Bristol Motor Speedway

Excerpts from online journal for Tyler Barker

August 26, 2008, 12:35 pm

By Trish Barker

Trish Barker (fasttrackphotos.net)

Editor's note: An edited sampling of journal entries Trish Barker has written during her 21-month-old Tyler's battle with bilary atresia, which requires a liver transplant to restore his health. You can also see the complete journal:

May 24, 2007

I wanted to thank everyone for their messages they really mean a lot. I plan on printing out this website throughout this journey so Tyler can see it when he is older and know how many people are thinking and praying for him.

May 30, 2007

As I had said before, and especially as we get closer to transplant, it just reminds me of how important organ donation is and there is no greater gift that you can give than the gift of LIFE! For more information and how to get registered you can visit www.organdonor.gov.

June 12, 2007

We had a fund-raiser for him on Saturday. David's race car was on display at a Blue Springs Price Chopper for his racing group and we handed out flyers and had a donation jar, and did the same thing at the races Saturday night in Grain Valley. It was an amazing feeling to know that so many people are willing to give to help our little precious boy. Thank you to anyone that helped.

July 8, 2007

I have to tell you a story about an incredible boy. We went to the races to watch my brother Saturday night. We met our good friends Shad and Tracie [Badder] along with their son Cody. Cody has had a rough couple of weeks. His brother and him had an accident on an ATV and Cody received a compound fracture of his femur bone. ... I think he is 11 and is being tougher than I could ever be. So we are at the races and he buys a few 50-50 tickets. ... We are sitting is near where the guy stands with the bucket of tickets. We tell Matthew to run over there and tell them he wants to draw the winner. They let him draw it out and they read the numbers. Tracie starts saying "You won, Cody won!" ... So they congratulate him he's won $212. And then he turns around to me and hands me the money. ... He tells the announcer that his is donating that money to Tyler for his transplant fund. ... I think we were all crying. I am tearing up just typing it all out. It was an amazing thing for a child to do. It really touched our hearts. All I know is that if this wasn't God's work, I don't know what is. God had his hand on the whole thing. What are the chances? Cody buys a ticket, Matthew draws his number out.

Aug. 5, 2007

I also want to thank Cowboy and Harriet [Chancellor] of MLRA, the racing series that David runs. They have been doing raffles at the races for jackets and stuff and donating all the money to Tyler's fund. We can't thank everyone enough.

Aug. 15, 2007

We always put a bible verse in the cockpit of David's race car, this year's had more meaning in our lives than I thought it ever could. It is: "Trust in the Lord with all your heart, and lean not on you own understanding. In all ways acknowledge Him, and He shall direct your paths." Proverbs 3:5-6

Sept. 6, 2007

Tyler has had a lot happen the past couple weeks as far as development goes. His first tooth broke through a week ago and this past weekend at the lake he crawled for the first time. He is starting to move more and more each day. Our prayers for Tyler will be that he can stay healthy and continue to grow while he waits on a liver. Now is the time we really need to trust God that he will send the perfect liver in the perfect time for Tyler.

Oct. 23, 2007

WOW!!! That is all I can say about the [Oct. 19] benefit. It was a huge success. There were around 475 people there and everyone was incredibly generous with their bids and donations. Everything seemed to go pretty smooth. We even heard people say it was one of the better run benefits they had ever been to. Not bad for a bunch of rookies. Although I know God was watching over everything, there is no other way to explain how smooth it was and the awesome feeling I at least had being in that room. It was very powerful and wonderful. ... It is a night that will never be forgotten.

Dec. 14, 2007

WE ARE HOME!! [During a lengthy hospital stay] our poor baby has been poked and prodded more than anyone should have to be. His IV went bad yesterday afternoon so they gave him is antibiotic last night by a shot, then this morning they had to start an IV to sedate him. After she looked she said the only place left was the top his foot. His arms have been used up from his hands to his armpits. ... I think Tyler is glad to be home and be able to play with his brother. I know mom is glad to be home and able to sleep in my own bed. Hopefully he sleeps well tonight. Everyone down at Children's Mercy is very nice, but I really hope we don't have to visit them anymore until its transplant time.

Jan. 28, 2008

I can’t even describe the places we have been emotionally. Most days are OK, but there may be a time that you’re not expecting it and you lose it. There are times that I look at Tyler and his huge belly and feel so bad that he has to go through all this. His belly doesn’t seem to bother him and he doesn’t know any different, but I do and it breaks my heart. A baby shouldn’t have to endure all the things he has to go through. ... I often wonder what it will be like to be post-transplant. I had the pleasure of talking to Amy [whose son received a transplant Dec. 29, 2007] ... she told me that there is a tension lifted that they didn’t realize was there and it felt so great to be post-transplant. There are times I can’t wait for that call, but other times I think about what that call will mean for Tyler. He is the one that has to go through all the pain and his body being operated on, but I have to focus on how much better he will feel later once he recovers. And the new chance at life it will give him.

Feb. 5, 2008

[The Barkers had been summoned to the hospital as a backup in case another child couldn't receive a liver transplant.] We were told about 6 a.m. that the other boy was cleared for transplant. Of course, we are a little disappointed and had thoughts that Tyler may be on the track to good health, but it was not to be. We know that this other boy needed the liver worse than Tyler did right now, so we can say the right person got the liver. We will just continue on and hope and pray that Tyler's perfect liver will be coming soon. Thanks for all the thoughts and prayers, hopefully soon you will see another post and it will be the real thing.

Feb. 6, 2008

I have really had a hard time getting over our experience Monday. In some ways I wished it had never happened. I have never been too anxious since Tyler has been on the list. I figured we would be on it for a long time, but this experience really has my thoughts and emotions in overdrive. I am finding myself carrying the phone around the house, thinking every time it rings it might be it. I guess we have had a taste of getting the call and that it can happen so now more than any other time I am really wanting that phone to ring. I find myself looking at Tyler in a different way and feeling more sorrow that I, his mother, the one that is supposed to make everything better has to watch him get sicker before he can get that life-saving liver. This is such a cruel disease. It is a slow, progressive disease so you have no choice but to live the days, weeks, and months watching your child suffer, and there is nothing you can do but wait.

March 8, 2008

With March here, racing is just around the corner. David has been working hard to finish the body of the car. He took it to the lettering guys on Thursday and we will get it back at the first of the week. I am not sure what Robbie [Musick] will end up doing with it, but we talked to him about putting a picture of Tyler on the car and having something about organ donation. I am excited to see what he comes up with. Since all this has started with Tyler, I have always tried to look for reasons this was put in our lives and take advantage of what I can do to educate people. Racing is a perfect place for us to bring awareness to organ donation. Our car is seen by hundreds and sometime thousands of people on a race night, and I hope people see the messages on our car and will give organ donation a thought.

July 2, 2008

Tyler went [to the racetrack] a couple weeks ago. It was the first time this year we took him when David was racing. He did OK, but he wouldn't sit in the stroller and take a break, so he was up moving from 5 p.m. to about 11:30. He was exhausted by the end of the night. But he tried to help out on the car. He is definitely going to be the shop rat and the race car driver. He loves it and can pick David's car out on the track and watch him.

July 23, 2008

I had the home health company pick up all his feeding tube stuff and we actually moved his crib back to his room. This has been the first time since he was born that his crib wasn't in our room. He has done very well being in his room. I hope he keeps it up. It is so nice to have our room back and not have a crib taking up one of the corners. The nightstand is actually facing the right way; there isn't an IV pole and pump next to the dresser. When we are getting ready for bed we can actually turn on a light. Can you tell how excited I am? I am sure we will be putting the crib back in our room after his transplant but we will enjoy it while we can.