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Nolan’s Service

Song: I Trust In You

In Honor of Nolan’s siblings:

Nolan was a brother to 3 amazing children.  Isabella just joined the crew.  But her presence, her timing, and her spirit were undoubtedly a blessing from God.  While her time with Nolan was brief, it is obvious that she is here now to help comfort the family through the loss of Nolan.  She helped make us strong enough to let go. 

Landon and Nolan will forever be connected.  I don’t know how long it will be before I can say Landon without saying “they” “the boys” or “the twins”.  They were a team.  Landon took on the big brother role in many ways.  He was born first.  He was bigger.  And early on, he took on the harder paths.  Often seeming as though he was taking the hard road so Nolan could have the easier one.  Their roles changed in recent months.  And those closest to Nolan believe he was ready to take on the hard path, so Landon could continue to thrive.  It was reaching a point where the only way we could continue to give Landon, who is currently living his best days, the life he deserves, is if Nolan was willing to go home to be with Jesus. So Nolan did. 

The oldest of the crew, 6 year old Karson is wise beyond his years.  When we first learned during the pregnancy that the boys would likely have special needs, I changed how I prepared Karson for their arrival.  Instead of talking about how fun it would be to have two new bouncing baby boys and play mates, I talked about how lucky we were going to be to be their chosen caretakers.  At bedtime, we would pray for God to give us time with them for happy memories.  And I told a story to Karson each night at bedtime about walking down a beautiful pathway, surrounded by God’s beautiful creation.  In that story, he would stop to look at flowers, skip rocks across a glassy pond, look for shapes in fluffy clouds, listen to the songs of birds, and of course eat cookies and road trip snacks.  All while walking across the crunchy path, and pulling those brothers he had not yet met behind him in a wagon.  I wanted to prepare him to be a helper.  To pull not only his weight, but theirs too.  All while remembering to stop to smell the flowers, listen to birds, and of course, eat lots of cookies and road trip snacks.  Karson, you did that. You were the brother God asked you to be.  When you are older, I will continue to remind you of that.  You always loved Nolan and Landon for who they were, exactly as they were.  Our special buddies.  Nolan’s role in that story was to ride in the wagon, and smile as Karson taught him about the world.      And smile Nolan did. 

Song: Brother Let Me Be Your Shelter

In honor of Nolan’s life:

This is a hard day.  Caskets aren’t supposed to be this size.  And no matter how ill we knew Nolan was, or how prepared we thought we were, our hearts will always ache for him.  We started this journey in July of 2013.  We knew that Nolan and his brother Landon would be very sick.  We were supposed to be planning a nursery, but instead were told that abortion was a better option.  We knew that this path would be hard.  But we chose this path.  We chose life.  And not just the birth, but we chose to live life to the fullest with Landon and Nolan by our side.  We chose love.   We chose joy.  Let’s reflect on a few of Nolan’s joyful moments.

In August of 2013, the pregnancy was high risk, but our resolve as parents was higher.  We cried hard, we prayed harder.  The twins weren’t doing well, and Nolan in particular had stopped growing.  During one specialist appointment, we were told of concerns that Nolan may not survive the pregnancy if we waited much longer, but 30 weeks was awfully early to deliver frail babies.  We needed time.   Our best plan was to take steroids, and come back in a week.  If Nolan was the same, we could wait one more week as an in-patient stay. If he declined further we would do the C-section right away.  No one discussed what we would do it he grew and got stronger, because he couldn’t.  But Nolan did.  He grew, bought us more time, and the boys were eventually strong enough to be born by 34 weeks. 

When the twins were first rolled through the hospital by family, on their way to the NICU, Nolan was tiny and limp.  Family members had a hard time looking on, and others a harder time looking away, because it looked like Nolan wouldn’t make it.  But Nolan did. 

Early on, Nolan dipped below 3 pounds, and had a very hard time eating and gaining weight.  Hours upon hours were spent carefully feeding him.  Sometimes through a dropper when he was tired.  No one could have ever pictured him tolerating food enough to have full cheeks, and an adorably round little belly.  But with a little help, Nolan did. 

He had a habit of showing off in front of the doctors.  During one early neurological appointment, we were being reminded of all the things the boys would never do.  It was an honest, but hard conversation.  Most of it has proven to be true.  But I’ll never forget that while the Doctor was talking to us about the nevers, including purposeful movement, Nolan rolled over on the exam table.  She was literally saying he wouldn’t be able to roll, as Nolan did. 

At an early eye exam, we were talking about how poor their vision would be, and how they may never track or focus.  During the exam, Nolan opened his eyes, looked at his mama, and followed me around the room with his gaze.  It was a rare moment, but though thought to be impossible, Nolan did it. 

Nolan never passed a hearing test.  Yet he recognized the voices, of Karson, daddy, mommy, and Miss Darra.  He sometimes smiled when Landon fussed.  His favorite toy was a push button that activated Olaf’s voice.   And if he didn’t like your voice, didn’t know you yet, or didn’t like what you were asking him to do.  He would ignore you, and choose not to participate.  When those unfamiliar voices left, he would smile, and peak out from behind those eye lids.  He wasn’t supposed to be able to hear, much less recognize voices.  But Nolan did. 

Landon’s first hospital stay was unfamiliar territory to us.  I was nervous and wasn’t sure how to react, or what would happen.  For the first time since coming home, we split the boys up one night.  I took Landon to the ER and Justin kept Nolan and Karson at home.  Nolan hadn’t been sick at all, and had absolutely no reason to join us.  But he had a sudden onset of what looked like seizure activity, and scared daddy in to meeting us in the ER. He ended up trumping Landon and getting life flighted to the children’s hospital ahead of us.  By the time I arrived, they had taken him off of the breathing tube and he was resting comfortably.  I greeted the team, and walked over in time to catch a dimpled smirk.  The medical team’s confused response was  “He seems to be doing great”.   He had to get creative to find his way back to Landon.  And Nolan did. 

Around 5 months later, Landon was in a fight for his life.  Ventilator, chest tube and all.  From 2.5 hours way, Nolan’s nurse Darra and Amy called me with concern for Nolan.  He was “off”, and we were afraid he was just trailing behind Landon but headed for the same course.  He ended up getting a flight via a fancy straight wing, and landed in the PICU two doors down from Landon!  He didn’t stay there long, as it didn’t take them long to see that he wasn’t sick after all.  He had once again tricked his way in to getting closer to Landon.  If you followed our photos, there’s one from that stay where he is smiling and sticking his tongue out at the camera.   Nolan wasn’t supposed to be able to understand who his brother was, much less miss him.  He wasn’t supposed to be able to do ornery things, or smile when he got his way.  But Nolan did. 

There are more stories like that throughout the years.  Nolan did things we never expected him to do, and brought joy we never knew could exist.   He wasn’t supposed to be.  But he was.  He wasn’t supposed to live to see his second birthday, but he nearly doubled that. 

The last 4 years have been full of ups and downs.  I have celebrated the tiniest of milestones, and I have cried over some of the toughest defeats.  We’ve spent countless days in the hospital, the NICU, the PICU, and running to appointments.  But we’ve also gone to the beach, the children’s museum, the pool, the park, the movie theater, the drive in, and plenty of other fun memory making destinations.  During his final months Nolan held his baby sister, played with a silly pup named Marshall, relaxed in a lazy river, rode a train, tasted ice cream and papaw’s strawberry jelly, bounced in a bounce house with Mrs. Darra, danced at Aunt Brittney’s wedding, and snuggled with all of his grandparents and great grandparents.   We asked God to give us time for happy memories.  And He did.

When the end came, we prayed for peace for all of us.  For our decision.  For Nolan’s comfort.  For our hearts afterward.  We asked God to take him gently.  And He did. 

Nolan died on Sept 5th.  But he LIVED for 1,449 days.  He smiled with his whole body, and he loved with his whole heart.  He had the best cheeks around and all who met him had to touch his curly hair, to which he would generally scowl in protest.   He experienced joy.  He spread joy.  Many of you are here today because you were impacted by his life.  So at Melody’s request, re-enter the world impacted by his death.  Continue to experience joy.  Treasure the days, not just the years.  Choose to live.  Choose to love.  Choose to spread joy.  After all, Nolan did.

Song: My Story

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One week later

One week has passed.  Slowly.  Quickly.  Painfully.  Peacefully.

Each day has brought new challenges.  New to dos.  New emotions.  

Last week was far busier than I could have imagined.  Being busy planning the service provided a meaningful distraction.  But it was also a physically and emotionally exhausting week.

Saturday was so perfect and special.  I’m still gathering photos but plan to share the service with you soon.  I have over 180 balloon photos thus far.  I have so loved seeing your #fornolan posts.

I asked my family to stay and help us roll one chair in to church on Sunday.  The sermon couldn’t have been more fitting. 

Monday felt like a Monday.  Tuesday felt like a Monday.  We are back at work.  We are still exhausted.  We are getting the house back in order.  We have caught up on laundry, sorted through some of the medical supplies, shared flowers and food with others, read cards, and still have a few gifts to get through.

Each night we light candles and play music in Landon’s room.  It will always be a special space for Nolan too.  There is a sweet spirit there.

Tomorrow there are more to dos awaiting.  And it may just feel like Monday. But we’ll get through that Monday too.

Working through the Checklist

Wednesday was a busy day.  We’ve had a lot of to dos to work on.  It’s a nice way to be busy, and it provides a purpose beyond grieving.  Although grieving does and will remain on the to do list as well.  We are basically throwing Nolan’s final party, and I want to do it right.

Wednesday’s errands were focused on flowers and clothing.

Our first stop was a florist.  It didn’t go well.  I don’t think I’m typically a high maintenance person, but I’ll admit that there’s a chance I am emotionally fragile right now, and perhaps harder to please.   But it just wasn’t right.  We chose a beautiful baby blue and white option that would display lovely on his white casket.  Even as we were going through it I felt like it wasn’t going to be what I was asking for, and while there will be a lot of emotions when I enter the room on Saturday morning to see Nolan, I can’t stomach disappointment over flowers being one of them.  That should be a beautiful part.  I bit my tongue a time or two and finally told my mom and Justin’s mom I had to get out of there.  We left (so fast I forgot my purse), commiserated in the car, and agreed we needed to find another place and start over.  I texted my coworkers and they came back with a consistent answer, so off to location 2 we went.

We were where we were supposed to be.  I could immediately tell.  It was quiet, peaceful, and when I explained why we were there I was greeted with a hug.  We started down a path for flowers and when I said his favorite color was green if she had enough green flowers to work that in, she said “I’ll be right back”.  She returned with green flowers and green ribbon.  Obviously Nolan’s flowers shouldn’t be baby blue.  They should be Nolan’s green.  And she had a plan to make that happen.

Already feeling so thankful we had started over so I could get it right, we began to walk around and pick out a few favorite keepsakes in case people call asking what they should send.  We chose a stone, a wind chime, a blanket, and I really want my own peace Lily for him.  We were looking at the Willow Tree items and many of the ones she pulled out I either had already, or they didn’t quite fit.  She went back to her inventory to look up the meaning of one, but I already knew it wasn’t right.  I put it back in the shelf and picked up a few more.  There was one I almost missed, as it was behind the wooden support.  As soon as I picked it up I cried.  I saw me holding Nolan, as this was how I held him as he passed.  I couldn’t get any words out so I just turned around and showed it to mom and Dee Dee.  They were already crying too.  We all saw me holding Nolan.   We bought that one right away.  We were where we supposed to be.

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The journey for clothes took time too.  We browsed several stores, and I kept hoping something green would pop out at me.  At store #5, it finally did.  It would have been easy to miss, but mom saw a green shirt on a back rack  After some looking, we found 2 more.  All 3 boys can match.  And they will all be in green for Nolan.

Patience was key, but after a long day, I know we got it right.

Our nurse returned for the first time.  That was hard, but she, Justin and I snuggled Landon, and talked about Nolan being better off now.

After dinner, Justin and I chose music for the visitation and narrowed down our songs for the service.  I already had 2 cds that had been made for us by friends over the years, and I’ve listened to those so many times during good times and bad.  It was therapeutic, and helped me get in a mindset to write Nolan’s story for the service.

I stayed up late in to the quiet night writing the service by Landon’s bedside.  I’d love to be the one to read it, but I’m certain that’s impossible.  And that’s ok too.  The pastor will be here later this morning to walk through the program with me.

The theme for the day was that the little things matter.  The color of the flowers mattered.  The color of the shirts mattered.  Being patient until we got it right mattered.  That little willow tree mattered.  Karson had a friend who delivered a basket of goodies she picked from her home.  “Just some stuff she got from around the house” her mom said.  It was “little”, but showing him she cared mattered.  The words through texts, facebook, and the blog matter.  I am reading them all, repeatedly.  Usually again before I fall asleep at night.  You may feel like what you are saying doesn’t matter, especially among 100s of comments.  But they all matter.

Perhaps picking up on my mood, the pup has wandered around the house, often stopping at my feet.  His sweet little paws and sad face made me smile, and they mattered.

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Having family around matters.  We’ve cried and stopped crying, and cried again over and over.  Last night, Mipa took his teeth out and tried to hand them to my dad.  “Brush these for me” he said.  So my dad said “let me get something to hold them with” and grabbed his dirty sock.   Laughing matters too.