We all have them as special needs parents. We can't avoid them. A crisis. I'm not talking about our everyday chaos that we endure but the abnormal disruption. Recently I have been dealing with my youngest not wanting to go to the bathroom. This is a difference between being constipated and refusing to go. She is actually quite anxious about it. We have to do certain things as humans. That would be one of them. Of course being the person that she is, has no understanding of that. All she knows is that she is terrified of the function. That has put a stop to that. Let me explain something to you about anxiety.
Anxiety in a normal amount will cause a person to hesitate. We will become fearful of a certain task. Perhaps it is speaking in front of a large group of people. Maybe meeting a special person for the first time. You are really nervous. Sometimes you might cancel. You might feel bad about it but facing the said event was too much. Most of us are able to push through this emotion and deal with the fear. Some of us, like me have very little of it. Irony, I'm writing about it come to think of it. Then there are those who are stuck in it. It grabs a hold of them with an iron grip. The thought of completing the task is far greater than the pain of where they are at; which is completely stuck. My daughter has a mood disorder so any emotion is experienced at a greater capacity than I could possibly fathom. That would also include anxiety. So begins the process of why she is stuck.
Leah has always had issues in this area. We have had her in to GI specialists. She is also on routine medicine to keep things easier for her. She is a very selective eater. We try and get as much fiber in her diet as we can. We also have fiber supplements that we have added. We have consulted her therapist about her anxiety on the issue. However, in December we hit a road block. She absolutely decided she was done going to the bathroom. In the weeks that followed we tried multiple things that would help. That should have helped a normal person. However, Leah was not going to go. I went to the clinic and explained rather thoroughly, I thought, what was happening. They tried to explain to Leah that she needed to go to the bathroom. That was no help. Then I went to the ER. At this point Leah is vomiting because it has to go somewhere. Her appetite has decreased. She is extremely moody as you can imagine. I had said the same thing in the ER. They took an X-Ray. She doesn't have a blockage so she should be able to go on her own. How frustrating. She isn't going on her own that was the point. She at this point was missing multiple days of school because she was throwing up. She was sick. I couldn't get help. I had a very anxious husband. I was consumed myself trying to will her to just go to the bathroom. I finally was able to get an emergency appointment at our specialty hospital here in the area. We were still trying different methods at home to no avail. When we went in someone finally understood what I was saying. Knew my problem. They admitted Leah to the hospital a couple of days later for a flush. It was a new thing they do. Instead of an enema they use a tube in the nose that goes in the stomach. Same results I will tell you that.
We went into the hospital. I was hoping that this would help her anxiety once she realized that it getting unstuck is better. When we found out that she was very close to extreme danger I was angry. She was close to getting in a very sick situation. I went in several times for help and did not get it. I was very lucky that we had a specialized hospital in the area who was willing to do what needed to be done. She was in the hospital for nearly 3 days. It was hard to watch her fight at first. Then the anxiety slowly melt from her. She was able to go on her own. We left the hospital with a hope that our crisis was over. We didn't realize that we were still in the middle of it.
We had a couple of weeks of happiness. It was nice. We were enjoying the holidays. We had to recover from the episode that we experienced. I also had to catch up on a lot of things that were left undone because of concentrating on the crisis. My husband was back to his old self. He was really stressed due to not knowing how to help. I realized I missed him because it felt like we were going in opposite directions. We have different ways we deal with stress. If I am honest with myself, I run ragged. I try everything I can to fix. There was no way I could fix this on my own. My husband usually goes inside himself a bit. Then Leah starts throwing up.
Leah also deals with cyclic vomiting syndrome. She has had this since she was about 3. We thought it was stomach flu at first. It turns out that she starts throwing up and can't stop. Now it is a little bit under control. She will just throw up in the morning and be fine. We give her medicine to help with it. She starting throwing up every morning for a week. This was concerning. She missed a day of school again. Appetite down again. Then she was back to not going to the bathroom. We were not terribly concerned about that. She was throwing up. However, it was days later and knew that she needed to go. We went to the ER again for the vomiting. We were concerned about dehydration at this point. She was given the same medicine we have at home. She was sent home. I'm really frustrated at this point. The ER nurse calls the next day. I don't miss a beat. I said yeah she is still vomiting but I got the medicine here so I guess. I was snappish I'm not going to lie. I am not usually like that but I was so done. She is vomiting and not going to the bathroom. I knew if on Sunday she vomiting she needed fluids and nobody was going to stop her from getting them. I. Had. It. The cycle had broke though so I was thankful for that. I was hoping along with that she would able to go to the bathroom. It wasn't in the cards for me though. We went another long half a week struggling to try methods at home. I called it in and by Friday we were in the hospital again.
The emotional roller coaster I found myself finally came to a down hill crash. I was in the hospital on the second day. I was fine. I called my husband and asked to have him bring Sharon to see me. I don't go without seeing my children you see. EVER. I only had one time where I spent 3 days away and that was it. However, the weather is bad. Our other car is not good. He decided it wasn't a good idea to venture the 30 minutes to the hospital. I cried. I never cry. I was very distraught. He knew that I don't do very good if I don't see Sharon. We had Facetime later but I was anxious for my Sharon hugs. The hospital visit was very intensive. We had to get IV fluids because she was dehydrated. They were stuck on the flush dial because she would throw up any higher. It was a long process. Even though she was not as serious as last time it took just as long. We finally get home nearly 3 days later.
I don't know if we are still in a mode of this crisis. I do know that I have to trust that eventually we will overcome it. I trust in the mist of it that we are to learn from it. I am a faithful person. I believe that God is here through all of it. Leading the way to a better understanding of my daughter. I know I don't have all the answers. I have more appointments this week. We have a lot to figure out. We have our ups. We have our downs. Then we have this.
I have updated people on social media about going to the hospital. It might of seemed all of a sudden maybe. Drastic perhaps. However, in a special needs household there is a lot of inner workings that happen before these measures happen. I did a lot of things before eventually succumbing to the fact that I needed to take Leah to the hospital. The second trip was fool me once shame on you, fool me twice shame on me type of thing. I don't chance her health. Especially when you already have the outcome laid out in front of you.
In a household like mine we need to be prepared. Many other families out there like mine. Learning a language that no one speaks except your child. We go through things like sensing when seizures are going to happen. When we are close to a mental break down. When it is the absolute best time to leave a public place before things implode. It takes a lot of practice. However, over time we become experts. We don't do it because we are paid. We do it because there isn't a choice for us. We do it because our love ones depend on us for their needs. We are their protectors, advocates, caregivers and parents. What do we get in return? Absolutely everything that is valuable in this world. ~Kandi
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