I can’t explain why I knew that when I got to know blogs as a reader I would eventually start one. I’d began reading infertility blogs, not because I was infertile but because I enjoyed the writing . One of the first was Cecily at Uppercase Woman and others and in the comments of her blog I metDawn at the now closed down This Woman’s Work. That was 9+ years ago. This past May I quietly celebrated 8 years of blogging (as in I thought, hey, I’ve been blogging for 8 years last June).
It was, as it the case with a lot of bloggers with sick kids, I’d started it thinking I would make it easier on me to let family and friends know about the kids and their issues. I just had to train people to check the blog and let go of my update emails I’d been sending so often. It worked and the blog became the main way people checked on the status of each of the kids.
Something happened though because as I wrote about them, the feelings came out of me. The feelings of being a mom to sick kids…The Caregiver, the feelings I had about their mortality, and my feelings about raising kids with special needs. I wrote about how they struggled. Their friendships, issues with health care professionals. Our process with our kidney donors and the feelings surrounding their kidney successful transplants, some 3 and 5.5 years ago.
It never occurred to me that we’d face soul crippling depression in one of the kids. It never occurred to me that I’d have a child that wanted to kill themselves. As I was coming to grips with that fact, I poured out my feelings on the blog. The big question, generally speaking… it’s their story but my life too, can I tell it? Should I tell it?
We thought yes. We’d reasoned that it was better for the kids to know we weren’t ashamed of their disease and we talked about it a lot to help them not feel shame. The blog also helped with that I suppose because it allowed me to work out feelings there and bring those words into the real world. This point really hit home when it was clear Gage was suffering emotionally. Do we still tell the story?
We were at a crossroads. Continue to tell the story – the entire story – or shut out part of it? I know it was a risk to write about Gage’s mental health. I know he didn’t have to be the poster kid for mental health wellness but if we didn’t behave the same way with him in regards to mental health as we did with kidney failure, what would that tell him?
- It’s your fault.
- You could help it by just being happy and behaving.
- Shame on you because it’s not your body failing you, it’s your mind.
- We only cared about your body functioning..
- If you were a better kid – a better person – you could act happy and be happy.
- We only want you when you appear to be well in all areas.
The thing is, I wasn’t willing to look at my son and tell him any of those things. I was however, willing to explain why I chose to share his/our story publicly, knowing one day, we’d get through it because at the bottom of my intention is goodness. And there is a strong belief that he is amazingly strong and resilient and he’d weather it.
Gage knows his entire story is on the Internet for anyone to see. He’s Googled himself several times. I read any posts that concern his health (physical or mental) to him and he has ultimate veto power, immediately without question. I mean, I write the entire posts and hold in draft until he says yes or no. Right now, he is still saying yes.
He lets us continue to share these stories about his mental health and you know what I tell him?
- You are amazing to let me share your story.
- There are so many families that are helped knowing that you’re surviving…they know their child or they can survive too with proper treatment.
- You give people hope.
- You are telling people your life has value and you shouldn’t be ignored.
When I think about taking down the blog, it’s not because there are people out there who think I am a horrible mother for telling Gage’s story (trust me, there are plenty). It’s just because in a lot of ways, there’s a new story but it’s because I’ve grown, nothing else. Hence my silence over the last few months.
For the people that think I’m horrible? I’m okay with that. Luckily, I live my life with little regret. Plus, if those of us touched by mental illness don’t talk about it and put real names and faces to it, it’ll never get better and years from now people will still be afraid to reach out for help and many of them will kill themselves.
That is something I can’t live with.
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