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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.

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24 hours later

I will be grieving pretty openly the next few days. If you need to keep scrolling that’s ok, I’m not offended. But a lot of the followers are here because they or someone they love care for a medically fragile kid like Nolan. Many of you care for a kid with Lissencephaly. So I want to be transparent and honest. I want you to know how hard this is. But I want you to see that despite how hard this is, I am ok. And when the time comes you can be ok too.

Reflecting on yesterday, these are some of the defining moments outside of Nolan’s passing.When we had to call it in, we were able to get a familiar face and friend in our old home health nurse. Rather than a stranger, we had a friend, a former caretaker, and she prayed and grieved with us.

There will be lots of hard moments, but carrying Nolan out of his room to the gurney was one of the hardest moments I’ll ever have in my life. But I wanted to carry him myself, and I did. I can do hard things.

As the hearse was ready to pull away the school bus pulled up to get the boys for preschool. Rather than making me sad, this reminded me that the world is still turning, and when we are ready to be normal again, our world can start turning again too. I told the bus driver of Nolan’s passing, and we made plans to get Landon back on track Monday. We can do hard things. 

I was so dreading telling Karson. Dad picked him up from school a little early and Justin and I told him in the twins’ room. He was so big. He cried hard, and said this was the worst day of his life. I agreed it was the worst day of mine too. We cried together. We said it’s ok to cry whenever you feel like it. But it’s ok to laugh and play whenever you feel like it too. He wanted some quiet time with us, then he and I snuggled some more. He asked a lot of good questions. A few tears and questions have followed, but he has played hard in between. Marshall did his job, and proved his purpose as Karson’s first giggle was the result of sloppy puppy kisses. There have been many more giggles since. Karson is glad “so many people care”, and has repeated that to us multiple times. He is 6, and he can do hard things.

After making arrangements, Justin and I came home to a porch glowing with candles. This is not a tradition I had heard of, and its sweetness brought me to me my knees. I was on the porch looking at cards as another family pulled up. They continued all night. Some of the gestures are from women who have lost loved ones. One who lost a husband years ago. One who lost a sweet little boy. Even our nurse, whose love for Nolan equals mine lost a daughter years ago. So being kind to us undoubtedly brings back hard memories, but here they are. They can do hard things.

It’s been 24 hours now. One day is behind us.  Soon it will be 24 more. I can do hard things.

Nolan means Champ

I am sad to report that Nolan passed away today. I’ve been wishing I could find more time to write. I’m pained that this is the reason I’ve finally made time.
Nolan has been going downhill for months. A few days ago I packed up for our Labor Day trip to see family with a lump in my throat, and despite extra treatments during the stay, I watched him continue to shut down. As soon as we left the driveway to head back to my home, I broke down in tears to my dad who happened to be driving me and the kids. We both knew Nolan wouldn’t be back to Kentucky.
I cried nearly every moment of the 5 hour journey, knowing that it was time to allow Nolan the chance to let go if that was what he wanted. We arrived in the house, listened to the growing fluid in his lungs that merits a trip to the ER, and made the hardest decision of his life. We decided to stay home.
We decided to let Nolan rest.  
We decided to stop fighting.
I’ve prayed for four years that we would know this moment when it arrived. That we would be given more time, yet never choose quantity over quality. In my heart of broken hearts, I knew the time had come.  
By a Godly coincidence, my parents were already there as they had followed me home and planned to stay a couple of days.  
Justin called his parents who started their 12 hour drive.
We FaceTimed Nolan’s cousin/guardian, Winston, so he could read Nolan that book we never had time for over the weekend.
Karson came in and read a book to him, and kissed him goodnight.
We listened to a cd made by our Findlay Ohio friends. 
Justin read scripture.
We prayed.
We cried.
I slept between the twins and held Nolan all night. I couldn’t sleep so I looked at pictures.


At sunup, we called our Doctor to discuss our plan, and received his support.
As morning arrived, so did Justin’s parents after driving through the night. Now all four grandparents had held Nolan.
Our pastor came to pray.
And I knew it was getting close.
Justin and I had time alone with Nolan and said what was on our hearts.  For the first time, we prayed for less time instead of more.  For a quick and peaceful passing.
I held Nolan close, and with my parents standing by, he breathed his last breath in my arms. I heard his last heartbeat. His heart started beating in my body over four years ago, and it stopped in my arms today.
Now I have a Nolan sized hole in my heart, that nothing can completely fill.
I am thankful for the way that things happened. It happened at home in my arms. He was calm and pain-free. And barring the obvious that I wish he didn’t have to go through this in the first place, I’m not sure what else I could ask for.  
I’ll leave you with a song from that cd that over the years has brought me to my knees, brought me to tears, and brought me to my feet again.  

I don’t know why God didn’t move these mountains, yet here we are on the other side.  We just took a harder, more blessed path.   But we are making it to the other side.  And Nolan is flying high.