There was shimmying… there was bootie shakes… there was jazz hands… there was Power Ranger moves…
And there was that glance over his shoulder to make sure his mama was still watching.
Oh, baby boy, I’m still watching you.
Returning to the CVICU
Please pray for strength.
Today my mom, sister and I returned to the CVICU where my baby died two weeks ago.
We were there to thank the staff of the CVICU for fighting so hard to save my baby. I wanted to thank them for their efforts in ways that I couldn’t begin to on that fateful night. It was important for me to share with them who he was in life, for many of them only knew him during his death.
There are so few words, but I have such utter gratitude and respect for every nurse and doctor who fight to save our babies on a daily basis. I can’t imagine their world.
To every nurse, doctor, therapist or technician, thank you.
I miss you, my Tanner.
His Final Gifts
Today, I can’t.
And when I can’t, I write.
Sharing memories of Tanner is the only thing that will momentarily pull me from grief without taking me away from him.
I have to call the mortuary… but it seems impossible: they deal with dead people and my baby’s not really dead. Utter denial.
So today I’m focusing on the gifts God gave me in Tanner’s final weeks. Because, after all, that’s what Tanner was: a gift.
Always my baby, Tanner had started holding my hand more the last few weeks before he left me. Really, he always held my hand as we walked, but in the quiet moments, the car rides, he would just quietly hold my hand. It’s that feel of his precious hand that I still hold on to.
A kiss. Tanner had this adorably flat little Cambodian face and, in his younger, pre-glasses days, I would kiss him sideways right between the eyes. It was just one of our many little things… and these kisses often resulted in eyelash battles and giggles. In the last few years he began wearing glasses and I had stopped kissing him in that little way. Until a week before he left us, I started to walk by his cute little face and felt a nudging to stop and give him a sweet little kiss in our spot. He let me and I was so aware, in that moment, of how long it had been and how precious it was to me. I’m so grateful for that last kiss.
Tanner’s been in the hospital many times. Like a zillion — or so it felt. And, like every mom, I would make my bed on the rock couch next to his hospital bed and keep a close eye on him.
But his last night with me, we were moved to the CVICU and the only room available was a post-surgical room. It was huge. My baby’s bed seemed a million miles away from the mom-couch — even if it was only 10 feet. So, on his last night on this Earth, for the very first time, I climbed into his bed and snuggled up and slept with him. Never in my ugliest nightmares did I imagine that was my last night with my baby, but what a gift that God arranged for me to be right by his side. I will forever cherish the feeling of his body squeezed in next to mine.
His last smile. The grinning photo of Tanner eating his orange Popsicle is one of the very hardest for me to look at. I still can’t. It’s the most pure, innocent, genuine smile of my little fighter. He was grinning over a popsicle he earned after his seventh IV poke in 12 hours. He was a perfect angel of a child. It turned out to be his very last smile, and I have it recorded forever. There is too much pain with it now, but some day, I will cherish that precious gift.
And then… we had a God moment a few weeks ago and I didn’t know it until the other night.
I have a large purple plastic file box that sat atop a six-foot storage cabinet in the garage. It’s been there for years and where I stash toys for the boys: little things I find on sale and am saving as stocking stuffers, Easter Basket fillers or for a rainy day. Neither boy knew what was in the bin, nor ever had cause to look.
Out of the blue, two weeks before his passing, that bin caught Tanner’s eye and curiosity caught the better of him. He got a chair, and somehow lifted the heavy bin down.
And there, he found toys meant for him: a small assortment of Hot Wheels Cars, Power Rangers and a few other things.
And he happily took them. Finders keepers.
Proud of the treasures he’d stumbled upon, he opened them and began to play with them.
When the toy wrappers were found and he was questioned, he very proudly said as he puffed out his chest: “Yep! I did it. I got down mysef!” He showed off his new Hot Wheels cars.
“You did it all by yourself?!” I asked. “No help?”
“Yep! All by mysef!!”
So, we high-fived and he went off to play with his new toys.
I thank the Lord for letting me give Tanner his gifts, for saving me from the wave of pain I would have felt to find his unopened treasurers stashed away. They had sat there for years. And Tanner opened them days — just days before he became an angel. Tanner thought Hot Wheels were the greatest gift… but the joy I felt in giving to him, there was nothing better.
I didn’t mean for Tanner to find those gifts, but God knew the timing was right.
In all of those moments, I can now see Him preparing me for the loss that was coming. I can see the gifts He was giving me. He knew the pain to come, He knows my brokenness now. But even in the loss of my child, I can still see He loves me.
After all, he gave me the greatest gift: my son.
Cliche As They Come
I. Can’t. Breathe.
While I’ve always liked to believe I was exceptional in some of my own special ways, I’ve learned that, in grief, I’m as cliche as they come.
Get out a checklist of ways a grieving mom responds to the loss of a child: her reactions, insecurities, fears, and processes and that’s me. I’m just working my way down the list.
Friday was a good day.
Yes, my son is dead and my day was good. (Do keep in mind that “good” is a very relative term these days.) It wasn’t normal, it wasn’t happy, I cried a few times, but I felt human.
I spoke in complete sentences.
I laughed at a stranger’s story.
I swapped advice over IEP’s, travel and teenagers.
And then — holy hell — I felt guilty. Like punch-me-in-the-gut guilty. How could a mom who truly loves her son, not even gone for two weeks, be happy? Maybe I didn’t love him as much as I thought I did. Maybe I’m cheating the grieving process. Maybe those around me will think I’m being dramatic when I find myself sad again tomorrow. Maybe I’m….
No, I don’t need reassurances.
I know it’s not rational.
My love for my son is not measured by my grief.
But I felt guilty, still.
Then, this weekend happened…
I unpacked his hospital bag, had to sort through hospital papers, slowly began pulling the markers and Hot Wheels cars I kept stashed for him in my purse…
In an attempt at being normal, I decided to help Travis with a load of laundry. He put the load in and I added soap and hit wash. It wasn’t until I began to transfer it to the dryer that the pit of my stomach flew into the back of my throat: there were Tanner’s shorts, and then his pajamas, and even the clothes he had worn to the hospital. I just washed my last load of Tanner’s clothes.
I hate laundry. But I would give my life to have him dirty another load.
This weekend, I haven’t handled. I haven’t coped. Right when I think I’m pushing through the worst and finding my footing, I take four leaping steps backward.
I’ve not been able to breathe.
Going on day twelve without my son it’s beginning to sink in. He’s really not coming home.
But as I lay here in bed, my body weak, my head spinning and my eyes cried out, I am trying with all my heart to thank God.
How utterly blessed I was to have a child who literally takes my breath away.
My baby, my angel, the joy in my heart and the breath in my lungs…. your mommy misses you.
Thank you, Father, for my baby and every day we had. Hold him tight.
No Shirt? No Problem!
For all of his classic attire, there was one outfit Tanner loved best… shirtless.
“It’s a hot day,” was his excuse.
Nearly 9pm at night, 57 degrees outside, I could pick him up from my mom’s fully clothed for the two-minute drive home, turn around half-way and see him sitting there with his shirt off.
“Hot day, Tanner?” I would always ask with a grin.
“Hot day.” He would respond with a smile.
It didn’t matter the time of day or temperature, that was his go-to.
No one was allowed at the dinner table without a shirt. Manners, people.
But Tanner wasn’t just anyone and, well, who can argue with a kid who says it’s a hot day?
I simply loved his little tiny body.
I think he stayed so tiny so that I could wrap him up and hold him completely, right until his very last hours.
And yes, it may end up being a hot day today… but keep your shirts on. 
Get Down Syndrome
Tanner truly had rhythm…
Sometimes bis body was moving before the music began, but so often he would listen and absorb the beat and the rhythm before letting himself go.
We always joked he had Get Down Syndrome as opposed to Down Syndrome.
I love you, Tanner.
His Protector
I was his protector.
Any mom of a child with disabilities knows the fight that comes with parenting such special children.
Discrimination, ignorance and apathy still abound in churches, schools and every day life. Even for a kid as cute as my T.
I’m so blessed that his last years were in an educational program that fought for him instead of against him, and with a church family who embraced him, loved him and danced with him.
Even when I wasn’t fighting systems and institutions, I was always on guard when it came to protecting his health. Having a kid with Celiac disease, gastritis, cardiovascular and pulmonary issues, I was never able to let my guard down.
So today…
Today I sat on my bed looking outside when I saw a beautiful white butterfly, a precious reminder of my angel in heaven, flutter down to the grass. As I began to record it’s little dance I saw Carter, our cat and the best hunter in the house, eyeing my precious little butterfly.
Suddenly I saw her body shift as she leapt for the butterfly, and instantly I flew too. We landed, her paws together over her prey in the grass, my hands also cupped, neither of us knowing who had won. As I pushed her aside with my elbow I saw the butterfly, intact and slightly stunned, hiding in the grass. As I put my hand to it, it slowly climbed on as tears streamed down my face.
A few minutes later, it fluttered off.
For his lifetime I protected him… now it’s my job to protect his memory and celebrate his life.
For one very brief second I got to protect him again, even if just a symbol of his memory.
In this moment, I have peace.
#ButterflyRescuer
#HiCaliberButterflyRescue
#WillNeverStopLoving
The World Was His Stage
Next time you walk into a store, stop and listen.
Nearly every single store plays music.
Therefore…. nearly every single store was also a dance floor.
Tomorrow… There’ll Be Sun
The sun will come out tomorrow
Bet your bottom dollar that tomorrow
There’ll be sun…
Looking through photos, I had to grin when I stumbled across this old gem. It was taken at HiCaliber after a volunteer appreciation party in early 2016.
We had dress-up clothes out for a photo booth. Your standard party-goer donned attire, snapped a pic and quickly disrobed.
Not my son. Not Tanner-man.
You don’t get fabulous just to take it all off.
That’s just crazy talk.
So he wore it for much of the remainder of the evening. And the more people smiled, the better he knew he looked.
And the more he smiled…
The more I smiled.
The sun will come out tomorrow.
This is just me, Tanner’s mom, taking a moment with my family, and friends that have become family, and rallied behind me, cried with me, supported me and loved me.
I just wanted to check in.
To let you know I’m doing my best to get through this.
Like every other mom in my shoes, I never dreamed of losing my baby. It’s still not sunk in. My heart won’t accept it’s real.
The grief that accompanies losing a child is indescribable. I feel like I’ve been drunk for nearly two weeks and I’ve not cracked a bottle. One minute I can stand. The next minute I’m wondering who replaced my legs with gluten-free spaghetti noodles and desperately searching for something to break my fall. I can put words from my heart to paper, but will find myself speaking sentences of words that don’t connect.
One minute I can be speaking to someone, the next I find myself looking right through them, to someplace far away.
I’m making it through each day.
One foot in front of the other.
One breath and then another.
To every one of you who has stepped up to support me and my family, thank you.
To those who have sent notes, flowers, meals texts, phone calls, offers of support, gifts for Travis and everything else, I’m utterly overwhelmed by your love — both tangible and virtual.
The movie Annie was a favorite of Tanner’s for many years. The singing, the dancing… I sometimes wonder if he ever remembered the orphan he once was, waiting for a mom… waiting for me.
The sun will come out tomorrow. I can’t imagine it will ever feel as bright, but I will see him in it.
Tanner, you are forever my sunshine.
No Credit Taken
As if I could.
I get a little too much credit for “letting Tanner be Tanner.”
For the record, you can’t bottle awesome. Try to catch it, you can’t.
Tanner was sunshine, he was awesome, and he wasn’t going to be contained.
Not that I would have ever wanted to.
