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

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

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

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