Today I read the beginning of an unfinished story which reminded me that change is painful but worthwhile. Congresswoman Jaime Herrera Beutler delivered a baby girl, Abigail, a few weeks ago. Her daughter is a very special little girl. A very special little girl born with Potter's Syndrome who is still alive. Herrera Beutler received amnioinfusion treatments weekly for five weeks and Abigail has been receiving specialized dialysis treatments. She was born at 28 weeks but doctors say she has fully developed and functioning lungs most likely due to the amnioinfusion treatments. Her story remains unfinished but it brings hope and pain to those of us who have been touched by Potter's.
My initial reaction was a gut wringing ache as I thought of my own sons and my questions while pregnant. Then I thought of all of the doctors who have told us this was not possible and the hours upon hours of research I did on my own. I appreciate that Herrera Beutler frankly admits that many doctors told her survival of her baby was not possible. But the pain comes in that she had medical treatment and connections available to her, likely in part because of her political position (but this is strictly assumptive), that were not available to me. I sought that same treatment for Eli but because the medical professionals I saw had no proof of it working they were either unwilling or uninterested in finding someone who would try. Without that help, as I am sure any other "regular" person can relate, it is extremely difficult if not impossible to find that extra level of medical care and treatment. So this story is a double edged sword to me. It is amazingly hopeful to hear of Abigail's survival and I pray she is the first of many Potter's babies. But at the same time it is woefully sad to realize that perhaps had more medical professionals been willing to explore this avenue of treatment that Abigail would only be one of many to have survived Potter's to this point.
This is all speculative I realize. I don't know how Abigail's story will end and I don't know how her story will impact others. What I do know is that change is painful but necessary. Without bravery, hope, persistence and enormous amounts of fortitude in the face of failure, change cannot be realized. Herrera Beutler's family, Abigail included, have already accomplished more change than they may ever realize. I pray that this change extends far beyond medical journal articles to the lower tiers of medicine where it is desperately needed - to Potter's families.
I am missing my sons more than ever today.
Tuesday, July 30, 2013
Friday, July 5, 2013
To whomever may be reading this,
I don't know much of who you are, where you've come from, what you're going through and what the future holds for you. I only know who I am, where I've been and what I'm going through. This blog is testament of my darkest days. I happen to think it's pretty bad and some of the worst kind of stuff a person can go through.
It has been ten years and almost a month since I gave birth to and said goodbye to my first born child, my first son, Wyatt. It has been two years and almost four months since I gave birth to and said goodbye to my fifth child and second son, Eli. Life has happened in the meantime. In those darkest months, days and hours, it was very difficult to envision any future, nonetheless one that included laughter and happiness.
It is from that place that I writing to you. To let you know that life can be good. It may not be good. It may currently be anything but good. But it can be good. Time, patience, hope and love are helpful. There is life amid death and loss. Sometimes we have to seize it and hold on tighter than ever before.
I never imagined my life like this. To be in my mid 30s with a perfectly carved and polished black headstone in a cemetery with two tiny coffins holding my infant sons lying between the plots that my husband and I will share someday. Yet I also could have never imagined the love that I felt for each of those boys while pregnant, upon their births and long long after. I had no idea what would happen to my marriage, whether we would have more children, healthy children or happy children. Yet I sit here today blessed with four wonderful children and a husband who is truly my best friend and most fierce love.
If we look around us and listen to the stories of the people we meet and people we know, we will recognize survivors like ourselves. We will hear the tragedies that others have survived and we can take hope in their lives. Without darkness there would be no light. Without sadness there would be no joy. Life can be good.