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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Tuesday, September 23, 2014

Could you do me a favor and be more like a car, please?

A week or two, I started to worry a little bit about my car. There wasn't anything particularly alarming going on while I was driving it, but it just felt a little off. I talked myself out of worrying by rationalizing the weird things that happened. I got used to some of them and started to feel like they were normal. I told myself that others were probably because of rain or that we were getting close to needing an oil change (and close to 100,000 miles), but really, I knew something was going on with it.

Over the weekend, the check engine light came on. It happened when I was coming out of the drive-thru at Chick-fil-a, after getting Raya some fries to eat at her friend's birthday party so that she wouldn't be sad when everyone else was eating pizza. I took my foot off of the brake and put it on the gas pedal and started to accelerate around a corner, and it acted strange and the engine light came on. From that point on, I'd put my foot on the gas to accelerate and we accelerated in very slow motion. When I got home, I called our wonderful mechanic and explained the problems to him. He gave me his theory about what the problem may have been, and we arranged a time to drop the car off to him.

The first thing he did when he started working on the car yesterday was "pull the codes". He connected a device to my car's computer and it gave him the codes for what had triggered the engine light. Based on those codes and what I had described to him, he knew exactly what was wrong with my car. He changed the 2 sensors that were not working properly, replaced the spark plugs, serviced the cooling system, changed the radiator hoses, and changed the oil. He is also awesome enough that he finished it all in one day and we were able to pick the car up last night. (yay for having my independence back!) It's running beautifully now.

When he called me yesterday to go over what he had found, I couldn't help but think that life would be so much easier if kids could be more like cars. When something is wrong or they're not feeling well, a light would come on and an alarm bell would ding. You'd plug in a little device and pull their codes, which would tell you what triggered the alarm, so you'd know exactly what was wrong. Then you could look in the owner's manual to see exactly how to fix the problems. (where is that blasted owner's manual anyway...) Buuuuuuuuut........

Kids aren't cars. Darn. There is nothing precise or exact about diagnosing or treating a medically complex child. If there is one thing that I wish I could have fully understood from the beginning of our journey with Raya, that would be it. I wish I could have understood, and I mean REALLY internalized, that it was going to be a long, arduous process. (loooooooooooong) I wish I could have understood that no amount of testing or trial and error would guarantee that we would ever have the answers we were looking for, and that with or without answers, there was no guarantee of "normal" ever being in our future.

I suppose if someone had tried to explain that to me in the beginning, I would have been angry at them for trying to squash my hope. That's not my objective here at all, and I hope that all parents whose children have feeding struggles, need feeding tubes, or have any type of medical struggles will never let go of the hope and belief that things will get better! My point is that if I had understood that this was going to be a long-term process over the course of several years, my outlook and expectations would have been different right from the beginning and I would have set my priorities accordingly. In the beginning, I thought that I knew where we were headed with this journey, but I now understand that the place I thought we were going may not be where we actually end up.

In the beginning, I thought that getting Raya to eat by mouth was the most important thing and that our ultimate goal was to get her off of the feeding tube. If I had known that there was a strong likelihood that it would take years rather than months to get her to a point of optimal health, I would have stopped stressing over getting her to eat and spent more time figuring out how to help her to not feel crappy. The reality is that those things will never peacefully coexist, so until one of them changes, the other never will. Obviously, I can't go back and change anything, but I am looking at things through a completely different lens than I did even a year or two ago. I think the biggest factor in that change within myself is acceptance. Acceptance makes it possible for me to let go of so many of the negative emotions that don't bring us any closer to positive changes in Raya's health.

I still have great hope and a strong belief that we will reach a point where we can remove the feeding tube, but the feeding tube is not the problem here, and it never has been. Yes, it can be a crutch and an enabler, but it is not the cause of her feeding difficulties. The tube is what has made it possible for her to survive and thrive while we have worked to figure out what was causing her pain & discomfort and how to help her feel good. If I could go back and try to help my 4 years ago self understand any one thing about tube feeding, that is what it would be. Until a child feels good and can eat safely (meaning no aspirating, no choking, no difficulty swallowing, no vomiting, no allergic or autoimmune reactions, no dumping, no diarrhea, no pain, no fear, etc.), there is no sense in stressing over when the tube can come out. That doesn't mean it never will, it just means there are a lot of things to work on first in order to get close enough to make tube removal the priority. We WILL get there, but it will happen when Raya's body and mind are in the right place for that to happen, and not on anyone else's time frame.

{Thank goodness cars are less complicated than children. }

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