If you could have glimpsed into my heart these past few days the emotion you would have seen first and foremost was anger. I've been plain old mad at disease, specifically congenital heart disease. I'm mad that so many children are asked to endure difficult and complex surgeries; mad that medical science can't fix every child's heart; mad that Cutler passed away; mad that Maddie passed away; mad that the Mary Bridge PICU is FULL of heart babies.
I've been like Jesus' disciples in John chapter 9, trying to find the fairness in it all. In their lack of understanding, they ask Jesus, "Rabbi, who sinned, this man or his parents, that he was born blind?"
Jesus' response to his followers has stripped me of much of my anger. "'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.'"
How many times have I said how thankful I am that God is using Luke's unfolding story to draw our family and others to Him? How can I let my anger overwhelm my faith when God has given us this incredible purpose? Like I'm sure the blind man didn't love being blind, I don't think God expects me to love heart defects, but He does expect me to love Him. And that means choosing sight — seeing how God is working for good — instead of blind anger.
Although my anger is less potent, I am still incredibly sad for the families who have lost their children. But sadness can glorify God, too. It can make us all the more dependent on the True Comforter and all the more anxious to spend forever with Him in Heaven.
Thursday, December 31, 2009
Tuesday, December 29, 2009
Baby Cutler
Baby Cutler went to Heaven tonight after fighting hard for nine months against his congenital heart defect. I met Cutler's mom and dad through our local Mended Little Hearts group and got to visit with them several times over the last week when I was visiting little Tiernan at Mary Bridge. He was the most beautiful little boy; to call him a hero is an understatement.
Thank you, Lord, for the promise and hope of Heaven. And be near to the Smith family.
Thank you, Lord, for the promise and hope of Heaven. And be near to the Smith family.
Wednesday, December 16, 2009
Deck down the halls ...
Luke has learned the first verse of "Deck the Halls" (which he calls "Deck Down the Halls") and wanted to share it with the blog world (okay, his mama did. But you'll see why when you watch it).
Merry Christmas Everyone!
Tuesday, December 15, 2009
Details, details
When I posted on Friday, I was pretty focused on the switch-a-roo of the Fontan timeline and didn't get a chance to write down the details of the day. And I couldn't let the opportunity pass to share about how GREAT Luke did at the appointment - prayers were answered!
We got to the clinic a little early as I was hoping Luke could play a bit in the office and get comfortable before being called back. He may have gotten a bit too comfortable as before I knew it he was walking up and down the hallways saying, "I'm looking for Dr. Chris. Where's Dr. Chris?" The NWCHC staff is so gracious and let Luke walk back to "Dr. Chris's" office and say hello to him. I'm so glad Dr. Stefanelli has no other patients, at least not in Luke's world.
When we got back to the exam room, Luke began getting a little whiny about the EKG. "I'm not ready for the EKG. I don't want to do that." It was so interesting to me that that is what he chose to focus his anxiety on. We held off on that and started instead with weight, height and sat's. Everything Luke had to do, Thomas the Train would do first. Again, thank you nurses for accommodating us! We headed back to the room and Luke started in again on not wanting the EKG. It goes to show that it never hurts to ask — Dr. S. was fine with us skipping that dumb ol' EKG today.
It was the first appointment that I can remember where Luke not only had no fear of Dr. Stefanelli, but couldn't get enough of him. He continually asked if we could go find him. I think Dr. S. bumped up even more on Luke's fan-list when he showed him how to "ride" his swivel chair.
The echo was next on the docket and as much as I didn't want to pull out the mimi (pacifier), I did. And boy, it worked wonders. He laid back and watched Cars as calm as could be. Even getting those nasty aorta pictures way up on the neck didn't phase him. He didn't love the lower heart view which is right at that base of your sternum, but we managed for a short bit.
Dr. S. came in to discuss the echo and Luke kept trying to go out the door into the hall. After the third attempt at keeping him in the room, the nurses said, "Don't worry. We've got him!" Ah, being able to listen to the cardiologist without reining in a two-year old. What a luxury!
Like I posted before, Dr. S. was thrilled with Luke's echo: ASD wide open, Glenn site wide open, function great. He did note one thing he is watching, although he quickly clarified he wasn't categorizing it as a "worry", just a "watch". Luke has a bit of turbulence and "swerve" in his descending aorta and possibly some velocity pressure difference. It is not negatively impacting Luke, but it is something that could possibly need ballooning during his pre-Fontan cath. He said if Luke's heart was normal, he wouldn't think twice about intervening, but because we expect more from Luke's heart, he wants to give it every advantage he can.
I was a little nervous to see what Luke was up to (whatever it was, he was quiet!) and when we came out of the exam room, we see him sitting in the nurse's chair typing away on her keyboard. "I'm checking my email! I'm working!" he exclaims.
We'll be looking for his check in the mail.
God, doing his God thing, has begun to change my perspective on the timing of Luke's Fontan. Through His Word and other people, He has been bringing to mind the positives of waiting an extra year. Our prayer as a family has always been, and will continue to be, that Luke's Fontan is in His perfect time, not ours. Far and away the biggest positive to this turn of events is that it once again forces Rog and me to lift our eyes to the Lord and to cling to His sovereignty.
We got to the clinic a little early as I was hoping Luke could play a bit in the office and get comfortable before being called back. He may have gotten a bit too comfortable as before I knew it he was walking up and down the hallways saying, "I'm looking for Dr. Chris. Where's Dr. Chris?" The NWCHC staff is so gracious and let Luke walk back to "Dr. Chris's" office and say hello to him. I'm so glad Dr. Stefanelli has no other patients, at least not in Luke's world.
When we got back to the exam room, Luke began getting a little whiny about the EKG. "I'm not ready for the EKG. I don't want to do that." It was so interesting to me that that is what he chose to focus his anxiety on. We held off on that and started instead with weight, height and sat's. Everything Luke had to do, Thomas the Train would do first. Again, thank you nurses for accommodating us! We headed back to the room and Luke started in again on not wanting the EKG. It goes to show that it never hurts to ask — Dr. S. was fine with us skipping that dumb ol' EKG today.
It was the first appointment that I can remember where Luke not only had no fear of Dr. Stefanelli, but couldn't get enough of him. He continually asked if we could go find him. I think Dr. S. bumped up even more on Luke's fan-list when he showed him how to "ride" his swivel chair.
The echo was next on the docket and as much as I didn't want to pull out the mimi (pacifier), I did. And boy, it worked wonders. He laid back and watched Cars as calm as could be. Even getting those nasty aorta pictures way up on the neck didn't phase him. He didn't love the lower heart view which is right at that base of your sternum, but we managed for a short bit.
Dr. S. came in to discuss the echo and Luke kept trying to go out the door into the hall. After the third attempt at keeping him in the room, the nurses said, "Don't worry. We've got him!" Ah, being able to listen to the cardiologist without reining in a two-year old. What a luxury!
Like I posted before, Dr. S. was thrilled with Luke's echo: ASD wide open, Glenn site wide open, function great. He did note one thing he is watching, although he quickly clarified he wasn't categorizing it as a "worry", just a "watch". Luke has a bit of turbulence and "swerve" in his descending aorta and possibly some velocity pressure difference. It is not negatively impacting Luke, but it is something that could possibly need ballooning during his pre-Fontan cath. He said if Luke's heart was normal, he wouldn't think twice about intervening, but because we expect more from Luke's heart, he wants to give it every advantage he can.
I was a little nervous to see what Luke was up to (whatever it was, he was quiet!) and when we came out of the exam room, we see him sitting in the nurse's chair typing away on her keyboard. "I'm checking my email! I'm working!" he exclaims.
We'll be looking for his check in the mail.
God, doing his God thing, has begun to change my perspective on the timing of Luke's Fontan. Through His Word and other people, He has been bringing to mind the positives of waiting an extra year. Our prayer as a family has always been, and will continue to be, that Luke's Fontan is in His perfect time, not ours. Far and away the biggest positive to this turn of events is that it once again forces Rog and me to lift our eyes to the Lord and to cling to His sovereignty.
Friday, December 11, 2009
Cardiology appointment
God, the one and only —
I'll wait as long as he says.
Everything I hope for comes from him,
so why not?
He's solid rock under my feet,
breathing room for my soul,
An impregnable castle:
I'm set for life.
— Psalm 62:5, The Message
I tried so hard to keep the possibility in my brain that the Fontan might be pushed to the summer after next. I really did. But when Dr. Stefanelli said those words today, I was jarred. My thoughts went something like this: "But I don't want to wait another year. I want to be done with this stage." Thankfully, God immediately pointed out that this entire journey is not about me. (Did you notice how many "I's" were in that thought sequence? Yeah, me too). Based on my initial reaction, you'd think it was me undergoing open-heart surgery!
Dr. Stefanelli feels that with how well Luke is tolerating his current physiology coupled with the fact that he won't be quite 15 kilo's by this summer, he can't warrant pushing Dr. Cohen to do the Fontan on the earlier side. If Luke was showing him any signs of needing help with his heart function it would be a different story, but he's just not. His echo was fantastic, his sats are exactly where he'd like them at 86-87%, blood pressure normal, not to mention that he's growing and thriving and energetic.
But just because I can see the rationale for the new timing doesn't mean it's easy to swallow. We're going to have to sit with this one for a few days because at this moment I'm not even sure how to make that shift in my head and heart.
In the meantime I will do the following: Enjoy my son, give thanks for his health, and "wait as long as He says" because "Everything I hope for comes from Him."
Monday, December 7, 2009
Practicing and Praying
Our six-month follow-up with Dr. Stefanelli is this Friday, the 11th. Beyond the typical worries about Luke's heart health comes an additional worry this time: Will Luke cooperate during this long appointment? His doctor anxiety has sky-rocketed the past couple of months due to, I'm sure, three flu shots in two months. At his dietitian's appointment last month, you would have thought he was getting a tooth pulled — without Novocaine! — rather than getting weighed and measured.
In anticipation of Luke's anxiety during the appointment, Rog and I rigged up some supplies to play "EKG" and "Echo" with his stuffed friends. As you can see, Luke loves to put stickers (post-it notes) and EKG wire clips (clothes pins) on all his friends to check their heart rhythm.
"Hold still, Elmo," Luke instructs.
We also have an empty roll-on deodorant bottle that we use to perform echocardiograms on Luke's friends. We are hoping and praying that this doctor play will help him feel more comfortable when it's his turn!
We are also praying for another good report from Dr. S., that Luke's heart will be strong and healthy. Will you pray the same with us? Thank you!
I love that praying for Luke's physical heart so naturally leads to praying for his spiritual heart. Last night in the car, Luke and I were listening to the Selah Christmas CD. Song number six is titled "Joy" and it is by far Luke's favorite. In what I thought was a tender moment, I told Luke how I pray that he has the joy of the Lord in his heart his entire life; that he is constantly overwhelmed with how much God loves him. I think I said a few other things and when I was done I hear this from the backseat: "Mama? Where's Costco?"
My devout boy. I think he totally got my message.
In anticipation of Luke's anxiety during the appointment, Rog and I rigged up some supplies to play "EKG" and "Echo" with his stuffed friends. As you can see, Luke loves to put stickers (post-it notes) and EKG wire clips (clothes pins) on all his friends to check their heart rhythm.
We also have an empty roll-on deodorant bottle that we use to perform echocardiograms on Luke's friends. We are hoping and praying that this doctor play will help him feel more comfortable when it's his turn!
We are also praying for another good report from Dr. S., that Luke's heart will be strong and healthy. Will you pray the same with us? Thank you!
I love that praying for Luke's physical heart so naturally leads to praying for his spiritual heart. Last night in the car, Luke and I were listening to the Selah Christmas CD. Song number six is titled "Joy" and it is by far Luke's favorite. In what I thought was a tender moment, I told Luke how I pray that he has the joy of the Lord in his heart his entire life; that he is constantly overwhelmed with how much God loves him. I think I said a few other things and when I was done I hear this from the backseat: "Mama? Where's Costco?"
My devout boy. I think he totally got my message.
Saturday, December 5, 2009
Time to test this kid's IQ?
At not quite three, Luke can tell time.
Just this morning, he pointed to my digital bed-side clock and pronounced, "Mama! That says 'It's time for mommy to get up!'"
We are so proud.
And we will soon be looking into gifted programs.
Just this morning, he pointed to my digital bed-side clock and pronounced, "Mama! That says 'It's time for mommy to get up!'"
We are so proud.
And we will soon be looking into gifted programs.
Friday, December 4, 2009
From turkey to a half marathon with a lot of thankfulness in between
A run-down of our Thanksgiving weekend thankfulness ...
Thanksgiving Eve
1. Thankful that our family is officially H1N1 vaccinated! Luke received his booster today at Mary Bridge. By his account, "I didn't cry at all! I was so brave!" My account's a little different, but we'll go ahead and go with his.
Thanksgiving Day
1. Thankful for a delicious dinner with Nonna, Papa, Oma, Uncle Evan and Jerry. Good food and good family.
2. Thankful that my contribution to the meal was edible and thankful that my husband and son don't mind that I'm not much of a cook.
3. Thankful, so thankful, for this third Thanksgiving with our sweet, miracle boy.
Friday and Saturday
1. Thankful for our time together as a family in Leavenworth, WA. This is a small Bavarian village at the base of the Cascade Mountains, about 2 1/2 hours from our home. We checked into our hotel and walked over to the Kristkindlemarkt to make Christmas lanterns. This was a sweet little Christmas market but we didn't get much chance to walk around because of Luke's tuba phobia. I have no answers.
We ate dinner at an outdoor Bavarian grill and then walked around a bit, window shopping, purchasing a Dept. 56 village piece and getting hot cocoa at Starbucks. We spent quite a bit of time warming up in the bookstore (note to self, next time you visit a mountain village, remember to bring gloves), which ended up being Luke's favorite spot. He called it the "Leavenworth bookstore."
Even though there was no snow yet, it so much put us in the Christmas spirit. If no other Christmas traditions this year include large brass instruments, Christmas just might be Luke's favorite holiday.
2. Thankful that Luke was a much better car traveler than we expected! It helped that we had my mom's portable DVD player hooked to the back of the passenger seat.
3. Thankful for those good conversations that always seem to be sparked on car trips.
Sunday
1. Thankful for perfect marathon weather! The Seattle marathon and half marathon is always on the Sunday following Thanksgiving and more often than not will be a cold and rainy run. Not this year! 50 degrees at start time and dry.
2. Thankful for 13 miles to think about and pray for those heroes in my life: Luke, Alex, Tiernan, Maddie, Teagan, Owen, Elijah, Mia, Mirabel, Jared and others.
3. Thankful my body felt great for the 1 hour and 41 minutes of the race! I have past issues with hip and IT band problems, so I always feel especially grateful for those long runs that don't leave me hurting.
4. Thankful that I will see my dear friend Susanne again in Heaven. Susanne passed away in September of 2006, killed riding her bike to work. She and I did our first half marathon together back in 2000. Running the same streets all these years later of course brought her to mind. I miss you, Susanne.
5. Thankful my husband loves to put Christmas lights up on our house.
Phew! That is a lot of thankfulness jammed into four days. We hope you had a wonderful, joyful Thanksgiving as well.
Thanksgiving Eve
1. Thankful that our family is officially H1N1 vaccinated! Luke received his booster today at Mary Bridge. By his account, "I didn't cry at all! I was so brave!" My account's a little different, but we'll go ahead and go with his.
Thanksgiving Day
1. Thankful for a delicious dinner with Nonna, Papa, Oma, Uncle Evan and Jerry. Good food and good family.
2. Thankful that my contribution to the meal was edible and thankful that my husband and son don't mind that I'm not much of a cook.
3. Thankful, so thankful, for this third Thanksgiving with our sweet, miracle boy.
Friday and Saturday
1. Thankful for our time together as a family in Leavenworth, WA. This is a small Bavarian village at the base of the Cascade Mountains, about 2 1/2 hours from our home. We checked into our hotel and walked over to the Kristkindlemarkt to make Christmas lanterns. This was a sweet little Christmas market but we didn't get much chance to walk around because of Luke's tuba phobia. I have no answers.
We ate dinner at an outdoor Bavarian grill and then walked around a bit, window shopping, purchasing a Dept. 56 village piece and getting hot cocoa at Starbucks. We spent quite a bit of time warming up in the bookstore (note to self, next time you visit a mountain village, remember to bring gloves), which ended up being Luke's favorite spot. He called it the "Leavenworth bookstore."
Even though there was no snow yet, it so much put us in the Christmas spirit. If no other Christmas traditions this year include large brass instruments, Christmas just might be Luke's favorite holiday.
2. Thankful that Luke was a much better car traveler than we expected! It helped that we had my mom's portable DVD player hooked to the back of the passenger seat.
3. Thankful for those good conversations that always seem to be sparked on car trips.
Sunday
1. Thankful for perfect marathon weather! The Seattle marathon and half marathon is always on the Sunday following Thanksgiving and more often than not will be a cold and rainy run. Not this year! 50 degrees at start time and dry.
2. Thankful for 13 miles to think about and pray for those heroes in my life: Luke, Alex, Tiernan, Maddie, Teagan, Owen, Elijah, Mia, Mirabel, Jared and others.
3. Thankful my body felt great for the 1 hour and 41 minutes of the race! I have past issues with hip and IT band problems, so I always feel especially grateful for those long runs that don't leave me hurting.
4. Thankful that I will see my dear friend Susanne again in Heaven. Susanne passed away in September of 2006, killed riding her bike to work. She and I did our first half marathon together back in 2000. Running the same streets all these years later of course brought her to mind. I miss you, Susanne.
5. Thankful my husband loves to put Christmas lights up on our house.
Phew! That is a lot of thankfulness jammed into four days. We hope you had a wonderful, joyful Thanksgiving as well.
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