Wednesday, October 9, 2019

6 Months Later ...

I truly cannot believe today marks 6 months since Stella's third open heart surgery. On Sunday someone said to me - "oh gosh, that feels like it was just last month!" Which truth be told, it feels like it was just yesterday some days and a lifetime ago the next. The number 1 question I get asked on a daily basis (and often multiple times a day) is “how is Stella doing?” So let me start by telling you how she is. That’s probably why you are reading this in the first place. 

Stella is incredible. She is healthy. She is stable. She is living life like a totally normal 3 1/2 year old. Actually that is a massive lie. Stella lives the life of a totally rotten 3 1/2 year old. She eats cookies for breakfast, she is held or cuddled at all hours of the day and night, she doesn't know the meaning of the word "no" and is catered to by everyone she comes into contact with. She’s also a bit of a weirdo and a mini Kate. She is my sidekick and goes pretty much wherever I go. She’s famous around town and I typically introduce myself as “Stella’s mom.” And she’s got a bit of a dark side when she’s tired which rarely comes out but when it does, Godspeed. 

Stella started preschool this Fall and it has been an awesome way to normalize her life, and I don’t take for granted one day that she is healthy enough to go. I also don’t take for granted that it’s the first time in over 5 years that I’m alone. #freedom 😉 When she isn’t in school, she’s with me at the office. Because that's right - I got a new job! My friends at the Ollie Hinkle Heart Foundation have graciously entrusted me with the role of Outreach Coordinator and I get to “work” with heart families in the area to meet the needs of local families actively fighting alongside their heart warriors. It is filling me up to give back and spread some love and encouragement in an environment that often feels hopeless. 

Hilariously, the best compliment I get fairly often is how much people enjoy this blog and wish I kept up with it more. Which goes to show how much you all enjoy sarcasm and self deprecation mixed with a little Jesus. And ironically, in church the last few weeks we’ve been talking about our personal stories - what lead us to church or a life with Christ and what that means. And now that I’ve let the blog slide while Stella’s health has stabilized, I realized that I’ve lost my platform to talk about Jesus as often as I did. And I miss that! Granted I’m not on my knees with prayer request after prayer request anymore (you’re all welcome) but I certainly enjoyed this outlet to share the good things Jesus has done for our family amidst a difficult journey.

My hope for the blog going forward is as always, to keep you all posted on Stella's health, her sassafras personality and mainly all good and uplifting news. I love talking about my own kids, the heart kiddos I meet along the way, the families that inspire me but most recently, the families who are in the thick of it or who have lost so much and still choose hope. A good deal of the heart parents I meet are Christ followers but my go-to line I like to use when I'm feeling someone out is "I don't know how anyone does this life without Jesus." Subtle? Maybe not. But it almost always opens a a door to some sort of emphatic response of "RIGHT?!?" or ... a response along the lines "I should probably be at church looking into that." 

I'm so proud of Stella and grateful that God chose Adam and I to be her parents. I see His hand in giving her 2 siblings who are actually not that much older than her. When strangers marvel that we had 3 kids so close together I instantly joke that I don't recommend having 3 children in less than 2 years - but it has actually been a remarkable set up for team Stacy. The twins have the sweetest bond and have supported each other during a hard year, but they also love Stella in their own very unique ways. Connor worries about her, she is his number 1 prayer request and he asks questions about her health and the health of other kids with special needs in ways that blow my mind. Ellie on the other hand treats her like a peer, which for an older sister is kind of awesome (sorry Kiley, but I don't think we got there at ages 5 and 3). There is a level of respect that I hope and pray carries on as they grow older. 

In thinking back to my personal testimony, for the longest time I got everything I ever wanted. I got great grades. I got into the Colleges I wanted to go to, I got every job I ever applied for. I tricked the cutest running buddy in all of Quantico into marrying me and he has provided an incredible life for our family. And throughout those years I had my faith, of course, I've loved Jesus for as long as I can remember. But I'm going to get dark for a quick and final second. Because I think God was shaping me for this moment and phase in my life where I have an opportunity to keep talking about Him even when it doesn't seem obvious. I didn't sign up or choose this path. But unfortunately, as a heart parent, I think about losing my child multiple times a day. Every single day, my greatest fear is that Stella will get sick or her heart will fail. I've become a helicopter mom. She bleeds easily. I won't let her climb out of the car on her own because I'm afraid she will fall. If she sleeps thru the night I celebrate (it doesn't happen a lot) and then seconds later I freak out that something is wrong if she wasn't up her usual 2-5 times asking for me. If she coughs weird I panic. I take her to the Pediatrician for things I would ignore in my other kids. I check her pulse ox for fun. Parents aren't supposed think about these things. We aren't supposed to have friends (a lot of friends) that have lost their babies. This club sucks. And before I had a medically fragile kid that isn't something that crossed my mind. Ever. 

So here is my new intention. Every dark moment, every rough phase, I'm going to turn my eyes on Jesus. It sounds pretty simple but honestly, more than half the time (if I'm being really honest, almost all the time) I turn my eyes on anything that is a quicker fix. Binging a show on Netflix, a political podcast, a half xanax or glass of wine. Anything that is a distraction from what brought me here in the first place. But that's the craziest part! Christ brought me here. And some days I hate it and wrestle with it and don't understand suffering, and other days I feel like I would have held my own in the Old Testament wandering around the desert for 40 years waiting on Moses to figure out a way into the Promised Land.

Stella has brought me closer to Jesus in a way that I don't think would have been possible without the wandering. I assumed He was with me before, and I acted accordingly, but now I know He is with me always, and I want to live accordingly.  

Hebrews 12:1-2 
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

As always, thanks for keeping up with our story. I love you all! Below are some pics from the past 6 months including Stella's first day of school. 







1 comment:

  1. I hadn’t seen this post.
    Amazing Grace-that is what you are, sweet Kate.

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