Dear to My Heart

I met Shonda Clements earlier this year. This was the Facebook message she sent me.

“I finished reading your book today. It’s the first thing I’ve been able to focus on since early February when we received a diagnosis that threatened our daughter’s life. I’ve documented a lot of our journey on a blog ( ) – in short they were born at 27 weeks, my daughter growth restricted, weighing just 1lb 5oz at birth, my son 2lb 4oz. Currently they are in two different NICUs 30 minutes apart from each other and an additional 30-45 min away from my three year old daughter. Selah, my daughter is 2 weeks post op, surviving NEC. My son, Judah is 2 days post extubation. (one of five). I read your story with mixed emotions… Gratitude for the comfort of knowing someone else understood my fears. Anxiety over what I know we still have to face, but most of all…hope. Lots of tears fell for you, Lee, Tucker and Andie- and lots for me and my children as well as I embrace feeling terrified wandering down the path you’ve already faced. I just want to thank you for the days of your lives you poured into this book – for the sacrifices I am sure you made. It made a difference in my life, I can assure you. I have been told by a friend to look into Reiki and had put it on the back burner but now have a renewed interest in seeking more alternative healing therapies for my family. I hope your book brings you lots of success and peace. It has encouraged me to keep hoping, to stay positive and to be present. I believe Ariel leading me to your book was not an accident. Tell Andie she is an inspiration. Thank you, Shonda”

I’ve followed their story ever since, falling more and more in love with that family and the Momma whose fierce love knows no bounds.

Judah ended up back in the hospital in December.

“Judah will be undergoing a tracheostomy this afternoon. Although we do believe it will be temporary (months-year) it is still very unknown. This surgery will render him mute. He will not coo, laugh or cry. It will hinder his ability to smell and taste- there are a lot of things that it will make difficult for him however, it will help inflate his little lungs so he can breathe. Please pray for us.”

“My dearest Trinity, This year I’ve not only watched you grow (and boy, did you ever grow!) I watched you transform from a toddler with perpetually sticky hands and a love for sippy cups and crackers to a brave little lady. My heart found new depths of love as I witnessed you unconditionally love and care for your baby brother and sister. Not a shred of jealousy have you displayed while our lives are turned upside down. Instead you blossomed into a child full of empathy and grace. You are so intelligent, your imagination never ceases to amaze me. I’m beyond blessed to be your mama. You teach me far more than I could ever teach you. Trinity, my first born, you are nothing short of a miracle. I can not wait to see you rise above the mountain of potential you hold. Happy Birthday, baby girl. May your fourth year of life be full of happiness and wonder. I love you always.”
“Leaving this year a hell of a lot stronger than I started it.” Shonda Clements
You are my hero, Shonda Clements.

Rites of Passage

When Tucker was a little guy, he’d fashion fishing poles out of sticks and string and hang his “rods” over the back of the kitchen sofa.  A bite from a big one, would require great effort and lots of groaning until he successfully reeled in his imaginary catch.

His first “real” rod was red and all of three feet long, with Mickey Mouse on the reel and a little, yellow rubber fish attached to the line.

It wasn’t long until the reel without a hook was no longer satisfactory, and Tuck graduated to a new real rod, hook and all.  He learned how to put on worms and release the fish he’d caught.  Every vacation, he made sure his fishing pole was the first thing in the car.

But as he grew older, his interest in fishing waned, replaced by more active endeavors like skateboarding, biking and basketball.

Yet just this past Memorial Day, there he was casting a line way out into the water.  “I haven’t seen him fish in ages,” I said to my husband who was sitting nearby, changing the lure on his rod.

“Look at the picture on the camera and you’ll know why,” he said.

I turned on the camera and saw the picture they’d taken just before releasing the large-mouth bass Lee had caught.

“No wonder he’s inspired,” I said.

By late afternoon, Tucker had caught five small perch.

“He won’t let these fish go,” Andie complained, staring into the bucket where the six-inch fish were swimming around.

“I want to cook them for dinner,” Tuck said, flipping his hair out of his eyes, which were big with excitement.  I noticed the sun had lured a few new freckles out on his nose.

“Dinner?” I asked, thinking of the nearly packed car and the early bedtime I’d wanted for the kids.

“Yeah.  I’ve made dinner before, but that was food from the grocery store.  This is dinner I caught for my family.”

Looking into the wide eyes of my soon to be thirteen year old son, I knew this was a significant event.

“OK,” I said.  “Go ask Daddy if he knows how to clean a fish.”

Andie was distraught.  “You can’t kill those fish,” she cried.  “I won’t eat them.”

“Andie you love fish,” Tucker reminded her.

“Those are fish from the store,” she said, prompting a discussion on food sources.  Later she “accidently” let one go, but Lee helped her catch a replacement, which she reluctantly put in the bucket with the others.

As Lee and Tuck covered the picnic table with newspaper and sharp knives, Andie hovered nearby.  She squealed when Tucker cut the heads off the still wriggling fish, but his squared shoulders seemed to be say Look at me providing sustenance for my family.

Five little perch isn’t a lot of sustenance, but with baked beans and left over pasta, it amounted to quite a meal.

We each had a few 1×3 inch fillets that Tuck had dredged in milk and breadcrumbs and fried in butter.  Andie, who wasn’t going to eat her little friends, pleaded with everyone to share a little more off their plate with her.

The fish was truly delicious.  But even more delicious was witnessing my boy take a step toward manhood, swelling with pride as he demonstrated his ability to care for those he loves.


Marathon Mentality

As I listened to the news reports about the Boston Marathon earlier this week, I thought back on all the years when we lived outside of Boston and took the kids to the race. It began in the town next to ours and our friend’s office building was right on the main street, providing a wonderful place to watch the start and store our sweatshirts, water bottles and sunscreen.

Thousands of runners, who’d been there since the pre-dawn hours occupied patches of grass on beach towels spread beneath trees.  Their nervous tension mingled in the air with the smell of fried dough and sausages and onions wafting from the food carts lining the town green. The atmosphere left me jittery and awestruck, but the kids sucked it up like juice through a crazy-straw.  I had to suppress my desire to approach runners and launch an investigation into why they would possibly put themselves through the rigors of running a marathon.  The longest distance I’d ever run was 5 miles, and I swore I’d never do that again.

One year in particular stands out in my memory.  The kids were young, maybe around three and five. A runner from the Children’s Hospital Team ran in Andie’s honor. We met Vicky at the start and she had Andie’s name written on her arm in the same black oily crayon football players draw under their eyes.  When I asked Vicky why she ran, she said that running brought her great joy and that children facing adversity inspired her.

After we snapped a bunch of photos of Vicky hugging Tucker and Andie, we took the kids over to the official start.  They stood on the bright blue painted line and posed for a few quick pictures with their friends Matthew and Jack.  Soon runners began lining up between the metal cattle fencing lining the start of the course.

Just as the race was set to begin, the kids ran to the fence and stood on the lower metal bar so they could reach over the top rail and high-five passing runners.  As the hoards slowly began moving forward, many runners moved from the left side of the course over to the right just to meet the kid’s hands.  I could see Lee working just as hard I was to hold back his tears.

The kid’s bodies hung uncomfortably over the rail by their armpits and as the bib numbers reached into the thousands, Andie’s arms started to look noodley and she soon jumped down from her post.  Matthew and Jack lasted a few thousand runners longer, but eventually they’d had enough and jumped down, too.

“If I know Tuck,” said Matthew and Jack’s mom, Karen,  “he’s not coming off that fence anytime soon.”

And she was right.

We watched as the bib numbers climbed into the eight thousands, nine thousands.  The payment began to heat up, but Tucker’s little body continued to hang over that metal bar.  And there he stayed until every single runner, well over twenty thousand had moved past him and through the start of the race.

When he finally turned around and hopped of the fence, I realized I didn’t need to interview any of the runners to gain insight into their marathon mentality.  My little boy had shown me that focus, purpose, perseverance and a willingness to see things through to the end seemed to be the necessary requirements.