Superbowl Sunday and yet another one today. Caring for them in this weather keeps Kenton busy also.

Jessica has been busy with school and speech contests. She just got finished participating in large group speech contest at State. She was part of Musical Theater and Improv. Both of her teams made it to the state level where the competition was tough. They scored well there also.
We were not allowed to take video or pictures, I so wished I could have. She is amazingly talented with her singing and acting! Her solo part in Musical Theater included part of the song,
I dreamed a dream, the song that Susan Boyle sings. It brought tears to my eyes. She is working hard now getting ready for individual speech contest. She is considering a major of music in college. I guess I should have known that even when she was little and she and her Gramps would ride around in the truck checking cows both trying to out sing the other!

Sorry for such a long time between post and such a long one this time. I hope to post on a more regular bases again.