3 years, 2 months, 16 days (and then some)

It has finally happened.  You've been gone longer than you were here.

I miss you every day my beautiful boy.

Mitochondrial Disease Awareness Week 2021

 World Mitochondrial Disease Awareness Week is September 19th - 25th, 2021, which makes today Day 1.

I woke up realizing that I'm wrapped in one of Lennon's old blankets.  He is never far from me.  There has not been a single day where I haven't thought of him. I will always be his mama.  

The grief is no longer a battle, it is more like this blanket.  It is warm, inviting, comforting, and filled with memories of snuggles.  Sundays were always my favorite with Lennon.  We would get up before everyone else in the house and sit together while I drank my coffee.  When he was healthier, we would sit outside and listen to the windchimes.  As he became more fragile, we would sit inside in the rocker or I would just stand beside his bed and rub his feet. A lot of times I'd put on Billy Joel or The Greatest Showman soundtrack.  

His siblings still talk about him all the time.  They imagine what he would be like.  They tell all the fun stories about how ornery and cute he was.  The "remember when" conversations are my favorite.  He was (and is) so loved!

It has been 844 days or 2 years, 3 months, 21 days since he took his last breath in my arms.  It doesn't seem possible, but I know it's true.

Please take some time this week to share a fun story about Lennon.  (There are lots to tell!)

Thank you all for reading and being a part of our journey.

One Year

This month has been hard.  Those words are an awful understatement.

It's so strange to think that Lennon has now been gone longer than he was healthy.  We got 11 months of "normal" with him.  That vision was shattered on Valentine's Day 2017.  I remember his rag-doll body before they got him on the flight to Wichita.  I remember wondering if we would be bringing our boy home.

Over the next two years, there were many times that I wondered if this would be the last flight, the last PICU stay, and then it came.  We weren't ready.  We couldn't possibly have been ready, but we handled the day with such grace.  I look back on May 30, 2019 with so many conflicting emotions.  It was beautiful and heartbreaking...  I was so proud of my family, especially of my little man.

I've spent months looking back at my last picture with him... no more intubation, no more EEGs, just the regular monitors, and that damn DNR bracelet.  He was so handsome, even at the end.  We had given him one last bath, fixed his curls, and put him in his birthday outfit.  "I've Got This," his shirt said.  To make it even more beautiful, he had that grip on my shirt.

Little Buddy, since you've been gone, we've raised money to help other families fighting big battles.  Lennon's Legacy Foundation has been able to offer our support to three so far.  We are working on getting our flyers out and hope to plan more fundraisers once this COVID mess calms down.  You are still changing lives.

We miss you every day.  We still find evidence of you in the house when we don't expect it... socks, paperwork, stains from your meds and feeds.  We think of you whenever the WiFi isn't working or when the trash can gets knocked over.  We replay the sound of your laugh and share "remember when Lennon" stories.  You are loved.

You are loved.

You are missed.

You are remembered.

You are the person who helped me become my best self.

"I want to hold you for the longest time..."

The Little Things

I haven't posted for a very long time.  It is so hard to put into words how much I miss my little guy. 

I have mixed feelings about social distancing and Covid-19.  On one hand, I've found myself wishing this would have come last year so that I could have been at home with him each day during his last few months.  On the other hand, I would have been so incredibly worried about his health and safety.

I have a different lens than most people.  I've seen firsthand what a respiratory illness can do.  RSV, a very simple and common virus, caused so many hospital stays, it's ridiculous. I can't imagine how quickly coronavirus could have ended his life. I've seen my child intubated, dependent on a ventilator, receiving CPT and breathing treatments, and heavily sedated.  Watching the news sometimes triggers memories of those worst moments in the ICU.

Coronavirus has a lot of people thinking about those little things we take for granted.  I started noticing those things long before social distancing became a thing. Yesterday, my Timehop shared a great, yet bittersweet, memory with me.

This was the last time Lennon got to sit outside and just enjoy the fresh air.  It was a little chilly, and I was worried that he would get too cold, but I'm so glad I took him out.  I had no idea that this would be his last opportunity.  He used to sit with dad and me while we drank coffee almost every morning.  Miss Nikki would take him out and do his stretches with him that first summer.  It was something that was just a part of our routine and I miss it so much.

Since my last post, I have be acutely aware of how many pictures are part of "the last pictures."  I noticed, even then, how many times I was passing up opportunities to take his picture because he didn't look like his best self.  We could see his pain and struggles, so that's not how we wanted to remember him.

This picture is one of my favorites, but when it showed up a couple of weeks ago, all I could think about was: "If we'd only known that there were 2 months left with him." Life is hard without him.  There's a hole in all of our hearts, and even though things are going to grow around that hole, sometime a hard freeze (like the one we're experiencing outside) can stunt that growth.

I miss the little things...

I miss hearing his name, rubbing his feet, and washing his hair.  I miss helping him choose his playlists, him giving Nikki dirty looks when she made him work, and the way he'd smile when dad walked through the door.  I miss his superhero outfits and always being shocked by how BIG he was getting.  I even miss his alarms and prepping his meds sometimes.  (I still can't bring myself to clean the ceiling where one of his 60 ml syringes splattered everywhere.)  I miss hearing his siblings say "baby brother."  Now that we're home there is a lot more time to get lost in that grief, which is far from a little thing.

As always, share your memories of our little guy with us.  Send us pictures if you have them.  Remember to be kind to yourselves and to think about the well-being of others as we face this new virus.  Keep in mind the special littles like Lennon. Wear a mask, wash your hands, stay connected with your loved ones.  We will get through this, even if it means there will be a new normal.  That's a "little thing" that our family has grown quite accustomed to.

  

Goodbye 2019

I leave this year with mixed emotions to say the least.

I cleaned out a junk drawer tonight and found an abundance of hospital bracelets.  I used to stash them as a reminder of what we overcame.  I know these frequent visits are a reality for many families, and I hope that we can find them soon.  It's going to feel so good to have Lennon's Legacy Foundation start reaching out.  In the new year, we are going to establish community partners, connect with families, and start distributing care packages. 

We promise to do our best to honor your memory and make a difference for other children and their families.  We love you and miss you, Len Len.

As this year comes to an end, I'm afraid of closing that chapter.  I feel guilty for letting go.  It reminds me so much of walking out of that PICU room with you still laying there.

You're no longer bedridden and bound to a rigorous medical regime, and I'm so grateful for that... but...

Even if I pulled the broken heart from my chest, you'd still be msising. My brain would still think of you. My arms would still miss your weight. My fingers would still long to comb through your curls or touch your sweet face.  

I'd still smell the baby wash and your amino acids. I'd still hear your alarms in the middle of the night, or your "snoring", or your laugh.

You are ingrained in every cell of my body, just like the mitochondria were in every cell that failed in yours.

I miss you son.

Awake, asleep, happy, sad, morning, night, alone, surrounded...

I miss you.

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.