PTSD: A condition that develops after a life threatening experience which made a person feel fear, helplessness, or horror. They experience symptoms such as persistent and unwanted thoughts about the experience, nightmares, a desire to avoid people, places or things associated with the experience; emotional numbing; feeling distant or cut off from others, and being anxious and easily startled. These symptoms persist for more than a month and interfere with day to day functioning.
10% of dads of children with cancer and 40% of mothers will experience PTSD. Parents and siblings of children with cancer report PTSD more than the cancer patients themselves.
Please for all that is Holy read this. I literally thought I was crazy. It started about a month after Brody was declared NED (no evidence of disease). I basically started just spiraling out of control. I was constantly googling what relapses in wilms look like. What should I be looking for? How often does it occur? It became a nightly thing. It consumed me. Then it turned to me. Something felt off with me. I felt it in my gut…literally. I called Michael hysterical one day that I was positive I had ovarian cancer. Luckily I have an amazing ob gyn who was familiar with our story and got me in that afternoon. Michael drove from Kaukauna to be with me at my appointment and we had an ultrasound. They did find something, but not cancer! I had a procedure done to take care of it but I continued to have abdominal pain. I went in and out of doctors and er’s. I thought no one was listening to me. I had test after test done. My husband was beyond frustrated but trying to be supportive at the same time. It was affecting everything. The procedure didn’t fix me. I was broken. I still am broken.
People assume that when your child gets the big remission gold star everything is all good in your world again. It couldn’t be further from the truth. When your child is diagnosed you rely on your instincts. It is the fight or flight aspect, and hell we fought. But guess what, now we don’t have to fight anymore. Your purpose is gone. This is when you have the opportunity to really absorb and deal with what you actually went through. When I look back on the videos I have been sharing with you, both Michael and I agree that we blocked A LOT of that out. We were just focusing on keeping up a brave face for Brody, our families, our friends.
When I look back and think about how I handled things, I may have done things differently. I felt like I had a lot to prove…again that stupid brave face I insisted on putting on. I think I would have taken off of work on chemo days. Or maybe the day after- they were physically and emotionally exhausting. I should have given myself time to digest everything I was witnessing and experiencing. I think I would have said no a lot more. But we were going stir crazy and again just trying to get through the day. Our doctors complimented us over and over on the normalcy we continued after Brody was diagnosed…I truly believe it was the best thing for him, I am just not sure it was so great for me.
I know I have harped on this before but please, please if you know someone going through this- reach out. And I don’t care if they don’t respond to you. They are hearing you. They are feeling you. I break down after different times of day, points of the journey, and to be honest- I reach out to the closest person in the vicinity. I craved being around people who helped me forget what was going on, but also kept me safe, kept us safe. The people who I didn’t have to ask for help, because honestly its all you feel like you are doing. You are asking neighbors, friends, family, and mostly God. Every night and every morning you wake up praying, begging, and asking God to give you a healthy baby boy back. I needed the people that knew when I didn’t want to talk. People that knew when I just needed a glass of wine. People that knew that they needed to take Brody off of my hands so I could just get five minutes of breathing room- without having to look at him and constantly think what if?
I still think what if? Daily. Hourly. By the minute. What if it comes back? What if I regret punishing him? What if tomorrow this starts all over again. I don’t think that will ever go away. So please be patient with me. Like I said I am broken, but I know I will put the pieces back together. In no way will they resemble me from before, but it will be just as good, if not better.
Normally I ask for donations to MACC fund, but for today’s post I would love to see donations to Families of Children With Cancer. They are the ones on the frontlines helping families deal with the current and aftermath effects of cancer diagnosis.
https://www.focwc.org/donate-index-impact
