Change

As the time neared for Lexi to come home the medical foster home she was at was also going through a transition. The RN and her husband would be moving out of country because her husband was continuing his career in the army. The two sisters that were left were Gayle and Kathy. They sat down with us and told us they had found a house in Estacada and asked what we thought about having them continue to care for Lexi after Daniel got home from the academy. It would be just Lexi and another little girl of about 9 who also had cerebral palsy but could talk and walk with crutches. Her nickname was Moogy and she was a sweet, easy little girl to love. She also went to school all day so there was a lot of time that it would be just Lexi at home.

This was HUGE! Even though there would only be two caregivers now they had already gone through the transition of getting to know Lexi and understood what they were entering into. Also, we would be close enough to go over there if they had concerns. They cared for Lexi well and she was bonding with them. She would smile very big when we would bring her back to their house on Mondays. This was painful for me and happy at the same time. I wanted Lexi to be loved when we were away from her but it also felt wrong to be away from her and need help at all. We decided to split our time halfway through the week. She would spend Daniel's 4 work days with the ladies and his 3 day weekends at home with us.

I still had a lot of guilt feeling like I failed Daniel and Lexi but I also saw this as God's provision for our beautiful girl. I was overwhelmingly thankful. I can't even put into words what having their help did for our family and me. It didn't feel like we were settling for an option that was horrible to us because we had no good choices. We knew we couldn't have asked for a better situation if Lexi had to be away from us. I can't imagine what our family or lives would look like if we didn't have Gayle and Kathy. I'm pretty confident though that I would not have the physical or mental health that I enjoy today.

Mind Shift

As much as we tried not to let the new information from the doctor change the way we saw Lexi it definitely had an impact on many future decisions. Right away she was taken off of seizure medicine. She had an EEG again and although she did many abnormal movements none of them showed as seizures and with the added MRI results we were no longer afraid of more brain damage being done by seizures.

I also had to accept that it was not reasonable to assume that Lexi would grow out of her irritability or sleep through the night. At two and a half Lexi's sleeping was still much like the cycle of a newborn with 2 to 3 hour periods of rest followed by awake times. On the recommendation of another mom with a child with CP we decided to try a medication to help her sleep.

Lexi's future did not look bright with possibilities any longer. There was a good chance she would continue as she was for the rest of her life. This was something that made thinking about what was ahead very difficult. The verse I clung to during that time was 2 Corinthians 4:18 "So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."

MRI

Towards the end of that summer Lexi's neurologist ordered an MRI. We were nervous and excited to see what this test would say about her potential. Our hope was that we would be given some sort of expectations of what her abilities would one day be. We were constantly being asked by friends and family if Lexi would ever walk or talk. The older she got the less we envisioned these to be possibilities but we still held out hope.

The results were far more devastating than we could have imagined. Her neurologist showed us the picture of Lexi's brain. We saw that most of it was missing. All that was there was the brain stem and a little bit of the cerebellum. Her Dr. said it was the worst case of brain damage she had seen in her career. The cells after dying had been absorbed in the body so her head was mostly filled with water. There was only about %10 percent of her brain even there.

The Dr. mentioned her "mental retardation" as she talked about the results. I remember hating that because I saw Lexi as intelligent. Daniel and I struggled to process this new information.

Once again we were faced with what a test told us about our daughter and what we saw with our own eyes. Her neurologist could not account for all that Lexi was able to do. Her results showed that Lexi should have been blind, deaf, and completely unaware of her surroundings. She was missing all of those parts of her brain. Somehow though what was left was taking over tasks of the part that was lost in incredible ways.

We realized that EVERYTHING Lexi does is a gift. Her smiles are a gift. Her laughter is a gift. Her connection with certain people and special bond with her daddy is a gift. Her ability to dream when she sleeps. Her memory. Her fears and anxieties. Her almost perfect vision and hearing. All gifts. The fact that her head has grown normally and is not misshapen is a gift. Her ability to make choices and understand what we say is a gift.

I know there is even more to Lexi than we can see. I'm still confident there is intelligence in her eyes at times when she is fully present with us. I think she is the most beautiful person I have ever known. She loves purely and fully.

It was clear that this test was unable to give us the easy answers we were looking for. We had to wait on Lexi to show us what she could do. We understood more than ever that Lexi is truly a miracle!

Freedom!

The summer that Daniel and Lexi were away was honestly one of the best seasons of my life. I had never lived on my own before getting married so for the first time I could do what I wanted without having to consider someone else. Caden was happy to go everywhere with me. We went to the river with friends and for lots of walks and most days we would go visit Lexi in Portland for a couple hours. I felt free and happy again.

Lexi was doing well and there were no big concerns with her transition to being away from us. I kept short accounts with her caregivers. It was a huge relief to me to be part of a team of people taking care of Lexi rather than all the responsibility resting on my shoulders. We would brainstorm together about concerns that came up and how to address them. I didn't always like other people having opinions about my daughter but overall I was thankful.

I began to loosen up. Gayle and Kathy joke with me now about how uptight I was during that time. I was learning how to enjoy my daughter again and learning how to trust other people with her.

Caden began to act out behaviorally like a regular child. I knew this was healthy and good for him. Our home had been so stressful that even as a little baby he compensated by not making waves, by being perfect. Even now, when things get hard Caden copes by becoming too responsible. Everyone thinks it's so sweet how helpful he is and my heart hurts. I worry about Caden when he doesn't have an emotional meltdown every so often, especially after a hospital stay or extended illness for Lexi. He is very mature emotionally and overall joyful but he is still a little boy.

Daniel loved the academy! He made lifelong friends and it was a good break for him. Our weekends all together were happy and it was an exciting time for our family.

Options

As bad as things were at home I was more fearful for Lexi to live somewhere else and what that would mean for her. The child center was not what we wanted for her and I pictured horrors with a medical foster home. This had stopped me from seeking help earlier. I was also afraid of being judged because I knew that people would think I was a bad mom. I worried that Daniel would regret marrying me because I was weak and not able to handle my life. He loved Lexi so much and I knew it hurt him to think of her not being with us.

I spoke with Lexi's caseworker about our options and we had tentatively decided that Lexi would go back to the child center for three months of respite. This was the only reasonable option with her needs. We also had specific things we wanted for Lexi. One is that she would never be left alone with a man. The rate of sexual abuse for girls with disabilities it's obscenely high. The other is that she wouldn't be alone all day with any one person. I loved Lexi the most and I could not handle being alone with her while she screamed for hours so I definitely did not trust a stranger with her. We also wanted to be able to visit at anytime without calling ahead. This obviously made our options very limited.

Our disability caseworker asked me to be open to a specific medical foster home that was run by 4 people. There was an RN and her husband along with her mom who was a CNA and her aunt. This was a unique house in that they took turns and always had two people on at one time. They also agreed that we could visit at any time during the day.

As soon as we went to their house and met them Daniel and I were both confident that it was the right place for Lexi while he was at the academy. We started the process. I wrote out pages of instructions on Lexi's care and routine. Daniel and I would still be Lexi's legal guardians and responsible for all her medical decisions and appointments. Her caseworker made it clear that we could get her at any time for a visit or for good. We arranged to bring her home every weekend when Daniel came home. Once we had a plan in place I alternated between feeling afraid and relieved.

Back In The Depths

Having a typical baby gave us a taste of what our life could have been and made us realize how different we were from other families. We still had times of joy and lots of love but we would always have sickness, medical emergencies, and screaming as a part of our reality. Our stresses affected our decisions of what we could do and how we could enjoy our time together.

I was becoming increasingly hopeless about Lexi's irritability. It's very common for babies with brain damage to cry a lot but most of my friends kids with CP calmed as they got older. This was not the case for Lexi. Her reflux was doing much better which took about 10 percent of the screaming away but she still required constant attention. When I was alone with her and Caden I wasn't able to keep her happy.

In the mornings when I would nurse Caden I used to jiggle her legs with my foot. Sometimes that kept her from getting worked up. It never lasted though. As the day went on Lexi would become increasingly agitated and start screaming. I remember several times going out to the car to nurse Caden in peace where I couldn't hear her. I knew that she had sensory overload and there were reasons why she screamed all the time but It was getting more difficult to be sympathetic. My whole life was wrapped up in if I could calm Lexi, something I daily failed at. Daniel would get home and I would leave with Caden to go for a walk or just get out of the house. I was desperate to be away.

I started to resent how hard Lexi made my life. It was a struggle to enjoy my little girl. Before Caden I felt like a total failure as a mom but with how easy he was I started to see the problem as Lexi. Daniel knew I was overwhelmed and we started talking about him staying home with the kids and me going to work.

I had spent 2 and a half years listening to Lexi scream for hours a day, powerless to help her, usually by myself with her. I was at my limit, spirit exhausted. My thoughts were getting darker. I thought it was a mistake saving her life when we first came home from the hospital. She seemed miserable so often. One day I was driving home from an appointment with her screaming and had a thought that I should just drive the car off a cliff and end the tragedy that was our family. 

I started getting angry with Lexi during her screaming binges. Sometimes I would yell back. Then I would sob uncontrollably, feeling huge guilt for yelling at my disabled little girl. There was a slow progression of lacking self control in my thoughts and actions. I have seen sin work this way in myself and others many times and it never fails to scare me. Continuing on that path leads you to places you've always despised.

When Lexi was about 6 months old I called the hospital when she had been crying for hours, trying to get some ideas to calm her. I remember the nurse saying, "If you think you are going to hurt your child you need to get help." I was frustrated with the nurse because I felt like she wasn't hearing me. At the time I couldn't even imagine that I could ever be to a point where I feared I would hurt my baby. Two years later I was at that place.

I definitely think I would have gotten to the end of myself eventually even without having other kids. Lexi required more from me than I could give. The postpartum hormonal imbalance pushed things along because it made everything more intense and I felt fragile enough to take drastic measures so that things would not continue as they were.

I started seeing a Christian therapist informally. She was semi retired working out of her home and I just paid her out of pocket. I'm not sure if this helped me. It was good to share with someone but I feared exposure and held back with her. She was passive and listened way more than she offered any helpful advice or knowledge.

The only person I was honest with during that time was Daniel and it took a while for me to get to that place. For the first time in my Christian life I was hiding who I was because I was ashamed and embarrassed. I withdrew into myself and felt far away from the Lord and the people around me.

That was an incredibly lonely place to be. When Lexi was born we had a lot of help and support from our friends, family and church. After our initial trauma everyone else went back to their own lives and Daniel and I were the only ones left in the dark. My family was out of the picture and our church was falling apart. All of the doctors we saw didn't seem to have any clue when it came to Lexi. There was no one to save us. I felt trapped in a life I hated.

Around this time Daniel got a job with the Portland Police Bureau. It was his dream job that he had been working towards for several years. Even though he would take a big pay cut for the first year the benefits were amazing and we knew it was the right direction for our family. He was excited but also nervous because he would have to spend 3 months at the police academy, only coming home on weekends. Neither of us knew how I would manage on my own. It was one of the most painful conversations of my life to tell Daniel that we needed to find somewhere for Lexi to go during that time because I could not take care of her.