Fighting for Life

Back in 2002, I picked up a book lying on a give-away table in our office cafeteria. Love, Greg and Lauren was a book of e-mails that Greg wrote to keep their friends posted on Lauren's progress after being burned over 80 percent of her body in the World Trade Center 9/11 attacks. I was mesmerized. I felt like I was right there with them in that hospital burn unit awaiting each day's prognosis. I read like a junkie looking for another hit.

I felt much the same as I read Letters to Darcy, which was graciously supplied for me by Christian Speaker Services. Tracy Ramos blogged her joys, frustrations, fears and sorrows as she discovers first that she is pregnant and then that the baby she is carrying has trisomy 18, a birth defect that made baby Darcy "incompatible with life."  Ramos shares her feelings sometimes with such naked honesty that I want to avert my eyes. But I keep on reading, all 11 months of posts, through the birth, death and aftermath. 


Below is an interview done with Ramos. May it inspire you to fight for life no matter how small, especially as we approach the National Sanctity of Human Life Day on January 24. And if you want to win a copy of Letters to Darcy, post a comment about something from the interview that made you think.

1. When you received Darcy’s diagnosis, did you ever feel as if you were being punished for something you had done?

The question of whether I had done something that would cause God to punish me in this way did cross my mind. Jason and I both wondered this. But I know, as evidenced by how God used this special child, that he was not using her to punish me. Of course, the Bible says that God does discipline, or train, His children to put them back on the right course, but that’s not the same as punishment. If the blessings that came with Darcy are punishment, I don’t know what punishment is.         

2. How did you hold on to your faith in God through the trials?

I don’t know how I got through. It would be easy to say that I wish I had slept through the entire thing and then woke up when it was over. But that’s not how I feel. My time with Darcy was the single most difficult series of days in my life. But I would not have gotten to know my little angel were it not for those days. I once heard that it is a beautiful experience that I would wish on no one. Been there, done that, and it’s so true.

I know one thing for sure: The Lord is the author and finisher of my faith (Hebrews 12:2). I had faith not because I had it in me to have faith. I had faith because He gave me just enough faith to go through this.

3. What more did you learn about your faith through your journey with Darcy?

I believe that the things I learned about my faith are only some of the blessings I mentioned above. The biggest lesson is that God will never leave us in our time of need. Another is that it relates to the second half of 1 Corinthians 10:13: that God will make a way for me to endure the testings, or trials, in my life. We should never underestimate the power of God or second-guess Him. He loves us and wants only the best for us. And even though we don’t understand how trials can be good for us, we must trust in God’s sovereignty. We need to have faith through the trials, and when we reach the other end, we can look back and see that He has been carrying us through them all.

4. How did you find the daily strength to go on, knowing that your baby would probably not survive long after her birth?

In the beginning, my focus was on finding a cure or anything that could save her. Eventually, my focus turned to wanting to make the most of the time God would allow me to have with her. He gave me the strength and inspiration I needed to focus, not on Darcy’s dying, but on her living.

I wanted to make sure I had no regrets after she was gone, so I made a list that was based on advice I solicited from many people who had already walked this road before me. I made sure that we did as many of the items on the list as God would allow, so that Darcy’s life—however long it might be—would have meaning for me and for everyone else who knew her. We had to make a lifetime of memories in a very short time. We didn’t know how long Darcy would live, but we went through that list as if she were going to die before the next minute came. I believe that gave me the energy and drive that helped me bear what could otherwise have been a horrific two weeks. Jason made it his goal to see to it that every item on the list was accomplished. I believe it was his shining moment.

5. What did you and Jason need to do—in your relationship—in order to persevere through the pregnancy and then after Darcy was born?

Studies have revealed that there is a high rate of divorce for parents of deceased children. We were aware of that and vowed not be a statistic. Our relationship has been tested more through the pregnancy and Darcy’s life than at any other time in our twenty years of marriage. We still struggle, but we are persevering. I believe that our relationship will eventually become unbreakable because we have a righteous multitude who continue to pray for us and provide love and support. We used to think of ourselves as independent people who do not need to rely on others for help. We were determined to meet this challenge head-on. But during that time, God revealed the pride that was the source of our independent attitude, even toward each other. He showed us in practical ways by gathering His people around us in our time of need. I guess this is where the phrases “for better or for worse, in sickness and in health” from our wedding vows come in.

6. In what ways has your experience with Darcy changed the person you are now?

God has made me much more compassionate toward those who experience similar trials, especially those who have kids with any kind of trisomy condition. Also, because I survived this heart-wrenching ordeal, I know that I can survive anything and can help others do the same. Last, I have a renewed commitment to help spread a new kind of “pro-choice” message: that we must choose to help those who cannot help themselves, especially our own unborn children.

And, of course, the negative thing about the experience is that there will always be a Darcy-shaped hole in my heart, a hole that will never be filled in this life.            

7. What were some of the supportive things that friends and family did or said that were most helpful in dealing with the pregnancy and adjusting to life after Darcy was born?

Our Family

We came together and supported one another. There was no bickering or whining. The focal point was Darcy. It was the one thing we shared. We assured one another that her condition was not a result of anything we did. We said, “I love you” a lot.

Church

Where do I begin? Every day for several weeks, we enjoyed meals that church friends had lovingly created. Our deacon family coordinated activities during Darcy’s birth. During the delivery, several women were there to coach me. Those who had medical backgrounds were available to us 24–7. Those who knew photography took literally hundreds of pictures of Darcy and the family. Church families spent the night to help us care for Darcy. Our pastors and deacon constantly checked on us and made sure we were in need of nothing. They brought a church service to our home (one of the items on Darcy’s List was to go to church.) The list is endless, but the experience would not have been the same without the support of our church family. Our little church became a picture of how the body of Christ should act.

Friends

Friends (neighbors, doctors and nurses, and other acquaintances) were very understanding. Knowing that hundreds of these people were available to us at a drop of a hat was so reassuring.

Total Strangers

The comments posted on Darcy’s Web site from people all over the world were a source of inspiration to us. Finding out about lives saved, families reunited, and people finding their way back to God gave us a clear sense that Darcy’s life had purpose. We took comfort and strength in those numbers: Approximately four thousand people a day followed Darcy’s story!

Prayer

Prayer kept us connected to God. That connection stayed strong, due in large part to the thousands of petitions people brought to the only One who could help.

Scripture

It may be difficult to open the Bible in times of such intense pain, but there is so much comfort to be had in knowing what the Lord has to say about times like these. The verses I have stated above have been my inspiration.

Music

I played several specific songs constantly during our time with Darcy. Now when I hear those songs every now and then, my thoughts return to the sweet moments I had with my little girl in my arms, her smell, her softness, her purity.

You may find out more about this book at http://www.darcyanne.com/index.html.