End Crisis Mode. Start Blog.

"Just one more..." It's a phrase we hear frequently from kids, "Mom, just one more time down the slide!" Sometimes it is said in order to remind us that things will be better as a sort of euphemism of positivity that offers a reward. "Just one more dish to wash and I can go have a cup of coffee." Or it comes in the form of encouragement we offer ourselves to get through a tough situation, "Just one more day and that it will all be over."

In most situations, the concept of "just one more" can help us take a complex task, no matter how desirable or horrifying, and break it into more manageable pieces. In my case, "just one more" was what my husband and I decided after having our first daughter, twin daughters 16 months later, and talking about having another child in less than 4 years. After a tumultuous pregnancy in many ways, Bernice Carson Smith arrived 10 weeks premature (3 pounds, 9 oz.) at 11:56 PM on October 3, 2007. She was diagnosed with a significant congenital heart defect, only a portion of another diagnosis: she had just one more chromosome.

"Just one more" took on an entirely new meaning. Down syndrome and wasn't just "Corky" from that eighties TV show. The world of congenital heart disease was new territory. These uninvited visitors had knocked on my door, invaded my most personal and private spaces, and told me they were staying for the rest of my life so I had better figure out how to live with them and find the bright side.

This was the first time I could touch her about an hour or so after she was born. I only had about 5 minutes with her as not to overstimulate her little body. She was taken away via helicopter hours later to a hospital that could better monitor her cardiac needs. In the year that was to follow the moment this picture was taken, little Bernice would take 4 urgent helicopter rides, live for 220 days in multiple hospitals far from our home, and undergo three open heart surgeries within 4 of those months. Our Northern Michigan town rallied around our family and daughter, bringing us hundreds of meals and hours of childcare for our older daughters, as well as innumerable supports during this crisis-jammed time in our lives

This was our first family photo of all six of us during our near 60 days in the NICU:

This was our first family photo taken at Christmas once Bernie was home from the hospital after her birth.

Heart surgery was the following April after contracting RSV, a respiratory virus that affects preemies.

And another heart surgery later that same month... I started making little movies of her progress since I could tell it would be a long road until we could be home sharing life as we once knew it with friends and family. She became known as "The Bern" and the campaign to "Heal the Bern" had begun. She was no longer a patient that followed the rules which made her something of a celebrity since she lived through so much. She had no idea.

Home for a few weeks. After an unexpected crash, she had a third heart surgery that July of 2008.

It was a very long recovery. We spent months and months in the hospital. Bernie faced death on quite a few occasions, both before and after her last surgery. This was the first movie I made after her third surgery.

Bernie was able to move out of the pediatric cardio-thoracic ICU in early September of 2008. She spent about 100 days there since April. This is the movie I made about how many fabulous PCTU employees it takes to get a family through the heart surgery process. It also quite triumphantly shows Bernie leaving their walls once and for all.

The six of us were back together again in September to celebrate her first birthday with 400 of our supporters, family, and friends.

Bernice endured more than 20 episodes of cardiac arrest during her stays in the hospital for heart surgery. She defied all odds even though falling through the cracks was a game she played frequently. She was on death's door and at her worst point, when she could not be touched, turned, suctioned, or cared for in the most basic of ways, there was really only one person left who thought there was another plan that could save her. That was her surgeon, Dr. Jennifer Hirsch. Her established relationship with Bernie was special and a very unique bond developed between us over so many months. We wanted her to be Bernie's godmother.

She accepted the honor. Bernie and her cousin Charlie were baptized together in October of 2008. The girls dressed up as superheroes for Halloween that year. Izzy was Super Girl, Sadie and Lucy were the Wonder Twins, and Bernie was the talented and lovely Dr. Hirsch.

The representation of the number one is often looked at as inconsequential. The purpose of this blog is to reinforce the significance of "just one more" and the positive impact of having a child with Down syndrome has on our family's daily life. One has value. One has life. One shapes and changes the attitudes of thousands for the better with her spirit, determination, and joyful presence. One transforms people's lives and forges new and beautiful relationships. One offers hope and positivity and tells us that our lives will be better because she is part of our world. She truly reminds us to always look up! Bernie, nearly 2

Here we all are just before Bernie's second birthday.

And so I document our story from today forward here to share with you the amazing journey and gift of "just one more". As Bernie now begins to take her first steps, I will take my own in writing about this privilege and gift I've been given in being Bernie and Izzy and Sadie and Lucy's mom. Thanks for following along. Missy