I want to talk about PTSD. Most of us hear about this in relation to men and women returning from war. It can happen in many other situations, as well, but I want to talk about it in relation to special needs parenting. In general, I strive to keep things positive. I firmly believe focusing on the positive makes everything so much more bearable. Even so, I have definitely experienced moments of PTSD since Emma was born. This year, however, tops them all.
I know I am not alone in this. I think many special needs parents try to be positive because we know that on top of facing our already awkward, uncomfortable situation, being raw and honest about our pain would probably be too much. It would scare away the few who haven’t disappeared from our lives. One important thing I have learned is that if I can’t be honest with you about the bad as well as the good, we probably aren’t really friends. The people who truly care about me will be able to hear about my pain and stand by me through it.
With that being said, I want to share about my PTSD this year in hopes of breaking down the walls between the special needs community and the rest of the world. I hope my sharing gives another special needs parent/s the courage to share with those around them because we already suffer through so much alone, as it is. When we are able to be honest, people step up to support us and many times, save us when we most need it.
This year, Emma’s seizures returned. She had been seizure free for two years and I was feeling comfortable and…(gasp!), safe even. She had just made it through a major surgery with no breakthrough seizures and I was optimistic as we welcomed 2018. Then she had a seizure on our way to a neurology follow-up. Surely it was just a fluke. Maybe it was a UTI, a cold, or her recent growth spurt. I didn’t worry, completely confident some med changes would do the trick.
Fast-forward seven months, numerous medication increases, five new medications, a lengthy hospital stay, and lots of tears and we are still fighting them. They are now happening multiple times every night despite the fact Emma is on four different seizure meds, all of which are maxed out. She sleeps with me so I can feel and hear when she has one. My phone is constantly on me, ready to alert me to the fact she needs me. I speak with her neurologist and his nurse more than I have spoken with many of my friends since this all began.
What does something like this do to a parent emotionally and physically? I don’t sleep much and when I do, it is very light sleep. I am constantly aware of her breathing pattern, movements, and any sounds she makes. My heart races each time she has a seizure, which keeps me from falling right back to sleep. The thoughts that go through my head and the feelings that devastate my heart are traumatic in and of themselves. I go back and forth between feeling helpless and determined.
During the day, I have a hard time focusing on anything but the thought of what will happen if we can’t get these controlled again. Is this how our life is going to be from now on and if so, how can I be okay with that? How can I still fit into ordinary life when my life has been turned upside down and I feel anything but ordinary? What kind of things does a parent of a very ill child discuss with people who can’t even begin to understand your reality? If I seem distant, it really isn’t you, it’s me! I care about you, but am so overwhelmed; I often can’t even focus on what is being said to me without some extra processing time.
The phone rings, it’s the school, and I instantly panic. I just know Emma has had a seizure and they have had to give rescue meds or call the squad. Even after I hear the OT’s voice asking about a swing for Emma during recess, I cannot calm my heart or my fears. What I really need is to find a room where I can breakdown without terrifying everyone around me because, for now, she is okay. For the rest of the day, I am restless and unable to think clearly. But don’t worry, somehow I can still plaster that fake smile on my face so you don’t have to share in my pain.
I have a bag packed at all times. I check it often to make sure it has everything we will need not if, but when the next unexpected hospital stay occurs. We have been caught unprepared before and it’s amazing what a pick-me-up a clean pair of socks and a tooth brush are when you are in the hospital for a week, far away from home. At times, I feel like one part of me has been left in that hospital mentality while the other part is struggling to live day to day life at home.
I rarely feel hungry and my stomach is always upset. Yet, because of the stress, my thyroid has gotten sluggish and I pack on the pounds. This, along with the lack of sleep only makes the sadness, depression, and isolation worse. I am too tired to get outside and walk or exercise, which only serves to worsen all of the above symptoms. It is a vicious cycle that there doesn’t seem to be an end to. I consider taking one of the Ativan the doctor gave me so I can sleep, but am immediately fearful it will prevent me from hearing Emma’s seizures. I don’t need sleep that badly. This is, after all, life and death.
There is still a small part of me that hopes this isn’t it, that this isn’t the way our life is going to be from here on out. I miss genuinely laughing, being able to have conversations with my non-special needs friends, and being able to be fully present with the people I work with. Right now, I can only get through this the best way I know how and I know the people who truly care about me will understand that. I know they will stand by me in my pain.