The Child Center

Lexi's stay at the child center was a very stressful time. I knew the necessity of it. With the added awkwardness and weight of her body cast it was not advisable for a 6 month pregnant woman to be lifting her. Even though in a sense I would get a break while she was there, especially at night I saw being away from her as more of heartache than relaxation for myself. I was anxious and obsessive in my instructions to the staff.

The center is a facility for long term care of people under 21 with needs that make them completely dependent on others for their lives. They also have one floor for short term respite and end of life care. It's run like a hospital but it's home for many kids.

Lexi was in a room with 3 other children. Since I haven't asked permission to share I will make up new names for them. Bradley was a boy a couple years older than Lexi, about 4 and he was across from her. His mom was a single mom I had met at a UCP conference a year earlier. He looked very different from the previous time I had seen him. He was obviously struggling. His mom told me that he had gotten pneumonia repeatedly and was in the hospital so often that she was going to lose her job. She had to accept that she could no longer care for him at home. You could see on her face how hard that decision was for her. We went back to visit the center 6 months after Lexi came back home to find that Bradley had passed away.

Two beds down from Lexi was Jordan. He was a black teenager of about 17. He was a big guy and stinky with similar needs as Lexi. I loved him. It was also scary for me to realize how different Lexi's world would be once she was a teenager and no longer a cute little 18 month old girl. Jordan was a ward of the state and no family ever came to visit him but the affection of the staff was obvious. One of the nurses had tears in her eyes when she told me that at 21 he would no longer be able to stay there since the center was only for children. She didn't think it was fair that kids who lived their whole life at the center had to be moved just because they reached adulthood.

Allison was an adorable baby girl a few months younger than Lexi and in the bed next to her. She cried all the time unless someone was paying attention to her. Her and Lexi would often set each other off and they eventually had to be separated into different rooms because they had too much sympathy for one another. Allison arched her back strongly which meant her tummy was most comfortable for her. She would be on her tummy with toys around her crying until someone passing by would stop and say hi. Volunteers spent a lot of time with her because she was cute and obviously adored the attention.

I'm sure the staff at the center thought I was a little crazy because I visited Lexi every day she was there for most of the day. Daniel would stop by in the mornings on his way to work in Portland and most evenings to check on her. I knew that they were caring well for Lexi physically but my concern was that they couldn't meet her emotional needs. I had a hard time giving up control. I didn't trust other people with her even when I was forced to. They did make a few mistakes those 6 weeks that we overreacted to. Looking back I realize our expectations were unreasonable. We make mistakes with her care all the time and they could not provide the level of care we gave Lexi at home which was one on one or two to one. We were not satisfied with anything less.

She did have a wonderful nurse Aaron who would sing to her as he got her ready in the morning. She adored him. I could always tell when he was her nurse because she would be set up in her wheelchair with all her stuffed friends around her when I got there in the morning. Seeing Lexi happy those days helped ease my guilt at not having her home.

My days at the center were not just spent playing and loving on Lexi. When Lexi was sleeping I was often sitting near Allison reading. She liked me near her and would be happy and I hated to hear her cry. There was also a teenage boy that was there for end of life care that latched onto Daniel and I. He did not have the same level of needs as the other kids there and was the only child that could talk. I asked him many questions about what having a feeding tube felt like and I learned a lot from him. His family lived far away and were only able to come a couple times a month to see him. He was incredibly lonely and sometimes I was a little resentful that I couldn't just visit my daughter without his company. He really wanted Daniel and I to play video games with him.

After Lexi came back home I wondered about him. Time passed and we read an article that he had died. I sobbed, remembering that we never made the time to play video games with him. I will always regret that.

For a long time the child center left a bitter taste in my mouth. There are innumerable overwhelming feelings because all the kids there could be my Lexi. It's not what I would want for her life and so it hurts me that it's home for many. I am thankful though that parents have choices. It takes an incredible amount of strength to make some of the decisions we need to for our kids who are fragile. Daniel and I said when we left that Lexi would never go back there but it wouldn't be long before my desperation would lead me to seriously consider it.