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Garrett is finally asleep. He's been pretty keyed up all day, worried about tomorrow. He called me at work today and his tone was different. He started to cry and said "daddy, I need you". Say no more. I cut out of work early and got to him by about suppertime. He ran to me and nearly squeezed the air out of me, and didn't let go for the longest time.
We grabbed our gloves and threw the ball around for a bit and then he just wanted me to hold him. We laid in the hammock for a long time and then he got a call from his beloved teacher who has been so incredible to him this year. Her timing was perfect, as were "auntie Barb" and a few professional bull riders who called to pray with him and offer encouragement. Those calls helped a lot.
We later retired to the basement to watch baseball highlights together, which is what we've always done at times like this. Baseball and rodeo have always been a part of our therapy. After a little while though he finally turned to me, told me he was so scared and started to cry. He held on to me, and I comforted him while he whimpered and said "daddy, I just want to go home". Kathy and I both just held him and tried to love the bad feelings away. We said our night prayers and in the midst of his overwhelming fears his prayers were not for himself, but for his cousin Levi, who is in stage 4 cancer. Levi is like a big brother to Garrett and also very, very sick.
It really pulls at my gut to see him go through this all over again, but these are the cards we're dealt right now. We prayed and talked for a long time about how much he is loved, and how so very many folks are praying for him. Everything is in God's hands, and there is no more perfect place for us to be.
By 10am we'll be checking in. By 1pm he'll be in surgery for the 24th time in his short 10 years. We will claim victory in the name of Jesus our Lord. Everything will be just fine. Our little gladiator is ready for battle.
JD
Thursday, May 20, 2010
Wednesday, May 19, 2010
May 20. 2010
Today, like many others lately, just couldn’t end without some minor catastrophe of sorts. Keeps us from getting bored, I guess. But like the others, big or small, we beat the odds.
Jessi had spent the afternoon with our wonderful friend and neighbor lady with whom she has grown a very beautiful relationship. Christina and her family have been a God-send to us during this part of the journey. She takes care of Jessi when I cannot be around and Jessi loves her dearly. They build projects, play with dogs, and conduct reproductive studies of the barn cat’s springtime ritual and groom horses. Today they decided to surprise daddy by cleaning the house for me. This was after Christina shadowed Jessi at her school “field day” activities and watched while Jessi won 5 ribbons.
When I arrived home, Jessi went out to check on the horses while we visited. Moments later, my Tinker (Jessi’s pet name) came limping and whimpering into the house. She had stepped on a nail in the feed bunk when feeding carrots to her horse. It was a pretty good wound, too. She was bleeding from the hole in her foot and quite scared. Christina sprung into action immediately, which allowed me to sneak out of earshot to call our pediatrician. Dr. Gilroy is the only children’s doctor I know today who allows me to call her at home. She saved Garrett’s life two years ago by discovering the enzyme imbalance that led to the discovery of his advanced coronary artery disease, and has stayed in close contact with us since. She is a gem! Well, she understood that Kathy and Garrett are in Denver and I didn’t know where the shot records could be kept. This angel of mercy did some research and called me back assuring me that Jessi’s Tetanus shot was up to date.
Needless to say, Jessi will have a sore foot for a few days, but after a good cleaning out and lots of soaking; I’m hoping it won’t get infected and need another trip to the hospital.
It’s amazing the thoughts that can race through one’s head at times like this. I have to be with my boy on Friday morning. He has his double biopsy surgery and I promised him I would be there as I always am, to wipe away that first tear, to be the last person he sees when he goes to sleep, and the first one he sees when he wakes up. But I couldn’t turn my back on my little Tinker, who is the most loving child I’ve ever known. If she needs to go to the doctor and required follow up because the wound was worse than we thought, it would compromise my commitments to Garrett. But somehow, I’d make it happen. I can promise you that!
The days lately have been filled with trying to stay busy enough at work to keep my mind from racing. My nights are rarely for sleep, and mostly for praying, thinking too much and hoping. Knowledge can be powerful, but then too; too much knowledge and not enough at the same time can be terrorizing. Garrett is feeling good, and that’s good enough right now. But I’ve also noticed a very subtle change in him when I was there last. That, coupled with the poor blood work and no change in the echo gets my mind racing. DANG IT! I’m the one who knows we have to ride this bronc one jump at a time. Yet my mind keeps sneaking in what I’ve learned recently about medical statistics regarding similar cases. I just have to know that Garrett has never followed the “statistical line” his entire life. I know that God has blessed me tremendously with the willpower to stay this fight and never quit. The doubts and fears that sneak in are hateful and even in the darkest moments of this fight, when I feel like I’m out of ammunition and have no place to hide, I have called out to my God for guidance and help. I’ve prayed until the world around me became no more. I was completely alone, if for only a moment, with my entire spirit, body and soul beseeching God Almighty to raise us from this battlefield to victory. Never once have I heard his voice, not as the voice of a human telling me what to do. But He has opened my eyes to see His mercy and love. I also know for certain that He has not abandoned or forsaken me. And He knows that for me and mine, we work for Him.
Friday late we will slowly begin to get answers to what seem like just so many questions. How much damage has been done? Has the rejection been caught, and killed, in time. Do the new lymphocytes rebuilding his immune system have and understand the new battle plan and recognize that Garrett’s heart is an ally and not an enemy? We will not weaken. We enter into this new mission completely convinced that God has given us everything we need to be successful for Him. This next week will be filled with emotion. One of great joy and hope, or one of being momentarily stunned and needing to gather our thoughts for the next phase of the battle. Either way, I will be with my family through the week. I will not leave them. We will accept the results, knowing there are but two or three options to continue the fight, and believing, as I do now, that we will be victorious.
When I know more. I will let you all know. Your prayers help sustain us, and for that I'm very grateful. I have a feeling though, that this tough little warrior will put on his coat of God’s armor as we pray prior to surgery, and he will emerge triumphant.
You give me your shield of victory,
And your right hand sustains me;
You stoop down to make me great." Psalm 18
JD
Jessi had spent the afternoon with our wonderful friend and neighbor lady with whom she has grown a very beautiful relationship. Christina and her family have been a God-send to us during this part of the journey. She takes care of Jessi when I cannot be around and Jessi loves her dearly. They build projects, play with dogs, and conduct reproductive studies of the barn cat’s springtime ritual and groom horses. Today they decided to surprise daddy by cleaning the house for me. This was after Christina shadowed Jessi at her school “field day” activities and watched while Jessi won 5 ribbons.
When I arrived home, Jessi went out to check on the horses while we visited. Moments later, my Tinker (Jessi’s pet name) came limping and whimpering into the house. She had stepped on a nail in the feed bunk when feeding carrots to her horse. It was a pretty good wound, too. She was bleeding from the hole in her foot and quite scared. Christina sprung into action immediately, which allowed me to sneak out of earshot to call our pediatrician. Dr. Gilroy is the only children’s doctor I know today who allows me to call her at home. She saved Garrett’s life two years ago by discovering the enzyme imbalance that led to the discovery of his advanced coronary artery disease, and has stayed in close contact with us since. She is a gem! Well, she understood that Kathy and Garrett are in Denver and I didn’t know where the shot records could be kept. This angel of mercy did some research and called me back assuring me that Jessi’s Tetanus shot was up to date.
Needless to say, Jessi will have a sore foot for a few days, but after a good cleaning out and lots of soaking; I’m hoping it won’t get infected and need another trip to the hospital.
It’s amazing the thoughts that can race through one’s head at times like this. I have to be with my boy on Friday morning. He has his double biopsy surgery and I promised him I would be there as I always am, to wipe away that first tear, to be the last person he sees when he goes to sleep, and the first one he sees when he wakes up. But I couldn’t turn my back on my little Tinker, who is the most loving child I’ve ever known. If she needs to go to the doctor and required follow up because the wound was worse than we thought, it would compromise my commitments to Garrett. But somehow, I’d make it happen. I can promise you that!
The days lately have been filled with trying to stay busy enough at work to keep my mind from racing. My nights are rarely for sleep, and mostly for praying, thinking too much and hoping. Knowledge can be powerful, but then too; too much knowledge and not enough at the same time can be terrorizing. Garrett is feeling good, and that’s good enough right now. But I’ve also noticed a very subtle change in him when I was there last. That, coupled with the poor blood work and no change in the echo gets my mind racing. DANG IT! I’m the one who knows we have to ride this bronc one jump at a time. Yet my mind keeps sneaking in what I’ve learned recently about medical statistics regarding similar cases. I just have to know that Garrett has never followed the “statistical line” his entire life. I know that God has blessed me tremendously with the willpower to stay this fight and never quit. The doubts and fears that sneak in are hateful and even in the darkest moments of this fight, when I feel like I’m out of ammunition and have no place to hide, I have called out to my God for guidance and help. I’ve prayed until the world around me became no more. I was completely alone, if for only a moment, with my entire spirit, body and soul beseeching God Almighty to raise us from this battlefield to victory. Never once have I heard his voice, not as the voice of a human telling me what to do. But He has opened my eyes to see His mercy and love. I also know for certain that He has not abandoned or forsaken me. And He knows that for me and mine, we work for Him.
Friday late we will slowly begin to get answers to what seem like just so many questions. How much damage has been done? Has the rejection been caught, and killed, in time. Do the new lymphocytes rebuilding his immune system have and understand the new battle plan and recognize that Garrett’s heart is an ally and not an enemy? We will not weaken. We enter into this new mission completely convinced that God has given us everything we need to be successful for Him. This next week will be filled with emotion. One of great joy and hope, or one of being momentarily stunned and needing to gather our thoughts for the next phase of the battle. Either way, I will be with my family through the week. I will not leave them. We will accept the results, knowing there are but two or three options to continue the fight, and believing, as I do now, that we will be victorious.
When I know more. I will let you all know. Your prayers help sustain us, and for that I'm very grateful. I have a feeling though, that this tough little warrior will put on his coat of God’s armor as we pray prior to surgery, and he will emerge triumphant.
You give me your shield of victory,
And your right hand sustains me;
You stoop down to make me great." Psalm 18
JD
Monday, May 17, 2010
May 17, 2010
Jessi and I got to spend a couple days with mommy and Garrett this weekend and are now back, getting ready for work and school again. It was a good few days, though, but just too short. We took a little walk at a nearby pond and just enjoyed being together while he's feeling good. He had some pretty wicked nightmares again this weekend, but we worked through them by watching baseball or rodeo like we always have until he could fall back asleep. As the week progressed, he's bound to get more anxious about the procedure/biopsy surgery. I'd sure be grateful for any extra prayers you have laying around for him, Jessi and Kathy. This will be a long week and weekend until we get the results early next week. Garrett made me promise at least 4 times that I'd be back with him in time for surgery.
His last checkup before surgery was this morning. Everything still looks pretty good. He's lost a little weight, but not much. Although there was no change in his echo, it's good because it didn't get worse. His bloodwork is still all over the map and while we want to know why, we're hoping it's just because his body is trying to heal. When they run the double biopsy this week, they'll get a real good look at this kidney function and we'll know more.
I tried to break up the monotony this weekend by building the kids a roping toy from PVC tubing. It'll give him something to do in the backyard. But I don't think it was near the hit that his other surprises were. He got a box full of goodies from some great folks, including a bunch more baseball cards (he loves those), books, signed Boston BBall and even a rugby ball from a couple in Australia! The love this little guy has garnered is really amazing. Folks are so kind.
When we know more, I'll be sure to post something. I've added a picture tonight of the bracelets his little friends Chris and Joe designed. I'm told they are a big hit in the area and really make Garrett feel "special" to know folks are wearing them for him until he can come home. He really has some tremendous friends, all good soldiers of the Cross, too.
While you're taking time to pray this week, please ask God to comfort the family of Dale Goodell. Dale was a good man and friend of mine whom God called home early this morning. He and Garrett shared similarities, too, as Dale was a bone marrow transplant recipient. He finally lost a lengthy battle that he fought so well for so long. He's at peace now, but those of us left behind will miss him dearly.
This week is a big one. There will be lots of big prayers for the King of miracles to heal a little cowboy so he can come back home with his family. The victory is His, and we ask for understanding and grace as we try to accept His will.
God bless,
JD
His last checkup before surgery was this morning. Everything still looks pretty good. He's lost a little weight, but not much. Although there was no change in his echo, it's good because it didn't get worse. His bloodwork is still all over the map and while we want to know why, we're hoping it's just because his body is trying to heal. When they run the double biopsy this week, they'll get a real good look at this kidney function and we'll know more.
I tried to break up the monotony this weekend by building the kids a roping toy from PVC tubing. It'll give him something to do in the backyard. But I don't think it was near the hit that his other surprises were. He got a box full of goodies from some great folks, including a bunch more baseball cards (he loves those), books, signed Boston BBall and even a rugby ball from a couple in Australia! The love this little guy has garnered is really amazing. Folks are so kind.
When we know more, I'll be sure to post something. I've added a picture tonight of the bracelets his little friends Chris and Joe designed. I'm told they are a big hit in the area and really make Garrett feel "special" to know folks are wearing them for him until he can come home. He really has some tremendous friends, all good soldiers of the Cross, too.
While you're taking time to pray this week, please ask God to comfort the family of Dale Goodell. Dale was a good man and friend of mine whom God called home early this morning. He and Garrett shared similarities, too, as Dale was a bone marrow transplant recipient. He finally lost a lengthy battle that he fought so well for so long. He's at peace now, but those of us left behind will miss him dearly.
This week is a big one. There will be lots of big prayers for the King of miracles to heal a little cowboy so he can come back home with his family. The victory is His, and we ask for understanding and grace as we try to accept His will.
God bless,
JD
Thursday, May 13, 2010
May 13, 2010
“Dinger” had another checkup today and his heart rate was down to 116. That is the lowest it's been yet. We're not yet to our goal the 90's, but we're sure a whole lot closer than the 150's a few weeks ago. Kathy said that there was no change in his echo this time, but at least it didn't get worse, and the gallop in his heart seemed a little softer today. The waiting game continues, but we're only days away from having finally some answers to so very many questions.
He sounded good on the phone today, if maybe a little apprehensive about his surgery next week. While still missing his friends and animals and just wanting to come home, he's in pretty good spirits. I told him that I’d take him to a Rockies game the week after, when he’s ok to go. He thought that was just pretty okay! That boy love’s his Rockies. He got the nickname “Dinger” from his team mates a few years ago because he was hitting so many home runs, and it stuck because “Dinger” is also the nickname of the Rockies mascot.
I talked to Garrett for a while today about the biopsy. I could tell he needed to be placed at ease that everything will be ok. I reassured him that I would be with him next week, just as I always have. We have a deal and it’ll always be that way. I’ll carry him in and lay him on the table, kiss him and tell him I love him, wipe that first tear from his cheek and stay by his side while they give him the sedative. Only once he’s asleep will I leave him. That’s my promise to him. I’ll be the last face he sees before he sleeps and the first face he sees when he wakes up.
Dinger continues to have night terrors/bad dreams in which he reacts violently in his sleep, screaming out incoherently most of the time. Sometimes you can understand him asking "please make it go away". You can’t wake him. We’re so grateful that for the most part, he doesn’t seem to remember the dreams when he wakes up in the morning. Tonight Kathy said she had put a small mattress on the floor and was letting Garrett sleep on the big bed next to her. She said he “needs so much room” when he starts kicking around. Isn’t that just a mother’s love to give up her bed to her baby boy? She is something so special. Someday I hope to give her a weekend at the Broadmoor with a big, soft bed where she can just stretch out and be pampered.
I spent a lot of time last night thinking back two years ago when Garrett and I watched a news story about little Nicholas who was terribly hurt in a farm accident at his home near Ft. Collins. We were about two weeks out from Garrett’s heart transplant, and when we saw the story, Garrett wanted to do something for Nicholas. The next day after his checkup, we dropped some gifts off at the ICU where Nicholas was clinging to life. Before we left the hospital, Nicholas’ folks found us and wanted us to meet Nicholas. I remember going into his room and seeing this beautiful little boy fighting for life, plugged into so many machines….much like Garrett was only several days earlier. We all laid hands on Nicholas, held hands and prayed. There was such a sense of divine compassion and love in that room. It was truly a very spiritual experience.
We stayed in close contact with Nicholas’ family through many days, but God called him Home. We were impacted deeply by their loss. I didn’t understand it then, and still don’t. Kathy and I attended the funeral and spent time with this family we hardly knew, but yet knew so well. At their request, I helped bury their son in the cowboy tradition of helping your neighbor bury their lost family members. With each shovel full of dirt, my heart weighed so heavily for Nick’s mom and dad. They shared so much in common with us and the scene could easily have been turned around. Nick was only 6 years old. They called us the day Nicholas died and told us that because of Garrett, they decided to donate Nicholas’ organs. A little girl in the mid-west received his heart. Beauty in the midst of tragedy and another family gets another chance because of selfless love.
The images of that time are indelibly branded into my memory. I’ve been given so many extra opportunities with my son and I will never take them for granted. Life is so very precious, and the life of a child is the most precious of all. Yesterday, Jessi received a year-end award at her school for being the “Most Respectful Student” in her class. I’m so happy for her and the pride I feel is immeasurable. We try hard, Kathy and I, to raise our children the way God wants us to. The bible tells us to “train up a child in the way he should go: and when he is old, he will not depart from it”. I know Nick’s folks believe the same way we do. For reasons known only to Him, God has chosen to keep Garrett here. As a daddy, I am so very blessed and I’m more committed each day to serve our Lord faithfully and tell this story of His great love.
Tonight my prayers are for all of you. Just like the great friends I got to see today at different times, without your prayers and friendship our journey would be so much more difficult. We’re not unique in this situation, as there are so many families like Nick’s out there who are fighting to keep their babies for another day. We’re blessed by all of you. Thank you. You’ll never know how much your prayers are felt and your kindness helps carry our load. God bless you.
JD
He sounded good on the phone today, if maybe a little apprehensive about his surgery next week. While still missing his friends and animals and just wanting to come home, he's in pretty good spirits. I told him that I’d take him to a Rockies game the week after, when he’s ok to go. He thought that was just pretty okay! That boy love’s his Rockies. He got the nickname “Dinger” from his team mates a few years ago because he was hitting so many home runs, and it stuck because “Dinger” is also the nickname of the Rockies mascot.
I talked to Garrett for a while today about the biopsy. I could tell he needed to be placed at ease that everything will be ok. I reassured him that I would be with him next week, just as I always have. We have a deal and it’ll always be that way. I’ll carry him in and lay him on the table, kiss him and tell him I love him, wipe that first tear from his cheek and stay by his side while they give him the sedative. Only once he’s asleep will I leave him. That’s my promise to him. I’ll be the last face he sees before he sleeps and the first face he sees when he wakes up.
Dinger continues to have night terrors/bad dreams in which he reacts violently in his sleep, screaming out incoherently most of the time. Sometimes you can understand him asking "please make it go away". You can’t wake him. We’re so grateful that for the most part, he doesn’t seem to remember the dreams when he wakes up in the morning. Tonight Kathy said she had put a small mattress on the floor and was letting Garrett sleep on the big bed next to her. She said he “needs so much room” when he starts kicking around. Isn’t that just a mother’s love to give up her bed to her baby boy? She is something so special. Someday I hope to give her a weekend at the Broadmoor with a big, soft bed where she can just stretch out and be pampered.
I spent a lot of time last night thinking back two years ago when Garrett and I watched a news story about little Nicholas who was terribly hurt in a farm accident at his home near Ft. Collins. We were about two weeks out from Garrett’s heart transplant, and when we saw the story, Garrett wanted to do something for Nicholas. The next day after his checkup, we dropped some gifts off at the ICU where Nicholas was clinging to life. Before we left the hospital, Nicholas’ folks found us and wanted us to meet Nicholas. I remember going into his room and seeing this beautiful little boy fighting for life, plugged into so many machines….much like Garrett was only several days earlier. We all laid hands on Nicholas, held hands and prayed. There was such a sense of divine compassion and love in that room. It was truly a very spiritual experience.
We stayed in close contact with Nicholas’ family through many days, but God called him Home. We were impacted deeply by their loss. I didn’t understand it then, and still don’t. Kathy and I attended the funeral and spent time with this family we hardly knew, but yet knew so well. At their request, I helped bury their son in the cowboy tradition of helping your neighbor bury their lost family members. With each shovel full of dirt, my heart weighed so heavily for Nick’s mom and dad. They shared so much in common with us and the scene could easily have been turned around. Nick was only 6 years old. They called us the day Nicholas died and told us that because of Garrett, they decided to donate Nicholas’ organs. A little girl in the mid-west received his heart. Beauty in the midst of tragedy and another family gets another chance because of selfless love.
The images of that time are indelibly branded into my memory. I’ve been given so many extra opportunities with my son and I will never take them for granted. Life is so very precious, and the life of a child is the most precious of all. Yesterday, Jessi received a year-end award at her school for being the “Most Respectful Student” in her class. I’m so happy for her and the pride I feel is immeasurable. We try hard, Kathy and I, to raise our children the way God wants us to. The bible tells us to “train up a child in the way he should go: and when he is old, he will not depart from it”. I know Nick’s folks believe the same way we do. For reasons known only to Him, God has chosen to keep Garrett here. As a daddy, I am so very blessed and I’m more committed each day to serve our Lord faithfully and tell this story of His great love.
Tonight my prayers are for all of you. Just like the great friends I got to see today at different times, without your prayers and friendship our journey would be so much more difficult. We’re not unique in this situation, as there are so many families like Nick’s out there who are fighting to keep their babies for another day. We’re blessed by all of you. Thank you. You’ll never know how much your prayers are felt and your kindness helps carry our load. God bless you.
JD
Tuesday, May 11, 2010
May 11, 2010
Jessi and I are back tonight and as luck would have it, we forgot her "binky" in Denver. In years past this would have been a tragic event requiring a full-blown tactical call out, however she is maturing and was able to settle in tonight next to daddy with just a stuffed cow.
Garrett continues to have good days and we feel so very blessed to see him happy. Kathy and I even think this little distraction has changed his personality a bit. He is less crabby with little inconveniences and seems to take things with a much more "water of a duck's back" kind of response. I'm so proud of him. He just doesn't go through life with his lip stuck out feeling sorry for himself.
The biggest daily bump right now is sleep, or lack-there-of. The last few nights I've had to wake Garrett to stop his nightmares. He's really having a lot of them again and they always have to do with the hospital. They’ll get more intense the closer to the biopsy we get. I know they don't hurt him physically, but it breaks my heart to watch and listen as he goes through terrible dreams, calling out, crying and kicking the covers off. Little kids should be dreaming about playing baseball and other such fun things. He had just gotten to where he was starting to go to sleep easily and rest peacefully. I hope and pray we can overcome this again.
After spending the best part of the morning with Kathy going over a new crop of hospital bills and trying to figure out how to rig a lottery win or sell my body to science :-), we settled in and spent a few more hours together, just the family, before Jessi and I had to leave again. I know it’s not that big of a deal because lots of families have to spend time apart. But this family is mine and I think they’ve had their share of uneasy separations.
Driving home tonight, Jessi fell fast asleep in the back seat of the pickup and I got to praying and thinking, as I often do on these trips, about the past 10+ years. Just for giggles, I put pencil to paper in my head and figure we’ve driven more than 72,000 miles back and forth. How blessed are we that we’ve never had a wreck? Oh, in that first year or so when I was driving to and from work and our little apartment in Denver every night, I woke up in the ditch a time or two, but my guardian angels always kept the rubber on the asphalt. We’ve been faced with, and beaten, all the odds time and time again. My little tribe of warriors are pretty daggone hardy and God continues to smile on us every mile of the journey.
As Jessi and I said our prayers tonight, I remembered what Jesus told us in Matthew…”Whenever two or more are gathered in my name, there am I in the midst of them”. As parents, we’re called to lead our children to holiness and the only way to do that, to sanctify this mission as I see it, is to keep Christ in our daily walk together. I’m grateful that He has allowed me to walk this trail with my family, with Him keeping us safe and knocking the edge off of our fears. I honestly don’t know how anyone can take on these challenges without Him.
JD
Garrett continues to have good days and we feel so very blessed to see him happy. Kathy and I even think this little distraction has changed his personality a bit. He is less crabby with little inconveniences and seems to take things with a much more "water of a duck's back" kind of response. I'm so proud of him. He just doesn't go through life with his lip stuck out feeling sorry for himself.
The biggest daily bump right now is sleep, or lack-there-of. The last few nights I've had to wake Garrett to stop his nightmares. He's really having a lot of them again and they always have to do with the hospital. They’ll get more intense the closer to the biopsy we get. I know they don't hurt him physically, but it breaks my heart to watch and listen as he goes through terrible dreams, calling out, crying and kicking the covers off. Little kids should be dreaming about playing baseball and other such fun things. He had just gotten to where he was starting to go to sleep easily and rest peacefully. I hope and pray we can overcome this again.
After spending the best part of the morning with Kathy going over a new crop of hospital bills and trying to figure out how to rig a lottery win or sell my body to science :-), we settled in and spent a few more hours together, just the family, before Jessi and I had to leave again. I know it’s not that big of a deal because lots of families have to spend time apart. But this family is mine and I think they’ve had their share of uneasy separations.
Driving home tonight, Jessi fell fast asleep in the back seat of the pickup and I got to praying and thinking, as I often do on these trips, about the past 10+ years. Just for giggles, I put pencil to paper in my head and figure we’ve driven more than 72,000 miles back and forth. How blessed are we that we’ve never had a wreck? Oh, in that first year or so when I was driving to and from work and our little apartment in Denver every night, I woke up in the ditch a time or two, but my guardian angels always kept the rubber on the asphalt. We’ve been faced with, and beaten, all the odds time and time again. My little tribe of warriors are pretty daggone hardy and God continues to smile on us every mile of the journey.
As Jessi and I said our prayers tonight, I remembered what Jesus told us in Matthew…”Whenever two or more are gathered in my name, there am I in the midst of them”. As parents, we’re called to lead our children to holiness and the only way to do that, to sanctify this mission as I see it, is to keep Christ in our daily walk together. I’m grateful that He has allowed me to walk this trail with my family, with Him keeping us safe and knocking the edge off of our fears. I honestly don’t know how anyone can take on these challenges without Him.
JD
Monday, May 10, 2010
May 10, 2010
Garrett had a really good day again! We spent several hours at the hospital early then had the obligatory hours-long wait for a call late this afternoon to give us the results of his tests. Everything is just where it should be at this point and his echo again showed some improvement. The significance of him getting stronger right now will be telling when we get to biopsy.
During the first few days in this chapter of the journey, Garrett’s heart beat so hard it literally would rock his whole body side to side. Nurses didn’t need to hold his wrist to check his pulse; they could watch the arteries pulse in his neck. Things are certainly a lot better now. As I lay next to Garrett tonight, I can still feel his heartbeat, but it’s not nearly as hard or animated.
Normally on Mondays after the appointment, I head back “home” so I can get ready for work again. But this time was different. Last week when I left, Garrett was upset and told me “daddy, you always seem to leave when I’m feeling good”. That comment stayed with me all week and I decided that if he was still feeling good after his appointment, I would stay one more day just to be with him and celebrate. Fortunately my bosses have allowed me the flexibility to do just that and I have a great team of folks who support me. So tonight we were in our basement hide-a-way and had a “family night” for the first time since he got sick.
We decided to watch a movie and picked “Radio”. While the story doesn’t mimic our journey, it did drive a point home. In the movie, Coach Jones’ commitment to an exceptional young man drove him to choose between the job he loved and a boy who needed him. As you can imagine, he chose to mentor Radio and walk away from coaching full-time.
While it’s not realistic in my world, it reaffirmed my desire and commitment to take these extra days once in a while and enjoy Garrett, mentoring him as a daddy should, when he’s not feeling so sick and not having to leave him as soon as he is “feeling good”.
Too often in our worlds we confuse “needs” and “wants”. Because of the hand that’s been dealt, we have spent too much time living apart in different towns over the years. The disruption in daily life seems almost normal in a way. We spend our time living out of a suitcase, trying to find continuity as a family unit while surrounded by others; trying to keep up with bills here when all the mail goes there; trying to find 10 minutes to be a married couple and have a conversation when we don’t have anywhere we can call “our own space” to do so; and all the while trying to build a sense of normalcy that every family unit needs.
I’m not going to pull a Coach Jones and quit my job, but I am trying to keep my “needs” and “wants” lined out if possible. Right now, my children need me to be close, Kathy needs her husband to lean on and I need to be with them to keep my sanity.
Because of Garrett’s health problems, I’ve spent more time with my kids than most dads get to at this stage in their life. Granted the time hasn’t always been fun time, but any time with your kids is time well spent. Before he fell asleep tonight Garrett said “daddy, I can’t wait until we can go home”. Well I got news for him, “home” is where the heart is, and mine is right here.
Have a very blessed day.
JD
During the first few days in this chapter of the journey, Garrett’s heart beat so hard it literally would rock his whole body side to side. Nurses didn’t need to hold his wrist to check his pulse; they could watch the arteries pulse in his neck. Things are certainly a lot better now. As I lay next to Garrett tonight, I can still feel his heartbeat, but it’s not nearly as hard or animated.
Normally on Mondays after the appointment, I head back “home” so I can get ready for work again. But this time was different. Last week when I left, Garrett was upset and told me “daddy, you always seem to leave when I’m feeling good”. That comment stayed with me all week and I decided that if he was still feeling good after his appointment, I would stay one more day just to be with him and celebrate. Fortunately my bosses have allowed me the flexibility to do just that and I have a great team of folks who support me. So tonight we were in our basement hide-a-way and had a “family night” for the first time since he got sick.
We decided to watch a movie and picked “Radio”. While the story doesn’t mimic our journey, it did drive a point home. In the movie, Coach Jones’ commitment to an exceptional young man drove him to choose between the job he loved and a boy who needed him. As you can imagine, he chose to mentor Radio and walk away from coaching full-time.
While it’s not realistic in my world, it reaffirmed my desire and commitment to take these extra days once in a while and enjoy Garrett, mentoring him as a daddy should, when he’s not feeling so sick and not having to leave him as soon as he is “feeling good”.
Too often in our worlds we confuse “needs” and “wants”. Because of the hand that’s been dealt, we have spent too much time living apart in different towns over the years. The disruption in daily life seems almost normal in a way. We spend our time living out of a suitcase, trying to find continuity as a family unit while surrounded by others; trying to keep up with bills here when all the mail goes there; trying to find 10 minutes to be a married couple and have a conversation when we don’t have anywhere we can call “our own space” to do so; and all the while trying to build a sense of normalcy that every family unit needs.
I’m not going to pull a Coach Jones and quit my job, but I am trying to keep my “needs” and “wants” lined out if possible. Right now, my children need me to be close, Kathy needs her husband to lean on and I need to be with them to keep my sanity.
Because of Garrett’s health problems, I’ve spent more time with my kids than most dads get to at this stage in their life. Granted the time hasn’t always been fun time, but any time with your kids is time well spent. Before he fell asleep tonight Garrett said “daddy, I can’t wait until we can go home”. Well I got news for him, “home” is where the heart is, and mine is right here.
Have a very blessed day.
JD
Sunday, May 9, 2010
Mother's Day 2010
Happy Mother's Day!
I'm dedicating this entry to all mothers, with particular attention to one very special mother, of one very special little boy. A few weeks ago, Garrett asked "mommy" what she wanted for Mother's Day. With her voice cracking, she told him that all she wanted was for him to feel better. She got her wish. Garrett is really feeling good compared to where he was just a short time ago. He’s had several good days in a row now and we’re praying for many more to come.
After spending some days away from the family, I'm finally back in the arms of those who bring me sunshine. Garrett and Jessi curled up with me tonight after playing all evening and getting everything out of the day that they could. Just before he fell asleep, Garrett tucked in close and said he's really praying that his biopsy with score a "zero". With just a couple weeks to go before the procedure, he's starting to worry and wonder. But he's been steadily feeling stronger and looking better, too, and these signs are so important especially in light of the gallop that has returned.
The biopsy will tell us so much more than we can know without it. Sometimes a recipient can be asymptomatic until a rejection is out of control. That's why the frequent check ups now. What we will soon know will be revealed by a standardized 0-5 scale for interpreting the biopsy results from Garrett's transplanted heart tissue. Acute rejection is a common problem after heart transplantation, particularly early after transplantation, but this far out it causes more concern. Most cases are due to cellular rejection but antibody-mediated rejection can happen and is a less well understood, less easily diagnosed and potentially more dangerous. The better he feels, the stronger he gets, the better he can fight any problems that might crop up. For now though, he's feeling great and that's such a positive sign. And it's the perfect Mother's day gift for Kathy. She’s a momma who deserves a beautiful day with her healthy, happy, beautiful children.
I think God made spring just for mothers. He chose a very blessed and special mother to give birth to our Savior, when He could have chosen any method to put Christ among us. God knew that we needed that incredible mother connection to bring His whole Light to bare. That birth was the beginning of our salvation. Jesus' birth made it possible for Him to walk among us and complete the mission that would make everything new again. This event is celebrated every spring with Easter, when the flowers bloom, all the animals bare their young and new life abounds. None of it is possible without mothers. So at a time when we feel better because the winter winds are gone and the warm sun has returned, we celebrate a time for all mothers. They are forever connected with new life.
In Garrett's case, his momma knew before he was born that he was sick. His birthday arrived with a combination of joy, pain and terror. The next 10 years have been filled with challenges and heartache, the fear of the unknown future, and the tremendous joys that only a mother can know. She's had a baby girl who was born 2 1/2 months early and spent the first month of her life in the hospital. She never got to bring a baby home from the hospital the “normal” way, but she’s never felt sorry for herself. She’s always just been so grateful for the incredible gift of giving life that God allows only mothers to know.
Your momma has stayed by your side when you’re sick. She’s kissed your “owies”, rocked you, sang to you, read to you, washed your clothes, tucked you in to bed, cooked for you, comforted you when you had your first broken heart, packed you to countless games, rodeos, parties, parades, school events, church outings and doctor visits. All she’s ever asked is for your love and respect. Oh, she’s asked you to clean your room and help with the dishes once in a while, but she’d have given you her last dime, her last scrap of food and her only jacket. She’d give you her very life, because she loves you that much.
Give her a hug today. She doesn’t need flowers, cards, gifts or a once-a-year house cleaning. Those are nice, but she really just wants your unconditional love, because that’s what she’s given you…..all these years.
Happy Mother’s Day. Every day should be so special.
JD
I'm dedicating this entry to all mothers, with particular attention to one very special mother, of one very special little boy. A few weeks ago, Garrett asked "mommy" what she wanted for Mother's Day. With her voice cracking, she told him that all she wanted was for him to feel better. She got her wish. Garrett is really feeling good compared to where he was just a short time ago. He’s had several good days in a row now and we’re praying for many more to come.
After spending some days away from the family, I'm finally back in the arms of those who bring me sunshine. Garrett and Jessi curled up with me tonight after playing all evening and getting everything out of the day that they could. Just before he fell asleep, Garrett tucked in close and said he's really praying that his biopsy with score a "zero". With just a couple weeks to go before the procedure, he's starting to worry and wonder. But he's been steadily feeling stronger and looking better, too, and these signs are so important especially in light of the gallop that has returned.
The biopsy will tell us so much more than we can know without it. Sometimes a recipient can be asymptomatic until a rejection is out of control. That's why the frequent check ups now. What we will soon know will be revealed by a standardized 0-5 scale for interpreting the biopsy results from Garrett's transplanted heart tissue. Acute rejection is a common problem after heart transplantation, particularly early after transplantation, but this far out it causes more concern. Most cases are due to cellular rejection but antibody-mediated rejection can happen and is a less well understood, less easily diagnosed and potentially more dangerous. The better he feels, the stronger he gets, the better he can fight any problems that might crop up. For now though, he's feeling great and that's such a positive sign. And it's the perfect Mother's day gift for Kathy. She’s a momma who deserves a beautiful day with her healthy, happy, beautiful children.
I think God made spring just for mothers. He chose a very blessed and special mother to give birth to our Savior, when He could have chosen any method to put Christ among us. God knew that we needed that incredible mother connection to bring His whole Light to bare. That birth was the beginning of our salvation. Jesus' birth made it possible for Him to walk among us and complete the mission that would make everything new again. This event is celebrated every spring with Easter, when the flowers bloom, all the animals bare their young and new life abounds. None of it is possible without mothers. So at a time when we feel better because the winter winds are gone and the warm sun has returned, we celebrate a time for all mothers. They are forever connected with new life.
In Garrett's case, his momma knew before he was born that he was sick. His birthday arrived with a combination of joy, pain and terror. The next 10 years have been filled with challenges and heartache, the fear of the unknown future, and the tremendous joys that only a mother can know. She's had a baby girl who was born 2 1/2 months early and spent the first month of her life in the hospital. She never got to bring a baby home from the hospital the “normal” way, but she’s never felt sorry for herself. She’s always just been so grateful for the incredible gift of giving life that God allows only mothers to know.
Your momma has stayed by your side when you’re sick. She’s kissed your “owies”, rocked you, sang to you, read to you, washed your clothes, tucked you in to bed, cooked for you, comforted you when you had your first broken heart, packed you to countless games, rodeos, parties, parades, school events, church outings and doctor visits. All she’s ever asked is for your love and respect. Oh, she’s asked you to clean your room and help with the dishes once in a while, but she’d have given you her last dime, her last scrap of food and her only jacket. She’d give you her very life, because she loves you that much.
Give her a hug today. She doesn’t need flowers, cards, gifts or a once-a-year house cleaning. Those are nice, but she really just wants your unconditional love, because that’s what she’s given you…..all these years.
Happy Mother’s Day. Every day should be so special.
JD
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