Testimony - Chapter 4

You could feel Nicholas' absence from the hospital room after he passed away. I never realized how full the room was of him until he wasn't there any more. We carried that emptiness home with us - empty room, empty car seat, empty hearts. The first thing we had to do was tell Sabrina that her brother had gone to heaven and was never coming back. I don't think she could take it all in at the time; she mostly understood that Mommy and Daddy were deeply sad and all she wanted to do was comfort us.

It was so strange for me to be home after my long vigil at the hospital. I didn't know what to do with myself; my mom, protecting me and allowing me to grieve, took care of the girls while we made arrangements and tried to adjust to this new "normal" of life without Nicholas. Keeping busy taking care of things for his arrangements was how I kept going. That was something I could do for him as his mom. Thanks be to God for surrounding Corrie and I with creative, caring people, because Nicholas' memorial service on December 2 was meaningful and beautiful.

My mom stayed with us for another week to make sure we weren't alone right after the funeral and to help us transition. We doted on the girls, appreciating every moment with them. It all seemed too easy now, with only one baby to take care of. We were so grateful for having Olivia, that "at least we didn't have an empty crib." Mom went home on Sunday, December 9. On Monday I spent the morning getting back into routine with my girls, spending time with them. I saw how much Olivia looked like Sabrina did when she was a baby and I decided to pull out the photo albums to compare. When I looked through the pictures of Sabrina at 2 months, then 4 months, I realized that she was doing things that I had never seen Olivia do, and she was already over 5 months old.

I knew. I knew right then and there that she had it too. Of course, I phoned the pediatrician right away and got an appointment for a few hours later. Then I phoned Corrie and told him I thought Olivia had SMA too and that we were taking her to the doctor that afternoon. His first reaction was anger. I'm not sure what mine was. Anxiety? More grief? I stewed all morning and then I distinctly remember as I was locking the door to leave for the pediatrician that I consciously made the decision to let it go. I said, "Okay, God, whatever You want to do, I'll go along with You, but You'll have to strengthen me to do it." I had to give it to Him. I had nothing left in me to deal with this.

Olivia's pediatrician took one look at her and immediately made arrangements for her to go over to Children's to be assessed. I think God had already lined up the same great doctors for her as Nicholas had, because they all happened to be on call that day too. She was admitted to the CH5 ward for assessment and diagnosis. Olivia and I stayed overnight, and it wasn't a very good night. She happened to pick up a cold and was coughing a lot. Her oxygen levels were really good, though, so once they delivered the diagnosis of SMA Type I for Olivia, we were allowed to go home on Tuesday.

We were angry, devastated, exhausted. We absolutely did not want to go through all this again. Anger was the first reaction of anyone we told the news to. Our friends and family cried out at the injustice of it.