The other day, my sister pointed out that people are so focused on Jace’s death, that I don’t want them to forget how he lived. How he was a miracle. How he changed us. She’s right. Some of you don’t know much about him. You deserve to know him. I’m going to try and write 3-4 posts about his life. What a short biography. He deserved more. This is only my version – we could probably have the four gospels of Jace written by me, my sister, my mom, and my dad. That was not meant in a heretical way :)
The first time I saw Jace was in the PICU. Sadly, the last time I saw Jace was also in the PICU. That first day in December of 07, I walked into his room, looked at him, then looked into my sister’s hopeful and expecting eyes and said, “He’s kind of ugly.”
Jace had been in the hospital since being born at 25 weeks. My sister and I had talked about fostering, but could never agree on it at the same time. Finally, she wanted to bring home Jace. S he told me that if we didn’t take him he was going to a nursing home for kids, and that he would only get worse there. I kind of didn’t want to, because I was scared, but I said ok. When he came home at just over six months old, he was on about 14 medications, had to eat through a feeding tube every few hours, have breathing treatments every four hours, was on oxygen, and we had to use this scary loud sucking machine to get any boogers out of his nose. It seemed like he went to at least one appointment every day.
I guess his mom had problems with addictions. Am I glad she struggled? No. Am I grateful she gave us the opportunity to know her son? Yes. She created a miracle. She must have a lot of goodness inside of her to have made something so wonderful.
The first night we had Jace at home, I worried about what we had gotten ourselves into. I have never been so great with babies. I’m kind of scared of breaking them. Kids – I’m magical with kids, but babies freak me out. My mom and sister brought him in with all his machines and tubes. He seemed so fragile. Almost like it would be difficult to really hold him with all the cords and things attached to him.
When it was time for bed that night, his alarm kept going off. Leslie, my sister, kept turning up his oxygen that needed to be in the high 90’s, but it kept going down. 88, 85, 82, 79. She started to freak out. She was on the phone with the Doctor. He told her to go to the pharmacy and get something. So she left me home, alone, holding a sick baby who was barely breathing. I started sobbing and thought he would die right there in my arms.
Christmas was a week later, and he was the best gift ever.
It seems like I can barely even remember those early days. I’m pretty sure they were hard. There were times I thought we couldn’t handle it. My sister was working with sick babies at work and then coming home and doing the same thing. I was working a stressful job, and then every weekend, while my sister worked, I was home alone with Jace, and it exhausted me. When my sister went to work during the week, she would get up at 5 a.m. and lug all his machines and oxygen and equipment across town to our parent’s house for them to babysit. I wanted so badly for him to get better. When he first came home, he would only kind of stare up at the ceiling. We had to block his eyes with our hands to get him to look down at us. He was so used to being in the hospital, he didn’t know how to be part of a family.
I was scared his feeding button would fall out, or that he’d stop breathing and the alarm wouldn’t wake me up. I was worried he would have problems his entire life. Doctors sent my sister to get Jace a million tests. They said his lungs were the worst they’d ever seen. One time when the oxygen monitor broke, we had to stay up all night watching him to make sure he was still breathing. They sent him for scans to see if his brain was messed up. They sent us for tests to see if his heart was messed up. They sent us for tests to see if – I don’t know, but he went to the doctor a lot.
It was hard, and it was scary. But the most amazing things started happening. My sister became a new person. She lived to make him better. And he got better. I don’t want to give away the end of the story, but if you could have heard what the Doctors told us Jace would be like, compared to what he became, you would be so proud of her and of Jace. My mom was so happy to be a grandma. I was ticked off that my sister was officially the favorite again for providing them with a grandson. My dad, who doesn’t get excited about anything, was excited to see Jace everyday when he got home from work. The times were hard, but there were more smiles and more kisses and more good feelings than ever before.
I remember the physical therapists told us not to let Jace stand up – that he had to crawl first and he was working on the wrong muscles, but he loved to bounce on his legs while we held him. It was so cute and so hard not to let him. I remember the first time we put him in an exer-saucer. He looked at us with a look that said, “Is this some sort of joke?” I remember the nights that I would rock him to sleep, because I was the baby whisperer. I remember fighting with Leslie over who had to do the 4 a.m. breathing treatment and sometimes pretending like I forgot she was working the next day so I wouldn’t have to do it.
I remember the times he wouldn’t stop crying, so we would sing to him, and it would seem like it was working, but then it didn’t. I remember dreading having to go anywhere, because it was so much work to take the oxygen and monitor and everything places. I remember how we didn’t leave the house with him for about six months except to go to doctor’s appointments, because if he got any kind of sick, it could be deadly for him. I remember when my sister was discussing adoption, and I thought – if she doesn’t adopt him – I will, because there is no way we can lose him now.
I regret that I can’t remember more.
When I do therapy with kids who have been through a major trauma, I always tell them – in some ways this incident will define who you are. You have a choice now. You can take what happened to you and let it make you a better person or you can let it make you a worse person. You have to pick which path you are going to go down. I have always been kind of proud of myself for picking the path of being a better person after I got shot. I’m pretty sure Jace was wise beyond his years, because he had a traumatic birth. It could have ruined him, but he picked the better path. He let it make him a better person. He was growing into someone amazing and kind and funny. According to the doctors he shouldn’t have had a chance to be any of those things. I’m so grateful that they were wrong.
Oh, and by age 1, he’d grown completely out of his ugly stage – PTL.