The person who knows the most about how I am dealing with things in my life, would most likely be me or my husband or maybe even one of my best friends. However, it seems that other people, who I really don't know all that well, seem to know everything that I need to be doing and everything I am doing wrong.
So, my son, Phineas, just turned 8 which is an important birthday in our family and church because that is the age that kids can make the decision to become a member of our church. They choose to be baptized. There is a program where people speak, songs are sung, prayers are spoken and so forth. Finn asked me if I would give a talk or say a prayer. Now, I have been struggling with my faith for many years now. Since Oliver was diagnosed, it's been very difficult wrapping my mind around things. I truly believe that Oliver exists and that he is near us in spirit and knows what we are doing. I believe that I will see him again someday. I struggle with certain doctrine in the church and just an overall feeling of confusion about things. It's very difficult to explain. Anyways... at this point in my life, I am struggling, and when he asked me to participate in his baptismal program, I was hesitant. I didn't want to be a hypocrite. I didn't want to start crying. I didn't want to feel the way that I was feeling. I didn't want to be judged ("Why is she speaking about this when she doesn't even practice what she preaches?"). But then I thought... this is about him and his special day so I got over my fear and helped with the program by saying the prayer. I want him to remember that his mom cared about his day and his decision even when I was doubting mine. I always want to support my kids even when I feel like I can't.
So, it was difficult for me to be there, but I made sure I was there and was present. It was a nice baptism and he was happy. Everyone that spoke did a great job. We had cookies afterwards and were talking with a few people. Then, someone came up to me and we started chatting. This person has always been nice and I know that she meant well in everything she said, at least I hope she did, however it felt very critical. We went down the hall for more privacy and we started talking. Of course I was emotional that day for many reasons. One being my own spiritual shortcomings and doubts. Another reason I was emotional was because I wondered where Oliver was -- if he was there for Finn's special day. When I think of Oliver missing out being here on earth for things like this it's hard. Yes, it's great that he's there on the other side, but it is still difficult when he's not here. So, I was already emotionally exhausted and wasn't ready to hear certain things that were said to me. So this person, in a nice way, said that she had felt that Finn was going to do great things in life, but only if I - oh, how did she say it? - pretty much was a better person. I was told that I was stubborn and that I needed to put my pride in my back pocket. Now... I don't know if those two things were in reference to the fact that I hadn't been going to church for many years or what, but that is what I got out of that. Then, the thing that hurt me the most was when she said, "You are NOT coping with losing your son". Um... WHAT?! Then of course it was followed by the old you have more children you need to be a mother to and that I need to see a counselor. I was actually thinking a few things in my head while she was talking:
#1 - "This is EXACTLY the reason I stay home and am not around people."
#2 - "Wow... I feel like when I come to church people will judge me. And... YUP... I am being judged right now. How did I know this was going to freaking happen?!" (interestingly enough, people ALWAYS say, "No one will judge you!" -- FALSE!)
#3 - "I don't recall asking for advice."
#4 - "This person doesn't have stewardship over me so why do they have visions of what I should be doing... since I'm hindering the greatness of my son and not being a good mother."
#5 - "I need to get the hell out of here before I start swearing at this person in the church building and then later I'll feel bad about putting her in her place."
So, this person had a grandchild that passed away, so I guess she knows what a mother feels like... also what I feel like. I am not her. I am not her daughter, who I have no clue how she is 'coping'. We all cope differently. I am ME. I wish people would just mind their freaking business. If you are that concerned... pray for me. That's it. Because you may think you are helping when in fact it makes me not want to come to church because my fear of being judged was just proven correct. HOWEVER -- I KNOW THAT YOU SHOULD GO TO CHURCH BECAUSE OF THE DOCTRINE, NOT PEOPLE. But... it makes it difficult to go to church when you have doubts about the doctrine AND the people judge you.
I will be the first to admit that learning how to cope after your child has died, is not that easy, in fact... it is nearly impossible. Top that off with my own mental health issues... and I'm lucky to get out of bed every day. Now... NO ONE, but myself, my husband and my kids, know what day to day life is like in our household. NO ONE, but myself knows how I feel and what goes through my mind on a daily basis. Therefore, I don't take kindly to people thinking they know what I should be doing -- especially when I didn't reach out and ask for advice. I do have a bad habit of bearing my soul to people that aren't sensitive enough to handle it. Thus, why my trust issues have skyrocketed. I stay away from people because I don't want to divulge too much of how I'm feeling because that opens the door for judgement. I feel like I am trying my best. I've said it before and I will say it again. After the death of your child -- your definition of success changes. Maybe BEFORE Oliver died, success was being out of bed and dressed every day, cleaning the house, cooking dinner for everyone and going to every appointment and activity that my family was in, etc. AFTER Oliver died, success for me means getting out of bed... showering. Some days, I clean the house a little depending on my level of pain. Some days I am up and energized and happy and joking with the kids. Most days I smile and laugh and am present, but those days still have a little dark cloud over them. Some days are spent in bed all day. Thus is the nature of grief... of losing a child that shared my body. A child I had for 10 years. Thus is the nature of mental illness. They are intertwined and it is one of my worst trials. Mental illness comes with self doubt and self loathing, I don't need to hear how I should be doing things because that tells me that I'm failing at it. Every single day, I endure. It may look different every day. It may not look like enduring to someone else looking in, but it is my journey and I feel like I'm doing pretty good. I know how I would like to be, but that doesn't mean that it is even possible. I know things I need to work on, I don't need someone telling me what THEY THINK I need to work on. Again, I know I could be better, but as of now I am not 6 feet under, so that is a success in my book.
Yes, I'm working on forgiveness. I'm trying to see things from her perspective and trying to see that 'she meant well' because she is a nice person. It is just so frustrating getting advice and feeling judged when I already feel crappy enough. I'm just trying to get through the day without climbing back into bed. UGH. Life sucks sometimes. Life is hard. I was going to reread this and tweak it, but you know... this is how I felt when it happened. This may be how it feels to other grieving mothers, so I won't change it.
To all the grieving mothers out there reading this. I'm sorry. I'm sorry you are on this journey. I'm sorry there are things out there that make this journey even more difficult than it has to be. A fellow DIPG mom has been struggling with people saying hurtful things about how she caused her child's cancer. I just don't understand how people feel it is their right to judge and criticize a grieving parent. We are judged and criticized for everything and people think they have a right to insert their two cents. We are criticized for causing our child's cancer, for what we divulge to our kids or don't divulge to our kids. We are criticized for the treatments they have or don't have. We are criticized for what we do with donations that are given to the children, for taking them on trips and making memories. We are criticized for being too honest about our feelings during their treatment and after their deaths. We are criticized for not being there for our other kids, during and after. We are criticized for stopping treatment and accepting the fate of our child. We are criticized for not praying enough. We are criticized for how we choose to tell them goodbye. We are criticized for not coping well after they have passed. We are criticized for being on medication. We are criticized for not being the same person we were before our child got cancer and died. No matter what we do............ we are criticized for it. It's no freaking wonder why we don't want to leave our homes, why we become hermits. I KNOW I'm not the only one going through this, so I just want to say that I know you are doing your best. It may not be what others think should be your best, but you are striving to be better and that is all we can do. You are loved. Your child is loved. I need to repeat those same sentiments to myself to continue to endure because I know it is not the first time someone said something critical and it won't be the last.