Today is November 10th and eleven years ago our daughter, Mia, was born with an extra chromosome, an extra #18 chromosome to be exact. It's been eleven years since I asked my doctor in a curiously silent operating room "What's wrong?". Eleven years since a nurse with soft brown eyes looked down at me and said "She appears to have some kind of syndrome". Eleven years since, while being wheeled back to my hospital room, a medical attendant whispered to me "Congratulations?". And eleven years since a genetic specialist confirmed to me, "Your daughter has Trisomy 18".
Most people who know us have figured out somewhere down the road that once upon a time we had a daughter named Mia. But some don't know exactly what happened. Born with three #18 chromosomes instead of the normal two, the condition is not compatible with life. We were told initially she might not last the night. When she did, they told us it could be days, weeks, months, but probably no more than a year. It was about 3 1/2 months. Now you know.
It's not often that I talk about those days not because I can't handle it, but because sometimes other people can't. But today, I've been doing a lot of thinking about Mia and what she gave us in her very short life. How she gave us such an appreciation for life and for each other.
In no way shape or form were those months easy. And looking back I am in awe sometimes of what we had to learn, how we handled, what we experienced. We learned medical techniques like inserting her feeding tube and used a stethoscope to make sure it was positioned correctly in her stomach. We tried our best to interpret the complicated medical speak of doctors and experts. We welcomed hospice nurses into our home. We battled not just the sleepless nights that come with a newborn, but sleepless months that come with a terminally ill baby who was irritable and in pain. We visited the compounding pharmacy to have morphine broken down in a dose small enough to make her little body more comfortable. When we decided to travel to Pennsylvania for Christmas so all the family could meet Mia, we took painstaking notes on what we should do if Mia died in the car while we were on the road. And we did all this together.
When Mia's constant crying and the intense lack of sleep began to seriously wear me down, Gene asked me, "What can I do? How can I make it better?". And then, along with taking care of Mia on Friday nights and Saturday nights, he tacked on Tuesday nights, work nights for him, so I could have more of a break. On Saturday afternoons he would tell me "Go! Go to the mall. Go shopping." When I got a haircut and came home with the shortest, most manly haircut that instantly aged me 10 years, Gene said, "You look so pretty". During his work lunch hour, he quietly met with the local funeral home to start making arrangements so it would be easier when the time finally came.
During those months I would look out our front window and see sunshine and the life of cars traveling to work, seniors walking around the block, mail being dropped in the boxes. I would think, people have no idea what is going on behind this door. How hard the days are. Yet, Eugene and I had a motto those days, "as normal as possible". I uttered it constantly, as normal as possible.
I will always be so grateful that when Mia died it was in my arms. I was holding her and, God as my witness, she lifted her little arms up to the sky and smiled, and was gone. That smile, that was like my reward. That was my "you've done good". That was my "thank you". My "I love you".
And just one more parting thought, just like on those days when I would peek out my window, don't forget that there are always doors held closed by sadness and challenges. And sometimes that door will be yours. But the door will open again and you will stand in sunshine.
