Wings Like Hers

This blog has been a source of therapy for me for almost three years now.  It's been the place where I can dump my frustrations and let them soar away on the prayers of those who read it.  It's been my outlet and also my way of sharing the joy our family has experienced through this.  Y'all get the scoop on God's mercies in our lives and certainly His miracles, too.

There was a day, though, when the thought of posting to this blog forever changed something in my soul.  We were in Boston and preparing for Ellie's second heart surgery.  Ellie was a very, very sick little girl at that time.  We struggled watching her battle each day, gripped in the depths of heart failure.  Her lungs were too heavy for her to breathe without constant vent support.  Even with the vent and several liters of oxygen, her oxygen saturation was barely above 70%.  She was blue and slept most of her days... she was exhausted and sweating even in a chilly room.  This was a new low for us.  Handing our child over in such bad shape (even when the surgeon had such a positive outlook) took its toll on me.  I found myself lying awake, thinking about the possibilities ahead of us.  The night before surgery, I prepared myself for two different blog posts.  One post involved our little caterpillar rising up with beautiful butterfly wings.  The other - angel wings.  To admit this today brings me to tears.  I hate that I had to think of a way to tell the world that our little girl didn't make it... but I had to prepare my heart for that because we knew it was a very real risk we were taking.  That part of my heart never really mended.  And I'd like to think there is a purpose in that brokenness.

I know I've said this before, but I'm adding to it today.  Ellie's first year was strictly survival.  We focused each day on the choices that had to be made to get her through to the next day.  There were many nights when we'd pray over her, begging her to "be here" in the morning.  And each morning, she'd get another pep talk to just make it through this day.  We didn't have the capacity to really FEEL any of it at the time.  We wept, but the heaviness of it all still wasn't there.  After her first birthday, I spent many months feeling all of it.  So her second year was spent living through flashbacks of all that the first year brought and finally feeling the crushing weight of it.  This process was awful, but necessary.  We were able to grieve for what had happened, but this brought with it bouts of depression and paralyzing anxiety.  Once through the worst of that, we've been spending her third year of life trying to decide what to DO with all of this.

We have this experience that's left its scars, but certainly was full of joy and stories of overcoming obstacle after obstacle and living with a real life miracle that we get to appreciate every day.  Not everyone gets an opportunity like this.  But again, what do we do with it?  Well, over the past six or eight months, I've been struggling with how this manifests in our lives as we move forward.  I think we're being called to reach out to others that we share this unique experience with.  We need to offer them hope.  We need to offer them light and encouragement.  We need to let them know that they are not alone and that all of the things they are feeling are normal.  We need a way to communicate our love and support to other parents who are in the middle of their nightmares.

One of the first things I did to embark on this was to sit with a friend of mine as her daughter underwent open heart surgery.  She didn't know I was coming, I wanted to stand in the gap for her just as a friend of ours in Cincy sat with us during Ellie's first heart surgery.  (Looking back, I probably should have told her... warned her that I'd be barging in on such a heavy day.)  As I drove down to Cincy, I had a small panic attack.  Tears poured from my eyes and my body literally shook.  Anxiety was eating me alive.  I called Brandon when I was about half way there sobbing into the phone, "What was I thinking?  I am not going to be any help to them today.  I can't face that waiting room again."  As I turned that familiar corner towards the hospital, I was still shaking.  "Get a hold of yourself, Jackie," I said.  By the time I made it up to B3, the surgical waiting area, I wasn't crying anymore.  I waited around for a bit, thankful that the family I was going to wait with didn't have to wait in the private room we had, at least.  I sat for a while waiting to see them before texting my friend.  She said they were the longest surgery of the day and were given the private room.  CRAP!  Seriously?  That room?  So I went back into the room that held so many horrible feelings for me, put a smile on my face, and hugged my friend as she waited for her sweet girl to come out of surgery.  I didn't mention any of my own battle to her... the last thing she needed was someone to fall apart on her that day.  This day was about her family and her daughter... not the nightmares I still held on to from mine.  Surgery went beautifully for her little girl and I left at the end of that day feeling... refreshed.

I had gone for her, of course, and I had no idea that I was still battling these demons deep down. I had no idea it was going to be so hard, but spending the day with that family helped me, too, and that was an unintended benefit of my trip.  I came home happy for them and with much less baggage.  This solidified my plan to reach out.  I needed this just as much as the families I hope to help.

Again, what does this look like?  I'm not 100% sure.  But for Ellie's first heartiversary, we bought her a crocheted heart plushie with stitches and a band-aid on it.  She loves it and it's a sweet reminder of how beautiful her mended little heart is now.  We'll start there.  We have some more of these on order and plan to make care packages for families in the CICU in Cincy and Boston to let them know they are loved.  We're plugging away at buying things to put into these baskets/bags.  They might not be much this year, but in years to come, we hope to continually grow our outreach.  We have other things we'd like to do as well and I'm thinking of ways to put away funds to continue to do this.  Part of the plan is to do more than I think I can so that this outreach is truly felt in all aspects of our lives.  This sounds odd, I know, but I found out in November that pushing myself far outside of my comfort zone was crucial.  No matter how large or small the care package is, I want these families to know that they are not alone, they are loved, and their journey is beautiful.  What do we need from others?  Prayers.  Please say some prayers that this mission of mine will continue to grow.  I know this is something that my heart needs, as well.

We don't plan to do a fund raising drive for this really, just navigate it as it flows and see what the future holds.  I just set up a FB page for it, appropriately named Wings Like Hers.  This will give us a space to keep you all updated on how things are going and help keep us accountable to this mission when we have other things begging for our attention.
As I forecast to the future of what this looks like, I'd like to have a place (likely this Etsy store) where we can make things to sell with proceeds going towards our cause.  There are only a few things there now, not sure what we'll make for it going forward.  The butterfly image above was something that I created from a crumpled up watercolor painting that Lance made.  When I made this butterfly for Ellie, I felt like it was a good representation of the image I'd had in my head of her gaining butterfly wings.  Out of the crumbled mess that we'd been given, something beautiful emerged.  I think I'll use this as my logo for Wings Like Hers.



I think this project is something that maybe will grow with Ellie, too.  A way for her to make things in the future that can maybe contribute a little to her livelihood as well as continually give back to this community we're forever impacted by.  Again, this is me just throwing out thoughts to you... but maybe hoping that, with prayers from others, we can launch this outreach in 2017 and maybe grow it in future years to reach more than just Cincy and Boston.  Who knows what it will look like down the road?  This is something that's been heavy on my heart for a while now, and something I feel vulnerable about sharing.  But this is my passion.  It is my love.  It is my mission.  Please pray that the fire inside of me continues to grow and that I'll find the right pieces to put together to make this project something that blows my mind and warms the broken hearts of so many others.  For a while, I've had the following quote on my desk: "Set a goal so big that you can't achieve it until you grow into the person who can."  I'm working on that growth right now.  Thank you, sweet friends, for following along.  Thank you for your prayers and for allowing me to be vulnerable.