Friday the 13th? Our Story's Prequel

Five years ago today was the day. Friday, April 13, 2007.  I picked up a pregnancy test from the corner drug store and came back to the same bathroom in which I received the news with my other two pregnancies.  I thought about whether or not I should do this on a day like Friday the 13th. Should I wait a day not to have that stigma of this "unlucky date"?  My inability to postpone the gratification of knowing got the best of me. I tore open the wrapper, checked the kinds of lines I was looking for on the box and proceeded to seek results. There it was. Confirmed. New life in the works.

The actual test is now more or less a Christmas tree ornament. Yes, all of those special tests are with us.

I do not consider myself a superstitious person, but from that point forward, however, a strange set of situations arose and would continue to unfold for exactly one year. This was also consequently the 13th year  Jeff and I had been  together after our first date on June 4, 1994. Here's the shakedown.

Our dear dog Fergus, a now oafy and perfectly complacent Labrador,  decided he would roam the neighborhood. After many fence repairs and efforts to make sure 3 little people could not mess with our two gates, he still found a way to lose his collar in the yard and get out,  managing to get picked up by animal control for the bargain price of $125.00.  Talk about angry! The city would want to charge us that amount as well until I appeared before the magistrate with the girls and pregnant belly to dispute the situation. Thankfully, I got out of it and by the next day had an appointment to have the dog neutered. He certainly learned not to mess with me after that day and has been nothing but charming ever since.

 He looks totally innocent here, doesn't he?

There were surprising issues with friends that arose that reminded me of those girly drama days in 8th grade causing hours of tears and frustrations. Certain family members made it clear they only wanted particular conditions attached to their relationships with our family. I was trying to work a part time job to have a little extra spending money.  This was a very isolating time and despite my efforts to send smoke signals of distress from "my island," I really felt like many of the boats of friends and family were just floating by waving under the assumption that I was teaching my kids about fire. Perhaps all of those hormones had something to do with it, but even in retrospect, this was an extremely emotional time with a lot of negativity and sadness seeping into my life.

It was weeks later that I received word from a friend that her sister who had three small children suddenly died after putting the kids to bed one night. The circumstances of her death eluded friends and family. There was no warning. This beautiful mother was suddenly gone from her children and husband and family forever as she sat down to check her email after a long day. Having lost my brother at a young age in an equally tragic situation in the same town, I was compelled to support her and attend the funeral. It was heart wrenching. I came away from the funeral in awe of all that moms do and all that is gone when they aren't able to be there for their families. It would later be revealed that this mom died of a congenital heart defect, unknown to her family until too late. The question hung heavily over my head: What happens when something happens to us as mothers of young children?

I took this question back to my support circle of moms who regularly got together every Monday. They were great. They knew I attended the funeral and the circumstances and it was totally fitting for me to explain this experience. My friend Julie piped up in the midst of my tears. She had battled breast cancer and was in remission.  Her words echoed like organ pipes in an empty sanctuary, "Missy, you would be amazed." This statement was followed by what I remember as a silence. Along with it, the definitive understanding that it is those of us who sit amongst you will rise to the occasion in compassionate and giving ways you just can't even imagine until you really need it.  She conveyed the need for us to just trust that if support is needed, support will be there.  Julie has since lost her battle with cancer, but her words remain with me to this day.

By this time in the year it is August of 2007. That part time job I had taken ended with an attack on my character which I found incredibly offensive and quit. Something I don't like to do, but my sanity needed it.

Word came to me days later that one of my former students was out shopping with her mother and a terrible thing happened. The mom dropped dead unexpectedly in the store as they shopped for a movie to rent for the night. I knew her fairly well from typical school interactions for years. She was the fun-loving and involved mother of three school-aged girls and died of a heart attack in the middle of the day doing ordinary things. It was another funeral to attend and more kids to worry about how they would manage without their mother.  This was getting really difficult.

Within days after this, I came home after taking the kids on a bike ride.  Jeff was out of town so it was essential that I kept the kids busy and outside as much as possible to ensure maximum time in the arms of Morpheus. The twins were 2 at the time and Izzy was 3. Sadie could ride in the seat on the back of the bike while Izzy and Lucy rode in the bike trailer as their pregnant and breathless mama pedaled and pedaled. And wasn't my motive in doing this to make them tired? It was all good though.

Until we got home. I set the children free from the confines of the bike seats and let them play outside while I got something quick and easy out for dinner. I no sooner set a pot of water boiling on the stove when Sadie and Izzy came screaming from around the house. They were frantic and completely panicked, running and flailing through the yard by the time I caught up with them. It wasn't long before I realized that they were being swarmed by bees.

I had no idea if they were allergic to bee stings or not. Bees were crawling out of their shirts and pants and flying around us even after coming inside. I stripped off all of their clothes and examined them for stings. No one seemed to be puffing up, but it was hard to tell with so much crying and screaming happening.   They were starting to swarm around me. I carried the girls from one room to the other hoping to eventually get away from the bees. I quickly called my friend Jen to help me get a handle on the situation. I had no idea how many there were at the time, but when all was said and done and things calmed down, I think I counted between 12 and 18 dead bees in the house up cleaning up. That was just what made it inside the house! Sadie ended up with about 5 stings and Izzy with 7.  I even found a dead bee in my wallet the next morning at church as I reached for an offering. I didn't need to do that again any time soon.

The more well known part of that year's story then began to unfold the next month, as previously documented on this blog and the care page. September 17 would be the day my concerns would shift from all that had happened over the summer to caring for a premature baby, coming to understand Down syndrome, and really getting hammered with ultimately 3 open heart surgeries on our sweet little baby who had so many strikes against her. By May of 2008, we would be home for a while.

But the 13th year was not over yet. In that very beginning of June, 2008, I was diagnosed with my own permanent and irreversible autoimmune disease. With daily medication and attention to the symptoms, it's pretty manageable from everything I understand thus far. Who wants to hear that though? Aye.

Even though Bernie's heart issues fired up again in the next month, the 14th year began on June 4, 2008. Her next surgery worked and monumental hurdles were jumped.  The kid made history in lots of ways. 

 A portion of the new children's and women's hospital brochure. Happy Bern is in the lower left corner...

Facing all of these events, circumstances, and situations within such a concise period of time does seem a bit uncanny and considerably undesirable at first glance.  And tragedy? I'd never wish it upon my worst enemy. But it happens and we have to eventually persevere. Was all of this just plain unlucky this first year? Who knows. Now that I have had 5 years to digest these events, I see a bigger picture. If you can just get through it, what blooms after such an intense storm has tremendous beauty.  And Julie was right. I was totally amazed at who showed up to see us through. Those blossoms are that much more beautiful because of the endured storm it took for it all to eventually take root. Bernie didn't come into our lives on Friday the 13th. She existed weeks before. That day to me now is more like the knock of the big bad wolf of adversity blowing down my door bringing torrential rain, gale-force winds, and electrical mayhem that was begging me to prepare.  But what blossomed in recent years is beautiful, dynamic, and just as strong, if not stronger than any of those other damaging forces. Our children are more compassionate and patient (most of the time), our marriage is stronger than ever, and it's easier on a daily basis to prioritize what bees are worth having in our bonnets. We just had to hold on and trust.

Bernie and Lucy read Kelle Hampton's new book about her journey through her daughter's first year of life with Down syndrome. It just made #11 on the NY Times Bestseller list this week!  Pick it up! 

P.S. You may see the above photo on Kelle's blog "Enjoying the Small Things" soon if you're a follower.

I'd face all of it all over again.  To be able to see and have what's come about as of today makes all of those other events worth facing. People are amazing. Each person who became known to us along the way, no matter how insignificant their acts may seem, was part of this transformation--my transformation--by a greater love to know and understand the big and small stuff that matters and the forces that truly make life grand.

Thank you for five incredible years. I am one LUCKY lady. Happy Friday the 13th! And how strange...I just realized this is the 13th post on this blog!

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