Jonetta is our guest blogger today. She heard about my blogging project in a group I created for Christ focused support after loss of an infant or child. Here's the story she sent to me....
My entire life God has been with me. Through the hard times and good he has never changed and has never broken a promise. God Knows our hearts he gives his hardest battles to his strongest soldiers his words are true and I hold in my heart along with other things I hold close and cherish.
The Dictionary defines life is the existence of an individual human beings. Science describe it as a condition that distinguishes animals and plants from inorganic matter, including capacity for growth, to reproduce to proceed death. Death...what is death and does it have anything to do with what happens while I am on earth? I am afraid of this word. We all must leave earth sometime.
Death isn't a word you would associate with a new born, a precious gift that God has given you. For me It’s something I live with every day. It won’t go away and nothing will ever change the fact that I gave birth to a 240-pound micro preemie who would leave behind an Identical sister who was 800 grams at birth and would need mechanical ventilation for the first years of her life.
Defeated is what I felt at first, like maybe God had let me down. That maybe I had let the father of my children down for not being able to carry them full term.
Would my other twin survive or would the fact that she lost her identical twin kill her? So many things went through my mind that day. I gave birth in the OR by a team of Fetal specialists who would help me deliver my micro preemie Identical Twins. They were amazing and they helped me get through my entire pregnancy.
Heavenly, my twin who did not survive, was an amazing little girl. The whole time she stayed on one side of my belly and rested. She listened to her momma's and sister’s heartbeat. She played with her sister and loved listening to the music daddy would play on mommy’s belly. All while suffering from Anencephaly, the rarest form of a neural tube defect that possibly could have been prevented had I known I needed to take folic acid.
She matters to me because she gave me life and she gave her twin life because she fought so that her sister could be here with us today. I still see her breathing as I held her in my arms as she passed away so silently, with nothing but a memory of meeting her family who had prayed for her and loved her from the first time we knew about her. I watched her as she said goodbye as me and her dad cried. Their father made it clear that he loves both of his kids and that I am a great mother.
My life has changed a lot since they day I gave birth to my daughters. My Surviving Twin is now 17 months and is currently working on becoming trach free in the spring. We are looking forward to our future and I have devoted my free time in advocating for Anencephaly and Preemie Awareness, and life is what you make it.