Once we had three kids it became easier for one of us to take Lexi to appointments and the other to stay home with the boys rather than bringing everyone along. Since I was nursing Chase the logical conclusion was that Daniel would be the one to go with Lexi. This was wonderful for me and also very hard for me to let go of control.
The doctors Lexi has now are amazing. They hear us as her advocates and respect our opinions as her parents. Even so, all of Lexi's appointments and hospital stays come with a huge amount of stress. Being home I felt concerned for her but it was not the same as being stuck in a room with a crying Lexi and having to hear people's different opinions about what was wrong with her. The truth is no one understands what's going on in Lexi's body or brain. Everyone has an opinion and they often contradict one another. It's very subjective. This is probably the reason we go to far less appointments now even though her issues have increased over the years. We have spent so much time and energy trying to find answers for Lexi and make her life easier and for all of that effort we have not achieved very much. No matter what issue we fix more problems that are worse come up.
The difficulty in being away from the appointments was due to the fact that I am better at interrogation. Daniel is a cop and has superhero skills in being aware of his surroundings. Unless he views someone with suspicion though, he tends to respect authorities and trust them. I quickly learned in Lexi's first two years of life that medical professionals are people too and that we can't rely on them to make decisions for our daughter alone. They don't know her and they are often wrong about her. It's up to us as Lexi's parents to weigh their advice with what we know to be true about our daughter and our long term goals for her life. I never take what a doctor says about Lexi as truth without dissecting it and asking lots of questions first. So there were times I was frustrated when Daniel did not have the answers to the questions I had about what the doctors said or suggested.
When Chase was a baby Lexi had two surgeries. She got her tonsils out and had a second hip surgery to put her hips back into socket. Daniel was there at the hospital for both by himself. I was really proud of the way he handled things and did what needed to be done even though it was hard. Up until that point I felt very alone in the weight of making medical decisions for Lexi. Even though I tried to include Daniel he had to work and wasn't able to listen to what the doctors had to say. For the most part he just let me decide. We usually don't know if we have made the right decision until it's over and that is a lot of pressure. Especially when our choices equal physical pain and suffering for a beautiful little girl. That year we became a team in all aspects of Lexi's care and the responsibilities that come with her. Us working together to help our daughter has been the defining strength of our marriage and brought us closer. We bear the burdens of this life together and we celebrate the successes as ours.
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