Trauma. I used to think this word only belonged before the word "unit." You know, like at a hospital. People who were severely injured due to an accident of some sort. I had heard this word in connection to war of course too. Soldiers seeing some awful things performing heroic acts in battle. I never thought this word though could be used to describe my life's experience due to my daughter's epilepsy and developmental delays and sensory processing disorder. Apparently I have been through more than my fair share of trauma in the past 7 years. I know this because clinically I suffer from PTSD....you know...like a war hero. In no way am I diminishing what a brave soldier has gone through. I am only astounded that I too have been through trauma just as bad. I have seen my beautiful daughter go through so many horrible things....endless seizures that knock her on her back, breathless, helpless, unconscious and fighting for her life.....DAILY...EVERY.SINGLE.DAY. Morning seizures have become customary. So customary that I had to hire help in the morning to take care of my other precious daughter while I hold, soothe, cry for and pray for my sweet Lily as she suffers from these awful seizures that have stolen so many moments of her life.
I have been silent for a long time here. In this blog. Does anyone even read blogs anymore? I have been hiding. Hiding from others seeing my real experience in the crazy journey we have been given. You see I am a perfectionist. I suffer from thinking that everything needs to be just so. My home must be clean and tidy at all times, my menu for the week must be well thought through and put on the side of the fridge for all to see, my classes must be well thought out each week, my choreography must be prepped and ready to go, my laundry must not be piled up, my workout regimen must be followed to a tee, and my kitchen should look like a replica of Joanna Gaines'. I know this sounds silly but my type A personality just thinks this way.... daily. It's exhausting. I know this and truly in the back of my mind there is an inkling of grace I give myself when it comes to all the things but boy howdy do I struggle. Daily. I want to control my life's experience and I do take control of the things I can control...my house, my laundry, my lesson plans, etc.... But the one thing in this life I want to control more than anything, I can't. The one thing in this life I want to fix and place on a shelf is totally out of my control. And in my perfectionistic mentality I sometimes think that I might able to. "C'mon Theresa Why did you turn on the light? Maybe that causes the seizure." (Sometimes lights can cause seizures) "Maybe if you give her meds earlier that would help." "You aren't giving her the right meds Theresa...it's your fault...fix it. Call more doctors. Research more." These thoughts about how I can fix Lily's seizures torment me daily. Because I want to control it so badly. Crazy right? Yes I am a work in progress...
After Lily Kate's first hospitalization due to status epilepticus I learned and even deeper sense of my inability to control her seizures. After seizure number 40 I threw my hands up in the air and felt totally numb. I have never felt more hopeless and helpless than I did that day. I was mad. Distraught. I was faint. I was not well in dealing with my daughter almost dying.
For a week after Lily Kate's hospitalization I felt anything but normal. Making sense of what I had just been through that week was tough. It was so strange to me that life resumed the way it always was after we got home. We made dinner, we went to the gym, we had BBQ chicken on the 4th of July, we watched "Outlander." And then it occurred to me that I was the only one thinking that this picking-up-where-we-left-off business was strange and felt somehow wrong after what we'd been through. After all, I had just been through something traumatic. And I keep going through something traumatic each day. And I march on. Not perfectly. But I march on and do the things I need to do for my family...while feeling helpless, hopeless, and in despair. The sadness is so deep and real at times I don't know if I will survive it.
But I do. I go to therapy, pray, sing songs about how God is good even if I question it sometimes, take my meds, and pray that a support group will magically appear in my home each Saturday. I am strong. Maybe that war hero title isn't so far fetched after all... I work daily on self-compassion. Bettering my thought process so I can stay strong and connected to my Creator.
But in the past 7 years I lost my voice... My voice that shares my experience is important to me, I discovered. Sharing my challenges might draw the ones that care a little closer...and I need that. I need comfort, love, hugs, words of encouragement. And it's ok to need these things. So here is my voice. This is my journey. Lily Kate's journey. We are marching on in the midst of the storm giving voice to our life for all to see.
