I know we are not supposed to say the word “normal,” but we all use it in our thoughts. This morning we almost felt normal. We got up, dressed, packed the lunches and loaded the kids up for school. I was off to work and my husband off to take the kids. But it wasn’t normal. I woke up and watched my daughter’s oxygen levels to see how our morning was going to go. We made her lunch and prepped her feeding tube bag. We loaded her into the car using a wheelchair lift. This is our life with a child with a life-threatening illness, specifically spinal muscular atrophy. And we have embraced it, in its non-conformity, its differences and uniqueness. But how has this life taken an unseen toll on us? When your child has a life-threatening illness, it requires you to occasionally save her life. Sometimes it even requires you to face her death, stare into the possibility of a future without her.
Paramedics, firefighters and soldiers face issues with post-traumatic stress disorder (PTSD) for the difficult things they witness, but PTSD does not only affect those who fight for our country.
What if the child’s life you save, the airway you clear, the heart you keep beating, belongs to your own child?
The baby you birthed and nursed in the middle of the night?
You just wake up and make lunches and go to work, right?
You can do that until you are at the grocery store and there is an announcement over the loud speaker preceded by a loud beep, which reminds you of beeping hospital machines, and suddenly you are crying in the wine aisle (which seems almost fitting). But I pushed past that warning sign. And then a couple days later at work, the copy machine jammed and wouldn’t stop beeping. I started hyperventilating and generally lost it. After a quick Google search, website after website kept referring to PTSD. I saw common symptoms with what I was going through: no sleep, no desire to eat, lack of social interaction. But those come with our in-and-out of the hospital, endless doctor appointment-filled lives, right?
Because when there is a test of the Emergency Broadcast System and you “flip out” in the middle of a semi-crowded waiting room, it’s not normal. When my child turned blue, I calmly picked her up, carried her to her room and placed a plastic catheter down her throat until her breathing stabilized, yet I fear going to the grocery store.
Other people, even those with medically fragile children appeared to be handling their lives well, and I felt guilty for even thinking the letters PTSD. And moms aren’t supposed to have mental breakdowns. They pull themselves together and make appointments, schedule the next holiday and make dinner.
My friends and family couldn’t quite understand what I was going through; they thought a professional would be better suited. I was unwilling to take their advice then, just as hard as it still is to admit I need help. But I am nothing if not a problem solver, and as the symptoms got worse, it seemed that was the only way to solve my problem.
What was harder than making the appointment or talking to a professional about my experiences, was allowing myself to have PTSD. If there is any advice I could give to other parents or caregivers experiencing something similar, it would be that trying any solution is the best option. And in this case, speaking to someone about your mental health and getting the help you need is the best solution.