There are some days that a parent will always remember. These moments are usually wrapped up in some great excitement and joy. A positive pregnancy test, telling your family there will be a new addition, the first pangs of labor as you realize you will meet your child for the first time.
No parent imagines their cherished moments will be some of the most painful of all. No parent can prepare for the moment you have to share tragic news when you are still processing it yourself.
Imagine having to teach your children about death. I couldn’t at first because my instinct was to protect them. My thoughts the day I found out that my baby would not live were shock, overwhelming grief and immediate spin control. I needed to feel like I had control over something because I couldn’t save my daughter. What I could do was protect my children, so naturally, we kept it from them at first only sharing with them that Amelia was very sick.
My most memorable moment was when I was given no hope. That fraction of a second when I was blissfully ignorant to seconds later when our lives would change forever is one that I will never forget. My husband and I numbly listened to the world class specialist tell us that our baby was a girl (something I already knew deep inside), that she was very sick and had a 99% chance of being stillborn and a 1% chance of dying after birth. We were given a winning ticket to a lottery that no one wants to win, a 100% fatal prognosis. Even more devastating, at 24 weeks, he could not believe that she had survived thus far. WHAT!? His words were cold, medical and not designed to comfort. Incompatible with life and Turner’s Syndrome were all I heard as the cry of anguish flooded my brain.
“She is alive!” SHE is my daughter, my fourth child, my survivor . . . she is a part of our family! I needed hope and he had none to offer.
Our lives began to quickly spin out of control.
The reality was that it was not just my husband and I who were now on the roller coaster of grief. We had three older children (ages 3, 5, and 7) who had spent months praying for a new baby, who danced when we shared our happy news and watched my belly grow over the weeks. This was their sister. A person with whom they were all anxious to meet, hold, and grow up with. How in the world was I going to tell them that they would not get the chance?
There was no real way to hide my pain, even though I tried. Children are natural observers watching and listening to everything around them. They witnessed my daily tears, the whispered phone calls, the abrupt stop in normal routine, the endless sitters that paraded in because we had so many appointments. They watched me fall apart, even when I tried my best to keep it together in front of them. I was a mother who was carrying a much loved child that was never going to be in a family photo, blow out birthday candles, or snuggle in my arms. How could I not fall apart?
We value honesty and communication with our children and quickly realized more harm then good could come from shielding them. Somehow, telling them she was ‘sick’ felt like giving them false hope. We also battled with how family and friends spoke to our children about the situation, because people ended up confusing them with their own ideas of what was happening and handed out hope and healing as if they were lollipops. Trusted adults would tell them it will all be okay, hug them and send them on their way. That was not the truth.
Our marriage struggled because my husband needed that hope to keep going while I needed to deal in another reality. One where a funeral had to be planned at the same time as her birth. I had the reality of heart surgeons, perinatologists, neonatologists, and various other specialists tell me that there was only time and death ahead.
Ultimately, I was the only one who would have to give birth to my daughter, to find the strength to draw from for labor. No one could do this for me, nor did I want them to. I wanted the honor of parenting my daughter throughout pregnancy and birth. So each decision we made reflected only love for her. And it is with this same love we decided that our children needed to understand Amelia’s fragile life.
Within weeks, we told our children the reality of what was happening with their sister. Because I was a child who lost a parent to sudden death in addition to being a former child therapist, I was able to share with each of them in age appropriate ways allowing them time to process the news. We took responsibility for teaching our children about Amelia’s life and eventual death. Lovingly saying to them, “Follow us, we are a family and we will walk through this together.”
After the initial weeks of shock wore off, a new reality set in. We had time. Time as a family to devote to loving Amelia and finding the blessing in the moments we had left. I made it my mission to create mementos and memories with and for my children. Knowing that they would need them after she was born as much as my husband and I did. We honored all the moments she was with us ~ sixteen weeks of time until she died the day after her due date. Amelia’s short life helped my children understand of one of the most difficult things about life ~ the reality of death.
Much has changed in the two years since her birth, including the addition of Amelia’s little brother. Our 15 month old is growing up in a very different family than we were before but our love for Amelia unites us. Her name is spoken aloud every day and is a natural part of our daily lives.
We struggle and miss her but are still standing as we walk together through grief.