Physicians and Medical Professionals
What I want you to know first is how grateful I am for all of you. You have dedicated your life to medicine. You sacrificed more than I could ever know, to help others. For that I thank you.
There are still some things I would like you to know. You were right in that having Daniel changed my family in ways I could never have imagined. Losing him has been the hardest thing I have ever had to face in my life. It lead me to thoughts of suicide, even though I love the Lord and believe it would be an unforgivable sin. It was that hard. Having Daniel and being with him did affect my four daughters. They have been neglected and made many sacrifices before and after he was born.
aniel did affect my relationship with Jeremy, we will never be the same. I am not the person I was last July, and never will be again. Daniel impacted every aspect of my life, I neglected everything and everyone in my life. He changed my very personal relationship with God. I have never hated God in my whole life. I did for a time after I was told Daniel had trisomy 18 and wouldn't grow, wouldn't live until birth.
Some of you were kind. Some of you went well out of your way to help our family and respect our wishes. Some of you were not. You were wrong. Your motives may have been good, but you tried to make choices that were not yours to make. You advised things not based on medical knowledge but based purely your own values and feelings. That was wrong. Only a family should be able to make those decisions. Only a family should be able to decide how much and how many sacrifices they are willing to make. We chose Daniel. It was the hardest thing we have ever done but I know all of us would do it again.
Daniel did grow and Daniel was born. Daniel was a person here on this earth and taught many lessons and touched so many people. God forgave me for hating Him, He understood. He had to watch His own Son suffer. I have always had a very close relationship with Him. The night I found out about Daniel's condition I sat on the computer and read one horrible story after another, I physically felt God there with me for the first time in my life. He was there to comfort me, even when I didn't want Him to. I feel closer to Him than ever. He has been with me these past weeks with His favor and the people He has put into my path to show me His love and the way out of my darkness.
My daughters are amazing. They had to learn that sometimes we don't always come first. They learned that families support each other. Sometimes we do the supporting and sometimes we are the supported. They learned that each life is precious and has meaning. I know that as woman they will have a whole different outlook on physical love and what it means than most of their peers. They have changed dramatically and will never be the same. I am so proud of them.
My relationship with Jeremy is stronger than ever. Jeremy never left my side. He let me be angry and sad and mean. He just loved me through it all. Truly and with his whole heart he loved me. He loves Daniel, his only biological child, fiercely and totally. Jeremy was with Daniel for his 15 precious days and wanted the best for him, even when it was hard. Jeremy held me for days after Daniel died. Jeremy has loved us all, even when it was hard. He has my heart and my greatest respect forever for all he has done. He is the best example of how a man should love his family and I am so happy my daughters have been witness to that.
We have been so blessed and we know that.
I will treasure my time with Daniel for the rest of my life. We each have our own journey to take. Please allow families to make their own informed decisions. Please let them know the medical facts that pertain to their specific situation. Please don't encourage them to make decisions immediately. I know you don't have time to hold everyone's hand and talk to them for hours even when you want to. Please know that there are resources available that they can be referred to if that is needed.
I am afraid to read that 90% or more of pregnancies with a discovered disability are terminated. I am afraid because I don't believe it to be that simple to "try try again" as I was told within an hour of discovering Daniel had trisomy 18. I am afraid for the women who listen and terminate and then discover later they could have had some time with their child. I'm afraid because medicine, as I've discovered, is more of an art than a science. Doctors are wonderful human beings, but they are sometimes wrong. They do not know what is to be of any person's life, only God can know that. When we try to decide who is worth our resources and who is not, where does it end? Who is educated enough to say who lives and who dies? What is the definition of a lifetime? Does someone have to live a certain number of days, months or years to have a positive impact on society? In today's "instant" world, isn't important to be reminded sometimes life is hard, sometimes we have to put others before ourselves?
The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.