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.

New life has bloomed here…

For anyone who grew up in a church where this song follows the benediction, you just broke into song.  Haha!  While we’ll look into that later, this post is about new life, new beginnings, and… wait for it… normalcy.  Yahoo!

I know I haven’t posted in several months.  Part of me has just been busy… the other part of me wrestled with the progression of this blog.  We had a wonderful holiday season AT HOME and have had just minor bumps in the road this winter.  Ellie’s pretty much been a hermit most days.  We have taken her to church maybe twice in the past three months… she goes on grocery shopping trips when we don’t have a nurse at home… she went to a Valentine’s event for our local Down Syndrome Association… she even went to the zoo with us once.  But she’s really not been out much this season because there are just too many sick people out and about for me to risk it with her. 

Since many of you haven't seen her in person in a while... she is getting bigger 

and rocks some pretty cute curly pigtails sometimes.

While we always have plenty of updates for Ellie, we’re also at a point in our lives where we just have a lot going on with all of the kiddos and I struggle to focus on just her with this blog.  I also have so much of my heart that’s in a happy place with her and wanting to share that sunshine with other families.  I’m not exactly sure what that direction looks like yet or how to keep this blog focusing on Ellie when there’s so much else happening in our household.  This is why I’ve struggled lately with posting… it’s ridiculous, really… but something that my brain has been keeping me from doing for a while.  I guess I’ll just go with the flow and see where that takes me.  On to general updates:

Lance just turned six and is one smart little dude.  He’s reading well and is obsessed with science and nature.  He’s likely the child that we have the most focus on right now, though.  As a family, we’re working through his ADHD diagnosis and trying find the best course of action to help him thrive.  When I used to joke that I “was too ADD” for certain activities… I had no idea how real and difficult ADD or ADHD were.  It’s crazy, y’all.  Of course, it’s nothing life threatening, just something we have to help him navigate.  The part of me that hurts the most is my own frustration levels with it.  There are things he does that make my blood boil.  Sometimes it’s totally his fault, other times I wonder how much control he has.  So my job (our job) is to do everything in our power to help him feel a sense of control over his actions.  We can see his outbursts manifesting in his relationships with others, too.  When he’s the aggressive kid (even if he’s tiny), it impacts his ability to make friends and interact well in a social setting.  That part hurts me, too.  Academically, he’s a rockstar (in my humble opinion, of course).  He’s doing well there and usually makes easy work of his homework.  Half the time, I don’t even have to read the directions to him because he is reading them to himself.  I don’t remember being able to read that well in kindergarten.  He turns everything into a math or science problem… and then tells me how things work (like gravity, or what stars are made of).  I’m amazed.  Now if that would just carry over to the social aspect of his life, we’d be golden!

Blowing out candles on his birthday cake.

Kaleb… he’s a sweetheart, but a soft heart.  He’s obsessed with taking care of his babies (stuffed animals) and being a superhero.  When he’s in a crowd, he’s often a dinosaur that roars at others… weird, I know.  He’s only four and I think he’s solid with his schoolwork, but there is a huge difference in the rate of absorption between our two boys.  Lance would count and write and identify all of his letters.  Kaleb doesn’t seem to be as interested with school.  He gives me daily updates on who he played with and what his snack was.  I think that’s fair for four, right?  He is upstairs right now wearing a hard hat and having a sword fight with a race track.  He’s pretending the lengths of track are snakes that are trying to eat his stuffed animals and he’s the zookeeper defending them.  That’s Kaleb.  His imagination is wicked vivid.

Peeking out from the top of his fort in the livingroom this week.

As many of you saw on FB, our little Bug took her first steps on January 16^th.  What a celebration this was!  We’re just pushing her more each day to get her form correct and get her to walk further and such.  We’re still battling storming episodes, but only when she’s sick.  They’ve always been idiopathic, so we’re not 100% sure what’s causing them, but we’re pretty certain it’s a combination of congestion, physical stress, and sleep apnea. 

On Thursday, I was working later and Brandon was catching up on school work.  All of the kiddos were in the family room watching a movie.  I went over to check on them and then into our room to see if Ellie was maybe sleeping by Brandon while he worked.  Brandon thought Ellie was with me.  I asked the boys where she was.  Lance shrugged without looking away from the screen and Kaleb said, “She went upstairs”.  What?  Brandon and I raced up the steps to see if she had, indeed, climbed the wooden steps by herself with no supervision… she had.  She went into her bedroom, closed the door, and started emptying her medical supplies all over the floor.  What a turkey.  She was rather proud of herself.  I think we won some kind of parenting award for that one, right?

In other family news, we bought some chickens.  I know… this isn’t news… but hear me out.  We have had chickens every year for quite some time.  The boys loved them and I loved to have them for two reasons: they lay eggs (and we eat at least 3 dozen of those a week), and chickens have always been calming to me.  If you’ve never sat and watched chickens for a while, try it sometime.  It’s really quite serene.  Now, when Ellie was little and hospitalized so much, we had no way of caring for our girls and had to give them up.  For the next two years, we went without chickens because we never knew what one week would bring from the next.  We were too preoccupied with what was going on with Bug to chance starting our little barnyard again - until now.  We finally feel like we’re in a solid place to start expanding our little family (in the form of animals… no more small humans).  So chickens are it right now.  Hoping to also add bees soon… who knows from there.  I feel like if we live in a farmhouse, we ought to have at least a few farm animals, right?  Chickens are a good start… a small celebration of stability.

We ordered our chicks online and picked them up at the post office.  Kaleb wanted them to ride next to him the whole way home.  We so missed the sound of chirping that filled the van.

Day 1:  we have 16 of them... and they're much bigger now.

That also brings me to a little, insignificant phone call I got about two weeks ago that really caught me off guard.  It was from Dayton Children’s and the woman on the phone was asking if she could pre-register us for Ellie’s ENT appointment on 3/1.  Of course, she could… but I was really confused.  I said, “Have you changed your policy on this or something?  We’ve never gotten a call like this before… we always just go up to the counter when we arrive and let them know that none of her coverage has changed.”  The lady said that if we hadn’t been seen in over 30 days, then it’s their policy to give a courtesy call like this.  HOLD THE DOOR – we haven’t been seen in 30 days?  That’s amazing!  That’s not happened to us before… thirty days without stepping foot into a hospital – yahoo!  I’m sure it was nothing to her, but to me… that seemed like a huge accomplishment.  Not only has Ellie not had to be admitted due to illness, she is now more stable and doesn’t need to be seen by her specialists as often.  Cue the happy dance!

And as for that appointment with ENT… well, we were finally given some sort of timeline for decannulation… and it’s very exciting.  Early in April we will go in and Ellie will get another sedated airway evaluation in the OR.  That night, we’ll be admitted and she’ll undergo a capping trial at night (we do this on the regular at home, so it’s not something new).  She doesn’t like it, though.  The next day, her surgeon will remove her trach.  If all goes well that day, she’s scheduled to undergo a sleep study that night sans trach.  This is a big deal, y’all!!  Again, if all goes well, and she’s able to get through her sleep study without her trach… she will likely be going home without it.  We’ve spent the past 2.5 years living the trach life… so I’m not even sure I’ll know what to do with myself… but we’ll be celebrating, for sure!  We’ll have to think of some way for y’all to join us in this celebration.  

We’re hopeful that the timing laid out works as planned.  If it doesn’t, well… waiting is nothing new for us.  There are a lot of “if all goes well” in this plan.  But it’s the first time we’ve had a tangible plan with dates and scheduled appointments to move in that direction.  If y’all can lift some prayers that we can do this #decan business, we’d be ever so grateful.

So as my daffodils start to emerge along the sidewalks, we celebrate new life, we celebrate unexpected little mercies, we celebrate normalcy (or our own version of it), we celebrate having a plan (even though we know it’s all God’s timing, really).  Celebrate with us, will ya?  And for any of you wondering about the title of this post and the song that goes along with it, here are the lyrics.  Pretty fitting for the road we’re currently on in this crazy life:

New life has bloomed here

God’s love has warmed us

Now the world calls us

To spread that love

God’s peace go with you

May it sustain you

And bring us together

To praise God again.

More on the “Now the world calls us…” part in another post… coming soon ;)  Until next time, friends, here are some pictures of some of our shenanigans over the past several months.

 This is exactly how all of our pictures with Santa look this year.  Awesome, right?

Christmas morning at our house

 

This is seriously how he ate his ice cream cone... and yes, 

he bit a giant hole in the cone 1st... it did not end well.

 The addition to Amos Memorial Public Library in Sidney is AWESOME!!  The kids love it.

Just before Inspired By closed their doors last month, we took the kids there to paint pottery.  Kaleb did an amazing job of spilling his glaze all over himself.  It washed out just fine.

Lance picked out a tinsy tiny reindeer to paint.  It's about the size of an eraser... but it's cute!

And if you happened to miss my post on FB about this, Ellie was featured on 22 different rotating billboards in the Cincinnati area in early February.  Doing our part to raise awareness for CHDs!