Thursday, May 23, 2013

The Ethan Update

On Monday, I picked-up Ethan from a weekend away with my parents; Tuesday was his last day of preschool for the year; and, yesterday he went off to stay with Jeramie's parents for a few days.  I've dubbed this period of time, from last weekend to this one, as "Camp Grandparents" and it's doing a world of good for all of us.

When Ethan came home on Monday, the three of us were sitting around the dinner table and Jeramie looked at me and said something along the lines of, "He's changed. He looks bigger and he's talking differently."  I agreed completely, then realized - this boy of ours is growing up in front of our eyes.  It's hard to see it while we're in the day-in-day-out routine of life, but a short break is all it takes to put this reality front and center.

Photo courtesy of Amaree Davis with Hathaway Photography

First school photo - courtesy of Portrait Makers

Overall, preschool was a wonderful experience for him.  There were some bumps and bruises along the way, but I'm certain he learned a lot of social lessons in the process.  Our reasoning for preschool was to provide some structure for him, but I did not expect him to rebel against it.  It appears that we have quite the stubborn, strong-willed child on our hands, who likes to dictate his own events throughout the day, thankyouverymuch.

Jeramie and I have discussed a few behaviors that we've noticed, and I'd like to have a conversation with Ethan's cardiologist about them in the fall.  Ultimately, I would love to have him evaluated by a NeuroCardiac Care Program (most likely the one at CHOP) sometime between now and him starting Kindergarten.  I am a firm believer that the early intervention services he received for the first three years of his life helped to get him where he is today, and I want to give him that same advantage when it comes to starting school.

Despite those concerns, Ethan is doing really well! As far as we can tell, his heart is strong and his body is healthy.  At last check, he weighed a little over 38 pounds and stood about 42 inches tall.  He is inquisitive - forever wanting to know the mechanics behind how things work - and loves to make people laugh.  He's a pretty brave kid - willing to climb, jump, and explore with the best of them - but still has quite the disdain for swimming.  (We've got to work on that one this summer.)  He is an animal-lover, from ants to cows, and if a human baby doesn't find its way into our family soon, an animal one will!

He's gotten himself in trouble recently with name-calling and "bathroom words", and I can't help but feel like I'm getting a taste of my own sassy medicine.  All that attitude can be exhausting, though, and thanks to Melatonin, he now sleeps very well at night.

Even if it is on the stairs.

This morning, I was thinking about the first time I learned that babies could be born with broken hearts.  I was standing in my friend's apartment about eight years ago as she explained her job to me - transcribing for a local cardiologist who diagnoses and treats heart defects in children.  I was blown away that kids even had heart problems, let alone they could be found while a woman is still pregnant.  I had no idea that four years later, I would end up in that same office with my own baby - still shocked by the fact that it happened to us.

I pray I never lose the sense of awe that comes with thinking about those first few scary months and comparing them to how well Ethan is doing now.  Of course I don't want to dwell on those days, but they are forever a part of his story, one that points to an even greater story of love and redemption.

God is so good, and we are so thankful.

I prayed for this child, and the Lord has granted me what I asked of him.
-1 Samuel 1:27

Photo courtesy of Amaree Davis with Hathaway Photography

Sunday, May 19, 2013

On Motherhood and Family

A couple nights ago, surrounded by complete silence in an empty house, after scrolling through my facebook feed for the umpteenth time, it occurred to me - possibly the greatest irony of motherhood is longing for a break from the noise and chaos of everyday life, then not knowing what to do with yourself without the presence of those things.

With Ethan away at my parents' for a long weekend, and Jeramie participating in a men's weekend at our church, I found myself alone and bored out of my mind.  A few weeks ago, I could have rattled off a handful of things I would do if given a few days to myself.  That night, however, I couldn't recall a single one.  Crazy, isn't it?

It also dawned on me that, as a teenager, I probably attributed a great deal of frustration and "you're-driving-me-crazy" moments to my family.  But now, as an adult, they are quite possibly one of my biggest sources of sanity.  They (and my in-laws) sweep in at just the right time and give me the mental break that I sometimes don't even realize I need.

Having just celebrated Mother's Day, and thinking ahead to Father's Day, I am reminded of just how blessed we are - not only because we're the parents of an amazing little boy, but also because we have such wonderful parents of our own to lean on.  From the very beginning, they've been completely comfortable with Ethan's needs (who knew I would ever teach our moms how to use a feeding pump?!), and I love the relationships Ethan has built with each of them over the past four years.  I realize this isn't necessarily the norm for families today, and I am so thankful that this is our reality.

I had a moment on Mother's Day morning, though - after yet another negative pregnancy test - that tried to rob me of this joy I've been feeling. Talk about another ironic situation...

You see, I am fully mom to Ethan, yet I have one foot wedged in the door of infertility, blocking my way to mothering the second child we so desperately want.  It's easy to focus on the child we don't yet have, while over-looking the immense blessing of the one we do. 

It's quite the predicament.  One that I feel guilty for even expressing, and equally pray that I won't find myself in for much longer.

Until then, I'm looking up and reaching out - praying through the fears and frustrations, inviting others to do the same, and taking advantage of these moments of solitude that help to give me pause and re-focus my thoughts.

It seems that rest and reflection are all God intended for me to "do with myself" this weekend.  No to-do list needed - just resting in Him, quieting the worries of parenting and infertility and money, knowing that He is God in and through all of those things.

The Lord your God is with you
He is mighty to save.
He will take great delight in you,
He will quiet you with his love,
He will rejoice over you with singing.
-Zephaniah 3:17

Friday, May 10, 2013

Happy Weekend!

Jeramie surprised me by taking the day off of work today. We have a fun weekend planned with friends, and I welcome a few extra moments of relaxation this morning.

This week had its fair share of emotionally draining days, but I'm choosing to focus on the happy as we head into our weekend...

Happy Moment #1
The Pulse Ox bill (Senate Bill 98) was signed into LAW by Governor McCrory on Wednesday! I am incredibly proud of our state, and have been blessed to meet so many wonderful people throughout this journey.  Way to go, NC!

Photo courtesy of You're the Cure: North Carolina

Happy Moment #2
Celebrating Mother's Day a few days early.  I am so honored to be this boy's Mama.

Happy Moment #3 
Early morning sunlight and Christmas PJs in May.  Enough said.

Happy Moment #4 
This boy wants to be just like his Daddy, and I don't mind it one bit.

I hope you find the happy in your days, as well.  Enjoy the weekend, friends!

Thursday, May 2, 2013

A BIG Week!

Thank you so much for the prayers you prayed for Ethan on Tuesday.  The surgery went exceptionally well and we were in and out in less than three hours!

The obligatory pre-op family photo

In the early days (months... years...) of our journey with Ethan's heart, I probably would have rolled my eyes at someone asking for prayer for something as minor as removing a tube from the ear.  However, I've grown justalittle and learned a ton over these past four years.  I know that God cares about us, from the depths of our ears to the insides of our hearts, and wants us to give our fears and concerns to Him.  I've also learned that everyone has their own story - your child's "minor" health issue is as big of a deal to you as Ethan's heart defect is to me.  And, as a parent of a child whose surgeries have landed him all over the spectrum of severity, I can tell you that praying him through a simple procedure on Tuesday means the world to me! So, thanks for that.

Snuggling in with Disney Junior

Although the surgery itself was considerably easier than his past procedures, sending him away to the operating room is never easy.  I held back the ugly cry, but tears rolled down my cheeks as I watched my brave boy take the hand of a nurse and walk down the hallway with her.  The tears were equal parts proud and sad, but with surgery lasting less than 20 minutes, I wasn't sad for long!

Ethan woke up a little grouchy, but it wasn't anything that couldn't be cured with some Tylenol, a Push-Up, and Doc McStuffins.  And, before we knew it, we were on our way back home!

Post-op cuddles

Jeramie and I tried to talk to Ethan about how he felt once they got into the OR, but he only mentioned that he was "just a little bit scared, but brave, too".  I was curious to know what he remembered from being asleep, and he went into a crazy story about a silly pirate that looked like this....

Recreating the anesthesia-induced silly pirate

Ha! The Lord continues to protect my sweet boy's mind, and my heart swells with gratitude.

100% superhero

Yesterday was another big day for us.  For a while now, I've been working with the AHA and other parent advocates in North Carolina to pass a law that would require all newborns to be screened with pulse oximetry before going home from the hospital.  Given that the screening likely saved Ethan's life, I'm pretty passionate about it being mandated for our state!


Yesterday - May 1st, 2013 - the House of Representatives unanimously passed Senate Bill 98, sending it to the Governor for his signature! At some point this month (hopefully!) this bill that we have worked so hard on will become LAW.  I can and can't believe it all at the same time.

Ethan was with me as we watched the House vote on this life-saving legislation, and I was overcome with emotion.  My heart was pounding, my hands were shaking, and when they gave him a standing ovation from the House floor, it was all I could do to keep myself from jumping up and down.  They weren't just clapping for Ethan, but for all the children and families across our state who have gone down this path.  It was indescribable.

Be proud, North Carolina.  We did it!!

Silly faces before the House convened

Celebrating outside the House gallery!

I hope you are having an equally wonderful week!

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