Today is Ethan's 9th Birthday. It's so hard to believe it's been 9 years since he was born. 9 years that we have been blessed with his sweet smile, his contagious laugh, his loving nature, his easy going personality, his amazing strength, his bravery, his endurance, his unbelievable progress and determination, his surprising sensitivity and compassion for people when they are sad, his innocence.
On January 17th, 2000, during a routine ultrasound when I was 18 weeks along, they told us we were having another boy, and I remember getting a little teary because I thought for sure it was going to be a girl. That was the last time I can ever even fathom caring what the gender of a baby would be because in less than 5 minutes after that, the tech started acting weird and went out to find the doctor. We both knew something was wrong, and when the doctor came in and confirmed it, all I could think about was how I would be happy to have another boy, as long as everything was okay with him. What the doctor found was that the baby had a slight problem in his cerebellum. That lead us to do an amnio, which lead to a diagnosis of an "unbalanced translocation of chromosomes 7 & 11". His prognosis was poor. IF he lived past birth, he would never sit up, eat solid food, walk, probably even laugh.
It was the worst day of our lives. The devistation of hearing that news about a much wanted, and planned for pregnancy is not even something you can describe with words.
At that point we had a two week window that we could terminate the pregnancy. We read every piece of literature we could get our hands on and prayed every kind of prayer we could imagine. We talked to Bishops, missionaries, God, friends, people with kids with disabilities, and each other. We both withdrew from the world and did the bare minimum of being normal because we had Chase. But it was hard. That time seems like such a blur now.
What I do know about that time is that I developed a testimony. I do know that there is no true "church". I found that religion and spirituality is inside of us and is a very intimate, personal thing for every single person. God is there. I do know that. "He" gave me the knowledge that church is organized to help bring people together for worship, family values and community. But it has nothing to do with being at the closest level to "Him". That is inside of us. Between us and God. And absolutely nobody else. The answer we did get didn't seem like an answer until about a year later, when we looked back and realized that us not being able to make that decision was the best decision we ever made. To do nothing and let things happen how they might.
All we knew was that the baby was kicking, and every much our son as Chase was. We went in for several detailed ultrasounds and found everything else was right on target. He had nothing physically wrong or any signs that he would be a sick child. So we decided that we could not be the ones to end his life and that whatever was meant to be, would be. And that we would deal with whatever needs he might bring.
The only thing we asked of God was to make our son happy. Honestly, that is all we asked for. That would make everything else worth it.
Well, here we are 9 years later. Ethan is delayed both physically and mentally. He doesn't sleep well, so he wakes us up several times a night. That is the hard part of being his parent. But he is nothing like what they told us. He is walking, eating everything, he laughs deep belly laughs and loves music and roller coasters. He doesn't need a single piece of medical equipment (besides his silly arm guards - he likes to suck on his fingers). And aside from a few surgeries for kidney reflux and tubes in his ears, and a couple of very scary blood infections from the kidney infections and three hospital stays a long time ago, he is a healthy, amazing little boy, who is learning more and more every day. Most important, he is happy. If you know Ethan, you know he's happy. Smiling and laughing most of the day.
Thank you God.
He amazes us. To our very cores. Sometimes I just stare at him and wonder why were were so blessed to get him. I will never know, but I do know that we cherish him. Every day.
Happy Birthday sweet Ethan. You are so loved sweet boy.
