Happy Father's Day David! I'm so glad Rachel is still here to celebrate with you - that is an unexpected blessing! You are a wonderful Father and I am so glad I can journey this road of parenthood with you!
This morning the kids and I gave Dave his present - chocolates (no surprise), a picture frame that says 'Daddy and me' for a picture of him and Rachel to go in His office, and a book called "I shall not Hate", written by a Doctor in Gaza whose daughters were killed by Israeli shelling. Dave preached this morning - his first sermon since Rachel was born. I wish we could have been there - Rachel was fussy last night plus Abigail had her first experience with Croup so I was up till 5:30am. (groan) I am excited though about some of the themes Dave talked about and we're both hoping that Dave can add something to the blog on Tuesday. Themes and questions that have been on our mind since we first found out the news about Rachel. If God is our Father, why doesn't he always heal? What is a true definition of health? What is the value of a person? so stay tuned.... in the meantime, here's a teaser/quote...
"In reality there is no such thing as a non-handicapped life. But ideas of health set up by society and the capable condemn a certain group of people to be called handicapped. Our society arbitrarily defines health as the capacity for work and a capacity for enjoyment, but true health is something quite different. True health is the strength to live, the strength to suffer, the strength to die. Health is not a condition of my body, it is the power of my soul to cope with the varying conditions of my body."Jurgen Moltmann
We are doing well for the most part. Rachel had a really bad time with mucus the other day and it lasted for quite awhile. That's really tough. Our mother/father hearts hurt to see our child uncomfortable. I have wondered sometimes what it would be like if Rachel were suffering all the time. I am so relieved and thankful that this is not the case. We are often asked, "Does she cry?" Yes, she does. It is much quieter than other babies but she does let us know she's unhappy! She has been fussing more in the past few days. I feel as though I want her to be in my sight all the time, in case she is mucousy. We jump at every grunt and peep at night too because when she is hungry we want to act quickly. There have been many times when we have finally had the bottle all ready just to have her fall back to sleep in exhaustion. There are alot of things about this that we would feel even with a "healthy" baby - like exhaustion and guilt for saying yet again to the other kids "No, I can't do that now. I'm busy." We are settling into a rythmn here of life with three kids and it is busy. We are glad for it. At the same time we are preparing our hearts for the changes that are coming.
We have been asked why Rachel is still with us. Some have suggested that the Doctors might be wrong... some even go so far as to say "She'll be fine. She'll make it - I just know it." We have been chastised for not believing enough that she will be okay. Unfortunately, these comments are neither helpful right now or true. We believe that God is the Giver of Life and He holds her life in His hands and He may extend her life as He wills it.....But we do not believe that God has ever promised us that she will be healed - and neither do we believe in brushing off medical expertise. We feel that our main job right now is to prepare for Rachel's death. Please respect us in this work. And it is tough work.
So, why is she still alive? The answer is not a simple one. Medically speaking - there are explanations for why this might be - for one, what doctors thought were collateral arteries may be ducts (please read post from last weeks Dr. apointment). One of the predictions while I was pregnant was that she would live 2 weeks - 2 months. We are still within that range. But beyond that - like we have said - her life is in her Father's hands. Even our Doctors admit that there is a large element of the unknown. We know what is going on physically in her body but there is another piece to all of this. So, the real answer is that we don't know. That unknown is hard.
As to the question of healing, I want to share something that we read early on in this journey. In a book entitled Shaming the Strong: The Challenge of an Unborn Life, author Sarah Williams writes deeply and well about their experience of choosing to carry a child whom they knew would die. At one point she recounts her experience with one well meaning woman who kept on encouraging - or pressuring - her to pray for and expect healing for their baby. After a time, Sarah could remain silent no longer. This is what she said, " I know it may sound strange but I see this pregnancy like two big roads. Each road has a large sign over it and i have to decide which route to take. The first one says "Healing" in big letters. The other sign is a bit more difficult to read, but I think it says "God Himself". This path doesn't look nearly so inviting. It's dark and unknown. I don't want to spend the precious time I have with the baby searching for healing. I want to spend it seeking God and loving the baby as she is. Paul and I do not feel that this baby will live and we trust that we will find God in the pain, not in the avoidance of it."
This has been our experience as well.