You can’t handle this.
This is another disease that could end his life.
This can’t be happening.
What if he dies in his sleep?
What if he doesn’t wake up? What if he falls off his bed, I don’t hear it and he goes in to shock? What if I don’t know how to help him? What if I’m not capable? No, I’m not capable. I can’t do this. This is too hard. I’m not strong enough for this. Why does everyone think I’m strong? I’m not strong. I’m weak. My body is tired. It’s probably because I’m sick. I’m probably dying of an undiagnosed disease. Cancer. Heart attack. Stroke.
I’m tired, but I can’t sleep. My mind is on another sprint through every dark scenario that could maybe happen. As I lay there wide awake, I cannot turn off my brain. The only thing in my mind is how to get through another day of handling a chronic illness I cannot control. How do I manage to care for a child who is chronically ill when I have generalized anxiety? Even though I’m on prescription drugs for anxiety, I still have panic attacks. My heart will race so fast, I feel like it will explode. My appetite will be completely gone. I can go days without even thinking about eating. There have been points in my life where I have lost more than 20 pounds in a matter of months due to high anxiety.
At its peak, I could do days without more than two to three hours of sleep a day. In my experience, doctors often want to medicate with sleeping medication only. They don’t always tell you how much of a zombie you might feel like the next day. They don’t always tell you that you will feel so foggy, you may not remember the first few hours of your day. Instead of sleeping pills, I just opt to try to sleep on my own. It’s horrible. Most days I feel like I’m debilitated in exhaustion. When I do finally drift off to sleep, my son will wake up from a night terror, discomfort from his feeding tube, or be scared because his night light is out. Somehow you get use to not sleeping, or at least, not sleeping well. Even though each and every day, I feel physically exhausted, I keep on moving. The truth is, there is no other choice. There is no one else to care for my son. There is no one else I want to care for him, and with his debilitating disease, I have yet to find a balance of caring for myself and caring for him.
When I’m surrounded in a crowd, I am easily seen as a bubbly, extremely happy person. Yet, at the end of the day, I’m drained and incomplete. My brain is buzzing thinking about what I said or if I said something inappropriate due to my anxiety. I analyze and critique everything and consistently worry and panic that I’ve somehow upset someone or I’ve made an enemy. More than 99.9 percent of the time, none of this has actually occurred. I have learned to train my mind to know it’s just the paranoia of anxiety. It’s just what happens to people who are anxious. When the anxiety gets too loud, I have to tell it shut up. Or I wait quietly for my fears to be refuted.
There are days I wonder if I will ever feel OK. Will the anxiety that rips through my mind ever stop? Will the panic I feel subside, and will I be able to just breathe? Medication can only dull the noise that goes on in my brain. It never totally goes away. Therapists teach self-talk, and they teach you to reel it in. Yet on the worst days, nothing is actually able to reel it in. When anxiety takes hold, it’s like I’m stuck on a ship I desperately want to get off, but I’m stuck at sea. The waves are rocking back and forth. I feel sick to my stomach, but I know vomiting will do nothing to ease the pain of what I feel. I close my eyes to make it stop. All I want to do is sleep, and yet my mind continues to race. I slowly drift to sleep, but it only lasts moments.
I know many of us in our community experience anxiety and depression. I know so many other parents who are suffocated by fear. They can’t seem to move forward because the reality of what they are facing is hard to bear. The only thing I can do is continue to lean on God. I need to try to find comfort that he will take care of me. I need to trust he will take care of my son. I need to give my fears to God. Each night I quietly pray for him to guide me, watch over my son and help me manage another day. He is my strength. He is my backbone. He is the feet that carry me when I am too weak to move. I pray each and every day that one day I will feel less anxious, and as I pray, I feel more and more calm. One day I know he will carry all of these fears. One day I will feel peace. One day my son and I will both be whole.
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