Paul strengthened our marriage. Our experience is that there are only two types of marriages when you have a handicapped kiddo – strong as iron, or divorced. We know plenty of both. Either you figure out how to make decisions together and function as equals, or one person makes all the decision and resentment grows. There may be other models, but for us, we are equals. (That might be an insult to Kathie now that I think about it).
We faced questions over the phone from the OR that had to be answered right now. Paul was on the table and they found something unexpected. There was no time to have hurt feelings. We had to learn to debate without arguing. We had to appreciate that the other person was advocating a different position to force us to think through our own choice. We learned to go back and ask concise questions. We both learned to admit when the other person was right. Once we made a decision, there was no going back. “I told you so” was strictly forbidden. We decided together and didn’t move ahead until there was consensus. Then it was OUR decision.
One thing we got good at was asking questions. We got frustrated with all the tests they would do on Paul and came up with a series of questions. It went like this – a doctor would say Paul needs such and such a test. We would ask what the possible outcomes were. They would tell us the possible outcomes, usually there were two – A or B. We would as “what would you do if A happens?” and “What would you do if B happens?” A surprisingly large number of times, there was no clear answer, or the answer was the same no matter the test result, so we would not approve the test. Paul had more tests than any one person should have, so if he could avoid an MRI or needle stick, it was worth it.
We did have advice from our medical team, but often not a clear path, and sometimes contradictory. Time for a shunt revision or not? Detethering? Change the seizure meds? Try to remove the trach? All questions we had to figure out and decision to be made, and dozens more, often in a few minutes or hours. We would have two computers searching for definitions of terms we didn’t know. We had friends on the phone and the Pony Girls with their experiences. And the pressure of knowing your kiddo’s well-being was on the line. I think we were pretty good at it. We went against the Neurosurgeon’s advice at least twice, and I still think we made the right call both times.
We had a rule for hospital stays. Neither one of us could stay more than two consecutive nights. We would go a little batty and wouldn’t think straight after 48 consecutive hours in there. So, even if Kathie wanted to stay, she was forced to go home, shower, sleep a while and come back. It made a world of difference in mood and mental clarity. That is what worked for the two of us, and I think it worked for Paul to see some new scenery.
We had a baby monitor set up Paul’s whole life. We needed to hear him breathing at night. He needed to know if he had a sudden headache or back pain, we could figure it out and give him meds or take him in to the ER. Kathie handled most of this night duty, because I was working in the morning, but we learned we have different periods of the night that each of us slept deeply and the other had to be on duty. We had overnight nursing for about a year when Paul was 1, because he had a trach. We couldn’t get enough nurses through the services, so Kathie somehow found some more. Then we had some nights without anyone to help that we muddled through the night somehow.
Through all of these things, and the surgeries, setbacks and victories, together we found a way and we are proud of the life we made for Paul. And the parents that he turned us into. Without the time we had with him, we wouldn’t be what we are today. The rest of our lives are dedicated to making the most of that.