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.