Bliss

I wish I was still blissfully ignorant to this pain. I wish I never had to meet another person who experienced(s) the loss of an infant (or child). I know that is naive and unnatural. Death is a part of life. I am not scared to die...when it is my time. Watching a friend experience the death of a parent or grandparent is hard. I empathize with them and wish they weren't in pain. I'm sad for the loss of a person who impacted the lives of others positively. And it doesn't make it easier that the person was older. But it is supposed to be natural to lose them before your children. Nature has failed me.

"That would never happen to me." I thought that. It's a cliche, but I honestly did. When a friend unexpectedly and completely unfairly lost her almost two year old, I thought it. I was 39 weeks pregnant with my son when we attended the funeral. The pain was indescribable. The mood in the room was a mixture of shock, grief and love. I hurt for my friend and struggled to find the right words or actions to comfort her. I left the service in tears, hugging my belly...thankful it wasn't me. I'm sure friends and family felt the same way January 15 when we notified them that Ellie had died the prior evening. I don't blame them. I hope they hugged their children a little harder that day and continue to look at them with utter amazement and humbleness. And that is ok. I really am glad Ellie could touch the lives of others, although I would rather her be here with me now.

I want to go back to a time when worry about gaining 30 pounds during pregnancy, maternity leave or saving for college were my major concerns. Of course I worried about my son's health and still do. All new parents obsess over bodily fluids and sleep (theirs AND the baby's)! But I couldn't even fathom him dying. It was an impossible outcome; something that happened to other people.

I don't want to be a cautionary tale. "It can happen to anyone. Look at her." I have given life to five babies and only have one, beautiful three year old and a 13 week baby bump to show for it. (Don’t get me wrong, I am beyond thankful for every second I have/had with each one.) Maybe I am a cautionary tale...not to others, but myself. Maybe I wanted too much. Maybe loosing Ellie and Baby K in November were Nature's way of saying, "You lucked out with your son. He is your statistic. Your miracle. You don't get anymore."

We just found out that I am a carrier of the Cystic Fibrosis gene. It is the most common fatal recessive genetic disorder in Caucasians. In people of European descent, 1:30 are carriers (higher in Northern Europe). Approximately 30,000 people are living with CF, the median age of life being the mid-30s. It is not curable, but advancements have been made and many people live good lives with CF. My husband was recently tested too and the results will be in late next week. If he is a carrier (because both parents must be carriers), our baby will have a 25% chance of having CF. Statistics have ruled my life the last 15 months. Ellie had a 20% chance of survival. Of all heart defects, her type represents 1%. Of that 1%, 1% is classified as “isolated cardiac anomalies” which means no known chromosomal connection. Approximately 20% of all pregnancies end in miscarriage. Approximately 25% of all multiple pregnancies end in the Vanishing Twin Syndrome. The chance of having a miscarriage after 12 weeks drops to 5%. We have a 6% chance of having another baby with a heart defect. We have a 1:1,000 chance of having a child with Down’s Syndrome and a 1:10,000 chance of having a child with Trisomy 18. What is the statistical probability that my son will die too? And on and on and on. With this pregnancy, I have been so focused on having a child with another heart defect and making it past the 12 week mark that I was completely and blissfully ignorant to anything else happening.

Nature is still trying to tell me to wake up. I think I have finally stopped hitting the snooze button.  

The Tale of Miss Emily and Mr. Daleshire

I feel like my life is slowly morphing into a Victorian novel. BBC worthy even!

The tale starts with a young women on the outskirts of everything. Her name would undoubtedly be something like Miss Emily. Miss Emily has different ideologies, political views, philosophies, interests, etc. as the other young women in her social circle. But she plays the part of the good girl and does as her parents and society expects: good grades in high school, college, and graduate school followed by getting a job. Along the way she meets a handsome older man who is somewhat of an outsider himself. Not the typical Alpha-male type but an artistic, educated, funny man, secure in his masculinity and confident in his abilities. We will call him Mr. Daleshire. Mr. Daleshire and Miss Emily court within the traditions of their day and fall deeply in love. Shortly after professing their unyielding love for one another, Miss Emily travels 2,000 miles away to volunteer for one year. But their love stays true over the days and miles and Mr. Daleshire proposes to Miss Emily while she is away. They marry a year later. Bliss.

The next few years are full of laughter, love, and adventure for the Daleshires. They travel the world. Buy a house. Get a dog! All the wonderful things young couples do when they are in love. However, despite this deep love and respect for one another, they feel something is missing. A child. So, they excitedly begin trying to have a baby after two years of blissful marriage. Months upon months pass; their spirits being broken along the way. But then, fifteen months later, they find themselves expecting a baby! Excitement and fear! The pregnancy and baby boy are perfect. Life couldn't get any better.

Mr. Daleshire, being the hardworking, honest, and intelligent man that he is, begins to look for more career opportunities to supplement his growing family. So, the Daleshires pack up, leaving dear friends and family to travel to a new place. This place isn't ideal for either person. Upon arriving, Miss Emily is in tears and vows to leave within three years. But Miss Emily also finds employment in the new place, they purchase a house and begin to talk about expanding their family again. Discouraged by the length of time it previously took to get pregnant, they are shocked after just four months to learn they are expecting their second child. The pregnancy progresses wonderfully; a girl! The Daleshires cannot wait to complete their family. Their visions of two children playing in the yard is coming to fruition.

Then disaster hits at 30 weeks pregnant. The baby girl is very sick with an imperfect heart. Chaos ensues after the news is broken. Hospitalization. Doctors. Prognosis. C-section. Diagnosis. NICU. Death. Within 10 days of finding out, the beautiful baby girl has passed away. The Daleshire's world is turned upside down and their hearts are broken. Relationships with family members deteriorate or all together end. Friendships are made and lost. They fight harder and love deeper than ever before and somehow survive.

As time passes, they slowly begin to regain strength. Although they are in love with their son, they grieve for their daughter and yearn for another chance. Ten months after the death of their daughter, they become pregnant again. Joy. Pure joy for the first time in such a long time and they tell all their friends and family. Then it is over too. Just six short days and Miss Emily miscarries. Pain. Pain again.

Making it through the holidays and one year anniversary of the birth and death of their daughter, the Daleshires lean on one another and their friends and family. With reflection and memory they look back over the past twelve months of heartache and decide, just one more time, to try for another baby. Visions of two children playing still dance in their heads and they try to make it a reality again. Miss Emily doesn't have problems getting pregnant like the previous two times. Is this a sign that it is meant to be? She is cautious this time--guarded--as is Mr. Daleshire. They choose not to share their news with family and friends and await their first appointment with a doctor. To their surprise, they are expecting twins! Shock. Shock and hope. They shout it from the rooftop!

One month goes by. Miss Emily is nine weeks pregnant and is sick with nausea...but thrilled about it. Mr. Daleshire is supportive and caring as always. Their young son is excited to welcome his siblings. The news of twins has brought new life and joy to grandparents who have had to repeatedly watch their grandchildren die and children suffer. Coworkers and friends share in the joy. Excited to see the babies, the couple goes back to the doctor. Tragedy, yet again. One of the baby's hearts has stopped beating. More pain. How can this keep happening?

The Daleshires have lost one daughter at six days old, one baby at 4.5 weeks pregnant, and one twin at 9 weeks pregnant. They now hold their breath for the surviving twin. What will the next doctor's appointment show? How will this story end?