My 2017 Playlist

A few years ago, I wrote about my Top 10 Playlist.  Today seemed like a good day to provide an update, so here goes...

10. Redneck Girl - Bellamy Brothers
Am I a redneck? ... hmm, I don't think so, but I'd sure like to be one when I grow up!  "Her hands are calloused, but her heart is tender..." yep, that's exactly who I aspire to be!  And, honestly, I'd be okay with having my name on the back of my belt, too!

9. Fishin' In The Dark - Nitty Gritty Dirt Band
Luke Bryan may cover this song now, but that's not why it's a favorite (although it can't hurt).  Falling in love is such a special thing... the idea of doing it in the summer under the stars while flirting and fishing is so sweet.

8. Pickup Man - Joe Diffie
There are so many deep and romantic songs on my playlist these days, I've gotta liven things up every now and then, so Pickup Man has earned a prime spot on my list of musical must-haves... especially if my Pickup Man's rolling a shiny black Duramax on 35's... (bonus points for hauling a livestock trailer, full of Jerseys, of course!)

7. Here's To The Farmer - Luke Bryan
Talk about an uphill battle, 2000 acres of beans and cattle, but he don't ever get rattled, he just goes till the sun goes down. Hydraulic fluid on his jeans, red-dyed diesel and ten rows between a cold one on the porch and a good night's sleep, ya'll hold 'em up with me now.  Here's to the farmer that plants the fields in the spring, that turn from green to that harvest honey. Hold one up for the banker downtown that got him on his feet with handshake money, here's to the farmer's wife that loves him every night. Raising a son, raising a daughter, they gather round the table send it up to the father, somehow they get closer when times get harder, here's to the farmer!

I don't need to say much about this song as it speaks for itself.  Thanks LB for this tribute to my favorite people on earth!

6. Austin - Blake Shelton
I'm a hopeless romantic and even if Blake Shelton was rocking a mullet when he released this song in 2001, it's still one of my favorites! 

5. Shut it Down - Luke Bryan
She likes to watch him out the window, going round in circles under the sun. Something 'bout a man on a tractor, with his hat on backwards, looking forward till after he's' done. He keeps his eye on the back porch, she walks out, kicks off her shoes, bare feet standing in the short grass, sweet iced tea in a tall glass, judging by her smile, it's about time to shut it down.  A lotta work left to do, the sun's still out, but any hay to make can wait for now, throttle back, drop the plow, shut it down...

This story.  We all know that when the weather is right and there is work to do, you are obligated to get it done (especially when your livelihood is dependent upon it).  So when he "shuts it down" to take a break and act on other priorities... um... I'm blushing over here...

4. Mixed Drinks About Feelings - Eric Church
My head is spinning, my resolve is reeling, I can tell by the heavy in my heart, I'm going down soon...

my figured out has never been so confused...

it's either get used to this dread or the cold spot in our bed...

The crossroads is almost too much to bear in this song, but there's so much feeling here that it's one I can't shake.  Thank you, Eric Church for this emotional and lyrical gift.

4. Pray About Everything - Luke Bryan
Sometimes in life, all you can do is pray.  I love that LB reminds us of Philippians 4:6-7 because prayer is the only way to find peace in this crazy world.  

3. Round Here Buzz - Eric Church
Under that high school bleacher, I drove that preacher's daughter crazy. Her momma was my homeroom teacher and her dad was hell bent on saving me.  Yea, I'm sure there's higher highs where the high riser's rise, but me I'm gonna sit right here tonight and catch me a round here buzz cause you ain't round here none...

Scandal and regret set in a small town combine for the perfect song about real life. Literally, I can't stop singing it.  The album Mr. Misunderstood dropped on November 5th, 2015 and over two years later I still find myself singing this when I wake up in the mornings!

2. Forever and Ever, Amen - Randy Travis
There's just something about Randy Travis' music that takes me to a time when life was simple and free and good.  For everything good about his music in it's digital format, it's value increases ten-fold if you've listened to it by cassette tape!

1. Amazed - Lonestar
This song is timeless and it almost makes my heart skip a beat; It's one that inspires me and that I've loved for more than half of my life.  I will carry this song (and the warm fuzzies it gives me) with me in my heart wherever I go!

Now, if someone would just write me a song about loving on some Jersey cattle, I'd be in heaven!

A hole in my heart

Today is October 26th, 2016. 

Matthew is now five and Luke is three, so I've celebrated the actual birth of both and a combined eight birthdays between them.  Each of those celebrations has been so meaningful to me as their mother as an opportunity to celebrate their lives, accomplishments, express how much we love them and really just to thank God for sharing them with us. 

Four days ago, I turned 35.  Although Dustin prepared a beautiful dinner for me, complete with gourmet cupcakes from a local bakery, I was able to visit with my sister and my mom and brother took me out for dinner and then a little shopping spree, I didn't hear from my dad.... 

Each year on my birthday, a part of me, deep down inside always feel a sense of emptiness around the raw fact that my dad doesn't celebrate me.  Or maybe it's even deeper than that, it's probably more along the lines that he doesn't even acknowledge my existence.  Most days I'm able to bury the hurt and loneliness in that special place for parents that he's never inhabited, but each year on my birthday (and especially since I've had my own children), I just struggle with how little he's ever made an effort in my life.  It's so hard for me to fathom a time when I wouldn't go out of my way to tell my kids I love them and I can't understand how he could just forget about me everyday, but even more so on the one day of the year that I would assume he might be even more called to reflect on the day I was born. 

Throughout my lifetime, my dad was the most involved when I was a young, school-aged girl... a time when I recall him picking me up for more than half of his court ordered visitation weekends.  Many of those memories were tainted however by the fact that he usually would have a new girlfriend or the two times that he showed up with a new wife - the first was "Brenda".  They weren't married long, but she had a baby girl while they were married - he told me that he wasn't the father.  Her name was Leann... I've always wondered if she was really my sister.  After he and Brenda were divorced, I believe that Brenda may have given her up for adoption...  There was one time when he took us on his own to fly kites and another when he took us sled riding at some point before "Diana".  When he married Diana, his 2nd wife after my mom (4th wife in total, but one that he's been married to for over 20 years now and whom he had another daughter with... a half-sister I barely know named Chelsea) is when he'd pick us up more regularly for maybe five years or so, but when my mom, sister and I moved about an hour and a half from him when I was in 9th grade, we rarely saw him... probably fewer than 5 times per year.  I began to see him more frequently when I started college about 20 minutes from his house, but seemingly only because I made the effort to go see him and our relationship sort of ended my junior year in college when he said some really hurtful things to me and we never completely made amends.  As I reflect on our history and the significant amount of baggage in our relationship, I truly believe that Diana was a big part of what went wrong between us... there were so many times that I caught her in a lie as she relayed information to my dad, times when I found letters she'd written to her friends portraying my mom in a negative light and other instances where she worked hard to manipulate the situation to make others look bad and attempt to inflate her position.  I didn't invite them to my wedding because I couldn't envision him walking me down the aisle... especially after so many hurt feelings, lack of apology or even a willingness to have a real conversation about what went wrong between us so we could move forward with even footing. 

Despite all that's happened, I wish things could be different.

I wish that he'd pursue me as his daughter... someone whose opinion he held in high regard.

I still wish he'd sweep me off my feet as every daddy should do for their little girl - ride in on his white horse and rescue me from the loneliness that his absence has created in my life.  In my dreams, he would have picked me over all of the other women he's chosen, even if it would happen just once, when the circumstances were important to me.  That's a tall order for someone who doesn't even think of me on my birthday. 

The only place I know to go from here is to trust in my Heavenly Father.  To know that He has a plan for my life - one that I don't have to understand, but one that I have to trust is meant for me.  Maybe knowing the sort of sadness that abandonment can bring will be the catalyst in pushing me to always let my boys know how much they mean to me and more importantly to always make the effort to help them achieve their dreams.  Understanding the way an insignificant father figure can impact a child's life helped me to be a strong supporter of Dustin taking on a vital role in raising Matthew and Luke, one that resulted in me pushing him to be a stay at home father for over two years after Luke's open heart surgery (a role that I selfishly wanted for myself). 

This life lesson has taught me that mothers and fathers are equally important in the lives of children, regardless of whether they're babies, adolescents or even grown adults with children of their own.

Update - October 19th, 2018

Well, it's been almost two years since I wrote this and nothing has changed.  The weeks leading up to my birthday always have me reflecting on my dad.  There was a time when he'd at least send me an annual birthday card; typically, it was one of the few times during the year that I'd hear from him.  It makes me almost cry to think about the number of cards that he'd misspelled my name on - it's "Kristin",  but it wasn't uncommon for him to write "Kristen" on the front of the envelope.  It would make me so mad that he didn't know how to spell my name right.  As a kid, the bicycle license plates, keychains and Christmas ornaments I understood, my spelling was lesser common than the more popular version spelled with an "e", but considering he was a party to naming me, it would just piss me off more with each passing year as a teenager and young adult. And as I grew up and the interactions became fewer and farther between, it would really irk me that the only communication attempt he'd ever make was on MY special day... a day that should have been fun and celebratory always ended with me crying as I'd walk back to the house from the mailbox with something from him; a reminder that I was only worth a stamp once a year as far as he was concerned.  I guess on one hand, I could have been encouraged that he remembered me at all (it's been almost a decade now since I've gotten even a card), but instead it just felt like he was intruding on my life, one that he didn't know a thing about... like what I did for a living, my favorite color or favorite food, the kind of vehicle I drive, my hobbies or the musician that I've seen live almost 20 times. I remember one day in my mid-twenties when I was travelling for work during my birthday - that year he happened to call me instead of sending a card (it was probably the only time he called me that calendar year)... I remember being out to dinner with co-workers when I saw his name on my caller ID and my heart started racing; I just knew that I couldn't answer him in front of other people and expose my vulnerability to them... when dinner was over and my co-workers were heading to the hotel bar to continue the fun, I went back to my room. I listened to his voicemail and cried because I wanted more than just a voicemail on my birthday. The sadness overwhelmed me that night and I remember laying in my hotel bed crying myself to sleep.  It was my 26th birthday.

This year, [I think] my dad is 66 years old. We are so detached from one another that I don't even know where he lives anymore.  A few years ago, he and his wife sold their house Southwest of Columbus and I believe that he built a new house in West Virginia, but I don't know if that's actually true as it came to me as secondhand information and not directly from him.

I wonder if I'll ever see or speak to him again? 
Will one of us die without us ever having a relationship?  If so, will the other regret it?
Why, when I think I've moved on, does he still make me feel so vulnerable?
Are my perfectionist tendencies my subconscious way of trying to be worthy of love? Good enough?
Can I overcome him enough to pass on the characteristics of healthy relationships to my kids?
So far I've only told my kids that they don't know their grandpa because he "lives far away" - when will the right time come to share more?

I recognize in my self that I have a really, really hard time trusting people - even though I want to, the inner circle of people I truly let myself trust is very small.  It's just so hard for me to open up because my life experiences have conditioned me to believe there are very few people that I can be honest with, vulnerable around and reveal all of myself to. And when I extend my trust and it's broken by someone, even though I may have forgiven them, I can't think of a time that I've ever been able to fully overcome the prior breach to regain the same relationship we'd had previously.  If my dad ever reached out to me in the future, despite my desire to know him - I don't know to what extent I'd ever be able trust him.  And I'm not sure that he'd respect that - I think he'd want to pretend like we'd never skipped a beat and I think I'd feel so cautious about trusting him that it wouldn't feel right to me unless we went slow. 

"Uncovering" Talent

I read an article today on leadership published by Deloitte University’s Leadership Center for Inclusion entitled Uncovering Talent: A New Model of Inclusion.  The paper was written with the corporate world in mind but as I read, I found that their model also applies some to my life as a mother to a son with Down syndrome.  The basic tenant of the article centered on a term called “covering”.  Covering is defined by the concept that individuals with known stigmatized identities made a “great effort to keep the stigma from looming large”.  One of the examples cited by the authors was about how President Franklin Delano Roosevelt ensured he was always seated behind a table before his Cabinet entered.  President Roosevelt was not hiding his disability – everyone knew he was in a wheelchair.  However, he was covering, making sure his disability was in the background of the interaction.

The article made me ponder the concept of “covering” in regards to raising a child with a disability, particularly one with Down syndrome (Ds)… what is it about being “different” that people don’t like?  I often find myself reflecting on what it would have felt like to have had a child with Ds born in an earlier decade… a time when my sweet boy would have been called an ugly term like “mongoloid” or an “imbecile” by those closest to us – our friends and family… a time when our trusted doctors would have suggested that he be segregated from our family and institutionalized so we weren’t “burdened” by his differences… a time when he wouldn’t have had the right to a meaningful education provided by educators, some of whom would have likely been neighbors within our own community.  Just think about how parents during those times were required to “cover” for their children because our society was so incredibly far from the concept of inclusion… I’ve even heard extreme stories about how some families would lock children with Ds in their bedrooms when they’d host friends and family so others wouldn’t have to “deal” with them.  I’m glad I live in a different world today when it comes to raising a child with special needs.   

Recently I had someone tell me… “I applaud you for how you and your husband care for your son [with Down syndrome], it must be a lot of work”… my response was “It is a lot of work, but its no less work than it takes to raise our typically developing son, it’s just that we’ve had to focus on different things.  Regardless of how much work it is to be a parent, raising any child is truly a labor of love and I wouldn’t trade either of my children for the world.”  The joy that I derive from even the most insignificant moments of life with my kids is unlike anything else I’ve ever experienced… both of our kids bring different personalities and strengths to our family and the way they complement one another has been an amazing gift from God that touches my heart each and every day. 

For different reasons over the last few years and on a constantly evolving continuum, I’ve pondered the idea of inclusion for children with special needs amongst one another and also amongst their typically developing peers.  The more I’ve learned, the more I’ve felt moved to share the value of inclusion for children like Luke.  Although I didn’t know there was a defined method to uncovering talent by utilizing the axes mentioned below before today, for quite some time now, I’ve been working in an attempt to improve the environment for inclusion when it comes to Luke and how he’s received by others.   

The concept of “covering” is further defined within the article above along four axes amongst which individuals can cover:

Appearance… early on Dustin and I recognized the fact that Luke having Ds would never be a secret… from the moment that he entered the world, his physical features would always be a tell-tale sign to those who looked at him.  It doesn’t mean that he’s any less beautiful, just that while he closely resembles his brother, he also has some subtleties that align him with others who are affected by Ds.  When it comes to mannerisms, Luke has already displayed a natural tendency for affection, especially when it comes to sharing the most incredible hugs and the kid has a strong preference for music… any and every beat he hears seems to overtake his soul and results in bounces, sways, head bobs, rhythmic claps and any other way he discovers to express his particular groove.  I can see how the intensity he feels towards affection and music could possibly be overwhelming to some and while I think it will be important for us to teach Luke how meaningful it will always be for him to be true to himself, there is also value in managing your own personal space and the personal space of others.   

Affiliation speaks to the desire to hide a true identify and a related attempt to negate associated stereotypes.  What I’ve found interesting about the common stereotypes connected with Ds is that they are just that… stereotypes!  One of the best experiences I’ve had as a mother to a son with Ds is watching him exceed the limits that outdated stereotypes have placed on him and others with an extra 21^st chromosome.  There is no doubt that Luke has exhibited delays in many areas, some of which could even be defined as significant delays when you compare his progress to others his age on a typical developmental chart, but Luke is ABLE and in a positive, supportive and inclusive environment, Luke will succeed and will maybe even exceed the limits placed on him by others. 

Advocacy… I’ve been fortunate to have joined the ranks of special needs motherhood behind decades of prior parent advocates… others who have paved the way and stood up for the rights of their loved ones affected by a disability or delay.  It’s important to me to advocate for equality and inclusion and I’ve been incredibly blessed with friends and family who have embraced our efforts… our family even had over 20 people drive to Cleveland this past summer to join us for the annual Buddy Walk to support Down syndrome in our community.  I had a Facebook friend who shared nearly every one of my 31 educational tidbits about Ds recently during “October is Ds Awareness Month” and I can’t tell you the number of people who have told me they have a heightened awareness for Ds now that they’ve met Luke… I pray that their interaction with Luke will inspire them to be his advocates as he grows older. 

Association with others who are parents to young children with Ds or those who are parents to children with other special needs has been, at times, the lifeblood that’s sustained me when the goings been rough.  From a personal perspective, early on in our diagnosis, association with others played a key factor when it came to understanding and accepting the role that Ds would likely play in our lives.  Support from others who have stood in our shoes has been invaluable in knowing that we aren’t alone on this journey!!

Mommy, that girl looks like my brother, Lukie Dukie

It happened.  Last night, Matthew recognized that his brother looked “different”.   

Over the last few years I’ve become friends with dozens of others mothers across the country to children with Down syndrome (Ds)on Facebook.  I’ve also “liked” and “joined” dozens of pages and groups specific to Ds.  These resources have been invaluable to me as I’ve tackled the learning curve associated with becoming the mother to a child with special needs and an enormous side benefit has been the presence of their beautiful children in my newsfeed every day.  I’ve literally watched them grow, take their first steps, communicate via sign, etc. I know about them as individuals and I’ve enjoyed them immensely!   

Last night Matthew was sitting in my lap as I was scanning my newsfeed while we were watching TV and out of the blue he pointed to the photo of a little girl about Luke’s age with Ds on my phone and said “she looks like my brother”.  I was caught off guard and asked him to repeat what he’d said like I hadn’t heard him the first time… more definitively he told me “mommy, that girl looks like my brother, Lukie Dukie”.  I tried to probe him, to see what he’d identified as looking the same to which he responded, “I don’t know”.  I never was able to get him to tell me how they looked alike… he went back to watching TV while my heart sank a little.  He wasn’t derogatory or negative… he was actually quite matter-of-fact.  Ever since our prenatal diagnosis of Luke having Ds (which happened the week that Matthew turned one year old), I’ve wondered how having a brother with Ds would affect him… obviously I’ve always known that Matthew would recognize his brother was different than him at some point, I just never knew when it would happen…

Dustin and I, our friends and family, and Luke’s doctors and therapists (3 of whom are physically in our home every week) openly talk about Ds, it’s a part of our life now and it’s not common for a day or two to pass without someone mentioning the term.  I know Matthew’s heard it a hundred times or more so I’d always just assumed that he instinctively understood what it meant as he’s overheard so many of our conversations.  I let the conversation pass last night but resolved that the next time Matthew mentions someone “looking like his brother” to specifically talk with him about Luke having Down syndrome.  Considering he just turned 3 a few months ago, I’m not planning to go into great detail about what it means but am hoping that providing a name to explain the commonalities between Luke and his friends with Ds will help Matthew to internalize that our family isn’t alone when it comes to loving someone with Down syndrome.

Thank You Mr. McKay!

I should have posted this months ago... when we participated in the 2014 Northeast Ohio Buddy Walk back in July, Luke had a very special monetary donation to our team, it was from a generous young man who we know as a Jersey breeder from the dairy world who left this comment along with his donation:

"Luke, You are an inspiration to my everyday life. When I look at things you have overcome and always with a smile on your face, it makes me strive to live life a little happier. You and your family are always in my thoughts and prayers."

Sam McKay, I want you to know that this comment has brought me to tears on more than one occasion (today included) and times when I'm feeling down in the dumps, I've come back to this comment to raise my spirits!  Please know that our family appreciates your support and kindness!  Hope we see you soon!!

What is Early Intervention?

If someone asked you to define "Early Intervention" off the cuff... what would you say?

• Stop something before it starts?
• Take someone's hand early in a process and guide them towards success?
• Interrupt an act before a potentially negative consequence ensues?

If you would have asked me to define "Early Intervention" a few years ago, I likely would have come up with one of the easy answers above.  If you were to ask me today, however I'm still not exactly sure how I would respond, but it would be be specific to my experience as Luke's mom and would go something like this...

"Early intervention is federally mandated by Part C of legislation entitled Individuals with Disabilities Education Act or IDEA, which was last amended in 2004 and is executed by the US Department of Education, Office of Special Education Programs.  This legislation passes the responsiblity to each of the 50 states and in Ohio, it's called out in our administrative code, where the Ohio Department of Education then passes the buck [literally] to each of our 88 counties.  Part C of IDEA is what mandates an Individualized Family Service Plan (IFSP) to those with disabilities between birth and the age of 3, when they transition to preschool and graduate to a full fledged Individualized Education Plan (IEP).  I've been studying IDEA and Ohio's Administrative Code pretty heavily lately in an attempt to understand what Luke is entitled to when it comes to developmental and educational services and I must say it's a pretty overwhelming task to try to understand and internalize legal mumbo-jumbo.  I'll continue reading and networking with other parents as I continue my quest to learn how to be the best mom I can be and will update with more on early intervention and how they're helping Luke to meet his full potential in the future!"

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Early Intervention Individualized Family Service Plan and Service Delivery.

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Definitions.

1st Day of Preschool for Matthew

Today was Matthew's first day of preschool... it took some pretty direct questioning on my part, but here is his recap of the afternoon:

"I made a bridge for my truck and trailer.  It fitted.  It was just for me.  I hooked up my truck and tailer and hauled a car over the bridge.  Ms. Ranita read lots and lots of books.  I cried because I missed you.  I rode a 4-wheeler on the playground and it drove me.  I played puzzles, two of them.  They were animal puzzles.  I ate Goldfish and drank all my apple juice.  Me and my friends played with Play-Doh and they drank apple juice too.  That's all we have"

Matthew did cry when we left but his teacher reported that he recovered pretty quickly and he was fine for the rest of the afternoon.  Also, on the way home he got upset because he couldn't see his "pack-pack" (aka backpack) which made him think he left it at school... that also made him cry!  Once he realized it was next to him on the seat he was excited to show us the papers in his folder!  He also shared that he's excited to go back to school later this week!

Way to go Matthew!  You're one awesome little guy! 

Matthew is 3!

Happy birthday sweet boy!  Meeting you was one of the best days of my entire life and I treasure every moment, kiss, smile and laugh that we share! You are a dream come true!!

I was born for a purpose

Over the course of the last week I've found myself plumb, smack-dab, right-in-the-middle of a situation I didn't solicit.  As the events have unraveled over the span of about six days, at times I've been left feeling lost, helpless and more or less, mostly just plain confused.  Don't worry, it's not something major with the hubs or our kids, but it will likely affect us all to some degree at some point in our future.

It just feels odd to have been so completely blind-sided and the only thing I know to do is to ask God how he wants me to help make things better under the circumstances.  And even more than that, I know that I have to keep my heart wide open so I'm able to hear Him when he reveals what my role is supposed to be.  Even though I don't know the specifics of how things will play out, I do have faith that God will guide and equip me with knowledge and energy and above all, He will provide everything I need to do His work... whatever that may be!

Dear Lord,  I am your faithful servant...  I want to do Your work and abide by Your will.  I trust You to lovingly care for me, guide me and provide me with the tools I need to accomplish the tasks at hand.  Please help me to maintain an open mind and a willing heart and help me to share Your love, peace and forgiveness with others in my life.  In Your name I pray, Amen.

First Steps!!

So what if the kid was battling an unknown-at-the-time pneumonia, that sure wasn't going to keep him down!  Luke took four steps unassisted yesterday!

Song Connected Memories - My Country Playlist

I've been listening to so much music lately and for some reason I've been gravitating to a mix of current and old-timey 80's country.  These are the [very eclectic] "Top 10" songs on my playlist right now.  Weird mix, right?

10. Lettin' The Night Roll - Justin Moore
Aside from being super short, Justin Moore is basically awesome!  His music is just real and pays tribute to growing up in a small town... Good stuff!  I recently read that he moved him family back to his hometown and out of Nashville so his girls could go to the same school he grew up in - how cool is that?

9. Here You Come Again - Dolly Parton
It's Dolly... what else is there to say?  Aside from big hair and pegged pants, good 80's stuff is just good!

8. Like A Wreckin' Ball - Eric Church
So this song may be a bit "um, suggestive" *blushing* but it's one that I find myself playing over and over...

7. Don't It Make My Brown Eyes Blue - Crystal Gayle
So I have brown eyes and have always thought blue and green eyes were so beautiful, maybe I just like this one because sometimes the grass is just greener on the other side of the fence?

6. Swayin' - Cole Swindell
Yea.... so, Cole Swindell... He's opened for Luke Bryan the last two times I've had tickets but both times I missed him opening and now that he has finally released his debut album, I wish I would've seen him (...but have no fear, I have tickets for Luke Bryan - and Cole Swindell - both nights at Blossom next month :) I love that he's a great songwriter and actually pens his own music!  He has some serious talent!

5. She Get Me High - Luke Bryan
Aside from this being sung by my one-and-only, all-time-favorite "Country Man", Luke Bryan... this is just a fun, upbeat song!

4. Dirt - Florida Georgia Line
I love how this song just takes you to this place of appreciation for your roots and community and how there is a really special meaning attached to the dirt beneath your feet.  I've been thinking this is an anthem of sorts...

"You get your hands in it plant your roots in it/Dusty head lights dance with your boots in it (dirt)/You write her name on it spin your tires on it/Build your corn field, whiskey bonfires on it (dirt)/You bet your life on it (yeah)

It's that elm shade red rust clay you grew up on/That plowed up ground that your dad damned his luck on/That post game party field you circle up on and when it rains you get stuck on/Drift a cloud back behind county roads that you run up/The mud on her jeans that she peeled off and hung up/her blue eyed summer time smile/Looks so good that it hurts/Makes you wanna build A 10 percent down white picket fence house on this dirt

 

You've mixed some sweat with it taken a shovel to it/You've stuck some crosses and some painted goal posts through it (dirt)/You know you came from it (dirt)/And some day you'll return to it

This elm shade red rust clay you grew up on/That plowed up ground that your dad damned his luck on/That post game party field you circle up on/And when it rains you get stuck on/Drift a cloud back behind county roads that you run up/The mud on her jeans that she peeled off and hung up/Her blue eyed summer time smile looks so good that it hurts/Makes you wanna build A 10 percent down white picket fence house on this dirt (dirt, dirt, dirt)

 

You know you came from it (dirt) and some day you'll return to it/This elm shade red rust clay you grew up on/That plowed up ground that your dad damned his luck on/That post game party field you circle up on/And when it rains you get stuck on/Drift a cloud back behind county roads that you run up/The mud on her jeans that she peeled off and hung up/Her blue eyed summer time smile looks so good that it hurts/Makes you wanna build A 10 percent down white picket fence house on this dirt/You know you came from it and some day you'll return to it."

3. I Fell In Love Again Last Night - Forester Sisters
I remember singing along to this on the radio as a young girl....

2. Keep It To Yourself - Kacey Musgraves
I recently downloaded Kacey Musgraves' album, Same Trailer Different Park after watching an episode of CMT Crossroads that featured her and Katy Perry.. from the first time I listened to the album, I've been so in love with her! I don't know why I was such a late adopter of her music, but she's pretty great!

1. I Told You So - Randy Travis
His whole album "Always & Forever" actually has been on repeat for me lately.... there's something nostalgic about Randy Travis and particularly the songs on this album for me... reminds me of when in retrospect, I was really just a kid, but in many ways felt so "grown up" [which is odd since this really isn't music for a young'en] but nonetheless, it's true.  Eric Church actually reminds us of the concept of "song connected memories" in Springsteen and when I hear this music I think of when I used to listen to this album on cassette tape (remember that manual process of "eject","flip" and "re-insert"? ...And God forbid the tape would get stuck...) and I think about driving backroads with this on and I just feel good... and full... and happy about a time when I was "just a kid".  Did you know there is actually a science behind the music memory connection?  Cool stuff, but I digress...

I've also been listening to a lot of Dixie Chicks... hate their politics, love their music and stuff by newer artists Brett Eldredge and Thomas Rhett.  And The Judds... Mama He's Crazy and Why Not Me?  I could go on and on...

I LOVE music... it's such a shame that I can't carry a tune to save my life!

Please vote for Luke!

I entered Luke into a beautiful baby contest sponsored by one of our local television stations... please consider voting for him if you have a chance!  Vote for Luke!!

3:39 AM: I can't sleep

3:39 AM: I can't sleep.  I've resigned to do what all crazy people do when they're wide awake in the middle of the night... blog. 

Last night a friend asked me "How are you, really? You seem great, but I wanted to make sure. Are you okay?"  I've been chewing on that question for the last few hours...  By nature I'm someone who generally reflects often and historically I've used the 25 minute commute home from work to consider the day's events...  what went well, what could I have done differently, what needs to be tackled next, mental planning for the evening, review of events upcoming later in the week, etc., etc.  That approach has worked well for me in the past, however considering that I've been off work for a few weeks now caring for Luke, I haven't had that same block of time set aside each day to just think.  My friend's line of questioning was the probing that I needed to spend some time in quiet reflection, even if it did leave me sleepless!


"How are you, really?"
After a few hours of mentally replaying the last few weeks' experiences... my simple response... I'm good!  No doubt, we've been through a roller coaster of emotions the last few years with much anticipation of Luke's heart surgery being the climax.  There was initially so much learning that needed to happen to understand what we were dealing with and then all of the planning to actually get us to Boston was no small feat.  Once we were there though, things took a very natural progression and fortunately everything was orchestrated by the experts in the hospital... the scheduling, the intensive care that Luke required post-op, our housing, etc.  All of the pre-op appointments were scheduled back to back to back the day before surgery so there wasn't much time to think, only time to do.  I recall wondering to myself "is this really happening?", "is tomorrow really the day?"  Luke had been waking multiple times each night in the year leading up to surgery (unfortunately that hasn't changed with the surgery now being complete!) and after a draining and utterly exhausting day of pre-op, I specifically called out to the Lord that night... asking him for a full night's rest for Dustin, Luke and myself.  When we woke the next morning, Dustin's first comment was "wow, can you believe we slept all night?!?"  He gave me a high five after I responded, "I know, wasn't it awesome?  I asked God for that when I prayed last night!"  It's not often that prayers are immediately answered and I took that as a great comfort that morning.  We had to be at the hospital at 6 AM and by 7:30, he'd been taken back and things were set in motion.  There was no turning back.  He needed the surgery to give his body a chance at living a long life, most children who had gone without this repair in prior decades hadn't lived to see ten years old.  As we headed to the cafeteria to grab breakfast and a cup of coffee, I was at peace.  I was comforted by the prayers I knew so many were offering up on our behalf, not just in that moment, but in the weeks and months prior.  On that day in particular, we had no other choice than to "let go, let God".  

The next few days were absolutely exhausting.  Living in a hospital is not fun, sleep doesn't come easy and shared bathrooms are by no means comfortable, but we made it.  The hardest part was seeing Luke uncomfortable during his recovery, he cried out in pain a lot in the days after surgery and when the sedation had been lifted enough that he was more alert, he just wanted to be held... which was cumbersome to do when you had to deal with IV fluid lines, an arterial line, a central line, EKG lines and a pulse ox.  It seemed like just as soon as you'd pick him up and get all the lines untangled so you could sit down, one of the many lines wouldn't be quite long enough, so it'd require working to get situated again and it never failed that as soon as you'd get comfortable, someone would stop in to get vitals, administer meds, etc. and you'd have to start all over.  Additionally, Luke had a very rare post-op complication, Subcutaneous Emphysema.  This is actually so rare that even with Boston being the number one facility for Pediatric Open Heart surgery, where they perform over 1000 open heart surgeries annually, they told us that they see this complication less than one time per year.  Our cardiologist there told us that in her 30-year career, this was her first time to witness this post operatively.  We heard fellows and nurses tell us that it was "perplexing" and "strange".  Fortunately it eventually resolved on it's own, but for the first few days, it was worrysome in that we didn't know where it was coming from (and even after a number of tests, we never definitively learned the source).  

Nine days following surgery we were home from Boston and after a post op check-up in Cleveland went well a few days later, we thought we were home free until we hit another road bump.  Nearly three weeks after Luke's open heart surgery, I noticed his chest didn't look normal when he'd breathe.. he was retracting sub coastally and also jugularly and his incision was protruding about an inch from his chest wall.  When you'd pick him up, you could feel the middle of his sternum grinding... the edges of the bone rubbing together where they'd been separated to allow access to his thoracic cavity during his heart surgery.  We later learned that the medical term is "Sternal Dehiscence", which is often caused by a severe (and can lead to) a life threatening bone infection that becomes septic.  This is a pretty rare complication of open heart surgery and it's said to occur around 2% of the time.  Fortunately, during Luke's emergency sternal reconstruction operation last week, the surgeon didn't find any infection.  He replaced the original heavy gauge sutures with six stainless steel wires to fix the sternum in place.  He's now five days post op and seems to be doing okay aside from being pretty needy. 

As I think back through everything, one concept sticks with me... perseverance in faith even through life's challenges... the more you exercise your faith, the stronger it will become.  This has been so true for me, I cannot imagine how we could have gotten through this otherwise.  Every day, we are witnesses to God's unending love.  Lately, we have felt Him graciously answering our prayers... the big one, getting Luke through a successful heart repair and even helping us through the small stuff like allowing us a full night's sleep the night before surgery.  He has sent so many amazing people into our lives and has re-connected us with others, particularly for me, He has brought one of my favorite childhood friends back into my life and I am overjoyed with the opportunity to get to know her again!  Before we left for Boston, while we were in Boston and even after returning from Boston, we received so many cards and gifts in the mail it was nearly mind boggling.  A friend drive 16 hours round trip to visit us in Boston while family and friends rallied at home to do work around our yard so we could come home to less work.  The way people have surrounded us with love and support has been absolutely overwhelming and has filled me with such an amazing gratitude.  Even on days that life feels kinda tough, I know that I am blessed!

5:42 AM: Signing off and heading back to bed...

Father's Day 2014

The best father I've ever known in my life.  He shows up.  Participates.  And more than that, he enjoys his children!  Matthew and Luke adore their dad and the list of ways he loves and cares for them is unending!  We love you Dustin!  Happy Father's Day!

Wednesday Update: Post Op Day 6

Not sure how I've managed to not update this more frequently... That was definitely one of my goals heading into this experience! I'll have to be sure to do a complete report once we're home and I have a solid block of time to dedicate to documenting! We are finally back in Luke's room following his sedated echo this afternoon! He did great with the sedation and we just heard the results of the echo... A "patch margin ASD" remains, but should heal on its own in time and his valve and overall heart function look fine! His surgeon was one of the doctors reviewing the echo today and he was pleased with the results! 

A few fun things have happened for us today... Luke got his official "heart" pillow from the hospital, indicating that he had open heart surgery here, he was chosen for a photoshoot by the hospital's professional photographer and we are hopeful that they will use him on their website and / or Facebook page sometime soon and I was able to make a "Beads Of My Heart" bracelet to represent all of the different procedures and events that we've been through with Luke's heart journey.  I ended up with a string of beads too long for a bracelet so it may become a necklace or a bracelet that I double wrap... not completely sure, but either way, here is a listing of the meanings of each of the beads I was able to pick out...

Hospital Admission (NICU, Observation for Laryngomalacia, RSV, Heart Catheterization, Bronchiolitis, Pneumonia and Open Hear Surgery)

Ambulance Ride

Bath time in the hospital

Chaplaincy Visit

CICU Admission

Clinic Visit

Hospital Discharge

Fluid Restriction

New Diagnosis (Subcutaneous Emphasema)

Pre-op Visit

Starter Bead

Holiday in the Hospital (Christmas in the NICU)

New Baby (with a Congenital Heart Defect)

Visit to the Prouty Garden while admitted to Boston Children's 

Visit to the Playroom while admitted to Boston Children's 

Visit to the Resource Room while admitted to Boston Children's (for parent coffee hour)

Out of Bed!!

Arterial Line

Blood Draw

Catheterization

Central Line

Chest Tube

Chest Tube Removal

Chest X-ray 

Wound Dressing Change

Echocardiogram

EEG (at Cleveland Clinic)

EKG

Intubation

Extubation

IV Line

NG Tube (while in NICU at Cleveland Clinic)

Operating Room / Surgery

Pacing Wires / Lines Removed

Saturday Morning Update - 2 Days Post Op

Luke had a good night last night, he slept well and woke up around 7AM as a pretty pleasant baby.  The air accumulation doesn't appear to have gotten worse but it also doesn't seem to have gotten better either.  Because it hasn't gotten worse, they have slowed down on the comments about taking him back to the OR and have decided to perform a barium swallow study instead at the point.  It sounds like if there is an esophageal tear, there won't be any intervention necessary as it would be expected to heal on its own... The main concern is that he can't eat until it's healed if that's the issue.  We are just sitting tight for now and don't have much else to report on his condition other than he appears to be doing well aside from the air under his skin.  

We had a super awesome surprise this morning, one of our best friends, Will showed up for a surprise visit!! He over 8 hours one way to get here, from Pennsylvania to see us! We are so blessed to have such awesome people in our lives!!

Rough Morning

We've had a rough start to the morning. Yesterday's heart repair went great and all is well there. We were told to expect some puffiness throughout Luke's body following him being on bypass. He was extubated last night and afterwards he was doing well so we went out of the hospital, across the street for dinner and a much needed break following a long and stressful day.  When we returned to the hospital, Luke was extremely puffy and his left side was extremely distended, including his chest, neck, back, face and especially his left eye which was swollen shut.  The thought at that point was that it was dependent edema from him sleeping on his left side while we were gone.  The swelling didn't decease and by midnight, they began X-rays to attempt to figure out what was going on.  The X-rays were then repeated at 6:30 and 10:30 AM.  They are showing air under Luke's skin, which indicates that he has subcutaneous emphysema. The emphysema in and of itself apparently isn't very concerning, the real issue is trying to figure out where the air is coming from and why there is a leak.  The plan is to repeat the X-ray this afternoon and if it shows that the amount of air hasn't decreased, he will go back to the operating room under general anesthesia for some exploratory looks inside his esophagus as there is a concern that he may have an esophageal perforation or tear that is allowing air to escape and travel under his skin when he takes a breath. The thought is that damage could have been done to his esophagus during an echocardiogram scope procedure through his esophagus during his heart surgery or possibly when he was extubated last evening.  

With the concern of a tear in his esophagus, he isn't allowed to have anything orally, including medications or food.  Additionally, he has ripped out all of his IVs over the last 18 hours so he was just sedated again and there is an IV tech here now attempting to re-place two IV lines so he can receive medication and fluid to keep him from becoming dehydrated since he can't eat.  He is extremely irritable and "hangry" as we say in our home (hungry and angry) and also seems to be in pain from the heart surgery incision and all of the swelling.  He will likely remain in the ICU through tomorrow, if not longer.  

Move Outta The Way, PediaSure!

In only 9 more days, Luke's heart will be mended and we will be well on our way to saying goodbye to all this medical formula!!

You know your child's heart condition is becoming serious when you notice that they're no longer gaining weight... that happened for us nearly 6 months ago, just after Christmas.  The temporary solution we came up with was to convert Luke from whole milk, which has 150 calories per 8 ounces to Pediasure, which has 240 calories per 8 ounces.  Today we re-stocked our inventory and now have a very heavy 7 cases of PediaSure lining our shelves. 

When we get home from Boston, hopefully Luke will be transitioning back to whole milk and I'll have more room for canned goods once again!!

Why We Are Celebrating

The days pass and blur together.  Nervous energy overtakes me at times and I find myself needing to move.  To do something, anything.  Although battling a tough cold, I've still earned substantial satisfaction over the last few days working in the yard and around the exterior of our home... hand scrubbing algae with bleach water from our gray vinyl siding, planting beautiful containers of flowers, digging up, splitting and transplanting perennials, planting 32 asparagus crowns as well as tomatoes and bell peppers, painting lawn furniture and our front door.. I've always wanted a red door...  Last week, I caught myself organizing the items I'd placed on the conveyor belt while checking out at a local big box store - like items together and then by size and color... frantically trying to get it all in order while the belt was moving... the cashier surely thought I was having a major OCD moment!  I had to make a conscious effort at one point during my little episode to place my hands on the handle of the cart so I could resist the urge to keep them busy with pointless filler activity - I'm afraid of how out of control I might be if I didn't have a keen sense of self awareness?  Many of the lists I've made over the last few months have all their items checked off and all I have left to do is pack our bags for Boston.  It's been 21 months since we learned prenatally that Luke would need open heart surgery and over the course of nearly the last two years, I've googled as many combinations of relevant keywords that I could come up with, sometimes repeating the same combinations thinking I just might find something new.  My mind has become so conditioned with a deep need to prepare, to research and to learn about what to expect for this upcoming event that quite honestly I'm a bit afraid of how I'll find enough other things to fill my thoughts once this is all over.  I think back to the days I used to take time to enjoy reading for pleasure and the concept of having strings of hours long enough to pour through an entire series becomes almost mind boggling. 

Soon this season of our lives will be over.  Like most of the things we experience, it will probably become one of those events you reflect on that loses just a little more detail and gains more fuzz with each passing year until it just becomes one small puzzle piece of your past.  That's actually part of why I feel energized and rejuvenated through journaling... it becomes a way to document. A personal way for me to remember so I can grow from experience. A way to force myself to think through the process with logical thoughts.  A way to dig down for organic, self-induced and word inspired peace and hope.  Journaling has also become a way for me to communicate - to what end? I'm not exactly sure...  and surprisingly, it seems that people are actually reading my blog.  I watch the counter continue to tick away and often receive feedback from family and friends about my posts, but sometimes it leaves me feeling awkward.  Exposed.  Even so, I find a need to keep writing.  This experience has blessed our family with such a wonderful opportunity to connect with people in our community we'd never had a reason to get to know in the past.  As I sit in silent reflection about how our lives have been opened to new relationships and concepts, I am overcome with such an intense feeling of love and gratitude... fullness, really.  As I became a mother for the first time, I was awed by the incredible stretching power of the heart to love and that awe was only deepened the second time around.  I didn't know that the heart could expand even further until the last year or so as we welcomed so many new friendships throughout our community.  Even on individual days when there are minutes or sometimes even hours of nervous energy that fills my body, I am comforted by the love and support of our friends - those who have been with us for many of life's adventures and those who are new to our park of many amusements. 

Over the last few weeks, we have been showered with love and support... personal visits, prayers, cards, emails, text messages, facebook messages and care packages have created a sense of celebration in our lives.  After some pondering about what it is we could possibly be celebrating as we stare straight into the face of open heart surgery... it's really pretty simple... FAITH and LOVE are always reasons to celebrate and they fill each day with so much joy!!  Thank you to everyone who has reached out to support our family, we are forever grateful for your kindness!

Luke's Heart Surgery is Delayed

It's taken me nearly 24 hours to deal with the disappointment we were dealt yesterday, the day before we were set to leave for Boston, when we learned that Luke was battling a cold which would keep him from being a candidate for surgery this coming Tuesday.  Every last detail was ready for us to load up and take off this morning... but instead... we're still here.  I came home from Luke's pediatrician appointment so let down that I crawled into bed at 5 PM yesterday and didn't re-emerge until around 9:30 this morning when I realized that my exhaustion was probably a combination of riding a mental roller coaster full of continual ups and downs, burning the candle at both ends as I attempted to work from home last week while spending the evenings preparing for an extended stay away from home and finally because I too have come down with the same cold that appears to be taking it's toll on our wee little one.  After keeping him in isolation and a near full-out quarrantine for almost one month, it felt so defeating for him to fall ill about 16 hours before we'd leave home to begin our adventure in mending his heart. 

When will his surgery happen, you may be wondering?  Well, we're wondering that same information too...  Apparently his surgeon is currently scheduling into August and September (which sounds about right since we'd had his surgery scheduled since February for May).  We are holding out hope that they will be able to work him in much sooner however, like within the next couple of weeks, althought it won't likely be until sometime next week that we hear from cardiac scheduling with an update.  Until then we just wait and pray for Luke's quick healing from his current illness.

We had friends stop over with a care package for our trip just after we'd returned from the pediatrician yesterday and they reminded us that our plans are not the same as God's plans and we talked about keeping your faith, especially as you face the unknown. We also received a card yesterday in which another friend reminded us of Philippians 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God which surpasses all comprehension will guard your hearts and your minds in Christ Jesus".  It's through the peace that only Christ can bring us, that wait for news to reach us of when Luke will be rescheduled for his open heart surgery.  As we seek some fresh perspective and some distance from yesterday's events, Dustin and I are planning to take to the woods for a few hours this afternoon to hunt for the usually elusive morel mushroom.  I've never found one during any of my half hearted scouting attempts in prior years... maybe today will be my day!