A rare occasion that Gage let me hold his hand.
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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YES. This. Exactly.
I know you know, my friend.
I think it’s awesome that you have shared all of your stories and that the kids have veto power. The written word is a powerful thing, and you use it for good, not evil!
Thanks Andy…so far, the people that think I shouldn’t don’t bother me, so it’s all good.
As someone who suffered from depression as a child, I think it would have been an amazing thing to know that I wasn’t alone out there, and possibly for my parents, who tried very hard but didn’t do a great job, to know that other people, including children, are dealing with similar issues.
I always felt lonely as a kid, for lots of different reasons, but the mental illness added an extra dimension to it.
I think it is wonderful that your kids know that you love and support him, no matter what they are facing.
Big hugs to all of you.
Thanks so much.
I don’t always make the right choices about their care, but I do it with the knowledge I have (or try to get) and I try to do it without regret.
I’m sorry your parents didn’t know how to support you the best way for you.
Because of you I learned that I could and should be more open about my illness. I remember suggesting that you be open about the mental health issues only in private. And then my mind changed completely when I realized that if adults were going to handle Gage’s illness with cruelty then I owed it to people younger than me who were newly diagnosed and stepping into a world of stigma and frustrations from that to be less than anonymous. And honestly that was a freedom I’ve been so glad to have. I’ve made it a point to discuss my illness whenever I have read people with biased opinions usually caused by lack of exposure. Just a few weeks ago someone came on to the hysterectomy support group that I’ve been in for people who had surgery the same week I did. I had vicodin stolen by someone working in my mom’s house and she first proceeded to say she didn’t believe me and that I was abusing meds because I was bipolar and gave a list of meds to treat it. When I responded that I was very familiar with the treatment of my illness both because it is my life and has been a long time and because I also have degrees and years of experience working with people with psychiatric issues. She told me that I had no business working in healthcare with the disease. I think that hit harder because of course I don’t work now and I miss it.
But I couldn’t believe this random person showing so much prejudice.
I think the other benefit of being online and open is that you do get to connect to people. This sounds selfish but being able to give you information and ideas to help Gage made me feel like my illness had a purpose. I could help someone! I had always hoped that might happen but really never have known because I have a low comment blog.
I like that the kids have veto power. I think Gage is an awesome, brave kid for letting you talk about it. From what I remember at the time I think that your speaking out without shame probably was the best thing you could do. Gage went through a lot but I think he was able to feel that his parents were always there for him and totally on his side. Various things he said and did prove that but even more now that he reaches the “touchy ages” and still is ok with it. He shows amazing strength of character and I love that he’s learning to laugh at himself instead of exploding.
You’re a good mom Julia. I wish someone had paid any time amount of attention to my issues, much less done what you have.
Jen
Jen, thank you. Given what you’ve been through in your life I take your words as a huge compliment.
Thank YOU Jen for everything you’ve given us. I am been totally off the grid of closely keeping tabs on you…I’m sorry! But know I always love you and think about you.
I started reading infertility blogs as well because Cecily was my friend, she was starting down the road to IVF, and she turned me on to all the greats like Get up Grrl and so many others. Although I had no issues with my fertility these women’s stories of success and heartache drew me in.
I was depressed as a kid and had suicidal thoughts in 4th grade. It was the late 70′s so there was no help and my parents were very checked out when it came to me and my mental health issues. I wish there was an open dialog and I could of gotten help then instead of floundering until I was in my early 20′s having numerous suicide attempts. Luckily for me I found the right therapist, worked through my childhood abuse, and let myself follow my dreams. How lucky is Gage to have help now. To have community now and at such a young age help shed the stigmas around kids and mental illness. Bravo
I hope you are right and sharing this, being open makes a difference some day to someone.
Making the invisible visible is one of the most powerful aspects of blogging. It’s why I do it. Yes, it brings with it a certain complexity but I agree with you – we can always find ways to work through that.
I suffered horribly as a child with depression. I never had a parent that cared enough to ask why I was sad, or to consider that it was anything more than typical teen angst. I’ve been drawn to your writing because it is so apparent that you care about your kids, and their feelings.
Now I have two children that suffer from horrible depression, and three that have incredible anxiety. Your writing has helped me reach out and share with them that I understand where they are coming from, and that it does get better. I am hopeful that I will be able to continue to empathize with my children the way you do yours. Thank you for all that you’ve been able to teach me about dealing with children with depression. If you’ve reached one, you have succeeded. Again, thank you.
Thank you so much for saying this…
You’re doing good, my friend.