June 16, 2010

I’ve been remiss lately at updating Garrett’s Journey and have been reminded of it this week. Sorry folks. Guess I got caught up in the week's activities and just waiting for God to give me new words that will help everyone track our little warrior’s progress.

We had a great last weekend. Garrett and Kathy surprised Jessi and I by showing up at the house Friday night! The doctors decided to give Garrett a birthday present by letting him come home for a day. It was really a tremendous experience for all of us. They got home just before dark and Kathy stopped the car about a third of the way down our lane. She just sat there for the longest time and took in the whole picture, being her first time home in nearly 3 months! All of the flowers and paint and clean up done by our old and new friends who blessed us with their energy and effort to give her just what she deserved – a beautiful home to see when she finally did see it. She was blown away!

Garrett jumped out of the car and ran to me calling “daddy, daddy, daddy” all the way. He jumped up in my arms and hugged me so tight he squeezed some water right out of my eyes. What a moment! I turned around a moment later and he was gone. I figured he would have run to see the animals, but instead I found him lying on his bed just giddy with excitement. That little guy missed his own bed so much he couldn’t wait to find his comfort zone.

We spent the next 24 hours as a family in our own home and the feeling was just perfect. It wasn’t fireworks or tears. It was just a tremendous, calm comfort that is difficult to describe but I miss it already. Here's hoping that August will find us here again, for good.

I sometimes get weary because I want this trial to be over and for us to be together, here at home, where the kids can be in their own environment riding horses, chasing after dogs and being country kids again. I worry at times that too much separation will cause their young minds to forget life here. Jessi unknowingly put my mind at ease and reminded me of our most precious blessings. Sometimes I need to be reminded not to sweat the small stuff.

Recently I’ve learned of some other families who are going through some very difficult emotional times and I thank God every day that Kathy and I have remained as one, and that our family is still intact. Too often I’ve seen families pulled apart by tragedy, disappointment or trials that life throws at them. We’ve certainly had our challenges in that department, but we make a daily decision to love one another and never let any earthly challenge override what God has built. About a month ago, Jessi was playing on my computer and I found a little note she had written. It said ...“My family is the best family there is. First of all my mom is a great cook she cooks the best food ever. Second of all my dad well he takes knaps most of the time but also he gets me whatever I want and takes me riding. Third my brother well first of all right now he`s in the hospital it`s not surprising to me cause he`s always is in there but who cares were still together and that’s what madders. But soon he`ll be out of here ’hopefully’ and back to himself well his onry self. That is my loving family. THE END

How accurate and honest are her words?! Not the part about "daddy" napping (I only fake nap :), but the “who cares were all still together”. That IS what counts. We are still together. Our hearts are forever bonded through this challenge by the power of the Holy Spirit and God’s amazing love. I truly don’t know how anyone can start a day without Jesus as their guiding Light.

Garrett’s been feeling good comparatively, and his heart rate has been holding steady in the low 110’s. So very close to the target range of the low 90’s. It’s clear we’re gainin’. He goes back in to the Hospital next week for another round of infusions, and then it’s more waiting until the biopsy. Regardless of the outcome, we know we’ll be ok because we are together, even when we're apart, and we’re surrounded by God’s Amazing Grace.

Tonight we offer more prayers of thanks for what we have, for the challenges that bring us closer to Him and we ask for His mercy on those who need Him most. We also, as always, pray for His comforting and protective mantle to blanket all of you who have walked this journey with us.

JD

June 11, 2010

Garrett's check up went well today. His heart rate is down to 111, which is the lowest yet! He's got another infusion scheduled for a couple of weeks down the road. Depending on how he responds they will determine when to conduct the next biopsy. They told us a few weeks ago that it may be the end of the year before he can come home. However, today they said that if the biopsy turns out good, we might be home by the end of July!!! Keep up the prayers, please.

Had some nice responses already to finding a horse for Garrett. Jessi and I will start checking them out next week. She and I discussed the possibilities when we went to her first barrel race of the summer last night. She did great and didn't knock down a thing. Ol' Pepper, a heading horse she stole from me, didn't bobble and he's fresh. Good horses are so fun to have.

We met another tough little cowboy last night. During the lead-line event for little kids, a 4 year old boy got bucked off of his momma's barrel horse. Little guy hit the ground like a lawn dart and stuck without a bounce. He didn't move. It scared us all pretty bad. I was the first one to him and was administering first aid triage. When I asked him if he hurt, he said it was his back. I asked him if it "felt like a punch or somebody poked you with a pencil". He looked up at me and said "it feels like I fell off a horse". We all cracked up. This is one tough little guy. Never even one tear. I gave him a "Cowboy Up" bracelet because he dang sure earned it. All he wanted to do was get back on. These little guys continue to teach us if we listen.

It was nice to have Jessi enjoying herself again last night. This whole situation has been pretty tough on her. She is bound and determined to find Garrett a good, solid and gentle horse. One that isn't crippled or will die in a year. She's wise beyond her years.

Garrett's attitude continues to shine. He's been feeling pretty good, with all things in perspective. He just wants to heal up and come home. He's not looking forward to more hospital time, but said "daddy, it's what we have to do". He's such a good boy, but I'm biased.

Appreciate all the kindness and prayers. God has blessed me and my family immensely, and we'll stay strong to finish this fight.

God bless you all and have a great weekend.

JD
"Dynamis Ex Cardias"

June 9, 2010 - New Day, New Chance To Learn

Garrett’s 11th birthday was a blessed celebration! There was no doubt that we’d see this day, we just honestly didn’t know if it would be from a hospital bed. God gave to his momma and me the greater gift by allowing us to share this victorious day with a boy who was happy just to be at a ballpark. The game was great, the weather perfect and the moment now etched into our hearts forever. We arrived at the park in time for batting practice and stayed until the last pitch. There are more battles that lay ahead, but for now, life is good. And that’s good enough.

Today brought back a taste of reality. Being a cowboy kid, Garrett gets to learn about life differently than kids in town. Today was another example, as lost his ol' mare. He doesn’t know about it yet, and I’m going to wait to tell him. He doesn’t need another disappointment right now and this one will hurt. Only a few weeks back he’d cried missing home and whimpered about wanting to see his horse again. Unfortunately, we weren’t able to make that happen soon enough. She was a good ol’ mare and gave him lots of joy for the time God allowed us to have her. His momma and I will decide when to let him know. We just didn't see how knowing right now would help him heal. He's had enough kicks in the gut for a while.

Almost exactly two years ago, the mare developed a large tumor in her sinus. (See June 23, 2008) For reasons only known to our Creator, she sloughed the tumor and got better. A chance in a “billion” according to the vet. This time it wasn’t to be the same outcome. The tumor came back with a vengeance and she couldn’t breathe anymore. It came on fast and I’m grateful she didn’t have to suffer much. When Garrett comes home, he’ll find her buried next to the other kids’ horses in the pasture under the old cottonwood tree west of the house. Once again, good friends stepped up on a moment’s notice to help out. So many of you have been incredibly kind to us. Your compassion does not go unnoticed by us, and certainly not by God who said He “will render to every man according to his works.” Yours are great and deeply appreciated.

The situation gave the opportunity to discuss “Heaven” with Jessi as we try to understand it, and knowing that we cannot possibly know what God has in store for those folks who keep His word. Even the bible is very specific when it speaks of God’s private plans. “No eye has seen, nor ear heard, nor the heart of man conceived, what God has prepared for those who love him” [1 Cor. 2:9] In the face of a rough day I'm just awed by the timing of our Lord, allowing me to use this life lesson to teach and learn more about Him.

Jessi got to visit the grave tonight and say her goodbye. She took it hard because she loved the ol' girl, too, but also because she knows how hard it will be on Garrett. She placed some flowers on the mound, flowers that once again our wonderful neighbor picked up just for the occasion. It was sad, but being a cowkid herself and having been through this before, Jessi understands that we don’t own the animals in our world. They are made for us to care for, love and respect, and are just on loan from God for whatever time He determines. We knelt and said a prayer thanking God for the joy this old horse brought to our family and especially to Garrett. A smile came to Jessi’s face later when I explained that she will be a tremendous help to me because now I need to find Garrett another horse and I need her to try them all out until we find just the perfect one. (If anybody knows of a good solid, bomb-proof kids' horse, preferably one that's had a job and seen lots of cows and arenas, I've got a professionally trained heading horse I'm willing to trade straight across)

I wanted to share this story because I thought it really puts into perspective what is truly important in our lives. After an evening of complete fun and being able to forget (almost) what is going on inside Garrett’s body the loss of a beloved kid’s horse is sad, but every time we have to say goodbye to one, we are grateful for being blessed with many good horses over the years.

Although it was a tough start to the day, I can’t help but rejoice in the excitement we shared last night. It was a nice interruption to the daily battle. We keep working toward that day when Garrett will come home, and praying that God will allow that gift soon. Garrett has yet another in-house infusion in about a week or two, then more waiting and hoping the regimen will do its magic and make him well before the biopsy.

As I close tonight, I want to share another quick story I heard today that also really defines the “cowboy up” attitude. A 14 year nephew of a friend of mine had quite the wreck earlier this week and is gratful to be walking. He was riding a colt Monday afternoon when the horse flipped over on him, tearing his scrotum in half with the saddle horn. He suffered the traumatic removal of one testicle.

He was flight for life’d to Children's Hospital where he underwent emergency surgery. The doctors were able to re-attach the very important item and sewed him back together. After 24 hours he went back home, clearly upset when the doctors told him he couldn't rodeo for at least a month. "Cowboy Up" is just what it means. These tough cowkids don't have time to feel sorry for themselves. They just want back in the game.

Have a great week. You’re in our prayers.

JD

Birthday Boy

Tomorrow morning at about 1000 am, our beautiful little warrior will celebrate 11 years of victory! Actually, a little more.

On March 31, 1999 Kathy and I learned that the baby she was carrying had a sick heart. For 4088 days we have fought and prayed and rejoiced in each day our Lord has let us share our time on His earth with this wonderful child warrior. The littlest cowboy is getting big.

I'm writing this now because I won't be writing tomorrow. The doctors told us today that although Garrett's heart is not showing any signs of improvement, it's not getting worse either. What we are excited about is that his immune system is showing signs of getting stronger, so we can take him to a Rockies' game for his birthday. So tomorrow night, we'll be eating dogs and cheering our favorite baseball team.

Tonight when I got home, I was overwhelmed at the look of the place. So many kind folks cleaned and painted and planted flowers over the weekend. I can't wait for Kathy to see it, hopefully soon! I looked around and could not believe that such a sinful man as I could receive such blessings I purely don't deserve. But I am so grateful! As I was looking through the house, I knocked a picture from the wall in the kids' room. When I picked it up, I found a note on the back of it that I'd written to Garrett just days before he got his first heart in 2000, and days after they'd opened him up to band his arteries to buy him more time. At the time I wrote it, Garrett was in intensive care at the Children's Hospital. I'd like to share it.

January 14, 2000
To My Son Garrett-
Your mommy & I are so very proud of you. Each day you fight to see tomorrow’s sunrise. Each day you smile and show your love for life. Each day you hurt as your little broken heart vigorously works to bring you what you need. Each day your eyes glisten with the words only you can show. Your fight began so long ago, yet each day you win another round. Each day we pray for Jesus to hold you closer. Each day brings hope of more dreams to come true. My life has more meaning now because each day I love you more.

“Do you know how much I love you?”
Always by your side. I will never leave you – I’ll be with you to greet each day.
Love, Daddy

I don’t remember when I bought this little picture, but I remember it struck me then, as it does now. It is a calligraphy of a small child in his jammies, on his knees, hands folded in prayer. Below the picture is the following caption “Let the little children come unto me, fore such is the kingdom of Heaven……….Matthew 19:4. I love this passage. Our Lord tells us many times how precious are the little children in His eyes. It is a passion of mine to seek and find the path that will lead me to Him, as a child.

Again, I don’t remember writing it, but I discovered it when the print fell from the wall of Garrett and Jessi’s bedroom wall. When I picked it up, I read what I had written some 11 years ago. It seems clear to me, looking back through my memories, that the man who wrote those words was one whose heart was breaking but refused to give up and expected only a positive outcome. I would not have written something to my son unless I expected that some day when he grew up, he would find and read those words. I can only assume now because of the job I do, that I wrote it so in the event I was ever killed in the line of duty, he would one day know how much I loved him then as I do today. And I still refuse to give up.

As we celebrate his 11th birthday tomorrow we'll think back to those early days when a hurting father was praying for his little warrior cowboy to get better. And he did get better. Time and again. And though he's still fighting today, my thoughts are still the same. I lift him up to the Greatest of physicians and ask for His healing touch. There are still more dreams to come true, and being able to hug him on his 11th birthday is but one of them.

Celebrate this great day with us by thanking God we're able to wish our Garrett a happy birthday. Thanks for being here with us.

By the way, please notice the change in the name of Garrett's blog. Dynamis Ex Cardias ....this is the motto of the U.S.S. Dewey. The most heavily armed battleship type in our Navy, and the work "office" of our incredible neighbor's daughter Casey. Her shipmates have adopted Garrett and amazingly, their motto fits Garrett's Journey to a "T". The Will To Fight From The Heart - Dynamis Ex Cardias. Please keep these incredible warriors and defenders of our freedoms in your prayers.

As always, standing tall with you before the Cross that heals all hurts. Dynamis Ex Cardias,

JD

June 6, 2010

We had a really nice weekend overall. We celebrated Kathy’s birthday Friday night with family and she had her special day just about her. Garrett had really bad nightmares the past few nights, but short of having bad headaches and nausea on Saturday, has felt relatively good all weekend.

It’s very clear that the past few months away from home have impacted Garrett a lot. Because he’s limited on what he can do, he finds it naturally easier to sit around watching t.v. instead of running all over the place chasing dogs, hitting balls, riding his bike, climbing hay stacks, playing with kittens and generally having the summer fun of a country boy. Living downstairs in the “man cave” with his baseball cards, wrestling and bull rider toys is fine, but it’s not what summer is about. So I decided to build a toy for the kids so they can have a little of “home” with them while they’re stuck here. Some PVC & cement, some 45 and 90 deg. Connectors, a roping dummy head and some paint…….voila! A backyard roping toy. The kids cracked it out today and had a lot of fun. Of course it had to be painted the Rockies’ colors, so we named him “Rocky” the roping dummy. I posted a few pictures. They can drag it around and not hurt a thing. The perfect backyard cowboy kid toy!

I was telling a friend this weekend that it seems like this time in some ways is even tougher mentally than two years ago when he got his third heart. When he needed a heart transplant we were devastated, but hopeful. As soon as he got his heart we were able to set little goals to reach. Now we are living with this situation of more questions than answers. Everything is so uncertain. Hope still exists in its most precious form, but the wait is different. I guess that’s just the way it has to be, as Garrett would say.

I sprung a surprise on Kathy today. Some incredible folks from a local church, led by a very special couple, the Axtons, took on a huge project at our place while we’re gone. They cleaned, mowed, planted flowers and even got rid of my manure mountain that had been growing exponentially over the past year. With my weak glass-back, I’ve been putting it off until I could secure a skid steer. They approached me a little while back and teasingly told me we “didn’t have a choice” in the matter. They wanted to help. My only real request was that if they were going to do this, make it pretty for Kathy. When she comes home, I want her to see a beautiful home where she can sit in the mornings enjoying her coffee and let the troubles drain away. They didn’t disappoint.

They sent us a few photos and the place looks amazing! I can’t wait to see it. As embarrassed as I am to have someone else do my chores, we’re humbled and blessed beyond common words. I can tell you this, Kathy and I have already talked and we look forward to the day when we can pay this kindness forward for another family in need. When I showed Kathy the photos, she was excited but also quickly became very melancholy. She misses her home so much. Kathy hasn’t been there since this rodeo started over two months ago. Garrett, too, saw the photos and nearly started crying. I need to get my family home.

But as I lay here tonight thinking of this little bump in our trail I realize that life cannot be judged only by a single season. When we walk the halls of The Children’s Hospital, every season of life is there. We’ve been blessed to have experienced and/or seen all the seasons from the cold and grey to the warm and colorful. I tried to explain to Garrett tonight that our season of spring will come. We must get through the winter of this journey in order for God to present us with new life and the colors of our summer.

It will get better. As you can see from the photos, Garrett’s already feeling better. His heart rate is bouncing up again, but we have to remember it may take a year for his heart to heal completely. On nice days like this it’s hard not to let him run around a lot, but it was much too hot to let him play until it cooled down this evening. With time we pray his strength and endurance will only flourish and bring back the health he’d become so used to for a few years. Everything is in the hands of the One who brings us the spring and summer that we long for. He has the perfect plan and though it doesn’t make sense sometimes, I can’t help but think of the lyrics of one of my favorite songs from church; “Glory and Praise to our God, Who alone brings light to our days”.

May your days be well lit with the presence of our everlasting God. And please don't forget to keep praying for our troops. So many years ago today we lost many soldiers on the shores of France as they fought to preserve our freedom. I'm grateful for their sacrifice and to their families who shared them with us.

JD

June 3, 2010

Jessi and I were laying in bed tonight reading scripture and I read the story in Matthew where Christ tells us how to pray. I’ve read that story many times before, but tonight it struck me and I hope God does not consider me a hypocrite by praying publicly in this forum. Please understand that I use this opportunity as a means to share Garrett’s story, but also to share my sincere love of Jesus Christ.

His checkup today went well. Kathy said the bloodwork is stabilizing with no changes, so we don’t have to add any more meds this week. We still don’t have any report on the echo because the doctor was busy and didn’t get a chance to see it today. Hopefully tomorrow. The nurses said that he looks good, though. Everything considered, he’s showing improvement. We’re blessed!

Today is Kathy’s birthday. Because of the crazy situation we find ourselves in, I couldn’t be with her on her big day. Still have bills to pay so I found myself at work. After all she's been through, she deserved to have a special day, just for her. I’ll make it up to her. Take care of those who take care of you. When the chips are down, you need someone to hold your hand and pray with you.

I’m reminded tonight of the centurion who only asked that Jesus say the word and his servant would be healed. I am a modern day centurion who wears the uniform of authority and has soldiers (police officers) under my command. I, too, do not deserve to have Jesus in my life. But I know with every ounce of faith within me that should Jesus but say the word and Garrett will be healed.

Have a tremendous weekend and enjoy all the wonders our Creator has made.

June 2, 2010

B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humoral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocites, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppression, chemotherapy, plasmapheresis......................the list goes on and on.

These are but a few of the words and terms we've learned and heard about in the past few months. None of them make a whole lot of sense on their own. They are medicines, cells, diseases and treatments. The discussions that have developed because of Garrett's issues have included some or all of these at one point or another, but all we really know is that it's not "take two aspirin and call me in the morning." I wish it were that easy. We just want our healthy, happy boy back home again and playing in his yard.

The fact remains that his heart is sick and it needs to get better. We've learned that he has three different rejections going on. A battle on three fronts. He's fighting T-cell rejection from his body attacking his heart, and he's fighting B-cell auto-antibody rejection from his current heart and traces from his last heart that were never discovered.

We also know that Garrett was feeling better today and that is a blessing to us all. That's why I often say that every day is a victory. When we pray at night before we try to sleep, we ask God to hear us clearly. To see us holding Garrett up to Jesus in prayer and beseeching Him to grant our request. Nothing is impossible with God. Nothing.

I believe there are blessings of grace when we accept the pain and offer it for lost souls. Our fight is difficult, but it has a glorious gift at the end......Paradise. I cannot imagine going into a fight with only the earthly gratifications as our only reward. For 11 years now we have fought on this battleground. Somehow in His infinite love, God picks us up just when we can't take another step. He manages to give a sick little boy the ability to smile and play when he wakes up just a little better than he was the day before.

There are brighter days ahead, but darker ones may also linger in the shadows. Garrett wants to live. He wants to run and play and forget about the pain, needles, hospital beds and nightmares. I want that for him. But if I want for too much, too soon, impatience can cause more disappointment. So we will continue to wake each day and call it a victory, rejoice in the little achievements and pray that as time goes by, this pony's steps will become lighter and the grass will get a little greener.

We may have three fights going on at one time, but we also have a Trinity of power who have already won this biggest battle of all. So this battle is nothing. I'm just thankful for the little victories right now. Every day that Garrett wakes up and feels better, it's as if he forgot any pain from yesterday. This enthusiasm strengthens us, and it gives him more strength to fight the beast another day, hopefully knocking it out of the park this time.

Be blessed,

JD