Tuesday, December 29, 2015

One Year Later

A year ago today I sat in our room in CICU and anxiously awaited our meeting with the surgeon.  I had my little notebook ready with my list of questions.  I sat next to Ellie and gave her a little pep talk… the kid hadn’t been awake in nearly a day, but I was optimistic.  She was going to come through this surgery in two days with flying colors and we were going to move on to step two and step three and we were going to go home and yadda, yadda.  That was my plan and that’s what I was ready for.  Dr. Morales walked in and sat across from me (have I ever mentioned that he only came in and shared good news with us once?  Just once.)  Today was not that day.  Today was a day when he’d come in and talk to me and the very depths of my soul would pour out into a puddle on the floor in front of me and I would sit paralyzed in fear for what felt like an eternity… I'd stare down at my questions which were no longer relevant and then over at our daughter and fumble for my phone because I had to make an impossible call to my husband.  A year ago today was the worst day of my life as a parent… hands down.  It was the day when our surgeon walked into our hospital room and essentially told me that there was little hope for our baby girl.  He said that she was remarkable and exceptional in the worst possible ways.  That her little body was doing things that he’d never seen before… that “the likelihood of mortality is quite high, really”.  Those were his words.  Those were the words we had to process just a day and a half before her first major heart surgery.  Ick.  And I tried to find hope in the midst.  I said, “Well, if this doesn’t work, she can have a transplant, right?”.  No.  If this didn’t work… she couldn’t have the next step in her single ventricle repair, and without that, she couldn’t have the second step.  With the complications she was experiencing, she absolutely would not be eligible for a transplant, either.  At this point, our sweet girl would have been left to live what little life she had left with the very broken heart she had.  God had other plans, of course. 

I called Brandon and gave him the news.  My voice trembled through it all.  He fell silent on the other end and then began to weep and I could hear how this news broke a part of him deep inside.  To be honest with you all… that part is still very broken to this day.  I called my mom, too… but I couldn’t talk beyond that.  I spent the next day sobbing, listening to Matt Hammitt’s “All of Me” album, praying and crying out to God.  That night, out of complete exhaustion and total desperation, I took to this blog.  I wrote the “When being exceptional is a bad thing” post.  Thanks to Team Ellie Bug, that post remains the most popular post on this blog.  It was shared hundreds of times and there were thousands and thousands of hits to the blog in the 24 hours leading up to Ellie’s 1st heart surgery on New Year’s Eve 2014. 
When they wheeled Ellie off to the OR that morning, I wasn’t sure if we’d get to see our baby girl again.  I was hopeful, of course.  I told them to bring her back to me… but I was so very afraid.  

When we arrived in B3 (the surgical waiting area in Cincinnati Children’s), the receptionist said that Dr. Morales had quoted our surgery at 600 minutes (ten hours), which meant that we’d be in the private waiting room.  Let me explain that only the longest surgery of the day gets the private room.  Our surgery was only supposed to be two to three hours.  At first, I was totally confused.  This was nice, because it meant that our family could all sit together and have some privacy… but later I realized that maybe our surgeon didn’t think Ellie was going to make if off of that operating table that day.  I think he over-quoted her surgery (by a LOT) because he thought we’d need that private room that day.  One of our best CICU buds, Jameson Locklear (Abby’s dad) popped into the room to wait with us.  This was one of the nicest things anyone ever did for us while we were in the hospital.  He’s been in this position with his Aberdeen.  He knows what it’s like to wait for your child while they’re in surgery… he knew how serious Ellie’s condition was… and he stood in the gap for us that day.  This is why these people mean so much to us!!

A few hours later, Dr. Morales came into that private room with a look on his face that I can only describe to you as shock.  He was shocked!  Ellie blew him away with how well she responded to surgery.  That’s my girl!  Heart surgeries are rated on a scale of 1 to 6.  The PA band surgery she had on New Year’s Eve last year was a 4 on that scale.  A heart transplant is a 5.  What Ellie had done in Boston in May is a solid 6.  What happened on New Year’s Eve last year was nothing short of a miracle for our family.  Our little girl was incredibly sick… so sick that a world-class surgeon was pretty certain that she wasn’t going to make it off the table.  She shocked the hell out of him.  That’s how she rolls! 

Can I tell you how thankful I am that December is almost over?  I never like to wish time away… but the first 4 months of Ellie’s life were really hard months.  As we lived those days, we had to mentally process and move forward.  We had to take it in and go, go, go.  This year, I was living with constant flashbacks of those memories.  On Thanksgiving I remember thinking, “this is when we finally had a team from neuro in our room to diagnose storming” and on 12/3 it was “this was the day of her first heart cath/ MRI/ scoping procedures".  December 12th marked her first major surgeries when she went in for her g tube and her trach.  Big stuff.  The first four months were hard... but December 2014 was HUGE.  December 2015 was so much fun.  Ellie is a riot these days.  She’s stubborn.  She’s learning to try so many new foods.  She’s playing with her brothers and she loves that they’re not so good at being gentle with her – you can see in her eyes that she so badly wants to wrestle with them.  She spent Christmas at home (hallelujah!) and found out that wrapping paper is way more fun than presents.  She gets to have family movie nights with us and is practicing standing in therapy.  She’s learning to army crawl across the floor and when I had her in church this weekend (for the first time since October), she was so full of it.  She’s beginning to act more like a toddler than a baby and I’m in love with this stage.  She loves to make faces at herself in her mirror and bats her eyes to flirt.

I look at her now and I’m flooded with thankfulness.  Thankfulness for never giving up hope.  Thankfulness for all of you who have lifted her in prayer since day one.  Thankfulness for the countless people who had helped medically, professionally, spiritually, financially, personally along our path.  The days have been long at times – but 365 days later – gosh, what a difference a year makes.  What a joyous place we're in now.  This place still has its struggles… it still has hills and valleys, for sure… but how do you measure the progress made in one year??  Now I want to break out into song… “five hundred twenty five thousand six hundred minutes” (that’s from the musical, RENT, for those of you who don’t know).  I’ll just leave that right there for ya.


Much love to you all.  I hope you all had a wonderful Christmas.  I hope you were able to spend time with the ones you love and hope you got to fill your bellies with something delightful.  I hope you have a safe New Years.  Nothing will ever compare to the celebration we had on New Year’s Eve of 2014… but we’ll be celebrating as a family and hope to have a safe and happy New Year’s Eve of 2015, all the same.  Stay safe out there… and if you’re a fellow Ohioan, try to stay dry, too.  Ick.

A close-up so you can admire her curl over her ear :)  When she's tired, she sucks her thumb and twirls her hair... it's pretty much the cutest thing ever.

Rocking with Grandpa on Christmas

Showing her older cousins how this keyboarding thing goes

Giving me her stink face while she practices standing with Rae.  
Notice the shoes, please... they're adorable!

Showing Great Grandma how much she likes her new books

Cuddles with Papaw on Christmas... with Kaleb being ridiculous

Tuesday, December 8, 2015

Stand by me

These past few months I’ve found myself heaving towards things that I haven’t been drawn to in a long time… things (errr… people) that I should have been drawn to all along but I’ve really not treated with the kind of reverence that I should have in the past.  See, I was raised with parents who were truly Heaven’s manna for each other.  They’ve worked together since they were in their early 20s and they’ve spent nearly every waking hour with each other through their entire marriage.  They seemed to be all that each other ever needed in life.  That’s the example I had before me and I thought that was how the relationship world worked.  It’s worked beautifully for them – I’m not blaming them – good golly… they set a beautiful example for me, I just approached relationships with a “go all in” attitude… which wasn’t exactly right for me.  So from the time I started to have real relationships… say, about my sophomore year of high school, I put my significant other ahead of my friends and let those friendships subside to these relationships that I was forming.  What did this make me?  A crappy friend.  It did.  Plain and simple. 

I love my husband dearly, but I’ve expected him to fulfill all of the needs I have from a relationship standpoint – I mean, aside from the super strong bonds I have with my immediate family.  Ladies… that’s just not possible, right?  Thankfully, during this very difficult last year of mine, these lovely friends in my life have shown me something that I surely do not deserve.  Grace.  I have not done a single thing in the past, oh, ten to twelve years to deserve the kind of friendships that are still being extended to me by the group of girls that I’m happy to call my friends (new friends, old friends, work friends, church friends, RMH/CICU friends... lots of rock-my-face-off awesome people).  But by God, I’m so thankful for the grace they’re giving me.  I’m so thankful that I have people to turn to when this business of marriage and motherhood and life is just… whoa!
 
Back in October, I had a girls’ weekend with my sisters (when I say “sisters” this always includes my sister-in-law) and we had some great bonding time… some time to relax, enjoy some laughs… let go of frustrations… and just draw nearer to one another.  In November, I had a girls’ night with friends from high school.  It was downright hilarious.  We spent hours catching up… mostly talking about the struggles and how important it is to be real and honest and raw about life and motherhood and marriage.  Since then, I’ve been reflecting on old relationships, relatively new relationships… ones from church and work and the RMH and wherever and gathered some thoughts.  Here is my best effort to extend some of that grace to you… in the most important time of year for grace and peace and stress relief.

First - life is hard.  Marriage is hard.  Parenting is hard.  Anyone who tells you differently is lying.  There are wonderful things, absolutely.  Don’t think that it’s all a drag.  It is all worth it.  Life is beautiful and wonderful… but it’s also messy and there are hills and valleys.  And sometimes those valleys can seem never ending and sometimes there are lakes where you nearly drown in those valleys… sometimes you get stuck on islands in those valleys… and if you don’t have someone that paddles out to your island, you have no idea that there are even others out there who understand.  Okay… let me dive in a bit.

For me, I personally loved being pregnant (I'm not now... sheesh... NO)… but the first trimester and the last month of it were the absolute worst.  There… I said it.  When I was about to have Lance, my cousin asked me if I was going to nurse.  I excitedly said, “Yes”.  She said, “Awesome.  Just know that you’re going to want to give up every single day for the first month.  Once you’re past that… it’s great.  But the first month is terrible.”  I couldn’t believe that she said that.  I thought, “how dare you make it sound so awful when it’s this amazing natural thing?”  Then I had Lance and started on the journey of breastfeeding.  Know what?  She was dead right.  I cried and wanted to quit every… single… day.  But her honest words hung out in the back of my mind.  Finally, at about three and a half weeks, the kid figured it out and nursing really did become an enjoyable thing for both of us for the next ten months.  There is no doubt in my mind that I would have thrown in the towel after the first week had she not told me how awful it would be, though.  All I had heard from other people was that it was great and natural and this perfect bond.  Lies. 

When I had Kaleb, I thought, “We’ll be fine… we’ve done this before… how hard can it be to bring home a second baby?”  Let me tell you – REALLY FREAKING HARD!  He was almost three weeks old and I was completely losing my mind.  People would come over and smile and hold him and I would smile and act like we were doing great.  I barely scraped myself together to get out of the house to make it to a friend’s bridal shower dinner.  I know I had milk stains on my shirt and unbelievable bags under my eyes.  I tried to look put-together, though.  Tried to put on the, “things are great” look.  One of my friends said to me, “It’s really hard, isn’t it?  Bringing that second baby home?”  Ahhhh… finally… someone lifted that weight… someone understood and it was okay to be broken and messy and not have it together.  “YES!” I said.  What a relief. 

It’s small things like these in my life that I remember so vividly where people have extended grace to me in the simplest ways.  When I’ve gone out in public for the first time with a new baby and people have said, “You look great!” despite spit up and milk stains on my shirt.  It’s the time when we’d just met our new pastor last May and I stood in the aisle with Ellie (and all of her equipment), shaking… ready to make a trip to Boston that (we desperately hoped) would save her life and he simply said, “let people see your pain”.  Boy… he didn’t know how much I would wear this mess on my sleeve, did he?  Ha!

My point here is, I’m going to do my best to be that transparent person for others.  If you’re looking for the friend who has it all together… I’m not your girl.  If you’re looking for the friend who has a family that functions perfectly – not her, either.  If you’re looking for advice on how to have a rock solid marriage, I’m probably not the best friend to ask.  I have a lot of fun with my kids, but I yell, too.  I cuss.  I have thoughts that cross my mind that would make about anyone blush… and I sometimes need medication to make it through the day (okay… like, always).  I get depressed… I get angry… I’m human, y’all.  I also laugh.. like, always… sometimes until laughter almost runs down my leg.  (dang, kids)

But hey… if you’re the mom who’s in Walmart with a hat on because you haven’t made it into the shower yet… I’ll give you the “I get it” wink.  If your child is having an epic meltdown, I may even touch your arm and say, “I understand”.  If you’re weeping at the altar at church… hey, I do that all the time.  If you’re having a nervous breakdown – I get that, too.  If you’re having an amazing day, I’ve actually had plenty of those, I like those.  Share your joy too, of course… geesh… we’d be a hot mess if people didn’t share that beautifulness every day.  But if you haven’t experienced any of the messy hard stuff in your life… we can’t be friends.


For real, though… at a time of year when everyone else wants to act like life is grand and they have so much going for them and they’re uber generous and yadda, yadda, yadda.  I get it that most of us are just getting by.  Just chugging along.  And thanking God every single day for the people in our lives that show us His grace when we don’t deserve it.  If it helps to have someone to just stand next to you and be a beautiful mess with, I’m there for you.  Go out and share some love today… make some plans with old friends… perform some random acts of kindness (that you DON’T share on FB).  Make someone’s day.  Trust me, it’s the little things you do… the things you likely don’t even remember doing or saying… that make the biggest difference in the lives of others.  Kindness matters.  Thank you all for being there for us.  A big, HUGE thank you to all the friends who have not given up on me even in the days/weeks/months/years when I was a crap-tastic friend in return.  I’m deeply sorry for that and I look forward to spending the rest of my life enjoying your raw, honest company and being the friend I should have been all along.  Merry Christmas!  

Seesters

Old Frans

PS - Our Buggles is amazing right now - healthy and adorable.  I'll post on her soon, I promise.  Emotionally, these last months have been really hard for me... we're rounding anniversaries of some of our hardest days with her (well - except for the whole month of May).  This Saturday will be one year since she got her trach and g-tube.  December 2014 was awful.  December 2015 is pretty awesome so far.  You probably won't see her out in public much at all until cold/flu season is over... I think that's the primary reason we've been able to keep her home & healthy for so long... we just can't risk it.  I promise to post something soon... just know that she's doing well and the boys are doing well - stressing their momma out, but that's their job.  :)