Lennon's Legacy Foundation Bake Sale

Yesterday, we had our first successful fundraiser for the foundation.  With the support of our community, we raised over $1,000. Our dream of supporting families of medically fragile children in southwest Kansas is becoming a reality!

The funds we raised will be used to create and distribute care packages for families who are having to transfer from local hospitals to larger facilities like Wesley Children's Hospital and Via Christi in Wichita, KS, or Children's Mercy in Kansas City.

Those of you who knew our family before Lennon passed probably remember the many, many times we were flown to Wichita so that he could receive care in the PICU from his neurologist, geneticist, and the intensivists.  No matter how often I prepared my emergency bag, I always forgot something. Most often it was things like extra socks, deoderant, chapstick, and hair ties.  Luckily, Wesley was almost always stocked with gift baskets from generous donors.  They also had the Ronald McDonald room down the hall that often gave out toiletries like shampoo, soap, toothbrushes, and toothpaste.  Unfortunately, not all hospitals offer these supports, and until you learn the ins and outs of each facility, you're more than overwhelmed just trying to figure out your child's care.

We want to make things easier for families by meeting them at the hospitals before they transfer.  We'd like to send them with care packages that include those basic necessities, some comfort items, and ideally gift cards so that they can eat and have gas money to get home.  We are hoping to partner with local hospitals so that these care packages are on hand ( or can at least be delivered) in these critical times.

Thank you, thank you, thank you to every person who volunteered, donated, and/or promoted this event.  Because of you, we will be able to make a difference!

Raising money wasn't the only great thing about the fundraiser.  We also got to share our story and the mission of Lennon's Legacy Foundation.  I was so happy to hear people tell us that there is a need for our services.  We had several families talk about their experiences with emergency care and chronic hospitalizations.

I also got to visit with one of the founders of another non-profit organization in Dodge City, Perfect Fit.  (Check them out here: https://www.perfectfit.foundation/home/)  We agreed that there would probably be a lot of overlap with our families, so talks of a partnership beginning.  This is a wonderful thing!

We talked about the isolation that families feel, the lack of awareness, the stigmas surrounding our children, and the need for support for children and families.  We are very proud that southwest Kansas has been recognizing the need for organizations like ours, and we are excited to see what the future holds!

6 Months and Your Legacy

Baby boy,

I carry you with me everywhere, but I miss rubbing your feet in the mornings before work.  My heart still aches when I peek around the corner only to see that you're not there.  Your brothers and sister talk about you all the time.  Dad and I hold in all the words we can't say without shedding tears until they spill over in spite of our careful avoidance.

Processing our grief has proven very difficult.  The past 6 months have been a series of contradictions. Time has flown and dragged, we are happy and sad, everything has changed and stayed the same.

This week we finally realized that Lennon's Legacy Foundation actually has two purposes: the first is obviously our mission statement, but the second is to help us keep your memory alive and process our grief.

There are so many people who say, "if there's anything I can do, let me know."  You can help us make the foundation successful.  Help us remember Lennon. Help us to ensure that everything that he went through will help other families.  Help us provide support to those who have to manage those frequent ER trips, the isolation, the fear, and the uncertainty that comes with caring for a medically needy child.  If we can support families during those hard times, they will have more opportunities to enjoy the special moments.

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!