Thursday, September 23, 2010

Flu shot ... finally

Our local mall had a vaccination clinic on Saturday, so Roger and I broke the news to Luke that today was the day. We tried to sell it by telling him he only had to get one this year instead of three like last year, but his panic overrode his math skills.

Luke re-enacting his whine.

We headed to the mall, Luke tearful and whiny on the way there, only to be told that we would need to show his vaccination records. Since I don't tend to carry that in my purse, we made our way home to get it. Then we got back in the car for another 10 minutes of whining and fretting (by Luke, of course!).

With vaccination record in hand, I added Luke's name to the list and was told it could take up to an hour for his name to be called. Good thing there is a cool play area right by the mobile clinic. About 25 minutes into our wait, a nurse steps out and announces that they have run out of the pediatric doses of the flu vaccine. But not to worry, they have plenty of doses for adults. Sigh.

I tell Luke it's time to go, that they've run out of flu shots today and we'll have to get ours a different day. He looks at me with a kind of appreciation I've never seen from him and says softly, "Oh Mama, thank you."

His tone today was a little different (and I've honestly never seen this superhuman strength he exhibited as he held his pants up), but I am so glad it's done. Flu? Don't come near our house!

Tuesday, September 14, 2010

Paper Lukey

We had our first family "homework" assignment this week. We were to trace an outline of Luke's body on white butcher paper, cut it out and decorate it however we liked. Here's Luke holding "Paper Lukey":

Today was day three of preschool and it was a little rougher than the other two. I think for three reasons: (love how I over-analyze everything.) 1. Luke's still not feeling 100% from his cold, 2. The novelty of going to school is starting to wear off (there were lots of tears today among lots of kiddos!), and 3. There was a table where the kids were to put their paper people and Luke was sorely disappointed he couldn't keep holding it.

Even though there were tears when I left, they must have stopped quickly. When I asked Jill, the office coordinator, to check on him five minutes later, he was doing great.

When I picked Luke up, as we were driving away, I told him how proud I was of him for having a great day even though he was a little sad at first. I told him that I loved how he turned his attitude around and chose to have fun with his teacher and friends. I think I said a couple other things when Luke chimed in, "Mom, can we get lunch?" Yep, another lesson taken to heart.

This little story has nothing to do with school, but it was too funny to not add:

We were walking in to the library this afternoon and there was an older man standing near the door, smoking a cigarette. I didn't even know Luke noticed, but he asked me, "Mom, when I get older, when I'm 11, can I put a candle in my mouth?"

Saturday, September 11, 2010


It has been subtle and I wasn't even really looking or asking for it, but God has been doing what He is known for doing: restoring what was broken.
"Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up."
—Psalm 71:20

What does this look like for me? It doesn't mean that those hard, cling-to-each-other hard, times will ever not be hard. It doesn't mean that the memories of Luke's diagnosis, when we were told he had a 50% chance of also having Down Syndrome, or the night he aspirated and needed a brain scan, or the three times we handed him over to the surgeon are erased. No, they will never be gone, but they are less painful to visit.

It means that for the first time, I am more confident than fearful that Luke will come through just fine this current cold he has (I knew he'd get more sick this year as a preschooler, but the first week? Really?) and that the benefit of him experiencing preschool outweighs my fear of him getting sick.

It means that I am truly okay with not knowing when his Fontan will take place.

It doesn't mean that I don't think about his weight, his color, his energy-level, but it does mean that more often than not I am in the moment with him, just enjoying life with him.

It means holding my friends' heart healthy babies with a heart full much more of joy than grief over our family's circumstances. To be honest, it has been hard for me to enter into my friends' joy over their new bundles, the sting of what we didn't experience overshadowing the beauty of new life. But lately, slowly, I have felt different. And I'm so thankful to God for restoring these parts of me when I wasn't even looking.

I am big on allowing yourself to feel what you're feeling. I have met the sweetest new heart mom who is understandably shaken by her son's recent diagnosis with a congenital heart defect. This baby boy was diagnosed at two days old with double inlet left ventricle (like Luke), has had his PA banding surgery and will have the Glenn in the next several months. I think it's easy for us moms to think we shouldn't feel grief or sadness or anger, that we should be able to "move on". On the contrary, I think we need to feel the breadth and depth of emotions that come with the territory of suffering before we can move toward healing those parts of our hearts, and that's what I encouraged this mama to do. In our family, my job is to encourage Rog to allow himself to feel what he's feeling and his is to encourage me not to dwell too long on those feelings. It is definitely a balancing act. To feel but not dwell. Because it is oh-so-easy to dwell.

I have read the following Bible story several times before, but just recently as I've begun recognizing this restoration work God is doing in me, I read it with new eyes. It's the story of Jesus healing an 38-year paralytic.
"Near the Sheep Gate in Jerusalem there was a pool, in Hebrew called Bethesda, with five alcoves. Hundreds of sick people — blind, crippled, paralyzed — were in these alcoves. One man had been an invalid there for thirty-eight years. When Jesus saw him stretched out by the pool and knew how long he had been there, he said, 'Do you want to get well?'

The sick man said, 'Sir, when the water is stirred, I don't have anybody to put me in the pool. By the time I get there, somebody else is already in.'

Jesus said, 'Get up, take your bedroll, start walking.' The man was healed on the spot. He picked up his bedroll and walked off."
—John 5:2-9

It seems like a strange question Jesus asks this man, but it leads this man to admit he has no hope of healing without help. We don't know if he was feeling sorry for himself, or complaining to Jesus, but before he could say anything else, Jesus speaks. "Stand up and be well."

This is how hurt becomes hope: We bear one another's burdens, we ask God for help and trust Him to do what He does best — restore.

Thursday, September 9, 2010


Day 1 of preschool was a HIT! Not a single, not even a triple. I'd call it a good old-fashioned home run. You would have thought he had been doing this for years! I just dropped him off for Day 2, and (with breath held and phone nearby) so far so good.

I am in awe of how God has worked this out. That's not to say I don't think there will be "off" days when Luke isn't as excited to go to school, but today, we are reveling in the faithfulness of God.

Part of why I think this first week has been successful is because of how Luke connected with his teacher during Open House. Miss Brenda has been a hot topic around our house, even the subject of a love declaration. "I told Nonna that Miss Brenda is awesome." Pause. "I love her." I think his connection with her has given him the confidence to separate painlessly from me for those two and a half hours.

We couldn't get too much information out of Luke about his first day (oh how I wanted to be a fly on the wall!) but here are a few snippets we pulled out:
  • They sang "The Wheels on the Bus"
  • Snack was apple juice and Winnie the Pooh crackers
  • Pastor Paul told the kids they could run around in the sanctuary
  • There are two boys in Luke's class with "pokey" hair (it's true ... two mohawks!)
Sounds like a pretty good day, doesn't it?

When I picked Luke up, I was able to ask Miss Brenda how he did. She told me that at one point she thought she heard Luke yelling and quickly asked him if he was ok. Luke replied, "Yep. I was just laughing really hard."

Luke, your mommy and daddy are so proud of you. You marched into your first day with such confidence and we already see leadership qualities in you. We pray you continue to love school and love your teacher. You have had many more hurdles than a lot of kids, and you continually surprise us with your ability to clear them. We love you with our whole hearts.

Monday, September 6, 2010


My little heart baby, who didn't surpass his birth weight until he was 12 weeks old, whose very own cardiologist lovingly called him "chicken legs", is now sitting in the 25% for height AND weight. 31.5 pounds and 38". There is no doubt in our dietician's mind that Luke, heart defect or not, would be this exact same size. In her words, "Luke is boring." And everyone knows a boring heart kid is a good thing! I thank God every day that Luke is a good and consistent eater, that he enjoys food and that we have had Judy to walk us off panic ledges time and time again. I think I've said this before, but Rog and I give her tons of credit in helping us trust Luke, which in turn leads to him trusting us and his own body. We are even at a point where we can "make" Luke eat a few more bites. "Two more peaches and one more drink of milk. Then you can be excused." And because food hasn't been a power struggle between us, he'll do it.

I am not going to lie and say I don't still have tendencies to control what he eats, but as more time passes, the more I recognize that there is not a whole lot you can do to make a 3 year old eat if he doesn't want to. It is one of the hardest things I've ever done as Luke's mom — trust him and let go. Obviously, that doesn't mean I don't offer him "meaningful" food (high in calorie and content), and that doesn't mean I like it when he doesn't seem as hungry one day, but at the end of the day, Luke has proven he knows what he needs to grow and thrive.

In high school, I struggled with anorexia. Struggled to the point of 78 pounds. It is so God to use my history and all the tools I have learned in recovery to work hard to make sure Luke has as positive relationship with food as possible. Isn't that just like God? He continually layers His lessons on our hearts, so we don't forget. So we can practice. And I get lots of practice, considering Luke eats 3-5 times a day!

Saturday, September 4, 2010

The "firsts" just keep coming!

Can you guess this newest milestone?

Yes, a big boy bed! Last weekend, we made the move ... this really has been a summer of such growth and stretching for our sweet boy. We were in no hurry to move Luke out of his crib. He is a cautious fellow, so we never had to worry about him jumping out and hurting himself. But about a month ago, Luke started asking if he could have a big boy bed. We told him we could when Daddy was home from camp and when the mailman brought his bedding. Saturday morning his new train bedding came, so it was time! I let Luke choose between a couple of quilts and his decision was decisive. Trains.

We spent Saturday afternoon moving his clothes, dresser, books and toys over to our old guestroom and I'm not sure Luke left his new room the entire afternoon.

The first night went exceptionally well. We prayed together in his room, then daddy stayed for a few more minutes in the glider. When he left, we were sure Luke would call out several times, or maybe even get out of bed and come find us. But what do you know? He fell asleep! At 12:15 am, we heard him cry out a little, so I went in and found him on the floor. The working theory is that he rolled off. Good thing we put his old crib mattress right next to his bed on the floor! I put him back onto his bed and he went right back to sleep and slept through the rest of the night. He has continued to fall asleep really well on his own, but he still wakes up once or twice in the night. He did this in his crib, too, and we're not sure why. It only takes one of us (usually daddy — thank you, hon!) to walk into his room and tell him to go back to sleep, and he does, but we sure would like our "big boy" to sleep all the way through the night.

We have a few cool train decorations coming, like this wall decal:

And if you stop by, you will be asked multiple times if you want to play with him in his big boy bedroom.