Railroad Wife, Railroad Life

 Isn't it crazy how you seem to model situations in your mind after other situations that have happened?  For example, I thought for sure my Pop-Pop had another 10 plus years because his mom lived to be 97.  Then came 2020.  2020 has definitely been the year of elevated pain, suffering, loss, and unimaginable circumstances.  I don't know a person on the planet who could say they will remember 2020 fondly.  Unless they welcomed a child into the world, of course.  That's the cycle of life isn't it?  As we welcome in new life, we are forced to eventually say good-bye to the lives that created the foundations of our very own lives.  I'm sure while they are sad to leave the lives they've touched, they too have carried a sadness with them and are ready to see the people who they had to say good-bye to long ago.   The very foundation of my life began in a home closely resembling that of the 90's hit show "Full House".  We lived with m...

It has been 9 years since my grandma breathed her final breath on the face of this earth.  I think about her almost every day; what she would have thought of her great-granddaughters, what she would think of....well every thing.  While in the shower this morning a song came on that always makes me think of her.  To be honest, this years theme is song titles.  Every blog title from 2020 has been a song title.  This blog is no different.  Fittingly, this song is from the soundtrack of a movie based on the last book my grandma ever read.  The Shack. I loved my grandma with my entire being.  She was there for me when literally no one else was there.  When I was young, she made all my pageant dresses and stage clothes when I began to sing.  Before I'd go on stage, she'd always smile at me and say "Sparkle, sparkle, sparkle, pizzazz, pizzazz, pizzazz."  It didn't matter how things turned out, she always thought it was the best.  Sh...

Anyone who has battled with anxiety and depression knows the feeling of dread when the anniversary of certain events creep up. The dread just creeps into your stomach and balls it up. Sometimes you almost want to will the past to change, because it's so sad or traumatic. Everyone knows the past can't change, but I would be lying if I said I hadn't willed it to change a few times in my life. I know I have a bad habit of looking through old journals, watching for memories on Facebook, and my mind of an elephant, to remember things that happened in the past. My husband usually gives me a hard time about this because I spend too much time focused on past events. This year is a little different for me though. A year ago I was about to embark on one of the best weekends of my life. So many friends and family were able to come together to celebrate my grandma's 85 years on this earth. This was a milestone weekend for her because for the first time ever all of her grandkid...

I think it's only human nature when living the railroad life to accept that you are never in your forever home.  Thus there's a lot of "in our next house..." talk that goes on.  This house that we are in has been a wonderful house for us.  We've made countless memories and when the time comes to move into "the next house" we will be leaving behind a chapter of our lives that will never be duplicated.  However, that still doesn't stop the "in our next house...." discussions from time to time.  Something occurred to me though as I was sitting in church today.  When it comes to anything in our lives, whether it's house, situation, relationships, etc. we have a choice when it comes to growing or scrapping these parts of life.  We can either scrap it or make the best of the space we are given. When we lived in West Virginia, our house was the closest thing to perfect we've ever lived in. The people who built the house made great use of...

This was by far the best Christmas break I've had in a long time.  We started a little early with presents and dinner on Christmas Eve.  This year I made an executive decision to put the tree upstairs in our bonus room, as it's carpeted and there was less chance of an ornament getting broken.  While this was the first year we didn't have an ornament casualty, this was also the first year our kids woke up at 1AM excited because Santa came.  I had to run upstairs and send them back to bed.  Remembering all those Christmas Eve's where I didn't sleep in anticipation of what I got; I'm sure this was extremely hard for my kids.  Kennedy woke up again around 4, wanting to play with one of the stocking gifts she'd managed to see at 1.  Once again I came upstairs to shoo her back to bed. Christmas morning was magical.  The girls really liked what Santa brought them, both their gifts they'd asked for and the gifts left in their stockings.  We hurri...

Before I get to my topic of choice, I just want to put up a disclaimer of transparency ahead.  I am not going to pretend the last 5 years have been a walk in the park.  Truth be known, I still get a large bump of anxiety from August 12th to January 7th.  Every.  Single.  Year. Anyone who knows me knows that 5 years ago Kennedy and I each had our very first surgery together.  I would be lying if I said I wasn't proud of this.  I am so thankful that God provided for every need that came up to make fetal surgery happen.  It doesn't happen for everyone who qualifies for the surgery.  Not only was I able to do this with Kennedy, but I was also able to nurture some relationships that had been left unattended for too long.  One of the conditions of having fetal surgery was to stay within the Cincinnati area until delivery.  We were very fortunate that the Ronald McDonald House of Greater Cincinnati had a room open up for us while I was...

Recently I've tried to get back into reading a book by Ann Voscamp titled "One Thousand Gifts".  A friend from a mom group recommended I read the book while I was struggling with a miscarriage in early 2013.  I've tried several times to make it through the book and get side tracked with another book, or life, or any other excuse I could muster up.  In an attempt to focus more on the book and the value it could add to my life, I checked out the audio book online and am listening to it while reading it.  This has been a game changer for me.  Voscamp actually reads the audio book, so words that get lost on a page regain their meaning in her voice. While Voscamp is considered a Christian writer, I encourage those who don't believe to read it, along with those who are trying to break out of a relationship rut with God.  She says things aloud (or on paper) that every person has asked when faced with a dark time in their lives.  This book really dives deep ...

It goes without saying that children grow up in the blink of an eye.  If it wasn't true, Kenny Chesney wouldn't have a hit song discussing the a topic.  However, when you're the parent of a child with special needs, you get to savor some of the "baby" moments a little longer.  Sure the numbers go up the same, but sometimes that's all. Due to the circumstances surrounding Kennedy's birth, she started life behind the 8 ball, so to speak.  It was bitter sweet for me, because I loved seeing her fight so early in life and I got to have a baby for a little while longer.  However, it was frustrating and very hard to watch when she'd take a "step" forward only to take two steps back in the NICU.  I'll never the Christmas night of 2013.  Jonathon was holding Kennedy and had just finished giving her a bottle.  Kennedy's oxygen level started to drop and instead of giving her a second to correct it on her own a nurse, who wasn't familiar ...

In December of 2016 I began having serious pains in my side.  I called my PCP who told me to go to the ER.  A family friend brought their kids to our house to watch Savannah and Kennedy while he took me to the ER.  Jonathon was out of town, but was heading to Evansville.  At the ER it was discovered that I had a cyst on my right ovary.  The ER Doctor told me to follow up with my OB-GYN within the next two weeks.  Unfortunately, the next two weeks consisted of Christmas and New Year’s Eve celebrations.  January 11 th , I was able to follow-up with my OB-GYN.  Another ultrasound confirmed the cyst was still there.  Something I already knew because I was still having pain from time to time.  The OB said since the cyst hadn’t resolved itself she would like to remove it surgically.  January 18 th I had surgery to remove the cyst.  Before the surgery I had asked the OB to also remove my mirena IUD and tie my tubes.  After the ...

July 11th is a day that has collected meaning over the last 11 years for Jonathon and I.  July 11, 2005, Jonathon started his career with CSX.  Unbeknownst to us at the time we picked our wedding date, but July 11, 1931, my Great Grandparents, Ike and Emma Roberts were married.  July 11, 2009, Jonathon and I were married. When I was growing up, every summer my Great Grandparents, Grandma and Pop Pop Roberts, would always come out to Colorado from Florida for a month. Looking back, I realize how blessed I was to not only get to know them, but to have their example set before me.  They were that cute old couple who were still holding hands and still had the light and adoration in their eyes for each other.  There's a picture somewhere of them standing in their double wide holding hands and their eyes are just twinkling and out pouring with love.  You can tell after all the years they'd been married, they were just as in love with each other that day as th...

Dear Shiloh, In 2 short months your world will be completely turned upside down.  You may not know it now, but that sweet little girl inside your belly has a hole in the bottom of her back.  Don't worry, she's going to be fine and you will make it through the other side a much stronger person.  You're going to be given the option to have a surgery while that sweet girl is still in your belly.  Take it!  You're going to be given a lot of paperwork and a book that explains what Spina Bifida is and all that comes with the diagnosis. Throw it all away!  None of that literature is going to matter when you see that sweet little girl for the first time.  You're not going to thumb through the pages when she bears weight for the first time.  No amount of literature is going to prepare you for that first time she needs a surgery when she's not even 2.  Nothing in those pages will comfort you when you are faced with the reality of her finally needing a...

A week and 1 year ago today, I received my final wake up call.  Pictures from Mother's Day were posted on Facebook and I could no longer deny that I needed to do something about my weight.  My clothes were no longer fitting.  I'd actually just gone shopping for clothes for our cruise and it was so unpleasant.  I cried because clothes weren't fitting like they should unless I went up to the next size.  Even then I hated what I saw in the mirror.  I'm so thankful I had someone to help me out of my hole.  Not only has she helped me completely transform on the outside, she's also loved me where I'm at and given me some direction to grow as a person. On June 6th, it will be 1 year since I started my first 24-day challenge.  During those 24 days, I lost 12 pounds and 13 1/2 inches.  10 of those pounds alone were toxins that processed foods left in my intestines.  Since that first challenge, I've used clean eating as a guide post and contin...

Why are we so offendable?  Why are we so quick to excuse our own shortcomings, but condemn the shortcomings of others?  As a rule, almost everyone has a touch of narcissism within them.  Why wouldn't we though?  We are taught to look out for number one, all others be damned.  That's what society teaches us, but what about God?  I ask these questions for myself as much as anyone else.  Like the rest of the world, I struggle the "all about me" mentality.  However, I'm starting to realize that changing my attitude and giving a little grace is worth far more than self satisfaction or having the last word. The first time I heard the phrase "What the world needs now is grace", I didn't know what that meant.  I was 18 and thought grace was just something you said before dinner.  16 years later, I've started to realize grace is a wonderful gift God gives us every day.  It's also a wonderful gift He gives us so we may pass it on to others....

Yesterday Kennedy and I were up in Cincinnati again.  We started the day off with a renal ultrasound, followed by a VCUG and Spina Bifida Clinic.  The main purpose of the VCUG was to see if Kennedy's bladder is refluxing urine into her kidney's when her bladder is full. This was our first clinic since Kennedy's cord dethering/cyst removal and shunt surgeries.  One of the highlights was getting to see our Fetal Care Center Case Worker, Erin.  She was shadowing our Social Worker for the afternoon.  This was the first time she'd seen Kennedy with her walker.  I know I've said this before, but every single person who helped us through the decision to have fetal surgery will forever have a special place in our hearts. The urodynamics test from 2 weeks ago and the VCUG showed that Kennedy is still not completely voiding her bladder on her own.  The Urologist did say that her bladder does look much better than it did during the renal ultrasound in August ...

We've been fortunate not to have to head up to Cincinnati for anything yet this year.  However, this trip yesterday was the first of 3 that will be made in the next month.  Yesterday morning Kennedy had a sedated MRI.  After the MRI she had a urodynamics test done and a follow-up with Dr. Stevenson, her Neurosurgeon. The brain scan on the MRI showed her shunt is draining too much fluid and her ventricles went from being too big to too small.  After the MRI we went up to the Neurosugery Department to have Kennedy's shunt reset(the magnets in the MRI machine automatically shut it off).  The Resident programmed the shunt to a lower setting in hopes that it would correct the issue with Kennedy's ventricle sizes. We won't get any of the results from the Urodynamics test until March 14th, when we go back to Cincinnati for Spina Bifida clinic. Dr. Stevenson was very pleased with the images of Kennedy's spine.  This was her first MRI since she had her cord de...

Normally I don't talk a lot about my dad.  It will be 4 years on the 25th of this month since he passed away unexpectedly.  I still remember that day very vividly.  My husband had just been transferred from Chattanooga, TN to Danville, WV.  I was still in Tennessee and was spending the evening with my friend Star, her husband, and her mom.  I first got a phone call from my Aunt, my dad's sister.  She told me my Grandma, my dad's mom, had received a phone call from my little sister saying my dad was in emergency surgery at a hospital in Pueblo, CO.  My sister had received a call from our stepsister who was a surgical nurse at the hospital.  She had instructed my sister not to call anyone, but she called my Grandma anyway.  My Aunt said she'd called the hospital and all they would tell her was that he was there.  HIPPAA laws prevented them from telling her anything else.  While I was on the phone with my Aunt, my little sister called ...

Just like we were told to ask our parents where they were the Day JFK was assasinated, I anticipate the day my children come home and ask me where I was on 9/11.  While the beginnings of the day are still vague, I remember sitting in my dorm room at UNLV.  My suitemate, Julie, had told us that something had happened.  Not realizing the full meaning of what had happened, I went to my first class.  When I returned, my roommate and both suitemates were in our dorm room watching the news.  It was then that I realized exactly what had happened to our country that day. Like most Americans, I thought the World Trade Center was untouchable.  There had been bombing attempts before that failed to take the buildings down.  Watching the towers crumble, it was a harsh reality that life was we knew it was over. In the days that followed, I remember Las Vegas being a ghost town.  It used to take at least an hour to get from one end of the strip to the other. ...

As most of you all know, we were in Cincinnati two weeks ago for Spina Bifida clinic, some Urology testing, and for a consultation with a plastic surgeon.  Kennedy will be having surgery the end of September (I was told the 25th, but that could change) and the plastic surgeon will be cleaning up her fetal surgery repair site. During clinic the Physical Therapist Doctor said she wants Kennedy to have another Manual Muscle Test done before surgery.  This will be done to get a baseline on her mobility before surgery.  It's an important step to making sure the cyst removal has given her back whatever mobility has been lost due to their presence.  As of right now we have that scheduled for the 18th of September.  However that could change. Last week I received a call from the Urology Department regarding the results of Kennedy's urodynamics test and her renal ultrasound.  Unfortunately Kennedy is no longer completely voiding her bladder and is being put on a...

The first week in August we will be heading up to Cincinnati for Spina Bifida Clinic, a urodynamics test, and a consultation with the Pediatric Plastic Surgeon.  Now that all of these appointments are made I decided to call Dr. Stevenson's office to see about scheduling a surgery date.  As luck would have it, the person who answered the phone does surgery scheduling for Dr. Stevenson.  After looking at the schedule she said we are looking at a surgery date the end of August or sometime in September.  The scheduler will be calling Plastic Surgery tomorrow to see what their schedule is.  Hopefully by the end of the week or beginning of next week we will have a date.  I can't help but think how cool it would be if they scheduled the surgery on the 2nd anniversary of our fetal surgery AKA Butt Day.  Even though we didn't celebrate Butt Day with more than a photo session last year, it really holds a special place in my heart.  I will let everyone know ...

Yesterday morning Kennedy had her second sedated MRI in six months.  The results of her sedated MRI in December showed she had 3 dermoid cysts on her spine.  After her rapid MRI in February, Dr. Stevenson said he wanted to have another sedated MRI to determine if these cysts were growing.  Each of them has grown 2-4 mm's since December.  Right now they aren't causing any problems, but Dr. Stevenson wants to have them taken out before they do become a problem.  He's afraid if we wait more than 6 months they will eventually start pushing on Kennedy's spinal chord and cause her to lose mobility in her legs.  I asked him if we could wait to see what the upcoming December sedated MRI would show in growth.  He told me he'd like that MRI to be a post-op one to make sure everything looks as it should. While Dr. Stevenson is removing the cysts, he will also be detethering Kennedy's spinal chord.  Normally the spinal chord freely moves through the spinal ...