Do moms of children with severe medical challenges have PTSD? Is it really PTSD or just anxiety and fear? I’m not sure but we do experience extreme anxiety or fear over seemingly small things. You know the saying, “Is it paranoia if they are really out to get you?” Well if you have a child (or adult child) with severe medical needs, the threat to them is always real and lingering. It makes us completely fall apart inside over a slight fever, or see serious danger behind every rash.
For me, with a son who has brain damage and complex epilepsy resulting in frequent seizures, the fear is very real and much more common that I let on. You know that fear you experience when you have a new infant and they over sleep or are just really quiet and you need to check to make sure they are still breathing? Imagine still feeling that fear when when your son is 22. Imagine, every time your son sleeps in, feeling deep terror in the pit of your stomach that you’re going to go into his room and find him not breathing. Imagine hearing someone yawn, or a chair move and thinking it’s your son starting a seizure. Imagine becoming breathless every time you realize you haven’t physically seen your 22 year old son for 15 minutes and can’t hear him because your natural instinct is to assume that he has had a seizure and hit his head. How do you stop feeling that fear when you know that there is a high probability that these things could be true, if not today then some day?
If you know me well, you may think I’m somehow above all of that. You may think that I don’t experience heart stopping fear over my son’s health . If so, you would be wrong. As a mom of a son with severe medical challenges, I have worked hard to appear calm even when I’m anxious. (See my post on How to Appear Calm in any Situation) I am committed to helping my son have as “normal” and happy a life as he can so I keep my fear and worry to myself.
I don’t panic over every seizure. In fact, I can take most of my son’s seizures in stride, even when he has them in the middle of the grocery store or at church. My son is practically unbreakable. He has never broken a bone (except his nose) even after having literally thousands of very violent seizures in his life. He often has major seizures and then goes to jump on the trampoline just hours later. This has happened too many times for me to doubt that he is tougher than his seizures. The seizures are not what scares me.
Well, to be honest, it wouldn’t exactly be true to say that his seizures don’t ever scare me. Most of his seizures don’t, but every once in a while, his seizures are different and that scares me. The difference is always subtle and not always I can describe even to a doctor or my husband. Sometimes the really violent part just lasts a little bit longer. Sometimes there is something different in his face. Whatever the difference is, those scare me. I know a lot about my son’s seizures and I know that, in the past, different has meant life threatening. It has only happened a couple of times, but that is enough for me to have a surge of panic when I see something different in my son’s seizures.
Most of the time, when I can see my son, I am not afraid. If I can see the seizure, I know it will be ok. But, if I don’t see it, if I’m taking a shower or organizing my closet, or outside working on the yard, any number of scary possibilities come to my mind. Honestly, I can’t even put words to my biggest fears because they are that scary to me. He often falls during seizures, he could be seriously hurt from a fall. He can aspirate food or liquids into his lungs if he is eating or drinking while he has a seizure. (This has happened many times and it is ok if I know and get him treated but if I don’t know…) Then there is Sudden Unexpected Death in Epilepsy. It is very rare even for the worst cases of epilepsy but my son has every risk factor for it. It’s like SIDS for babies and could happen at any time. It probably won’t, but the possibility is just enough to keep me on panic mode.
So do I wrap my son in bubble wrap and keep him by my side at all times? Do I make him sit on the floor surrounded by pillows and play quietly? No. Well, not unless he has just had a seizure is post-ictal which means he is unaware of his environment and very unstable. Then we do the sit on the floor surrounded by pillow thing until he fully wakes up. Normally, my son is active and independent, he plays outside with his siblings, he watches movies and plays video games in his room. He even goes on short bike rides with the family.
There is absolutely no reason for me to believe that I can protect my son at all times. He has just as many seizures when he is relaxing as he does when he is playing. I have had to decide to give him the right to do the things that he loves and be as independent as possible and not rule his life by my fear. I set boundaries based on real, practical worries and not my anxiety. For example, I do not let him be alone around water because water is a real danger for him. I never leave him home alone because that could be very dangerous. But I let him swim with a life jacket as long as I am there. I let him spend time in his room or downstairs without anyone right next to him. I let him have as fun and happy a life as he can.
But, what about my fear? Do I allow that fear to stop me from enjoying my life? How do I keep the fear over my son’s health from crippling me? I have 7 other children and I can’t allow my fear to stop me from doing all of the things I needs to do or from being the mom my kids need me to be. So what do I do?
Steps to Living a Happy Life When Fear is a Frequent Companion:
- Lean into your fear – I know, this sounds wrong. We should reject our fears and be strong right? I don’t believe so. When I allow myself to really feel the emotion I can deal with it much better than when I try to ignore my fear. I take a moment to really feel what I am feeling and identify it. When I fight the feeling it seems to last a lot longer and be a lot more crippling. Monsters can only hide in the dark.
- What is the worst possible scenario? Really be honest with what you are afraid of. For my fear over my son’s safety, the worst possible scenario is really bad, but that isn’t true with all of the things that we fear.
- Is the worst possible scenario likely to happen? Even with my son’s severe seizure disorder, the chances of my worst fears being true are not likely. My son has had many seizures at night or during the day when he is by himself in a room and he has never been seriously injured. I have safe guards in place, and he is very tough. But he is likely to have a seizure.
- Is the worst possible scenario something I can control? For me the answer is usually no. I can’t stop my son from having seizures and I can’t control whether he will succumb to sudden unexpected death in epilepsy. I can control how many dangers are in his environment like not having standing water around.
- Will my action effect the outcome in a positive way? With my situation, like most, the answer to that depends on what action I take. If my action is to go and check on my son to make sure he is safe, that is positive. If I check the room he is in to make sure there aren’t sharp objects he can fall on that could help, but I know that my son can fall on a Hot Wheels car and scratch himself so that only goes so far. If my action is to make him stop doing the things he loves so I can always have him right by me, that would hurt him much more than a seizure would.
- After I have allowed myself to feel the feeling and thought through why I am afraid, I act. – The first 6 steps usually take seconds for me. I have this happen many times a day so I have really developed this skill. When I act, I usually go check on my son. If I find him ok, I take a slow deep breath and then I can move on with my day. If I find him not ok, for me that means he is having a seizure, I move him away from danger and make sure he is safe. He often bites his cheek or lip or gets a bloody nose, so there can be a lot of blood. If he’s bleeding, I clean up the blood to make sure he’s not seriously injured and take any other actions I need to take.
When I take the time to feel my fear first, I can be calm and act if there is an emergency that I need to react to. If I try to act when my fear is still controlling me, I have a much harder time doing the things my son needs me to do, and that can be dangerous for my son.
- Stay busy – In my life, I have 8 kids and plenty of things to keep my mind and body busy every second of every day. Not everyone has as much going on as I do, but staying busy helps to keep fear and anxiety away. When my mind and hands are busy doing other things, there is not as much time to think about things that worry me.
- Recognize the positive – Don’t borrow trouble. No amount of worry or fear on my part can stop bad things from happening. All fear and worry does is stop me from being happy now. I am conscious about focusing on positive things and having an attitude of gratitude throughout the day. I am grateful that my son is able to do the things he loves. I am grateful that he can be independent. Focusing on the positive things I am grateful for helps to keep the fear away.
- Have Faith – I know God lives and he loves my son. I have felt His promptings telling me to check on my son or to take him to the hospital. When I listen to those promptings, I have been able to avoid very dangerous situations and I have been able to take him in when a normal seizure ended up being life threatening. Knowing that my son is in God’s hands helps me to feel calm. I know He will help me to know when I need to act because He has helped me before. Am I listening to my fear or a prompting? My fear is paralyzing, it is a cold gripping feeling. The promptings I have felt are a reassuring call to action.
Remember that fear does not equal weakness. We all experience fear. Fear is only bad if you let it be in control and stop you from living your life. I will not pretend that the things that scare me are more important than the things that scare anyone else. I do believe that if I can learn to live a happy, productive life with the fear that I have for my son, then it is possible in almost every situation.
I am not perfect at this. I am still learning and growing. I am not super tough or amazing – at all. I have worked hard to get to where I am and I have a long way to go. I would love to hear from you about what you do to help you to live a happy life when your fear seems to be bigger than you are.