Part IV-The Conclusion

It is now Monday. Thankfully, Mother’s Day has passed. The transfusion that was performed Sunday evening (Mother’s Day) is the turning point for the MRSA pneumonia. It stabilized the blood pressure although he was still considered a bad stable. Over the next few days things begin to improve. The vent settings are reduced, two of the three antibiotics run their course. The ventilator was a major concern up to this point since Dear Son is not very mobile normally. Because of this, I am told that it makes getting off the ventilator more difficult. Dear Son eventually gets off the ventilator and is moved out of the PICU to a Pediatrics floor for a week and is finally released to go home. Today, he remains on g tube feedings five times a day, respiratory therapy four times a day, chest PT four times a day, his seizure meds four times a day and other than that seems quite happy. He is still not able to eat or drink at all. I miss cooking his favorite meals and somehow it’s not quite the same. I am told the recovery is two to three months.

In the end, I am thankful that he recovered. I wonder how many more of these emergencies he will have and how many more he can endure and how many more I can endure. They change you after a while. The little things that may have irritated me ten years ago, are not a big deal. I have a hard time not rolling my eyes when people complain about little things. I’d often like to tell them to quit complaining but I don’t because I realize that their life is “normal”.

It changes you too because it gets harder and harder to define a true emergency. When you’ve been through the big stuff, the little stuff seems so minor, that you wonder if you should even call. I often use the analogy that it’s like having a fire in your house every day-at what point does the fire get big enough that you need to call the fire department? For other people, any fire in their house will elicit a call to the fire department.

Having all of these emergencies prepares you oddly enough. I have an up to date emergency information sheet, a car bag packed at all times for emergencies on the road, a things to take to the hospital list, etc, etc. But I am never prepared for a funeral.

Sometimes people tell me, “How do you do it?” or “You seem to be handling it well.” I do handle it pretty well but then I’ll crash after the crisis has peaked. When the crisis began, I was far more stressed when they weren’t getting results at the local hospital. I can easily see the difference in the level of medical care at each facility. I was relieved when the Air Team arrived. I was concerned when he was comatose and unresponsive on the ventilator. I was panicked when they tested the power at the hospital when Dear Son was on the ventilator and didn’t bother to tell the parents. But none of it compared to the depths of depression I felt when the doc said Dear Son was lucky to be alive. It’s when the crisis has passed that the depression get very deep. You do come out of them quickly but for a few days, I am extremely depressed. It’s that you feel like you’ve just dodged a bullet and then someone says, “Wow, that was close.” You never forget how close it was.

I realize too that one of these days, I am not going to be so lucky. One of the things I miss the most, is working full time and having a career. These last few years have been bittersweet. While I love taking care of Dear Son, I desperately miss having a career. When Dear Son passes, I will be able to resume my career, only to come home to an empty house and realize that the good times were when Dear Son was alive, not coming home to an empty house.

And then there are the issues of when is it all enough? When do you stop trying to save him and when do you let him go? These are the kinds of discussions that people have with their heads. People will debate these issues often but when you are in the situation and have to make a decision, I find I follow my heart. When you are in the trenches, it’s pretty hard to let them go. You don’t care for them twenty four hours a day and then let it all go so easily. I pray often that I’ll never have to make the decision to “let” Dear Son go.

And finally, there are always those who feel that we shouldn’t save these kids. That somehow, because they are severely disabled, that their lives are less or that they are worth less than other lives. I go to my son’s school and I really look at these children. They are happy. They live every day from the heart. It is more often than not, our paradigm that we live in and because they don’t fit, we think their lives are less. That’s not true. Their lives are harder, because we haven’t figured out a way as a society to make them easier, but their lives are not any less valuable. I think Becca summed it up best the other day on a comment she made on Neonatal Doc’s site when she made a profound distinction between support needs (and the severity of disability) with quality of life. She said, “Quality of life is about being loved, valued, cared for and comfortable. How well your body works and what help you need doesn’t factor into it…unless that help is withdrawn or limited in some way.” And for Dear Son, he is loved, valued, cared for, comfortable and happy. That is the best ending. As Jack Nicholson said in the movie, “It’s as good as it gets.”