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RIP, my bff

9 Jun

Just a few days ago, I “upgraded” my beloved Blackberry and became an iPhone user.  As you would expect, I have a very sweet, inspiring version of the story about how it all relates to my life with Sammy, but I’m going to save that for a future blog entry.

For now, I need to confess the ugly truth.

My name is Leslie, and it has been 4 days since my last Crackberry fix.

After two years of solid performance, my Blackberry Curve (aka, my “bff”) died.  It was late on a rainy Saturday night, and I was over 2 hours away from home at a race track adjacent to a runway at Fort Wayne International Airport. (I’m not making this up!)

As my husband drove us home, he generously let me use his Blackberry Bold, but I absolutely hated it.  While I wanted to toss my Curve out the car window in frustration over its brokenness, after only 5 minutes with the Bold, I wanted to throw his phone out the window and drive over it (and maybe even back up and drive over it a second time for good measure).

The next morning as I was conceding to the demise of my Blackberry, my husband bore the brunt of my Crackberry withdrawal.  With my juvenile whining and grumpy attitude, I not only got on his last nerve, I managed to stomp on that last nerve and mash it into the ground like a spider under my shoe.  It was not one of my finer moments.  I’d compare it to the first time we attempted to hang wallpaper together as newlyweds, except this time, I seemed to be the only one throwing the tantrum.

Logically, I knew that I could go online and simply order a new phone, but overnight shipping wouldn’t be fast enough for me.  I needed a Blackberry, and I needed one quickly.  In search of the nearest Verizon Wireless store, I left the house squealing my tires like a crazed soccer mom running late for practice.

As I left the house, I’m rather certain that my husband mustered every ounce of mercy and grace in his soul to say a prayer for the patience and fortitude of the Verizon sales rep who would be the lucky individual to encounter my “lovely” disposition. It must have worked because before I reached the end of my street, I took a deep breath and had a moment of clarity in which I reminded myself that, “I’m a Christian woman, and I need to act like one.”

At the Verizon Wireless store, sympathetic Kyle drew the short straw and was the one who had to nearly pry my Blackberry Curve out of my hands (and also listen to my repetitive whine of, “…but there’s no keyboard”).  The Bold seemed like a downgrade from my Curve, and even the “new” Curve was a downgrade from my old Curve; thus, my grand leap to an iPhone.  Verizon Kyle patiently held my hand and helped me through the entire process, and I was able to walk out of the store with a fully-functional new “bff”.

I’d like to say that the drama ended there, and I happily drove off into the sunset . . . not quite.  I would spend the next several hours trying to type and erase on a touch screen, scrolling left when I wanted to scroll right, scrolling up when I wanted to scroll down, and tearfully questioning whether I would ever find technological compatibility again.

The loss of my “bff” was traumatic, but now four days later, I can say that my iPhone and I are quickly becoming very good friends.  It has already helped me do the research, make the call, and calendar the appointment for our first session of marital counseling because I think I see some wallpapering in our future!

Momma needs new boots…

12 Dec

There is snow on the ground, and that means that it’s finally time to go to the cemetery to build Sammy a snowman.

I don’t go to the cemetery much even though it’s very close to our home.  I feel like Sammy goes with me everywhere I go because he is so frequently on my mind and in my thoughts–while shopping at the scrapbook store, while driving in the car, while at my desk at work.  But, when I go to the cemetery, that isn’t a reminder that he lived; to me, it’s a reminder that he’s gone.

Sammy passed away in early January, and when we would go to visit his grave site in those first weeks and months, it was cold with gray skies, leafless trees, and frozen grass.  It was just so depressing.  To compensate, I like to try to make it special when I do go to the cemetery.  On one beautiful autumn day, Steve and I had a picnic at Sammy’s gravesite.  Another time, I took our new dog to the cemetery to go for a walk. Other times, Steve and I have gone there to release balloons or to place items on his grave.

One of the things that I want to do is to build a snowman for Sammy at the cemetery.  Last winter, I shopped for a hat and scarf because Sammy’s snowman needs to have some personality.  I have everything we need to build a snowman friend at the cemetery, but the one thing holding me back is that I need new boots.  So, as soon as I get some new boots and we get some good, wet snow, Sammy will get his snowman.

A little boy on the big screen…

18 Oct

This week, Indianapolis is hosting the Heartland Film Festival.  In light of this fact, I thought I’d go back to the archives and repost an entry from Sammy’s website.

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9/26/08 – There are moments when I have no words to describe my thoughts and can only shake my head in utter amazement. This week, I had one of those moments.

I received word that my little Sammy—a boy who couldn’t walk or talk—will appear on the big screen at the Heartland Film Festival, October 16-24. He will appear in the documentary “Auschwitz—If You Cried, You Died”.

I know what you’re thinking, “How in the world did Sammy find his way into a documentary about the Holocaust?

Several months before Sammy passed away, I began working with a graphic designer, Jennifer, to design a logo for Families for HoPE. During the process, she shared with me that she felt God was directing her to tell me about another project on which she was working. Of course, she was probably a little worried about what I would think, but she bravely posed the question, “Do you have any interest in the Holocaust?

In the months prior to her question, I had begun reading a lot about how the German government in the 1930s instituted euthanasia for the systematic killing of the mentally and physically disabled. (The secret operation was code-named “Action T4“—Google it and see for yourself.) Because I had been trying to comprehend how human beings could come to the common understanding that an entire race of people should be exterminated, I had begun reading on topics such as Eugenics, Euthanasia, and Social Darwinism.

Jennifer explained that she was editing a documentary about the Holocaust which chronicles the journey of two Holocaust survivors as they revisit Auschwitz Concentration Camp. The documentary which has been distributed to high schools across the U.S. also addresses the dangers of prejudice, the value of diversity and the need to respect others. The theme of the documentary is that “we must learn from the past to protect our future”, and it addresses topics such as cruelty, bullying, and dehumanization.

There is a segment of the newly-edited version where the students are urged to ask themselves how they treat others based upon appearance, money, race, religion and even upon mental handicaps or physical disabilities. Then, we see Sammy’s cute little face along with a video clip of Steve and me explaining Sammy’s condition and our worries of how our precious little boy might be treated by society as he grows older.

Back to the question, “How in the world did Sammy find his way into a documentary about the Holocaust?” God called upon our “imperfect” child to be used in His Perfect Plan by bringing him into the world not to learn, but to teach.

Graduation Day

23 Sep

Yesterday was graduation day, but there weren’t caps or gowns; no turning of the tassel or playing of Pomp and Circumstance.  To the rest of the world, it was just another Wednesday night, but to us it was a milestone.  Yesterday, we officially “graduated” from grief counseling.

Steve and I began meeting with a therapist two months after Sammy passed away.  Although I think we were probably doing okay at that point considering what we had been through, it seemed like a logical thing to do.

I let Steve select the therapist and make the appointment.  We met with the therapist weekly, and after the first few appointments, I just felt like it wasn’t really helping me much, although Steve was really connecting and making good strides in his mourning.  After about 6 weeks, I began to see how each session was building one upon the other and gradually I felt the sessions were making a noticeable difference.

For the next 18 months, Steve and I would continue our weekly sessions with the therapist. Occasionally, we would need to reschedule due to a conflict on the calendar, and if we missed a week, I could definitely feel it.  But in time, we began scheduling appointments for every other week, then monthly.

Participating in counseling was therapeutic and was one of the best decisions we could have ever made.  A few weeks ago, I was thinking about our sessions, and it occurred to me that we’ve been in grief counseling for 2 1/2 years.  “2 1/2 years?”  My next question to myself was, “Why are we still in therapy?”  That’s when I knew that we were ready for graduation day.

I’m special because…

18 Aug

As I was going through some of the old files on my laptop tonight, I came across a file marked “Fathers Day” from June 2005.  I opened the file and it was obvious that I had written it, but I honestly don’t remember writing it…

Photography by JJ Kaplan, Color My World Studios

Some people say I’m “special” because I am challenged by a disability.  I don’t think I’m all that special, but I definitely feel special when I’m with my daddy!  When he picks me up, I can see everything around me, and I feel so tall.  When I go down the slide at the park, I’m not afraid because I know that my daddy won’t let me fall.

God gave my daddy big, broad shoulders, and he uses those shoulders to carry all of my burdens for me.  He pushes me and guides me in my wheelchair, and he’s extra, extra careful whenever I’m a passenger in the car.  He has big hands, but he’s very delicate and tender when he’s holding me.  He’s my protector.

Daddy talks to all of my doctors, and he explains to them how I am feeling.  My daddy isn’t a doctor, but he sure does sound like one sometimes.  Daddy gets advice from my doctors, but he ultimately seeks direction and wisdom from the Great Physician.  My daddy is a man who puts all of his faith and trust in the Lord and prays that he is the kind of father that the Lord wants him to be.

My daddy works really hard to make our home nice, and he even built a butterfly garden in my backyard just for me.  He very carefully chose each plant and flower specifically with me in mind.  On days when I cannot go outside, I can see the bright flowers from the window, and I can see the butterflies and hummingbirds fluttering their wings from plant to plant.  When I am able to go outside, there are many things in the garden for me to see, touch and smell.  He encourages me to touch bugs and never scolds me for putting my hands in the mud.  He even puts his hands in the mud too.

Night time is my favorite time because Daddy lets me snuggle in his lap, and he lets me hold the remote!  We watch Superman together, and he tells me when the story doesn’t follow the comic books he read when he was a boy.  Clark Kent is okay, but my daddy is the real “super man” in my life.

I’m not special because I have a disability; I’m special because my daddy loves me!

Good Friday 2003

10 Apr

Today is Sammy’s birthday, and it’s also Good Friday.  In 2003 when Sammy was born, Good Friday was April 17.  I remember this because it is the day that Sammy had his first medical crisis.  While only 7 days old and still in the NICU, Sammy began to show symptoms that something was terribly wrong.  At 5:00 that morning, we received a phone call at home that we needed to get to the hospital as soon as possible because Sammy had taken a turn for the worse.

We were prepared for issues that might typically affect an infant with HPE; however, we were in shock when we learned that Sammy had developed necrotizing enterocolitis (NEC).  “Necrotizing” means the death of tissue, “entero” refers to the small intestine, “colo” to the large intestine, and “itis” means inflammation.  What I realized in that moment was that I could educate myself and prepare for the “typical”, but Sammy was going to be anything but typical.  I was prepared for the possibility of seizures, g-tubes, hormone imbalances; however, I had underestimated the fact that Sammy could also get the same illnesses that affect other babies without HPE.

Each hour, a mobile xray machine would come to Sammy’s bedside so that the neonatologists could monitor his intestines for a perforation.  By noon that day, the xray showed the perforation and confirmed that bacteria was spreading through his abdomen.  Steve, my parents, and I were in the hospital cafeteria trying to feed our bodies in preparation for the long and stressful day when we heard our names paged over the hospital intercom system.  It was a deja vu moment for us because just two years prior, we had been paged over a hospital intercom when Steve’s father died.  (Since that time, I’ve spent enough time in the hospital to figure out that no one gets paged over the intercom unless it’s a serious emergency.  I now work in a hospital, so whenever I hear someone paged during my workday, I automatically say a silent prayer for the person being paged and their family.)

My memory tends to get a little bit blurry when it comes to all of the details from that day, but there are many events from that day that stick with me today.  The cafeteria was in the basement of the hospital, so we ran up the stairs and ran down a long hallway to the NICU.  I was 7 days post-op from my c-section, and stair-climing and hallway-running were not in a part of my doctors’ orders, but it didn’t matter because Sammy was the most important thing on my mind.

I remember the surgeon coming in to talk with us and explain the surgery.  I remember her telling us that she was going to do everything possible to salvage as much of the intestines as she could.  If she were in the OR for a long time, that was good.  If she were out in a short amount of time, it would mean that the intestines were too severely damaged and there would be nothing that she could do except to close the incision and make him comfortable.  If the later were the case, she estimated that he would probably not survive over 18 hours.

Sammy had an IV in his arm, and I remember his nurse worrying about that IV line.  She kept checking it, flushing it, and trying to find a better IV site because she was afraid that it wouldn’t hold up.  Sammy was lying in a baby warmer, the NICU was warm, and his nurse was wearing a isolation gown.  I noticed that the nurse’s nose was beginning to run with her head down, and she was trying her best to sniff and make it stop.  I didn’t think that she had a cold, but I remember asking her if she did.  I’ll never forget that moment when she looked up to make eye contact with me, and I saw that she had tears in her eyes.  (A few days later, I asked her if she was crying because she was afraid he was going to die, and she explained by saying, “I didn’t cry because I thought he was going to die; I cried because I love him.”)

Sammy went into surgery around 4pm, and Steve, my parents, and I were directed to the surgical waiting room.  Once I had an opportunity to sit down and think, I realized that I hadn’t heard from anyone from our church even though I had left a message on the church voicemail very early that morning.  In that moment, I remembered that it was Good Friday, and the church office was closed so no one had even heard my message.  Our cell phone battery was almost dead, but we had just enough juice left to look up a phone number of one of the ministry leaders.  Steve made the call, and within 15 minutes, friends and our church family were pouring into the surgical waiting room.  My parents were shocked that so many people were willing to drop everything on a Friday night and come at a moment’s notice to be with us.  People trickled in the entire night, and we were continually surrounded by love, support, and prayer.

One of the hardest things to understand and grasp that day was the fact that it was Good Friday.  As Christians, Good Friday is the day when we remember the sacrifice and suffering of Jesus Christ.  I remember feeling overwhelmed by the irony that it was the day that God’s Son died, and it could possibly be the day that my son would die as well.  That was a lot for me to take in.

As each minute ticked by, we struggled between despair and hope.  There was a surgical nurse who would come out to us with updates as often as she could, and we were desperate to hear good news.  Because the surgeon had said that a short surgery would indicate an inability to repair his intestines, we didn’t want to see the nurse too soon.  The later the evening grew, the more our hope grew.  Finally, the nurse came to tell us that the surgery was over, and it had gone well!  We were bouncing off the walls and praising the Lord!

It was around 10pm before we were finally able to talk with the surgeon and see Sammy.  The surgeon told us that portions of Sammy’s intestines fell apart in her hands, and she had to literally peel portions of his intestines off his other organs.  She said that she had inspected every inch of Sammy’s intestines, and she was able to save all but one foot of his small intestine and 1/2 of his large intestine.  She had constructed an ileostomy which is where the end of the small intestine (the ileum) is brought out onto the surface of the skin.  She said that on the outside of Sam’s abdomen, we would see the tip of his intestine, and she described its appearance as a “rose bud”.  Around the rosebud would be a plastic bag or pouch which would collect the waste.

The surgery was successful, but it would be weeks before Sammy would recover completely from the infection.  There were many times when we wondered if we were making the right decisions for him, but Sammy showed us that he was strong, and he wasn’t giving up.  I would like to think that we were exhibiting the same qualities of strength, endurance, and perseverance and that our Heavenly Father was as proud of us as we were of our son in that moment.


6 Apr

Sammy’s birthday is on Friday, April 10; it would be his 6th birthday.  It’s difficult to believe that this is the second birthday we have celebrated since Sammy went to heaven.  Last year, we went out to lunch with family members and the nurses who cared for Sammy in our home.  After lunch, we all gathered at Sammy’s preschool as his teachers and classmates joined us in releasing balloons in memory of Sammy.  A few days after his birthday, we also attended a concert by Chris Rice, one of Sammy’s favorite singers/songwriters.

Over the past few weeks, Steve and I have been trying to determine how we might honor Sammy’s birthday this year.  We finally decided to take a road trip to West Virginia to make a special delivery to David, a little boy with HPE.  We will begin our trip on Friday, Sammy’s birthday.  For the past year, Sammy’s wheelchair has sat empty, and we have decided that it’s time to give the wheelchair a new home.  David needs a wheelchair, and we think Sammy would be happy if he knew that his “Cadillac” will be going to another little boy.

It hasn’t been easy to let go of Sammy’s things.  We don’t hold onto these things because of their material worth, but so many of Sammy’s things hold such memories for us.  Many sweet memories surround Sammy’s wheelchair.  Sammy’s wheelchair allowed him to roll down Main Street at Disney World.  At preschool, all of Sammy’s classmates would gather behind his wheelchair, and they would give Sammy a group escort to his awaiting school bus.  Because Sammy never traveled lightly, it wasn’t uncommon to lift Sammy out of his chair, and then see the the entire wheelchair tip backward without his weight in the chair to counter balance it.  Before we give it to David, I may even have to let someone push the wheel of the chair over my foot one last time for old-times sake!

On the night that Sammy passed away, it was so very strange for us to drive home in the van with an empty wheelchair sitting in the spot where Sammy should have been sitting.  Sammy’s wheelchair sat untouched for nearly 10 months as I just couldn’t bring myself to go through the storage pockets and remove the supplies and items that we had stored there.  Even a year later, I still haven’t gotten comfortable in walking through the front door of church without pushing that wheelchair, so Steve and I have found that if we enter and exit through a side door, it doesn’t feel as unnatural to us.  Some of my identity was wrapped up into that chair because everyone just automatically knew it was Sammy Harley rolling through those doors on Sunday morning.

But now, it’s time to let go, and the wheelchair is our first step.  Sammy’s journey has ended, but the journey for David is just beginning.  We’re excited that David’s family will be able to use our gift to make special memories with their son.  Maybe it will even make a return trip to Disney World one day!