You may have noticed that I didn’t post my usual style/fashion post yesterday. That was because I was at the hospital most of the day with my youngest daughter. She was having an endoscopy to check the status of her disease. She has a condition called Eosinophilic Esophagitis (EOE). Basically, certain foods trigger an allergic response in her esophagus that causes a buildup of eosinophils (white blood cells). This build up can cause irreversible damage to her esophagus, which can lead to pain, choking, vomiting, and a number of other issues. You can read more in depth about her journey here. Anyway, she has had to have at least one endoscopy each year since she was 4 years old as it is the only way to know how her medicines are working and if she can tolerate certain foods. Every time she has to get one of these done, it is hard but it is a normal part of her life. My husband was able to come with us yesterday for the first time ever. Seeing his reaction to the whole thing, made me realize that I have become desensitized to these procedures. I thought that my daughter had too as she is typically calm, cool, and collected on these days telling the nurses what to do. Yesterday was different for her, though. I don’t know if it was because her dad was there for the first time or that she is older and more aware of what is happening or what. She was more nervous yesterday than I have ever seen her. She wouldn’t talk to the nurses or doctors and she was very combative with me, which is a typical symptom of her anxiety. I know that there are kids who suffer through way more than what we have to deal with. I know that we are lucky because it could be so much worse. However, no child should ever have to suffer through this being their norm. It’s not fair.
For the past several years, her EOE has been in what they call remission. It has been controlled by her medications and diet. We expected yesterday to be the same because she hasn’t experienced any symptoms. However, that was not the case. The doctor saw what she believed to be evidence of the disease in the lower part of my daughter’s esophagus. We won’t know for sure until the biopsies come back, but I have a feeling I already know what it will say. The doctor also found “white spots” in her small intestines, which could mean multiple things or nothing at all. Of course my mind immediately went to all the what-ifs and worrying about what all of it could mean. It’s scary. I thought that worrying about her growth and the eating disorder that came as a result of this disease was hard enough. Those things could get even worse based on the results of the biopsies. I immediately jumped to the worse case scenario. I am thankful that my husband is able to keep a level head about this and encourages me not to go there, but it is really hard not to. It is like the hits just keep on coming with this kid. She just can’t seem to catch a break, and it breaks my heart for her.
Now that I have had a little time to reflect after the initial blow yesterday, I know that I just have to pray and give it all to God. He created her this way and he has a plan for her. We may not know what that plan is or even understand it, but I know that he is holding her in his arms. While my brain still tries to go to all the bad, I have to keep reminding myself that God is in control. She may be the smallest kid her age, but she is one of the strongest (and strong-willed) kids I know. No matter what the future holds for her, she will overcome it because she is beautiful, brave, courageous, and so much more. She is more than this disease. It doesn’t define her. It just makes her story a little more interesting. This may be another bump in the long road that we have been stuck on, but we will not let it defeat us. One day there will be a fork in that road, and we will be able to move to a new path. It will be a good path, a path that is full of happiness and good health. No matter what bumps lie ahead or how many mountains we have to climb, we will never give up. We will keep climbing with grace. We will NOT be defeated.