May 2, 2010 (third post)

How powerful is community? How powerful is God's love? No man could be more proud of what my children have done. Garrett's story has touched a bunch of folks. Tom Urbani, former Cardinal's pitcher wrote today "He's brought a whole community together. I'm honored to call him my friend....."

After reading my emails, I just had to share this picture. It brought me up.

Tom was referring to a car wash held today to benefit the High Plains Little League and Garrett. In the snow and cold wind, cars were lined up, I'm told. So many incredible kids braved the cold to show Garrett they want their friend back on the diamond. This picture says it all. What a great community. "Thanks" will never be enough.

May 2, 2010

A short update tonight. We just got done praying as a family for strength, healing, and appreciation for what this journey is doing for us. We're closer as a family, we're closer to our God and we're being blessed each day by more folks who love Christ being brought into our lives.

Garrett's resting heart rate was up to 137 today. I phoned the on-call coordinator with the transplant team. Several phone calls and visits with cardiologists later it was decided to give him another dose of a diuretic. We're hoping that it's just side effects of the medicine he's on to fight the side effects of the medicine he was taking to fight the rejection. We'll find out more in the morning.

Kathy is very scared tonight. There's just so much we don't understand about why these changes are occurring again. I told the nurse today on the phone that I don't even trust my own instincts anymore regarding Garrett. Every time we think there is something up, they run myriads of tests only to come up with more question marks than answers. It happened in January of 2008 and we know what happened in March of that year. It happened in February of this year and he got sick anyway. Now in these past two days, my gut tells me that something is up again but the nurses are not overly concerned. It's quite a chess game. I hope they're right.

As Kathy quietly cried on my shoulder tonight, out of sight and sound of the children, I reassured her as best I could. I hope I was convincing. She deserves to rest peacefully tonight. Garrett had a few really good days and is probably just a little tired from the activity.

I had a brief conversation with a friend today and we discussed prayer. It's not "when we pray", it's a better question to ask "when don't we pray". Each breath of each day should be for God. To talk to Him like the friend He is. To cry to Him when we're scared. To laugh with Him when we're happy. To thank Him for every gift and to trust in Him that His plan is perfect. I think life can be a prayer when we try for Him. Formal prayer is beautiful, but informal prayer is constant. At least that's what I try to do. I know I fail miserably, but I have to reach for it. We're ok tonight. He knows what He's doing.

Morning is coming, and with it more answers. May our Lord God grant you peaceful sleep and His angels keep watch through the night.

JD

May 2, 2010

I spoke with my mom Saturday afternoon and after asking how Garrett was doing, and the rest of the family, she mentioned how much she looks forward to reading these updates. It was a gentle reminder to make time and jot something down this weekend. Sometimes I forget how many folks use this forum to stay in "contact" with Garrett and his situation. It's been a great piece of therapy for me, to write and use this as a diary of sorts to later maybe be gleaned for a larger project someday. I need to remember that mom and many others use this as sometimes their only way to keep from wondering how our little warrior is handling the journey.

To be honest, I've spent the past 24 hours back with my family in tact and being quite selfish with my time. When Jessi and I arrived yesterday evening, Garrett met us at the door with tears in his eyes and held on to use for a long time. Then they went through a bunch of hand-made cards from Garrett's classmates. Friday was "Cowboy Up Day" in honor of Garrett at his school. All the kids and teachers dolled up in their best cowboy renditions just for him. Garrett and Jessi later spent 3 hours having fun with a whoopee cushion and "getting" everyone in the house, at least once.

It's tough dealing with the separation. Normally, these weekends in April and May would find me helping friends working calves. But this isn't a normal year. The brandings will just have to happen without me this year. There's no place I'd rather be than right here. Maybe Jessi and I can sneak off to one of them. She needs a special day, too, and there's nothing she loves more than helping work the baby calves.

It's now about 1:30 am, and I can't make myself go to sleep. Garrett has long ago fallen asleep next to me on our mattress on the floor in the basement here, but I just want to lay here and watch him. I smile every time "Sir kicks alot" stretches out and whacks me in the shins or hollers out in his sleep for someone to throw the ball harder. The little "annoyances" that once aggravated me when he just "had to" sleep with me, tonight bring me a tremendous sense of joy. Not long ago, this moment was uncertain.

Before he faded off, he asked me to check his vitals again. He's more attentive to his body now than ever and wants to know. His blood pressure is good, but his pulse rate has steadily increased a little in the past few days. Not enough to be overly concerned, but enough to raise my eyebrow. He was in the high 90's a week ago, and in the 120's tonight. I'm glad we have another check up on Monday. It could also be the excitement of having us all together again, seeing Levi last night (those two fighters really help each other stay strong) and/or a visit from one of his very best pards today. We also played catch for quite a while this afternoon. We were enjoying this new found freedom so much that we over did it a little. He got to feeling a little fatigued after, so tomorrow we'll take it easy. But that's what he needs to do. He needs to test his body a little at a time, listen to it and respond accordingly. We have to remind ourselves that this is a marathon, not a sprint. He can still throw the ball though! He stung my had a couple times pretty good pitching this afternoon. We took our break to watch the Kentucky Derby. Kathy picked the winner.

Garrett's doing really well overall. His face is puffy right now, but most likely from the steroid treatment he's on. He finishes it this weekend and should lose his new "baby cheeks" shortly. He just jokes about it and says he's starting to look like one of the chipmunks.

Kathy and I reflected tonight on our 10 years of marriage. How our "honeymoon" was interrupted by my fathers death, then we learned we were pregnant with Garrett and he was sick. Between he and I and Jessi, we've spent way too much time in hospitals in the last 10 years but that's just the way it is. It makes times like right now so much sweeter. His little terrier is asleep on the mattress next to him, his foot is on my leg...........and life is Good!

Tomorrow Jessi and I will sneak out and go visit my dad's grave early in the morning, go to church and relish the last part of our weekend together as a family. It seems like there's always a head wind driving back south. I guess the ol' pickup doesn't want to go back without them either.

I'll drop another note after Monday's check up. Kathy's anticipation is rising as we're now just a little over 3 weeks away from the biopsy. That's when we'll get a lot of answers to lingering questions. We just have to enjoy every minute of these times, one day at a time, and pray for the news we want so much.

In Him,

JD

April 29, 2010

Today was another victory in the journey of our littel warrior cowboy. His check up today showed that he does not have any fluid on his lungs, his liver is not distended and the rash is gone! His heart functions continue to get stronger and we can start taking him on walks now. While he still has to listen to his body and make sure we don't over do it, a little light exercise has now been approved. He's pretty excited. I told him I'd bring the gloves up this weekend and if he's feeling up to it, we'll play a little catch.

There really isn't a down side because we already knew that this journey will take a while, but we had to re-adjust his anti-rejection meds again. It will continue to be a balancing game until his body is strong and hopefully has fully accepted the heart again as his imune system rebuilds. Right now he's on about 3x the amount he was on prior to the rejection episode.

Kathy told me that the doctors are truly inspired by Garrett's ability to recover so quickly. Some of the nurses who took care of him when he was critical have even come to the clinic to visit him because they just can't believe he's doing so well. It was just a hand full of days ago that they were concerned he may go into heart failure at any time. Thank God for great physicians and the healing power of prayer.

Garrett sounded so good on the phone tonight. He's missing Jessi and I really bad, along with all the animals, but is overall a very happy little boy right now. Jessi gave him a full run-down on all the horses, dogs and barn cats, including the litter of kittens she found the other day in the shed. They're already working on names. Anyone want a kitty?

I was thinking tonight about something he did a little over a week ago that I will never forget. It goes back to when he was born. When Garrett was just a few minutes old, he was taken from the delivery room immediately to a critical care unit and after 4 tries, they inserted an IV into his tiny hand. As he was crying in pain, I wiped that first tear from his cheek and placed it on my own. I've done that every time since then, through the literally hundreds of pokes, needles, IV's and even from fear as I would lay him on the operating table and kiss him as I've done 23 times since that day 10 years ago. A little over a week ago he was in so much pain and afraid, I had already performed our little ceremony as the only way I could symbolically help carry his tears. But only a few minutes later when the pain was at it's peak, he was losing the ability to move his extremities and thought he was becoming paralyzed. Garrett called me close and took a tear from his own cheek and with a shakey hand placed it on my cheek. His eyes were so full of anxiety and fear and putting his tear on daddy was his way of asking me to help take the pain away. God only knows that I would take his place if I could. I will never forget that painful but beautiful moment shared between a child and his daddy.

During my meditation today, I focused on the fact that Jesus has promised when we can completely give everything we have to him, all of the fear, pain, uncertainties, worries and problems of daily life, and to gladly bare these discomforts to honor Him, He will then reveal Himself completely to us and then we will have true peace and joy. That is the goal. That is where I want to be. Then, there will be no need to wipe our tears on anyone because there will be no more tears.

I hope your weekend will be as joyous as mine. I'm heading north and get to hold my wife and my boy!

JD

April 28, 2010

The good news is that Garrett has another great day. He misses home terribly, but physically he is feeling better than he has in a while. God continues to touch him gently.

On the other hand, I just got done pontificating how you just have to stay in the fight and there isn't time to feel sorry for yourself. Remember that one? How about riding that bucking horse one jump at a time? Well today I spurred over his neck pretty bad. Unfortunately, I crashed in front of some folks I respect and who depend on me to be strong. The pain and frustration reached a boiling point and I failed to take the pot off the fire.

Before I go on too far, I spent the rest of the day in some type of prayer, asking Jesus to pick me back up and reaching out to some good men to help bring my petition to the Father. I received one response from an incredible man who snapped a knot in my butt and told me to drop it! He reminded me that it's ok to be human and to move on. He is right, and I will do my best to do just that. I can't protect my family if I'm swimming in quicksand.

Fear is a strange creature. It is nurtured by the enemy and fed by our inadequacies. I disguises itself to those who think they're immune to it. Apprehension can be a good thing. Fear with fatigue can be deadly. So I guess this is for those who think we don't fall apart. We do. I did, and I hate what happened. But I will take the advise of a man who has been there, literally, and give my attention and concerns back to my Lord God who alone can calm the storm.

I love my God and my family with everything that is me. My goal is to stay strong for them, and I can do that only if Christ is my strength and I let Him have complete control.

God bless,

JD

April 27, 2010

Jessi and I spoke to Garrett a little while ago as he was getting ready for bed. I'd made it an entire day away from him and his mommy and only had to call them 6 times. I did great! Jessi and I even found a little time this evening to mess with a couple horses for and hour or so and enjoy a pretty spring evening. Like the man said, "the outside of a horse is good for the inside of man".

Garrett was in a great mood and said this is the first day in about a month when he didn't hurt someplace on his body. God is so good and Garrett is so happy! His days keep getting better and better. His mommy said he sit's around watching baseball and eating. The steroids make him hungry all the time, so he wants to graze constantly. She makes sure he's grazing on fruits and veggies so he won't swell up like a bloated carp! We can't let him do too much yet, because his heart isn't ready to be tested. For a busy little guy like Garrett, that's a tough order.

We hate to get too excited just yet and the doctors have drilled that into us also. They said as bad as Garrett's rejection is, it would not surprise them for him to back slide again and have to kind of start all over. They even kind of expect it. That sure wouldn't be fair, so let's pray that won't be the case. I think he's paid his dues.

Kathy said she heard from someone today who asked her how she "does it". We hear that alot, and it's in kindness when stated. But the reality is that you really have no choice. When your child is fighting for his or her life, no matter how many bumps, set backs, disappointments and scares, you can't just run and hide. Believe me, there had been times when I didn't feel like I could take another step and my own heart felt like it would burst, and times when the tears made puddles on the floor from anguish, terror and frustration. But if this fight took every dime we have, every day we have and even our own lives, we would never give up the fight. God has blessed us with enough "breaks" between fire fights that we can sort of re-group and come back strengthened for another assault. The real enemy at times is when you find yourself worrying about the future and the "what ifs". That's a dangerous pattern to follow. If we spent time worrying about the reality of pediatric transplant survival rates, we'd go crazy. Each day is special and we're blessed to have one more day, each day. Bucking horse riders like to say that you have to ride him "one jump at a time". This is true in life.

I've read many stories of prisoners of war who've endured years and years of physical and mental torture and stories of soldiers who found strength they never had before in the middle of the most horrific circumstances. I've been honored to meet some of these men and a resounding theme runs through all of them. They tried to make every day a victory. They all have faith, friendships and an unrelenting will to survive, to not fail their families and to win. So do we. You see, courage is not the absence of fear, but the God-given will and tenacity to fight a good fight, knowing that losing the battle would be worse than not fighting at all. Sitting around feeling sorry for yourself only aids the enemy.

Well, I'd better sign off for now. I have another issue with Garrett I need to work out. When I spoke to him, he was watching...WWE. He was watching wrestling when a Rockies game was on! I was appalled. He assured me that he'd watched the Rockies until they were up 11-0 and no longer needed his help. But still.......wrestling over baseball. What next?

Have a great day capturing all the good things, fighting for the important things and ignoring the little things. Save that energy for the big battles that surely will come.

Be blessed,

JD

April 26, 2010

At Garrett's check up today the transplant team marveled at his ability to bounce back so strongly from such devastating sickness only a few days ago. His heart is getting better every day, there's no fluid in his lungs and for the first time in two weeks, his liver is no longer distended. What I thought was still some rash on his body, was in fact bruises. They told us that his rash was so severe the other day that it actually burst some capillaries under the skin and left little blotches where the rash had been. They look like little light colored leopard spots.

He's gained back the weight he'd lost and is getting more energy by the day. Last night when we went to bed he started a "tickle fight" with me. That little booger was relentless. It was great! When Jessi and I left today to come home for a few days, it was tough as always to leave Garrett and Kathy, but I wasn't as scared this time. I think keeping him from doing too much over the next week will be the most difficult task. He's starting to have nightmares again, but I kind of expected that. I'm really watching Jessi, too. She keeps things inside and two years ago got ulcers from worrying so much. Today she she complained about tummy pain again. I hope and pray it passes. Seeing Garrett getting better should help a bunch. She's seen an awful lot of scary stuff with her brother, plus two cousins who have cancer.

I got to thinking tonight about the past 10 years or so, and the incredible journey I've been blessed with because of Garrett's illness. I'd like to think that I would have been this in-tune to the every day beauty of my family had we not traveled this trail. I'd like to think that I would thirst this much for my Lord or tried this hard to be an honorable man, but I'll never know that.

What I do know is that every day is a victory and can't be wasted. I've been blessed with wonderful memories like closing my eyes and trying to memorise every smell, sound, touch, feel and emotion when Garrett was only 6 months old just in case I didn't have that chance again. Or the feeling of tremendous responsibility combined with fear, joy and un-matched love when Jessi would curl up on my lap, tuck her head under my chin and fall asleep. I crave the sound of Kathy's laugh and the softness of her gentle hands in mine. I've stayed awake for hours just to watch them sleeping peacefully and relish those moments when they aren't afraid of anything. I've been given the gift of being knocked down to my knees, because it gives me time to talk to God while I'm there. It's pretty awesome to have been given so much in my life. I've been given back both of my children when medical science indicated that shouldn't happen. I've witnessed them grow as children while they find miracles in nature and prefer animals to a t.v. I've seen new colors brought to my life because of them, just like so many other "daddys", but because my nerve endings have been peeled raw so many times, I also feel the little joys more easily. I don't deserve a single gift, but I'm so grateful for every blessing.

I learned today of another little 5 year old boy who has a sick heart and might need a similar treatment. It just drives it home that our story is not unique. There are so many kids and families out there who need prayers and support. I'm just incredibly thankful that God blessed my family with so many around us who care.

Our prayers tonight are for little Andrew, and for all of those who pray for us.

God bless,

JD