Monday, December 17, 2012

A Christmas I Can Never Forget.

Twenty three years ago, we had lost hope. With a dying baby, I was facing my other children with empty stockings. Our cupboards were bare. We were becoming a statistic of families in crisis, our daughter denied insurance and we had to fall into poverty to cover her hundreds of thousands of dollars in medical bills. I prayed for a miracle.  This is our miracle story of HOPE and a yet unknown Santa or Santa's who gave us the catalyst to change the course of our lives.  We are incredibly blessed by the miracles of that evening. I can never forget.

Our Tiny Titan never gave up and neither did we.

Christmas is a time of giving and miracles. Miracles are meant to be shared .In this days of sadness and tragedy  in the world and with so many struggling with joblessness, uncertainty of health care in our country, and others facing life changing medical conditions. We all need to believe in good and caring. I knew I needed to share it for FREE to offer HOPE and move hearts. I have arranged with my Publisher, Better Endings, New Beginnings to give it away.

Tiny Titan, One Small Gift on Kindle Electronic Download. Beginning tomorrow Tuesday December 18 through Saturday December 22 for FREE.

Chapter 9, "Christmas" has been told through major media over the years, landing in Women's magazines, media many Christmas feature stories and even the other side of the world when  Nippon TV recreated the Christmas story for the December 12, 2007 episode of the World's Most Amazing Stories. It is our gift to share the events of that Christmas forward.

If you read no other part of the book, take a few minutes and read Chapter nine.I have also posted the Christmas Chapter here on my blog for anyone to read when they have time. 

Chapter 9 Christmas from Tiny Titan, One Small Gift

To learn more about Noonan Syndrome

Have a very blessed Holiday season from our family to yours.

Ann Yurcek

Tiny Titan, One Small Gift is Part One of the Printed Copy of Tiny Titan, Journey of Hope available at 
Mom's Choice Award Winner-Best Adult Non-Fiction
5 Star Dove Award


Sunday, December 16, 2012

Miracles Are Meant To Be Shared, Our Christmas Miracle

The Free Christmas Chapter From Tiny Titan, One Small Gift
Download Tiny Titan, One Small Gift for Kindle here .
Available for FREE at
from Tuesday, December l8 through Saturday,  December 22, 2012
Our gift to you this Holiday season.

Chapter 9

I sunk into despair. The holiday was fast approaching and Christmas was the last thing on our minds with Becca critically ill in the PICU and everyone else sick too. There was no money for gifts, and there was no time to buy or make anything. I was sick, tired and depressed over the circumstances we found ourselves in. If the phone rang, I was afraid to answer it because it might carry the news that Becca was worsening or no longer here. The phone was a constant reminder of trouble. It rang with bill collectors waiting for money. It rang when medical personnel had more dreaded news or another crisis for Becca. My emotions rose and fell like tidal waves, up, up, up and down, down, down. I tried not to think; not thinking was how I coped. It was like the stairs I ran at the hospital, up and down, and then I’d stop and sit, empty and mindless. I could not think about my children going without gifts at Christmas, but our lives were impossibly out of control. We had fallen into a dark hole due to no fault of my innocent children. At any moment they were going to lose their new baby sister. They were caught in the tidal wave of catastrophic illness when they needed a Santa most to give them hope. How would I explain to my children that Santa forgot them?

I was used to planning ahead and beginning in July bought two presents each month to cover birthdays and Christmas. Over the years my frugal plan had worked flawlessly. I squirreled away the hottest toys for Christmas gifts with early season purchases. While other families were school shopping Iwas  making wishes come true. It was a challenge to make my kids birthdays and Christmas memorable. I love the holidays and I began to bargain shop for Marissa’s September birthday gift. I budgeted a little each month until Christmas, finding sale and clearance treasures, completing my shopping race under budget. In November we celebrated Jim, Nathan and Ian’s birthdays followed in December by Matt’s birthday, and then Kristy’s birthday in early January. The gifts I bought with Jim’s carpet points guaranteed the boys November birthday gifts. Matt at age three was easy; all I needed was something big. Big for my little kids were exciting and ten dollars went a long way. Other than that I had nothing. We had already used the house payment money to pay for medicine, throat cultures and doctors visits for the kids and me while we were sick.

I was a rookie in the being broke game. I called Toys for Tots and discovered I was too late. They quit accepting new registrations before Thanksgiving. Luckily I remembered buried in the rafters, hidden from my sneaky children I had one gift Ihad purchased before things fell apart. Before Becca was born I had purchased the new pirate ship Lego set that had caught Nathan’s eye. It was an expensive present, and I could put both boys’ names on it. I had already cut out doll clothes and a dance costume for Marissa, but the fabric pieces remained on my closet shelf while I was sick. Now that Marissa was home from kindergarten I would not be able to get the covert sewing done, besides I was still too dizzy to sew my visions for Marissa’s holiday present. My eyes were seeing double. We would share dinner with relatives and I hoped I would have a dish to pass, but my cupboards were as bare as Old Mother Hubbard’s. My head spun at the thoughts of a hopeless Christmas and the room took another whirl; exhausted I took some Benadryl and fell back to sleep.

While I slept, Kristy took the picture of Becca from the fireplace and sat alone in a quiet place to cry. It was something I never knew she did until years later. People often think children don’t know what’s happening but they are much more a part of the reality than the adults realize. Kristy never complained and she protected us by caring for the little ones and not adding to our burdens. Iworried sometimes about how this would affect her in the future. Today, she tells me it was the substance that made her strong.

The little elves in my family executed a Christmas plan. Kristy found the Christmas tree in the garage, and she and Nathan, my mechanic, assembled it. Ian and Marissa got busy cutting out paper snowflakes and hung them with dental floss from the ceiling and windows. My little red and green sewing pins stuck six stockings to the mantle. When I awoke, they surprised me with their magical transformation. I had not lifted a finger. They had carefully hung each of their hand made wooden, beaded angel and needlework ornaments crafted by Jim’s parents. Hundreds of hours of love radiated from the tree centered in a carpet of paper snowflake snippets.

I explained to them that Christmas was about family and being together and sharing memories. What was going to be special about this Christmas was that the Yurceks were a family. Christmas is about the baby in the manger who brings hope to a dying world. Our baby was in the hospital and all we had was hope. After spending seven days in bed, I was regaining my strength.

Why did I feel such shame that Santa might not come this year? I prayed, “Oh Lord, How can I find gifts for Kristy, Marissa and Matt? It is already December 23. How can I let my children down?How can I face Christmas morning empty handed? The kids’ baby sister is dying. They need something good to happen.  Please don’t let their baby sister die at Christmas.”

My children were ready for Christmas. I was not. Icouldn’t expect my parents to shower my children with toys; they were struggling with my dad’s recent unemployment. My parents blessed my children with attention, but had no financial resources to give.

Becca was transferred to the Pediatric Intensive Care Unit (PICU) just as I had fallen ill. It had been a very long nine days and finally the kids and I were well. I was healthy enough to see Becca and had been given clearance to drive. I was no longer dizzy.

The PICU had a circular desk, and different beds surrounded it. Off to the side with glass doors were the isolation rooms. One of them housed my Becca, who looked so tiny in the crib in such a big room. She was on oxygen, and they explained to me that she kept forgetting to breathe due to the RSV and pneumonia. The respiratory therapist gave her a treatment to help clear her lungs. She had a blood staph infection, her feedings were on hold, and they were giving her nutrition and fluid by IV. Her heart was in failure. Merry Christmas was far from my thoughts. Bah Humbug! This was not merry, not merry at all. I was dreading Christmas and I was feeling like Ebenezer Scrooge.

Startled out of my doldrums, Mary was standing in front of me saying hello. The nurses had called her to let her know I had arrived. She had something she needed me to sign. That’s all I had been doing, signing, and waiting, and hoping, and praying. Bah Humbug!

She took me to her office. I had no idea where her office was as she always brought the paperwork to me. She opened the door and picked up a large shopping bag. Her smile radiated. “Merry Christmas!” she exclaimed. The nurses had shopped for families who would be without for the holidays. They picked out a present for each one of my six kids. They even purchased the batteries for the remote control car for Nathan. They thought of everything. The bag contained a roll of wrapping paper, bows and even the tape. It’s nooks and crannies were filled with little treats – a box of candy canes and five chocolate Santa Clauses to peek out of the top of the stockings. Miracles really do happen and my wish had been granted. My kids would have Christmas.

Mary told me that the hospital employees often play Santa for families to make sure they would not face the holidays empty handed. She knew that if I were skipping meals to feed the children, there would be nothing for Christmas.

I returned to Becca’s isolation room. She was much too sick to be held. I savored a moment of calm and thankfulness. Slowly I was learning to savor tiny moments of peace and tranquility. I stayed by her side quietly reading before heading home with my miracle sack. I felt so thankful for the graciousness of these kind people. With my ritual kiss goodbye and whispering I love you, I prayed to her angels that she would be here when I returned.

My kids are notoriously nosy and I wanted to surprise them on Christmas morning. I rushed off to pick up Matt and Marissa at Mom’s and stashed the Christmas gifts before the older ones had a clue. While I had been sick, Mom had been busy and blessed us with another surprise. She had sewn Kristy and Marissa new Christmas dresses and my aunt had bought sweaters for the three boys. All my five kids would have new matching outfits to wear for Christmas.

Jim closed the store early on Christmas Eve and helped me dress the little kids for the Christmas Eve service. I told Jim my secret miracle and we smiled eye messages across the heads of our stair step sized children sitting between us in the church pew. We sang for the birth of baby Jesus and our hearts cried out for a Christmas miracle for Becca. After the service the kids played in the manger, Marissa and Matt rode the lifelike donkey proclaiming they were on their way to Bethlehem while I stared down at the tiny doll in the manger and said a quiet prayer for my little baby lying so far away, all alone, in a bed in the PICU. We needed hope in the midst of such incredible sorrow.

Mom invited us for cake and ice cream after the service, but I had other plans. Families are supposed to be together and I was not going to allow Becca to be alone on Christmas. We all went to the hospital to visit Becca, but only Kristy and Iwere able to go to PICU. Jim stayed with the other kids in the lobby while Kristy and I went to say Merry Christmas to Becca. Each child had made Becca a card and the nurse taped the cards to the wall above her bed. I hung Becca’s handmade stocking on the foot of her crib, putting on the Christmas music Kristy had recorded. I made a special Christmas wish, asking for a miracle for Becca. I left her again with a kiss on her feverish cheek and wished her a Merry Christmas and a very blessed goodnight. The walk from PICU to the lobby seemed endless, my heart heavy laden with grief, babies should be home with mommies and daddies on Christmas Eve.

Fresh snow had fallen, and instead of hurrying home on the freeway we meandered past the lighted mansions on Summit Avenue of St. Paul. We passed the Cathedral and the Governor’s manor. The children marveled at the beautifully decorated homes. Matt clapped his hands in joy, while the others argued over which house was the favorite. Ian and Kristy engaged in a competitive battle. Marissa’s face was lit up from the wonder of the lights and its beauty. The kids were enjoying the ride so much that we wound our way home through parks, and lakes, and residential streets for over an hour. It was peaceful and calming. The kids quieted and Matt fell asleep.

Scattered snowflakes were falling and Jim and I listened to the Christmas music playing from the radio. The radio DJ announced that Santa was spotted circling the globe, and Marissa and Ian excitingly questioned how he managed to get all the work done in one evening?

This explanation I left to Jim, it was his turn to try to satisfy his children’s curiosity. His eyes sparkled as he told them Santa was magic and can make anything happen if you only believe. It was a heavenly ride. I reached across the seat setting my hand on Jim’s knee. Jim’s answer had satisfied the children’s curiosity, and Kristy had caught my glare, playing along with the magic of the moment.

It was nearly midnight when we arrived home and the house was pitch black to save on electricity. As we pulled in the driveway, the mini van’s lights shone upon dark shadows lying near the door. Jim hopped out of the van to see what was going on. Then he summoned us as if it were nothing.

As I reached in the back seat to get sleeping Matt, the children shrieked, “Santa came! He came! Santa was already here!”

What were they talking about? I grabbed a confused, groggy Matt. There were nearly a dozen or so thirty-gallon black trash bags left sitting by our front door. Jim and the big kids carried in the bags.

The children tore open the plastic bags to discover dozens of wrapped presents with their names on them. It was blessed chaos. There were tons of groceries, toilet paper, and shampoo. Everything we were out of.  Kristy, Nathan and Ian were stacking the packages by the tree while Marissa and Matt played mountain climbers scaling the huge mounds of packages. Kristy screamed as she caught the tree from falling. Marissa narrowly escaped a plunge from the top of Gift Mountain. Our children were bouncing off the walls, but we finally convinced them that it wasn’t Christmas yet, and Santa required they open presents on Christmas morning like in The Night Before Christmas. They didn’t argue because we had just read the story.

Marissa wondered why Santa left them outside, instead of bringing them down the chimney. Ian, who always had an answer for everything, announced, “he had so much dummy; if he brought the bags down the chimney, he would get the chimney stopped up.” Kristy added “that the house was locked and he could not bring them in the door.” Finally they all scampered off to their rooms and soon were snuggled in beds dreaming of Christmas miracles.

Shortly after midnight the phone rang. It was the resident from PICU calling us to let us know Becca had turned the corner and they upgraded her status to stable. She was improving and was breathing easier so they had removed the ventilator; Becca was now breathing on her own and on supplemental oxygen! Becca was getting better! My Christmas prayers had been answered. And someone, some Santa somewhere had fulfilled my wishes. He or she arrived with bags of toys, and goodies, and groceries. My cupboards would no longer be bare. Jim and I had no means to provide for our family, yet someone, somewhere, knew our needs. I thanked the baby in the manger for this Christmas miracle.

Jim and I put away the much-needed groceries. Two turkeys, packages of hamburger and chicken went into the freezer. We put the canned goods on the shelves . . .apples and oranges, carrots and potatoes, and onions . . . bathroom and hygiene products. There were even a couple loaves of expensive rice bread. Whoever brought this Christmas miracle, had not forgotten anything. They had even picked up a double pack of diapers for Matt who was regressing from his potty training in his upside down life.

The real Christmas miracles were hidden in the tiny details. Buried deep in one of the bags I discovered a brand new pair of much needed white Reebok tennis shoes for me. They fit perfectly. We filled the stockings with candy and small gifts from the bags the kids had not seen. With the gifts from the hospital and the one from us for Nathan and Ian, we had more presents than we had ever imagined. Our room looked like a Hollywood movie Christmas morning scene. Where did all this come from?

Jim and I crawled into bed, hoping to get a few hours of sleep before the kids scrambled upon us to open their presents. They were tired from the late night and for the first time ever on Christmas morning; they slept until 8:00 A.M..

Kristy in her sweats and the little ones in their blanketed sleepers tore into the pile of packages. One, two, three, four, five, six, seven, I lost count of the gifts they each received. Nathan screamed pulling out a pair of roller blades, the current hottest trend retailing at $l50 a pair. Who had done this? Ian soon discovered he had a pair too! Kristy found a boom box, a jewelry box, curling iron and music to play. Packages marked to the Yurcek family contained a VCR to replace the one that had been stolen when our house had been robbed and ransacked right before Becca’s birth. There were movies, games, books, colored markers, and art kits for each child. Even Becca was not forgotten. She got new clothes, a diaper bag, several new pink animals and more music. Marissa found a big package with a dollhouse and furniture. She was surrounded in pink heaven. Matt tunneled and laughed through the wrapping paper and boxes. We corralled him to open his presents, a big floppy eared dog, trucks, cars and a train track. The boys tried to set up their new remote control car racing set in the middle of the wrapping mess.

Jim was not to be forgotten and he discovered new socks, sweats, jeans and a belt. He handed me a tiny box from under the tree that he discovered while we were cleaning up and making sure all the tiny toy pieces were not thrown away with the mountain of boxes and wrapping paper. Inside was a solid sterling silver heart necklace with six tiny stones. The necklace was a reminder of hope, a mother’s heart with my six precious children. The six little diamonds sparkled in rainbow colors from our Christmas tree. It was bittersweet to look at as Becca’s heart was slowly failing. But I reminded myself that for today Becca was doing better, and this Christmas we had witnessed a true miracle. Some unknown Santa with a caring heart had done all this for us. But who, how, when?

No longer were our cupboards bare. The kids and I made a fresh fruit salad with real whipped cream. Kristy peeled the apples and Nathan chopped them along with slicing frozen strawberries. Marissa cut banana coins with a bread knife and Ian added one handful of marshmallows to his mouth before adding the next handful to the magical miracle bowl of Christmas fruit.

We dressed for Christmas dinner at my cousins. The family celebrated the day together with aunts and uncles, cousins and second cousins. All were there but one, our Becca.

No longer would we be hungry again. We had food for the next month until our food stamp case opened. The kids had new toys to keep them occupied. We had warm clothing and mittens. I later discovered when our bills arrived, that some unknown Santa paid our phone bill, the utility bills, and our car insurance! We will be forever grateful for the gifts of that year, and we will never forget we witnessed a true Christmas miracle. I have from then on remembered to give back to others as you did for us. Thank you! What you did for us that year was unbelievable! You gave us the gift of hope and belief in miracles.

Buried in one of the bags of the hundreds of dollars in gifts we found a card, wishing us a “Merry Christmas and to all, and to all a good night. You are loved! Santa.”

Those were the same words whispered in tiny Becca’s ear ten days earlier. Was it connected?

Over the next few years, the miracles continued helping us when we needed it most. I tried to find who our anonymous Santa was but we never discovered the giver of the gifts. Whoever it was did not want to be found out. Maybe someday that person or persons will read my writing, and I will finally be able to thank her or him for our Christmas miracle and generosity.

Perhaps, we will never know.

Tiny Titan, One Small Gift is Part 1 of the hard copy publishing of Tiny Titan, Journey of Hope, a Mom's Choice Award Winner for Best Adult Non-Fiction and carries a 5 Star Dove Award.

Learn More about Noonan Syndrome and other Rasopathy Spectrum Disorders 

Saturday, February 11, 2012

FREE Kindle Download: Tiny Titan, One Small Gift

Tiny Titan, One Small Gift is FREE at the Amazon Kindle Store from 2/11 to until 11:59 pm on 2/15/12 in honor of Congenital Heart Awareness Week, Noonan Syndrome, Special Children and their families and the small angels we lost way too soon.

Tiny Titan, One Small Gift is Part I of Tiny Titan, Journey of Hope.  A Mom's Choice Award Winner for Best Adult Non-Fiction and a 5 Star Dove Award Winner. A $9.99 value for FREE.

I hope you enjoy our story and the amazing miracles that changed our family.

Thursday, February 9, 2012

Miracles of the Heart

Chapter 12

Miracles of the Heart

              Except for visits to the hospital and Dr. Wineinger’s office, we were homebound for our Minnesota winters to protect Becca. I missed attending church and I wanted to have Becca dedicated to the Lord on dedication Sunday. Surprisingly, her doctor cleared her dedication. Becca could be dedicated at the Baptist church I’d attended since childhood. Pastor Rick continued to be a huge support to our family and he was honored to be able to dedicate Becca to God. My church had felt like a homey sanctuary since my parents, my siblings, my aunt, uncle and cousins were all a part of our
congregation. For months my daughter’s name was on the church sponsored prayer chain, and the entire congregation invested time to pray for my tiny daughter.

During the service Pastor Rick called Jim and me forward with Becca and his treasured words and their meaning were sealed into my heart. They carried me on angels’ wings when I struggled. He told the congregation, “This tiny little one has a purpose. In her short life she has inspired many who have come to love and hear her story. She has a mission. She is here for a reason. Through her challenges she helps us realize that life is short, and we need to make each day matter.” Little Becca looked up at her mommy and daddy and Pastor Rick. She smiled. The tender magical moment moved the flock and even the old men wiped their eyes.

After the service an elderly lady really named Alice came to me and gave me a huge hug. Alice had been sending me cards and notes, of encouragement and support, over the past few months. She was encouraging me while fighting Leukemia and her last days were spent helping others cope through cards and prayers. She told me that we were blessed by our adversity. From this experience we will understand that life is precious. Having this type of life trauma this early in our lives was a gift. We would grow up to understand what life is all about while we were young and we would be better for it. Months later she peacefully lost her battle to cancer. She was not afraid to die; she wrote me that she was moving on to a place of perfection. In time I would understand what she meant. That day set the stage for the future. “We would come to find incredible blessings in the face of adversity, and we would be changed for the better.”

After the service, Pastor Rick presented us with a check. For the first time in the history of the church, they had taken up a collection from Sunday school classes and services to raise the funds to save our home. We were two payments behind; the check was exactly what we owed. It was $l500. Through tears of joy, I hugged Pastor Rick. Once again, God answered my prayer. As always, God knew exactly what we needed.

He provided. I just had to trust and have faith.

Word had spread through our congregation that I had to move the girls from their bedroom into the boys’ unfinished room in the basement, and volunteers worked weekends and evenings to finish their new rooms. Jim’s dad had owned a hardware store and he plumbed the new bathroom. My uncle and Dad wired the basement. Jim added scraps of gently used cream carpet that he had salvaged from one of his customers. The freshly taped sheetrock made the rooms look nearly complete. We had applied to the waiver program for the basement bathroom fixtures. With eight people and all the nurses, one bathroom was not enough. Every time we wanted to use it with Becca we had to disinfect it and most often there was a line waiting to shower or use the toilet.

And Jim was locking the door!


Becca was almost six-months-old and a recent stretch in the hospital had confirmed our suspicions that her heart was failing further. The doctors agreed to try to do a cardiac catheterization, when the cardiac surgeon tries to balloon the obstructed pulmonary valve on her heart to see if they could open up the valve relieving the pressure. The procedure was very risky for such a tiny, fragile person, but we had little choice. We chose to risk her life to save her.

It was almost February, the month of hearts and love. Becca’s heart screamed for help. Red and pink hearts shouted from all directions. Hearts covered the windows of retail stores. Hearts hung from the ceilings of grocery stores. Hearts, hearts, hearts and more hearts surrounded and called at me. Hearts were bittersweet, her failing heart was broken and our hearts were filled with love for our tiny baby.  My children cut out hearts that now lay all over my kitchen table in paper piles.

As I was sitting at Becca’s bedside with Mary, I had a brainstorm. I needed a moment to celebrate Becca’s infinitesimal life. She may never see her first birthday, and her sixth month birthday was two days away. We could throw a party for her! Since our camera had been stolen, we had few pictures of our tiny little tike except for the ones taken by the nurses.

Mary suggested I borrow a camcorder from someone, but no one in my family or circle of friends had one. We continued to banter around ideas, and Mary decided we should call Make-A-Wish and tell them about my wish for Becca. Surprisingly when I called, I reached the Executive Director, who listened to my wish for a camera to use for a few hours to remember Becca. She told me that Make-A-Wish grants children their wishes, but Becca was only a baby and she was too little to have a wish of her own. I thanked her and hung up the phone, it had been worth a try. Reaching out to ask was not as hard as I thought it would be. I was saddened; it was unfair that my baby could die before she ever got a wish of her own.

I shared my party idea with my friend, Val. We could invite family and friends. It could be after dinner, a potluck dessert party and I was psyched. I barricaded myself in my room after the kids were in bed and turned two pieces of fabric into a beautiful party dress for my little Cinderella. Becca had been rehospitalized and was coming home on a two-day pass preceding her risky heart procedure. Those two days gave us time to party and Val spread the word to friends and Becca’s support team while I called family.

While the nurses cared for Becca, I cleaned the house. Val’s four girls and my kids made posters and decorated the dining room. We hung red and white heart streamers from the ceiling, looping and twisting them in fine party fashion. As word spread offers of paper cups and plates poured in. Red Valentine napkins arrived. Everything was coming together in record time as I put the finishing touches on the secret little dress. While we were busy festively transforming our home, the phone rang. Kristy shouted it was Make-A-Wish and they made an exception for Becca. The simple act of wanting to have a memory as a family to cherish moved them and they made a way for us to borrow a camcorder, and use it for a few precious weeks.

The camcorder arrived via messenger, and Val happily volunteered to document the event. I presented the new dress to Cheryl to put on Becca for her party. Val and the camera followed the arrival of the guests bearing Valentine’s Day presents. The nursing agency sent a huge bouquet of helium heart balloons. Valentine gift bags, red heart wrapping paper, balloons and more balloons arrived. Flowers, gifts, heart shaped cookies, heart shaped cakes, and heart candies magically appeared and filled the dining room table. Soon the top of Jim’s grandfather’s antique buffet was mounded with scrumptious goodies of all sorts. Our heart-themed home was lovely and ready to welcome guests.

As we were getting ready for the party, we were surprised by a knock on the front door. It was a photographer and camera crew sent by Make-A-Wish to professionally document the party for the creation of a special video of Becca and our family before the guests arrived. The camera crew captured my mom and dad, brothers and sisters, aunts and uncle, and cousins as they shouted ‘Happy Half Birthday Becca!’

The camera crew captured the over a hundred people who stopped in to share Becca’s special half birthday, friends from church, old family friends, and neighbors joined us to celebrate our little girl. When the camera crew and the guests gathered together, the nurse brought Becca out in her new heart dress.

 The dress was my gift to my daughter, a one-of-a-kind creation. The delightful little pinafore dress was white with red hearts, decked with tiers of ruffles capped by dainty white lace. The front neckline was a ruffle of red with white hearts, which matched the dress underneath, peeking out from the dress were darling teeny tiny fancy bloomers to match with a heart appliqué on the backside of her diaper. Her little head was crowned with a matching lace headband made with ribbons and a red heart. I had been sewing for a crafting friend, and she surprised me with a new, unique creation, a hand painted heart dress for me to wear that evening.

Pastor Rick was right, Becca inspired hope in others. Her tiny presence was a vehicle of healing wounded hearts. I was moved when Marissa’s little friend, Amy; held Becca. Amy had heart surgery as a baby. My aunt held Becca; she had given up her daughter Cindy with Down’s syndrome back in the l950’s to foster care before I was born. Cindy ended up in an institution and died at age thirteen from heart problems. It was a family secret until Becca’s birth. She looked at Becca with tears in her eyes; Becca’s presence opened the path for her and me to safely discuss the differences that time had made for children with disabilities in the future.

Kristy took out her cello and offered a recital of her new repertoire of songs for the guests. The kids and their friends ran through the house with smiles and laughter. It was a miracle we could send them all downstairs to play as the basement now had partitions and newly hung sheetrock for two new bedrooms, a bathroom, a laundry room and a large family room.

Kids ran up and down the stairs to get food. Marissa packed her round little cheeks like a squirrel with peanuts and candy and scurried off to her friends. The boys dumped out all their Lego’s. Ian was chased and taunted by the girls who thought he was cute. Val’s daughter was in love with him and caught him to plant a kiss on his cheek.

Val called all the kids upstairs, and everyone gathered to sing Happy Birthday to Becca. My mother held her sweet little granddaughter as Kristy opened the huge pile of presents. Kristy appropriately took her time, reading each card aloud for the watching guests and passed them around for guests to admire. The gifts were caring and thoughtful; picture frames and photo albums, musical animals and furry little stuffed critters, outfits and sleepers. Someone filled a box with diapers, lotions and baby bath products.

On the spur of the moment people drove for hours. Jim’s mom and dad drove 180 miles to celebrate with us, and Aunt Mitzi joined them. Another aunt surprised us when she arrived in from Wisconsin. She always lived with my grandmother who had passed away the month before and we had been unable to travel out of town for the funeral.

Big sister, Kristy handed me her special present for her little sister. She had used all her savings from neighborhood babysitting to buy Becca a little two-piece pink and mint green bunny outfit. She was so proud of doing it all herself. That evening the house was alive with laughter . . . the laughter all of us needed in that time of stress and uncertainty. We found hope. We were surrounded by love and so blessed by those individuals who reached out to us as a family.

As I was eating my ice cream, I took a little bit on my spoon to give Becca a birthday dessert sample on her lips. Since the first early days when she quit accepting a nipple, she had never had any food item touch her little lips. Tonight she seemed to understand that this was her party, and she was going to try something. She squished up her nose from the cold and then licked her lips not quite knowing what to do with it. With everyone in the room laughing she smiled in the excitement.

As the evening wound down, we had a house full of company, and three-year old Matt had slept through all the noise and commotion. He woke up in time to go back to bed as the last of the guests left. Matt stared with half sleeping eyes at the overflowing table of goodies, and he grabbed a handful of gluten-free heart cookies. Then he snuggled in his father’s arms, quite unsure of what had transpired while he slept.

Cheryl readied Becca for sleep while Val and I cleaned up the party mess. Tomorrow, bright and early, we would depart for the hospital, this time to try and help Becca’s teeny tiny heart.


Heart surgery morning came too quickly, and we loaded Becca and her boatload of equipment into the stroller . . . and then into the van, and then out of the van . . . and into the stroller . . .into the lobby and up the elevator . . . back to the intensive care unit. After six months I knew the drill. Labs, labs and more labs . . . wait, wait and more waiting. This time I didn’t run.

I sat. I waited.

I prayed for everything to be all right.

I looked up at the approaching doctor.

“Becca was out of surgery. The passing of the balloon through the valve was not successful. The valve was too misshapen to be helped. He had taken biopsies of the thickened wall of the ventricles of her heart to see if it would shed light on what kind of cardiomyopathy Becca had. As he was slowly pulling out the catheter during the procedure Becca gave him quite a scare. Her heart went into ventricular tachycardia and raced out of control. Fortunately with administration of medication he got it to resume a normal rhythm. We could not go through any procedures without Becca scaring her family and physicians with some heart-stopping prank. She kept us all on our toes, and when the moment passed those gargantuan episodes strangely eased the huge fear and uncertainty of the moment.

She remained under close observation in intensive care for the next couple of days. With every surgery Becca seemed to require IV antibiotics and she always spiked a high fever. The blood cultures revealed deadly systemic staph infection, even though they had given her IV antibiotics. The medical staff worked to get her temperature down and her feedings back on track so she could go home to her private pediatric intensive care nursery.


The home-nurses were set to greet us when we arrived, offering welcome home smiles and support unraveling and navigating Becca and the stroller back to where she belonged.

The news of Becca’s heart was not good, but for today she thankfully was still alive and home.


I knew in my heart of hearts we were on borrowed time. She was destined to the fate of many critically ill babies. Becca was as sick as it gets and I didn’t know any other Noonan syndrome babies with as many complications as Becca who were still alive.

Sometimes Iwondered if making her stay was wrong. I wondered about her quality of life. She was in such pain and it was so hard to see her suffer.  Were we right to allow it to continue?

Ichose to honor my promise to God.

I would love Becca no matter where it would take us.

Thank you to Make A Wish for their incredible gift of memories with Becca.

Thank you to our everyone for making Becca's birthday a miracle of the heart.