Monday, November 19, 2012

One and a what?

My girl is one and a HALF today. And long overdue for an update.

video

She is, in one word, a delight. In two words, she is a terrible teether.

On the delightful side, you can see from the video, she loves to sing. With intensity and purpose. And volume. And let's not leave out length. The girl also loves her some dancing. She's open to most music, but especially loves dancing to the Berenstein Bears theme song at night, on our bed, with her brother. Oh does she get excited. Even if she's nursing, she'll jump up when she hears the opening notes.

It would be hard to deny the delightfulness of Laney reading. This may be her favorite activity right now, sitting next to our big basket of books and "reading". She is a perfect mimic of her brother. The inflection, the page-turning, the enthusiasm, I tell you it's all delightful. I'm so thankful both of my kids love books.

On the not-so-delightful side of my Laney-bug is her resistance to diaper changes, cow's milk and her hair rinsed. Look out. It's such a small part of her personality, but the strong will is there, for sure. And it's magnified when she is teething. I don't recall even knowing when Luke had a new tooth break through, so this clinging/whining/hands-in-the-mouth/not-eating stuff is new for us. She has all 16 teeth now, so I'm hopeful we are done until her 2-year molars. Please?

We had her 18-month appointment today, and she her doc's most proportionate baby. Maybe in history! 50th percentile for weight (24 lbs), height (31.5") and head circumference. She's in size 4 diapers, size 5 shoes and size 18-24 month clothes. I will be so sad when she loses the chubby thighs and tummy. I think Luke will be too, since he is always telling her, "Laney! Your belly is so chubby!" Soon I'll have to talk to him about commenting on girls' figures :)

At her appointment today, she had a toe poke and three vaccines. Not one tear. I attribute this to having a brother four years her senior. She puts up a lot from him and is one tough cookie. I love how lately she's been able to really "play" with him. She would follow him to the moon. Luke is a bit obsessed with ninjas right now and has a collection of ninja weapons. Luke has some serious ninja moves, but Laney can hold her own with the nunchucks. Again, look out.

Laney is such my buddy these days. I am really treasuring having one-on-one time with her in the mornings after we drop Luke off at school. Sometimes we'll go to the Y, sometimes we'll run outside or hit Target, but a lot of times we'll get our Starbucks and just go home to play together. I keep thinking of next year, when Luke is in school full-day. We will have some serious mommy-daughter time then!

Speaking of the Y, Laney is doing fairly well in nursery-type settings. There are tears, but I've been told (at church too) that she stops almost immediately. With Luke's history and difficulty with separation anxiety, it is high priority for Roger and me to help Laney be comfortable in those types of settings.

Did someone mention delightful? Delightful is nursing my daughter in the morning and night. I never expected to still be nursing at 18 months. Everyone said she'll cue you when she's done and she just never did. And I've been okay with that. She's my baby and it's such nice snuggle time. It's a little tricky when she wants to nurse during the day, but that doesn't happen too often. Usually only when she's not feeling like herself.

Delightful is watching her language develop. The girl is talking so much! I'm not sure how many words, but she's even putting two and three together: "Yes Mom!" (usually followed by doing something I've just asked her NOT to do). "Bye Dad!", "I don't know" (all kind of smooshed together), and my personal favorite "Be by back" (Be right back). With this phrase, she'll go to another room or around the corner, just so she can come running "right back!" Another sweet one is "Bye-bye" when you lay her down in her crib at night. But wait, maybe my favorite is her "Thank you". I'm not even sure how to phonetically spell how she says it, but it's pretty amazing.

I didn't count them up, but for this girl, the delightfuls far outnumber the not-so-much's.

Happy 18 months sweetest girl.

Friday, November 16, 2012

Coexistence

There are times when I look at Laney's flawless chest and it sucks the breath right out of me. It's like a meeting of these two intense emotions that are so different it's crazy they can coexist. How, at the same time, can I feel such deep gratitude for Laney's healthy heart and also feel such sadness about what all the scar on Luke's perfect little chest means?

Maybe I don't have to reconcile those two emotions. Maybe I can just take both for what they are: two very different ways God is teaching me about His love for me.

A friend of mine posted on Facebook the other day about their great 20-week ultrasound appointment and how God was "smiling down on them" by giving them a healthy baby. I believe this to be true. I believe the Bible when it says, "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." What I had to wrestle with, however, is what that meant for our family.

Was God not smiling on us when he allowed Luke's right ventricle to not form?

The more I've spun this thought in my mind, the more I hear God saying, "No!"

God knew Luke's diagnosis would be difficult for me and Roger. He knew Laney's health would be a celebration. But God does not change. That means he loved us with a perfect love when I was pregnant with Luke and his love was perfection when I was pregnant with Laney. His love just looked different.

Just like my love for my children looks different when I am praising them and when I am disciplining them. But it is still love.

It is such a lie the enemy wants us to believe, that we are displeasing to God when bad things happen. What if it's not about us? What if it's about HIM?

I'll admit my friend's comment stung for a couple of days. Not because I wasn't thrilled for her. But because that old familiar tug of "why us" tried to wiggle in and steal my joy. Six years after finding out about Luke's heart, this tug is no longer a daily battle. But I think it would be dishonest to say it's not a part of my life. I think it may always be ... and that's okay because each time I confront the ugly untruth that God fell asleep on the job, I learn a little more about what is true: "See what kind of love the Father has given to us, that we should be called children of God; and so we are." (1 John 3:1)

Tuesday, November 13, 2012

Halloween, and a conference

With the news of Mia and Addy weighing on me the past few weeks, it's been hard for me to blog about the family stuff that so often is taken for granted as run-of-the-mill. When in actuality, it is precious. And as much as my heart continues to feel grief for these two families, I also know it's important to live and continuing to record that living for my family. With that said, here are some long overdue Smith updates.

Halloween

Gone are the days I can pick my son's Halloween costume for him. He's been a monkey, a skunk, a dragon and a dinosaur, but this year it was completely his choice. And he was the happiest teenage mutant ninja turtle the sewers had ever seen. Luke is at that age where a costume isn't really a costume, it's a change of persona. He kept making sure that "Nobody can tell it's me under here, right?"




Gone also are the days of me and him holding hands to each door. He was off with his neighbor friends the minute we stepped outside.


We live in a small neighborhood, just 18 homes. So once we made the rounds here, Roger and Luke headed to a larger neighborhood across the street to continue the candy haul. Laney and I were content to call it a night. She may have been an owl, but this girl was ready for her bed by 7:30 as usual!


Halloween night was a "hoot" for all of us.


Halloween day, however, I could've skipped right over. Every other Wednesday Luke doesn't have school, so it was a looong day of "How much longer?" whines.

Here's my ninja boy in all his green glory.

And some more pictures of the cutest owl the forest ever did see:




I was looking at pictures on my mom's fridge the other night and there is one of Luke from this past Christmas and I couldn't believe how different he looked to me even from nine months ago. He really is growing up, both in looks and behavior. I feel like he's lost the last of his "baby" face. He is becoming more and more independent and I am having a hard time believing he has two months of kindergarten under his belt.

Parent-Teacher Conferences

As a fifth grade teacher, my husband has sat down at conference time with hundreds and hundreds of parents. But this was the first time on the "other side of the table" for him. We were excited to hear how Luke was doing beyond his daily "green stars". Each day, the kids color their star chart green, yellow, or red. The teacher will send home a comment if the child has had a "yellow" or "red" day.

Out of 26 assessed areas, Luke "passed" 20. And the six areas where improvement were encouraged were not academic. Nope. They had to do with being a bit too chatty and social. Too social! Considering Luke was pretty much isolated his first two and a half years of life, this is a problem we celebrate! How much did I worry about Luke not being exposed to nursery-type settings his first few years? I'm pretty sure God, as our Creator, knew we worrisome humans needed specific instructions regarding the pointlessness of worry: "Who of you by worrying can add a single hour to his life?" (Matthew 6:27)

So my little social butterfly tends to rush through his independent work so he can get to the social activities. Or, he's busy socializing and then has to rush to get his worksheet done.

We love that Luke loves his friends. Both Roger and I were shy in elementary school (me painfully so), so it's important to us to encourage his need for socializing. We just want him socializing at the proper times in school. Recess, activity center ... chat away! Reading groups, rug time ... Keep the chatting to a minimum.

Mrs. Suther was very pleased with Luke's reading and math skills. "Above and beyond" the standard at this point in the year were her words. She is not an effusive teacher, but she did let us know that Luke is doing great in her class and she would have trouble picking out the "heart kid" if she didn't know different. He loves music class and he loves library. He loves riding the bus home each day. Coloring? Not his fave.

I feel blessed beyond belief that Luke is thriving in school. That we are able to have a "typical" parent-teacher conference about him. Even that we get to discipline the rough edges. That we get to organize play dates for his social little heart and pack his backpack every morning. That we get to battle the after-school grumps and help him with his "homework."

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you." (1 Thessalonians 5:18)

Monday, October 15, 2012

We live right across the street - Mia McDonald

Many of you mourn with me this week over the news of Mia. I know I'm still in shock. My heart hurts so much for this family we know and love. I met Mimi through our local YMCA, when, four years ago, the staff was holding a bake sale to raise money for this precious little girl waiting for a new heart. I was immediately drawn to her picture on the poster board and found out Mimi had started a blog to keep people updated on baby Mia. I commented on her blog, sharing with her about Luke's heart, and we met soon after at a support group meeting at Seattle Children's hospital. This is where Luke had both of his open heart surgeries and where Mia was fighting to live until a donor heart became available. There were no surgical options for Mia. She needed a new heart and soon. The doctors didn't think she would make it more than four months waiting, and at four months and one day old, the McDonald's got the call that a heart for Mia had come. With one selfless decision on the part of the donor family, this sweet girl had a second chance at life.


And life this girl did live. I'm not sure I have ever met a happier girl. Along with so many of Mimi's blog readers, I was so excited to hear Mia got to go to Disney World to meet Minnie Mouse as part of the Make-a-Wish program. I think Mia was a little excited too.


The family headed to Florida last Tuesday and by Wednesday, Mia was at the local Orlando hospital, being treated for what they thought was pneumonia. In actuality, her body was rejecting her donor heart, and they docs decided to do an emergency biopsy of her heart to find out how best to treat this rejection episode. Mia has battled rejection a couple of times, but the episodes were treated successfully with steroids and a medication regimen. She has had multiple biopsy catheterizations, but something went very wrong this time.

Her heart stopped and she came out of the cath lab on ECMO, a heart-lung life support machine.

Two days later, even though her heart had begun to recover, it was discovered that Mia had no brain activity. She would not make it.

The heart community, along with all who knew and loved the McDonald family, was left reeling. How could a seemingly healthy little girl, on the trip of a lifetime, pass away? How can a family survive something so, so terrible? How can God ask someone to bear this tragedy?

What I wish is that I could tell Mimi, "This is is why this happened. This is what God is doing." Faith is so hard when we can't see the "why".  When all we can do is cling fast and lean hard on a God Who says "He will never leave us or forsake us."

I know the Bible tells us not to be surprised by suffering and that we should be prepared to suffer for the Lord, but how do you prepare for the pain Mia's family is feeling? My heart has hurt, ached, been burdened and broken for Mimi this past week, but I can't truly understand what she's going through. What I can do is be her faith for her. To remind her that it's okay to be angry, confused, broken. To let her know that she is not alone and that God has not forsaken her.

I pray she is lifted up in the days and weeks to come by all those who love her and loved her little girl.

I pray that God will give her glimpses of His Goodness even in what I would imagine are the darkest hours of her life.

I pray that in her brokenness, God would be more real to her than ever.

I love Mimi and I loved Mia. I am so sad she is gone and so sad this family has to live life without her beauty. But I know, deep-down-know, that God will bring purpose through her death. I say that, even as our family lives right across the street from a tragedy like this. This is not a cross-country tragedy for our family. We live with the reality that Luke's most important organ is broken and that God may take our son before we're ready. I pray so hard that is not the case, but we face that possibility more than families with healthy children.

I don't begin to say I understand God's ways and why He allowed Mia to die. But as Jesus wept when His friend Lazarus died, I believe He is weeping with the McDonald family. And He is using their community to carry them. A community of people like my friend Katie, who drove 11 hours to attend Mia's service on Saturday. People like the 40 heart moms who wore red to the funeral, to show their love and support for the McDonald's.

The heart community is not one I would have volunteered to be a part of, but the people within are without compare when it comes to sharing the load.

We love you, Mia. You will always be remembered.

Katie & Maddie, Me & Luke, Susie & Teagan, Mimi & Mia

Sunday, September 23, 2012

Cardiology appointment

Deep breath in. Huge sigh of relief.

Luke received another six-month pass and high five from his cardiologist yesterday. I kind of can't believe it (oh ye of little faith!) but am so thankful that Luke's heart function continues to be so good. His squeeze is as good as last May and the blood flow through his coarctation is "turbulent" but not concerning at this point.


Luke's oxygen saturations were 84-86%. This is the number that will most indicate when it's time for surgery. This number has been the same for five years. It blows me away that his sats have stayed in the mid-80's for so long. For many kids with a single ventricle, this number starts to decline as they get bigger and taller and the heart has to work harder to pump blood further away from the heart. It makes me wonder if Luke's gradual growth over the years, and being on the smaller side has helped maintain his sats. Luke has never had a giant growth spurt. His motto is slow and steady.

Whatever the reason, our new doctor feels very comfortable with those numbers and not moving forward with the Fontan yet. He does believe, as did Dr. S., that his sats will start to drop at some point and we will notice more fatigue in Luke. Then it will be time for surgery. What no one will say, however, is when that will be. I think for both Dr. Kim and Dr. S., this is new territory. Luke is their oldest patient yet to have this third-stage surgery.

I joked with Nurse Melissa that appointments at five years sure are a different experience than appointments at two years.
Dr. Kim did share with us that one of his patients pre-Fontan developed pulmonary fistulas, which caused his sats to drop and his Fontan to be quickly scheduled. This isn't a super common occurrence, but something to keep an eye out for as we wait. The only other downside of waiting, is the theory (theory!) that lower-than-normal oxygen levels can affect learning development. We haven't seen a single sign of that in Luke, but something that we need to weigh during this process.

I'm trying hard to look at our situation as a process God is walking us through. When you first hear "He'll need three surgeries ...", it's hard not to look at the Fontan as the finish line. But whenever Luke's Fontan is, he will continue to need care and intervention and medicine. He's never going to be "done" or "fixed", but God willing, he will be strong going in to the Fontan, and stronger coming out.

Luke was stellar during the appointment, so naturally, here's where we took our future "Lego Artist":


Thank you, everyone, for your thoughts and prayers. We continue to covet them and treasure them.

Thursday, September 20, 2012

Cardiology appointment tomorrow: Prayers requested!

We just scheduled Luke's next cardiology appointment for this Friday morning. It's about a month early, but because our insurance rolls over to a new plan October 1, an earlier appointment benefits us. I have the pit-in-the-gut right now. Blegh. Luke's been a little congested, and therefore a little blue and winded, which always increases my anxiety about his heart health. I know we got a great report not five months ago, but this is also a world in which things can change fast.

Take Addison. She had her Fontan a year ago and has been doing just great. Three weeks ago her echocardiogram looked beautiful. Today? She is listed as 1A in the Cardiac ICU, needing a new heart immediately. She had a myocardial infarction heart attack last week and is a very sick girl.

I share that for two reasons: One, because this girl needs our prayers. But also because we have a choice. And of the two choices — fear or faith — we can only choose one.

A Charles Swindoll devotional was handed to me and Roger a couple of days ago by a friend ... and this before he even knew about Luke's upcoming appointment. It talks about the two choices we have each day (sometimes each moment!). One is a "monster" (the emotion of fear); the other a pillar (the decision of faith).
"In order to trust God perfectly, we must see our situations through eyes of faith, not our feelings. Either the Lord is sovereign and in full control, or He's off His throne altogether."
I could so easily let the emotion of tomorrow's appointment, and the tragedy of Addison's situation distract me from God's sovereignty. That He is Who He says He is, that His promises are sure and that He is going before us tomorrow.

He already knows what Luke's echocardiogram is going to show. He already knows what his sat's are going to be. The more I replay this truth in my mind, the more it reaches my heart and calms my fears. When that pit in my stomach tells me to run and hide, when my emotion leans toward anger at the unfairness of Luke's heart defect, I am going to choose the pillar of believing God is in charge.

Please pray with us for another good report on Luke's heart. This will also be our first appointment with our new cardiologist, so prayers for peace and like-mindedness would also be appreciated!

Wednesday, September 12, 2012

Kindergarten: Week 2


Feeling so thankful this morning for our sweet neighbors. Each morning this week, Luke has had someone to make this long walk to his class' line with a friend from the neighborhood. Above is sweet Ari walking Luke back to his kindergarten line. When Ari walk him back, it's a miracle, there are no nerves! He just jumps right out of the car, comparing whose backpack is heavier.

A miracle, or a tiny little crush?

And speaking of this picture, how can my son be so grown up and so little at the same time?

School is going really well. We are settling in a bit more to a morning routine and we have managed to be one time each day! The afternoon crabbies are also getting a little better as Luke adjusts to going to school every day ("What?!" He says to me on Friday morning. "I have to go to school TODAY?")

Yesterday, Laney and I made our way down to the bus stop at the entrance to our neighborhood a minute or so before 11:45. 11:45 ... 11:50 ... 11:55 ... still no bus. I finally called the school at noon to see if I should be concerned or not. The secretary hadn't heard anything but said she'd call me right back. When she did, she informed me the bus had already been by, but since there was no one waiting for Luke, it kept going. She said the driver would be looping back around shortly to drop him off. Whoops. Rookie kindergarten mom mistake.

Thankfully Luke was fine and actually appreciated the extra long bus ride. Usually he's the first drop off so I think this was kind of a treat for him. For the bus driver? She gets a famous Puyallup Fair scone tomorrow.

We have a meeting next Wednesday with the school counselor and Luke's teacher, to go over his drafted 504 plan. It will be good to once again touch base about Luke's special heart and make sure we're all on the same page. Thankful everyone at Shaw Road has been so accommodating and receptive.

And one final thankful. I received this email from Luke's preschool and pre-K teacher this morning:
  
Good Morning Jesse,

How is Kindergarten is going for Luke?  I've been thinking of him ever since school started.  I hope he's loving it and his teacher already realizes what an extra special little boy he is!

Love to you and your family,
Brenda


In so many ways, I see God's hand of provision on Luke's life. And I give Him glory.

Friday, September 7, 2012

177 more days

Day One is in the books. It was a good, good first day of school for Luke. No tears (for him or me!) and a hope that tomorrow would be even longer. I am definitely taking that as a good sign.


Parents were invited to come into the classroom with the kids in the morning for a "Meet and Greet". Mr. Independence walked in with me. He wanted no help hanging up his backpack, taking out his school supplies, and finding his desk.



After the parent/child activity, the kids were invited to rug time to hear Mrs. Suther read "First Day Jitters". Luke raised his hand honestly when she asked the kids if anyone was nervous. If I weren't holding Laney, I might have raised my hand too. After the story, I told Luke I was going to go and he bravely said "Bye, Mom." So I went. I walked out to my car and thanked the Lord for my sweet boy.

Day Two: My son is officially a kindergartener. And the nerves officially hit on this morning. I predicted these nerves would hit Monday, but they came sooner than that. It broke my heart to watch him battle his fear and fight tears. I agreed to walk him to his classroom door and after making sure his teacher would call me if she needed to, he walked into his room. It reminded me a little of a walk toward the gallows.

I reminded him that he has felt this nervous tummy before and that as soon as he was in his class, it would go away.

I reminded him that he knew his teacher and that she would take care of him today.

I reminded him that I would be there after school, waiting for him.

And then he reminded me where our strength comes from:

We were walking back to his line where his teacher picks him up. "Luke, remember last year at Pre-K, and I would say to you, 'I'll see you at 11:30!' and that would help you? What should I say this morning that might help you?"

"I think I just want to pray."

Oh my word. How many times do I struggle through a situation, looking inward for a solution that may or may not work. Why is my first response not to pray first EVERY TIME?

So, as we walked toward his line, I prayed for him. His fear didn't disappear instantly or completely, but I think we both felt a bit more peaceful. And I knew that he knew God was going before him.

I may have a college degree, but my kindergartener was much wiser than me today.


You know what else he was today?

A bus-rider! The first thing he said to me after he got off was, "That was so short!" We'll see if he feels the same way in February :)


Now it's Day Three. Drop-off was much better today. I did agree to walk him to his classroom door again, but it was a happy walk rather than clingy. We saw all of his neighborhood friends before the bell which I know helps him a ton. He loves being like the older kids and they all are so good with him. "Hey Luke! Have a great day, Luke!" Big hugs and high fives eased the nerves this morning.


School is almost out so I am going to go meet the bus and give my kindergartener a huge hug.

Saturday, September 1, 2012

Shaw Road, Here He Comes!



I am a crazy concoction of emotions these days. Thrilled my first-born is four days away from this new adventure called kindergarten. Confident that God has placed Luke with the right teacher. Anxious that Luke will be anxious (we had a rough spell the first couple weeks of pre-K last year ... drop-offs were not the prettiest).

Interwoven with all of the above is the emotion that come with sending a child with special needs off to "big" school for the first time. When Luke is at the park with me, when he's at Grandma's or running around with the neighborhood kids, there is no 504 plan, no Emergency Action Plan. I take that back: Mom and Dad were the emergency action plans. I know his doctors' numbers by heart, I know what he looks like when he's resting and when he's playing. I know when to give him his medication, when to push, and when to back off.

Making sure that is communicated to all his school caregivers feels bigger than I thought it would.

What I want to communicate to his school is this: Luke is a normal kid, but he's not. Know that his heart defect is serious and complex, but treat him like any other kid. This is a fine line to walk.

Thankfully, everyone I've worked with so far has been receptive and supportive. Mrs. Cook, the school nurse has been the point person in making sure all Luke's paperwork is in order as well as distributed to everyone's hands it needs to be in: teacher, librarian, music teacher, recess duty, etc.

Luke's heart defect is never far from my mind, but it's been more forefront these past couple of weeks than it has in a while. He is not your average five year old heading off to school. Although I am 99% certain that there will be no need for an Emergency Action Plan (which includes situational instruction for things like blue spells, heart palpitations, chest pain, etc ...), it still needs to be in place. Every form I sign, call I make, I am reminded that Luke's heart is oh-so-unique.

We've had to navigate this letting-Luke-be-a-kid before, but this is a biggie. My heart is so ready for him to experience kindergarten and I believe he is ready too. His backpack is packed, his hair is cut, his new Nikes are bought. We are praying hard for his teacher and the kids in his class.



I took him to Kindergarten Orientation a couple of weeks ago and while the parents stayed in the gym for Q&A, the principal toured the kids around the school, showing them the classrooms, the library and of course the playground. Luke had a good time and didn't seem nervous at all. We've talked so much about it, he seems very matter-of-fact about it. It helps that several of his older neighbor friends will also be at his school.

A lot of people have asked me if I'm going to cry on the first day. I don't know, but I don't think I will. This is such a happy thing, a celebration of a gigantic milestone. If the tears do come, they are because I am so darn thankful to God for bringing us this far.

For those of you heart moms with future kindergarteners, here are some of the great resources I found and used to give to Luke's school:
Our cardiologist provided the Emergency Action Plan document and faxed it directly to our school, along with providing us with a prescription for a 3-day emergency supply of Enalapril for the nurse to keep in her office.

I have been so thankful for the response we've gotten from everyone involved ... at the cardiologist's and the school. Kindergarten, here comes Luke!

Go get 'em, buddy.

Wednesday, August 15, 2012

Pre-Fontan Illusion

Right now, we are in Black Butte, OR. Laney is napping. Luke is watching the Lorax and my loves-to-shop husband went into town to look around. We spent the morning at the pool and Luke braved the big slide.

Five years ago this week, we were in the Cardiac ICU, at the start of our recovery from Luke's second open-heart surgery, the Glenn. Five years ago, we spent 26 days in the hospital, having to send Luke back to the O.R. to stitch down his paralyzed diaphragm. There is so much of me that is grateful we've had such a long reprieve from surgical intervention, and that Luke's heart has been strong enough to delay the Fontan as much as we have. But it's been five years and I don't know how to enter back into that intensity. I'm calling this place we're in, where the dust from the Glenn has settled and our lives have been stable for a long time (so stable a little girl joined our family!) the pre-Fontan Illusion.

It's not a delusion. I know Luke needs the Fontan. I know his heart is missing a ventricle. It is never far from my mind that he breathes harder than other kids, takes more breaks, and needs to take daily medication. But the intensity of surgery and the months following has lightened. Our conversations don't revolve around Luke's heart anymore. I forget to make him was his hands and when his nose gets runny, I think more about possible lack of sleep than his heart getting sick.

Does it punch me in the stomach sometimes still? Yes. Do I wish his heart were whole and worry about the unique challenges he faces as a kid with a medical condition? Of course. Do I still wrestle with envy and doubt? No doubt. But we have put in some hard work in the past five years to process and begin to heal from the fire of Luke's diagnosis and first year of life.

In this state of stability, it is incredibly difficult to wrap my brain around entering back into the world of ventilators and chest tubes and IV's and morphine. I start to panic, realizing I have no idea how to do that again. I think, "Maybe it would have been better if Luke had had the Fontan at three ..." But you know what that thinking shows? That I want to be in control, that I know best. I hear God whisper, "Trust Me." I feel Him tap my heart, reminding me that He will give strength and courage when it is needed. Not before. In the "before", I need to love my son, love my family and love God.

We have been talking a lot to Luke about courage, and praying each night that God would give him a courageous heart as he enters the big, wide world of grade school. Because, we tell him, we can't defeat fear on our own.

I pray as I pray that over him, it will sink deeper into my heart as well.

So we can live fully in this season and go back to the pool to hit the slide bravely again.

Sunday, July 22, 2012

We've got steps, people!

There's not a whole lot of baby left in this one.

She wants nothing more than to do what the "big kids" are doing.

Not only does she not want any help in feeding, she doesn't even want you to cut up her food! She prefers the whole of it, thank you very much.

She has officially taken steps (5-8 at a time), though we can't call her a walker quite yet. She is still happily booty-scooting her days away. She has callouses on the outside of her ankles and permanent stains on the rear of her pants to prove it.

Her baby days are quickly vanishing which makes me ever the more thankful for her blankie and our nursing sessions. The more independent she gets, the more I cherish the knuckle dimples and silky skin, the baby belly laugh and the thigh rolls.

At just over 14 months, she is learning faster than I can believe. She is such a little observer and mimic. And becoming quite the communicator, with sign and new words right and left. "Mama" (which often is shortened to "Mom!" which has an uncanny resemblence to Luke's call); "Dada", "Papa", "Nonna", "Bye", "Ni-Night", "Yah" (for "yes"), "Hot" (always said in a whisper), "Hi", "Cat", "Wa" (for water, always in tandem with the sign), "Moy" (more), "Ba! Ba!" (ball), "Uh-oh", and "Buh-da" (for brother).

She loves doing the motions to "Itsy-Bitsy Spider" and yelling "Pa!" during "Pop Goes the Weasel". Luke learned songs at VBS this summer that have hand motions and she tries her darndest to copy him.

She will find dirt wherever we are and I have given up trying to keep her little outfits clean. She wants to be outside, getting dirty, wet and sticky. She has loved the kiddie pool this summer and has no qualms about the water being freezing. She has never met a popsicle she didn't like and forget putting bows in her hair. Thanks to her older brother, she is one tough cookie, busy all day long.



Laney is still taking two naps a day and doesn't seem to be ready to drop that morning nap. She is really ready by 9:30 or 10am to go down for a snooze. She takes her second nap around 2pm and goes to bed each night around 7:30. Ever since she got her one-year molars, her night waking is worse. She cries out once or twice a night, very briefly, but long enough to wake up mom and dad. I've actually started leaving her monitor off so that I don't wake up the second she cries out. Anyone else's little ones do this?

I am so in love with this little (big!) girl. Sometimes I look at her and all I see is God pouring out His love for us through a gift like her. She delights us, and enchants us, and she causes me to love God even more. Yes, she has her spunk and her independent streak; yes, she fights me every time on diaper changes; no, my sleep isn't as good as I'd like it to be ... but isn't that the definition of love? To love despite?

"But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." Romans 5:8


Saturday, July 14, 2012

What you do in the outfield when you're five ...

Our dear family friend put this montage together of Luke in the outfield. He always told me that he didn't really like playing in the outfield because it was so "booorring."

Good to know my son knows how to occupy himself when he's bored.

video

Oh, Luke.

Friday, June 29, 2012

Blueprint

I am near bursting with pride. Despite a "nervous tummy", he went bravely into our church's Vacation Bible School all week, with only one tearful drop-off. It gives me so much hope for the transition to kindergarten. It has helped that his best buddy, Marcus, went to VBS with him, but Luke is one of those kids who, once his mind is made up, isn't really swayed by incentives.

The Children's Pastor opened the first morning by asking if anyone was feeling a little nervous. Look who's hand shot up:


Mama was nervous too.

I love that Luke can recognize what he is feeling, verbalize it, and then take action to help his nerves. I overheard him ask his teacher if 1) she was going to be his teacher all day, and 2) what time his mom was going to pick him up. He needed those details to start to feel comfortable. I would never have been able to do that as a shy five year old!

The theme this year was "Blueprint: God's Plan for Your Life". I'm not sure how much he retained, since his stories were always about obstacle courses and snack and building bird houses and stickers, but my prayer is that deep in his heart He is beginning to understand that God is planning good things for Luke's life and following Him will lead to peace, joy and satisfaction.


Thursday, June 21, 2012

Teeth woes

These one-year molars are no joke. Out of nine possible teething signs I found on totsites.com, Laney's hit them all: Night waking, hands far back in mouth, fever, drooling, irritability, clinginess, lack of interest in solids, etc. I don't recall even knowing when Luke was teething, so this is new territory for us. I feel the two molars on the top, but not on the bottom yet. I am ready to have my Laney back!

But she is not the only Smith with teeth woes right now. Luke took a nasty fall off his bike on Sunday, and I mean nasty. Busted lip, scraped chin and nose, and chipped front tooth. This was not a boo-boo. This was a big-boy fall. We saw his pediatric dentist this morning, who wants to see him again in three weeks when the swelling has gone down. From there, we'll check the health of that front tooth by x-ray. If it's not bruised, we can leave it alone or fill that chip. If it is bruised inside, we may need to pull it. Thankfully, he is only a year or so away from losing it anyway. I can't get a picture of his tooth since his lip is still so swollen, but here's his face the day after the fall:

I think this is what they call "eating the pavement".

Luke was riding (he just learned how to ride his two-wheeler two weeks ago) up in our cul-de-sac when he crashed. Roger was up there with him and some of the neighborhood kids and I heard the screaming from way up there. It was one of those moments that you don't even want to enter into. The first thing I saw was Roger's shirt, covered in blood. Mouth injuries and anti-coagulants make for a lot of blood. I was so thankful Roger was there to be the judge of what was what in his mouth. I was the holder. It was really hard to see Luke that hurt and upset. It automatically triggered for me memories of past surgeries and fears about his future one. Roger and I both felt pretty unsettled the rest of the day. Luke recovered much quicker :)

Here's what I love about this kid: When he was screaming right afterwards, he yelled out, "I never want to ride bikes AGAIN!" But the next day?



Wednesday, June 20, 2012

Our Graduate!

I'm a little stunned that my son is starting kindergarten in the fall. I'm also a little sad to say good-bye to this preschool. I would be a lot sad if I knew we wouldn't be back in two years with Laney.

Luke has two parents who both, as children, were terribly uncomfortable in new situations. I wouldn't take my coat off for the first two weeks of kindergarten. Roger got stomach aches before school every morning. Top genetics off with a not-so-normal and pretty-darn-isolated first couple of years of life and you get a kid who struggles with the transition to unfamiliar settings. This school was amazing in helping Luke battle through this. Both years, it took about the first three or four weeks until we could drop off with no tears.

Miss Brenda would repeatedly encourage me that his tears lasted a total of six seconds once I was gone and that once inside the classroom, he shone.

Miss Jill in the front office would put her arm around me and walk me to the door, telling me I was doing the right thing.

And I knew I was. I knew Luke and how much he loved the social and academic parts of school. You could tell he was always disappointed when I came to pick him up that the school day was over.

I know we may have more tears at the start of kindergarten, but I truly believe that he is learning to take pride in overcoming difficulties. And I pray, pray, pray learning the truth that he "can do all things through Christ" who strengthens him.

Luke, we are so proud of you. You do shine in the classroom. You are funny and smart and people want to be around you. I know your memories of preschool may not be vivid, but I hope you remember the love that Miss Brenda had for you and her daily hugs. I hope you remember Kayser and Isaac, your first "you-choose" friends. I hope you remember how much fun you had when it was your turn to be snack leader. I hope you remember the leprechaun hunt and circle time. I hope you remember that your mom and dad were so proud of you for facing your fears and persevering.

Happy Graduation!

Buddies Isaac and Kayser

The proud family

Sweet friend Isabella

A thumbs up day for sure!

Pastor Paul opening the graduation. He led chapel for the preschoolers every Monday.

Singing "To Kindergarten We Go!"

Singing "Deep and Wide"

I love how three of the four kids in this picture were fiddling with their caps.

Miss Brenda. You are forever dear to our hearts.

So into it!

The face of pride.

Saturday, June 2, 2012

She's a matter of surrender

In a funny, roundabout way, Laney is here, being cute and turning one, simply as a matter of surrender. This little person who gives both kisses and opinions freely would not be here if Roger and I had chosen not to surrender our fear.

With almost four and a half years between Luke and Laney, it doesn't take a mathematician to see this process of surrendering was difficult for us.  For a while, when we believed Luke's third surgery would happen the summer he was three and a half and 30 pounds, it was easy just to put talk and thought of baby number two on the back burner. We knew we wanted to get Luke through the Fontan before we had another child.

It was also easier during that time to think, "Yes! Of course we want a second!" After all, Roger and I had always talked about having two children. But the actual step — no, run and gigantic leap — of faith to get that second child here was still hypothetical and far enough away to shield our true emotions.

In December of 2009, we left Dr. Stefanelli's office stunned to hear that he did not want to move forward with the Fontan anytime soon, and definitely not that coming summer. Of course, this was good news. But it shook what tentative plans we had for our family. And it brought our fear that much closer to the surface. I remember the week following that appointment. Both Roger and I were shorter and more impatient with each other, for no outward reason. God knew (and we knew!) the conversation that needed to happen: Do we do this? Do we risk getting pregnant again? What if something is wrong with this baby's heart? Can we go through that again?

These are tough, tough questions. And for us as a couple, they were a very real hurdle to getting from point A to point B.

Here's what it boiled down to for us: If Luke were a healthy-hearted boy, would we have had a second child? No question. So what was holding us back? That nasty little word: FEAR. And fear alone is never a good enough reason to not move forward.

"O LORD Almighty, blessed is the man who trusts in you." (Psalm 84:12)

Mind you, Laney was not conceived the next day. I wish surrender was that quick and painless! It still took us a while to wade through our emotions, our post-trauma, and to feel strong enough to accept God's directive to trust Him, come what may. We both had to get to a place where we were going to trust God, whether He chose to give us a healthy child or not. In our circumstance, "blessed" did come in the form of a healthy little girl. But God may have chosen to bless us with another child with special needs.

That sentence is hard for us humans to reconcile with our idea of blessing. I don't think I could say that so fully without having gone through what we've gone through with Luke (disclaimer: I still wrestle with trusting that God's ways our better than mine. I'm pretty sure I always will). Before Luke, we didn't know the blessing that comes through hardship ... the blessing of being carried by prayer, the blessing of connecting with other families that get it. The blessing of perspective.

When you live with the very real possibility of tragedy, it is much easier to let the little things be little things.

"... blessed is the man who trusts in you."

And much easier to not take for granted the simple joys in life, say, for instance, celebrating a certain birthday of a certain one-year-old.











Happy Birthday, sweetest blessing from the Lord!