Lennon's Legacy in Action

We had a lot of ups and downs during our time with Lennon. It often felt like we couldn't catch a break. If it wasn't a late shipment of meds, it was another hospitalization, or an issue with billing, our own payroll, or something broken at home.  There were even a few times that we found ourselves with car trouble...

A broken window on a vehicle is a pain for any family; but for a family that constantly feels the pressure of having to be on top of things all the time, it is even worse. 

Our nurse and friend "Miss Nikki" watched us go through these minor irritations over and over again, so when she learned about a family with a broken window on their van, she spoke up right away.

Knowing the frustration of dealing with vehicle repairs and constantly needing to travel for doctor's appointments, we wanted to move quickly to help this family.  We started making phone calls that afternoon and by the next morning were able to come up with a solution.

With the support of two community businesses, Discount Glass and Dodge City Salvage, we were able to locate and arrange for the installation of a new window. The family was then able to schedule the installation at their convenience.  I know it might sound selfish, but it gives me a sense of peace knowing that they had one less thing to worry about this week.

Although this is not what we had originally talked about doing for Lennon's Legacy Foundation, our mission does say that we are going to support the families of medically needy children. We hope to take the pressure off families so that they can focus solely on the care of their children.

100 Days

It's been 100 days... Last night was the first that I dreamed about my sweet boy. I got to hear his laugh again. 💚

Yesterday we learned of a family in need. Lennon's Legacy Foundation is working with community partners to provide them with support. Updates coming soon.

Looks can be deceiving

I've had this post saved in the drafts for nearly two months.  I wasn't sure if I should post it, but since I still feel these things, why not?   (The additions from this month are in blue.)

*****

It was an offhand comment that wasn't even said to me, but it was about me. The person who said it probably didn't mean any harm, but it has been wreaking havoc on my heart.

"She looks like she's doing fine."

Oh honey... I am not fine.

I may not be hiding away from the world, but I am not fully present.

I may be out and about with my family, but the greatest part of me is stuck in the empty spaces of my heart, sifting through memories.

You might see me smiling and laughing, but every memory is tinged with hues of sadness that my baby is not able to share those moments with me.

I guess my grief doesn't present itself in the way that some would expect.


I am not fine.  (WE are not fine!)

Nobody prepared us for life without Lennon.  EVERYTHING reminds us of him.  We still find ourselves walking by the place where his bed was to kiss him.  I still hear his alarms at night.  Nikki still drives to our house in the morning.  We try to stay asleep to see him in our dreams. It has been three months and we still look and listen for him... only now we make due with what little remains.  

It's not fulfilling.  Those pictures aren't him.  His clothes arent him.  His toys and books aren't him.  What I wouldn't give to rub his feet or wash his hair one more time.

There is a huge empty space in our house, our minds, and our hearts where he belongs.  It has even made us question whether we are still cut our for our careers and hobbies.  Our priorities are definitely shifting.

The kids will ask me, "Do you think Lennon is walking right now?"  "Will you read us what people wrote in his book?" "Do you remember when Lennon ___________________."  I catch them just looking at his shelf, reading his baby books, playing with his toys, talking and crying with each other.  It's bittersweet and beautiful.

It seems to me that grief is often met with misunderstanding.

You're grieving too long or not long enough...
You're crying too much or not enough...
You're traveling too much or not enough...
How could you go back to work so soon?
How can you stand to stay at home without him?
You need to box his stuff up so it isn't a constant reminder.
Are you boxing him up so that you can forget about him?
You should _____________.

The next time you see someone grieving, whether it's death or a different kind of loss, support them.  Offer to listen, or just to sit and be present for them.  Better yet, ask them if there is anything you can do to help.  Don't make their process about what you think they should do... after all, it is their grief.  As long as they are not doing harm to themselves or others, let them grieve in their own way and their own time.  Please don't make assumptions either.

September 3, 2019

Billy Joel, Bunnies, and Bad Dreams

I don't care what consequence it brings
I have been a fool for lesser things
I want you so bad
I think you ought to know that
I intend to hold you for the longest time


I sang that song countless times to my boy.  I remember him being upset before his g-tube placement surgery. He was hungry and they were about an hour behind schedule. I wasn't sure if he was going to be able to relax before the procedure, but I started singing anyway.  No matter how irritated he was, that song calmed him down.  We would sit and rock, or I would stand at bedside and play with his curls.  It never failed.

Lately Billy Joel (and quite a few others from Lennon's playlist) have found their way to us. Twice in the last week Miss Nikki has sent me Snapchats of Lennon's songs.  Music has always found a way to speak to me, but it's even more intense now.


We are always thankful for the reminders of Lennon. Even when our memories leak out and streak our faces.  When summer first started, we'd notice bunnies in our yard.  We'd see them every morning and night when we walked. We'd see them when we were driving around town. We'd see them in places that didn't even make sense (Walmart parking lot?)  

Maybe it's just a coping mechanism, or maybe it is a coincidence, but it helps us get through the day.  


Our first month, things seemed to move forward, even though we weren't sure what we were doing.  The last couple of weeks, time has seemed to stand still.  It feels like he has been gone for a LONG time.  His life was so short and the days without him seem everlasting.  We dream about his last day over and over again. We relive the morning after, waking up knowing that he's gone.  

It's been just over 2 months, and we're still not sure how to do this.  

My heart hurts for all of us.


Thanks you to everyone who has checked in, shared photos, asked how we're doing, or offered their support.  The times we do best are when we're surrounded by friends and family.

Huge News!

We are officially a 501c-3 foundation! More details to come soon!

It's not just me...

Shout out to those of you who have taken the time to show your care for my husband and kids.  I'm not the only one who suffered a loss.  They need the love, hugs, and encouragement just as much as I do. 

Their happiness is genuine, but those moments are always bittersweet.

You'll just know

One of the most imperative questions I found myself asking throughout Lennon's journey was, "How will we know when enough is enough?"  Everyone told us that we'd "just know."  I remember the moment that happened for me. 

Wednesday, May 29th, 2019

Dr. Haws woke me up and said, "He's over 150."  I still wanted to fight, but it was at that moment when I really started thinking that we might be at the end of the road.  There was still an out, we were waiting on bloodwork.  Surely he would test positive for some kind of virus, he always did... but there was nothing viral or bacterial to be found.  His body was simply shutting down.  We decided to intubate and I asked dad to bring the family to Wichita. 

Intubation did not go well.  His oxygen saturation rapidly dropped into the 60s on the first attempt.  Dr. Haws has a terrible poker face and her concern was immediately visible.  The second attempt was better, but there was a bunch of tracheal aspirate (fluid that was sitting in his airway) that came up when the breathing tube was placed.  I was giving dad the play-by-play as it happened, and he texted, "Did we make the right decision?"  The wheels were spinning for both of us by this point.

Around 10:00, Dr. Smith came in to do rounds.  He informed me that Lennon's right lung had started to collapse, so using the ventilator would provide support for the lung to open back up.  It would also help get his CO2 level back into the normal range. I called Nikki and my mom. Even though there was talk of going home, it was very conditional.  We knew that our options were all less than desireable:  CPAP 18+ hours per day, ventilator, or back to oxygen and call hospice. 

The rest of the day went fairly well, but that evening seizures like we had never seen started. He was jerking both of his arms up by his face and then his eyes would cross and roll.  Ativan took care of that fairly quickly, but they had to give him both Ativan and Presedex to keep him calm enough to leave the tube alone.  

Thursday, May 30, 2019

In the morning our nurse told me that there had been staph bacteria found in his secretions.  She also let me know that Ativan had to be given at 3:00 and 6:00 to keep him from being agitated.  He was pissed.  He was tired.  He was letting everyone know about it too. After rounds, Chris and I sat down and talked more about going home or not.  The words had finally come out of our mouths.  At first we decided to wait until Saturday to give his lungs time to recover before extubating.  I remember looking at Lennon and then at Chris and asking "What for?"  Why would we go home just to put him through this all again?

The PICC line had taken almost 4 hours and two attempts to set, they had to try twice before getting the breathing tube placed, breathing treatments, percussion vest, being woke up every 2-4 hours for some kind of poke, prod, or shake... how could this be a life worth living?  Nobody could even tell us if going home would be for hours, days, or weeks.  (They weren't even willing to say months at that point.) I felt like a failure and a traitor, but I "just knew" that Lennon's life had become labored.  It was hard work for him to just be present.  

After rounds, Chris was the brave one.  He chose to bear the burden of asking to speak to the doctor about end of life procedures.  Hearing the words out loud stole my breath.  I felt like someone had taken a hammer to my heart, even though we both agreed.

My heart goes out to anyone who has ever had to make this choice.  Lennon's death certificate listed many things, but the worst one for me was "Withdrawal of Care."  That is NOT what happened.

You see, Lennon went out with several long, peaceful hours of snuggles from his siblings, grandma, mom and dad, and of course Nikki.  Nikki and I bathed him, making sure to get his beautiful curls back in place, and then dressed him in his Batman outfit.  His shirt read, "I Got This."  He fought like a soldier.  He was breathing on his own, listening to his favorite music, and getting his big kid version of pass the baby.

A little after 9:00, we sent Dallas, grandma, and the kids back to the hotel.  As Chris walked them downstairs, Lennon's stats began to drop.  By the time he got back to the room, we asked him to pull up a chair.  I was in the bed with Lennon in my arms, dad sat over the rail, and Nikki sat near his feet.  We told him we loved him and how proud we were, and held him as his spirit left his body... Like everyone said, we "just knew" when that moment came too.

There is much more to this story that is too hard to put into words.  It was the most beautiful and devastating thing I have ever experienced. I was barely able to get this down, even after stopping multiple times to care for my leaking face.  It's been over a month and I still feel the weight of him in my arms and the weight of the choice that we made.  I can only hope to honor my little superhero by sharing his story and advocating for others like him.