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.

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:

• Sample 504 plan for CHD
• Letter to child's teacher
• Sample Health History Summary

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.

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.

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

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.

Oh, Luke.