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Waves . . .

5 Jul

I’ve been told that grief comes in waves, and I can testify to that.  There are days when it just laps at my feet, but there are others when a wave catches me off guard and knocks me off my feet.  This holiday weekend brought a tidal wave, and I wasn’t expecting it.  Throughout the weekend, I found myself remembering how we spent the 4th of July with Sammy through the years.  (And, you can read the record of those years documented on this site.)  On Sammy’s first 4th of July, we sat at his bedside in the NICU while he recovered from the surgery to receive his tracheostomy.

David’s new wheels . . .

26 Apr

Our trip to West Virginia was a very nice one.  Little David was absolutely adorable, and we truly loved spending time with him and his family!

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.

Always . . .

9 Apr

I participated in a little retail therapy tonight with my friend, Arika.  Like Sammy, her daughter Madelyn was born with HPE.  Arika was with us the night that Sammy passed away, and I was there with her and her husband when they said goodbye to their beloved daughter last June.  As I drove home from our excursion, I heard a new song on the radio that I’d never heard before.  It’s called “Always”, it was inspired by a bereaved mother who was mourning her son on his birthday.  It seemed like it was a song that I was supposed to hear, so I thought I’d share it.  Here’s a link:  Always by Building 429


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!

6th birthday

31 Mar

Sammy’s birthday is just around the corner on April 10, and it would be his 6th birthday.  Rather than focusing on our loss and sadness, it’s important for us to focus on the wonderful memories that we created with him.  In thinking about how we can honor Sammy on his birthday, Steve and I have decided to give Sammy’s wheelchair to another little boy with HPE.  Sammy’s wheelchair went to so many great places during Sammy’s life, and we’re excited to think that his wheelchair will once again be on the move.  Steve and I will be driving to West Virginia on Easter weekend to deliver the chair in person.  As we stop at rest areas along the way, we will release a few helium balloons and possibly have the opportunity to share Sammy’s story and our hope with others.

Sons of Thunder

28 Mar

As I type, I’m listening to the pouring rain outside and the thunder that comes with a spring thunderstorm.  Sammy definitely did not like thunder, and during storms, I would often tell him about how Jesus gave John and James the nickname of “sons of thunder”.  In one of my last conversations with Sammy, I whispered in his ear and told him about what he would find in heaven.  Just as a parent might mentally prepare a child for his or her very first day of school, I told him about what he might see and who he might meet in the next phase of his journey. I reminded him that he would meet Zebedee and his sons, John and James, and they would teach him about where the thunder comes from.  When I hear thunder now, I smile because I picture Sammy in heaven hanging out with John and James, and I wonder just what nickname they have given to him.