It was the kind of news that is etched into your memory forever. Like watching your child being born, except the complete opposite of emotions. Perhaps it is more like remembering where you were and what you were doing when the attacks on 9/11 happened. Because that’s what it felt like, and that’s what it was, an attack.
An attack on our 4-day old daughter’s health and future. An attack on my wife and I and the joy we had waited four long years to be a part of.
And there was nothing I could do…
It was a normal sunny Saturday afternoon to the rest of the world. But for us, this was our first Saturday with our new daughter. And this was her first Saturday, ever.
There had been a lot of firsts for me that amazing week. First time watching a childbirth; first time cutting an umbilical cord; first time laying my eyes on my new daughter; first time changing a diaper; first time feeding a baby…first time after first time, but mainly, our first child had arrived as promised for our adoption.
Promised not only by the birthmother that had selected Anne-Marie and I from hundreds of other prospective parents, but a child that had been promised by God. The path to this promise wasn’t exactly how Anne-Marie and I had pictured years ago when we first started dreaming of starting a family, but it was exactly how God had planned it all along.
Finding that path wasn’t easy. Following that path wasn’t easy. But for some reason, I thought that path would eventually begin to ease. I couldn’t have been more wrong.
That Saturday afternoon, my wife received a text from our daughter’s birthmother. The message was vague, but said enough to make the both of us start to worry.
“Doctor called about baby…worried about some test results…his #…please call me”
Questions immediately began to swirl in my mind, and I’m certain my wife’s. What doctor? Why did they call her? What tests were we waiting for results on? What could be wrong from those tests? Why would we call you (the birthmother) when we have the doctor’s number?
Anne-Marie immediately dialed the doctor’s phone number as she walked into another room as I stayed to watch our daughter meet her grandmother for the first time. There was so much joy in the room that I stayed behind in, but I could tell that the joy was being sucked out of the room my wife had gone into as she spoke with the doctor and his nurses.
Why did I stay behind? I need to be with my wife. She needs me to be there by her side. My daughter needs me to be there by my wife’s side and not next to her, even if Reagan doesn’t know it yet.
I left the calmness and joy of my daughter, and began to walk into the next room. There was heaviness in the air as I walked closer to my wife as she furiously took notes on whatever the person she was speaking to was saying. She glanced at me as I was trying to read the notes she was taking. The glance said it all, something wasn’t right. Something wasn’t right with our daughter.
A cry from our daughter came from the other room, and I looked back. Everything was ok there, but it wasn’t where I stood. I began to wonder, what could be wrong? How serious is this? She had just been tested the previous day for a heart murmur that had been cleared. Her EKG and echocardiogram both showed everything was ok. What more could there be?
Never ask that question. Whether it’s good or bad, there can always be more.
When her conversation finished and Anne-Marie had hung up the phone, she began to explain to me what the doctors had told her. She did a great job trying to relay the information she had just been told back to me, but I couldn’t understand what she was saying. It wasn’t because she was speaking unclearly or hadn’t taken good enough notes, but to me what she was saying all sounded like a foreign language.
The news was that my new 4-day old perfect daughter had been diagnosed with a rare genetic disorder called Glutaric Acidemia Type 1. After Anne-Marie explained the basics of the science behind the disorder, she then began to speak about the risks and possible outcomes.
Terrified. Easily the most frightened I had been up unto that point in life.
Angry. How could this happen? To us? To her? After all my wife and I had been through up unto this point, why? Why, why, WHY?
I still am.
I’m actually still all three.