During Abby's soccer practice a few nights ago, I went jogging with a friend I recently met. She works part time at our local Children's Hospital, and it really is a fun and remarkable story as to how we met at the very first soccer practice of this year (but I won't go into that long story), and then how our girls were placed on the exact same team and have become best friends since.
Anyway, during our jog that night, my new friend asked a lot of questions about Nathan. She was really inquisitive about what his diagnosis entails, usual prognosis, and everything in between. I told her a little bit but then decided it would best to start closer to his birth...you know, since she understands the medical stuff more and all.
It had been a while since I had talked about those first few weeks when we knew something was wrong with our son, and I had forgotten the searing pain that accompanied those weeks...until I retold the story and felt the stab hit my heart. Oh, how it hurt.
Living life loving a child who doesn't always have it easy, who doesn't always go by the books, who does things differently than other children...living life with these children is definitely an adventure you would have never imagined to be participating. But it become natural for some. You know no different after a while, and everything from sun-up to sun-down becomes normal after some time.
But you forget. You forget how it feels when you first know that something is wrong with your baby...with your child...with your son. That first realization that the plans and aspirations you had anticipated for your child and family had pretty much been vanquished is so very difficult. It is a physical pain unlike anything I can explain. It is a cry from deep down in my soul that I never want to experience again. It is an emotional hardship unlike anything I want to witness anyone else endure. This change in perspective of life is excruciating at first...until God provides the grace to see you through that moment and the countless others that follow. When that happens, it is also one of the closest times of communion with God...a time when there are moments when you feel like your are only being held upright by his almighty hand. It is both excruciatingly painful and spiritually uplifting at the same time.
Knowing and experiencing the emotional and physical roller coaster of being told that your child is not healthy and that his life may be shortened also makes it so hard to witness others going through similar scenarios in their lives. It breaks my heart into pieces to know that the normal lives of those we know and love have been immediately turned upside down in this manner...
Susanna and I are close to the same age and have known each other for many years, meeting at various church meetings during my adolescent years. She has always been the sweetest thing ever! She has also been an amazing source of comfort and encouragement to us through sweet little notes numerous times throughout the past 3 years as we have dealt with Nate's struggles. Susanna and her husband, Aaron, welcomed a precious baby boy into their arms 3 days ago...this is an excerpt of what happened shortly after:
"Jackson Emmett Taylor (Jack) was born on April 4, 2011. -6lbs 5oz - 19 1/2 in. long. He has beautiful blondish/ brown hair and a stinkin cute nose! :) He was perfectly normal for 4 1/2 hrs, crying, eating, getting used to his new world and talkative parents. :)
For no explained reason, he stopped breathing on his own. The doctors are still unsure as to why any of this is happening. He has suffered severe brain damage and is undergoing experimental treatment as of right now. There is currently no explained diagnosis, and we are told a miracle is what we need to pray for.
Please join us in lifting our precious baby boy in prayer to a sovereign, all powerful God. Thank you SO much for your love and prayers. Pray for a Miracle for Baby Jack."
Jack is currently undergoing brain cooling therapy in an effort to hopefully reduce the amount of brain damage sustained by the lack of oxygen. My heart breaks for this precious family, my mind is overwhelmed with thoughts of them, and my prayers have been urgent and fervent for sweet baby Jack, his parents and large extended family. Please keep this child and family in your prayers.