More than six years ago I started what I though would be a humor / homeschooling / Catholic parenting blog. I didn’t share many photos of myself or my kids in those early months, not wanting to let the obvious fact that two of my sons were physically disabled dominate content or conversation. Sure, we were what you’d call a special needs family, but I only saw my sons’ disabilities as one small part of a much larger picture. It took me a little while before I was willing to share the struggles, and joys, of our brand of normal. I was still struggling myself with managing a family with five young kids, plus all the additional stuff spinal muscular atrophy dumped on us, and wanted to keep those feelings off my blog.
Fast forward and now, while I still don’t consider myself just a special needs blogger, sharing that aspect of my family’s life is what many people online and off, know me for best. I put a face, or more accurately seven faces , on what it’s like to thrive in the face of adversity. Blogging about my life has created awareness, helped me process my feelings, documented my growth as a parent, and connected me with other parents who couldn’t find support in their own communities.
Nowadays there is lots of info on how to start a blog for profit, or as a side hustle, but I want to suggest blogging for its own sake- because writing about your life, and your child’s, has value in and of itself. Society needs more voices that bring attention to the fact that there is not one perfect life- joy and happiness can be found in all body types. And that the challenges faced by disabled people and their families are not impossible to overcome.
Here’s some thoughts (I couldn’t keep it to seven), from me and some of my favorite bloggers, on starting a special need’s blog.
On how blogging helps us cope:
“Early on when people would approach us and ask how things were going, I would just say, “We’re keepin’ on!” or something equally dumb and undescriptive. But that was really a way to protect myself. There were too many times I would share honestly and see their eyes glaze over. Or they would leave the conversation visibly distressed, which made me feel awful for making them feel bad.
The blog offered a way to share much more of our true journey without having to worry if the audience was strong enough to take it or even actually interested. Eventually I realized how much I enjoyed writing. I joke that it’s like free therapy. My husband is glad that I have an outlet, since the bulk of the care falls on me.” – Alicia Schonhardt, Sweeping Up Joy
“Just the act of putting words on the emotions helped me to clarify where the real problems were… and where I was just being whiny or selfish. The social aspect was enormously beneficial; it was a way for friends to reach out to me, with supportive comments, prayers, etc. who otherwise might not have had any clue how to help — and that all definitely helped. I try to keep posting now less as private therapy for me and more as public encouragement for others.” – Christy Wilkens, Faithful Not Successful
Writing is how I sort out my thoughts. Often, I share what I write, other times I keep it for myself. Looking back, I’m glad I have all those blog posts, and private journal entries, to remind me of the good times, and how far we’ve come from the bad. When we had medical procedures and hospital stays, it was so much easier to share detailed updates and specific prayer requests, through my blog then worry with texts, Facebook, email, etc. If you want to know how Fulton is doing, read my blog. Done. You don’t need a public blog like me, you can have a password protected site, or a private blog through a place like CaringBridge.org. You can also write through other sites like The Mighty, or HuffPo- you don’t need your own stand alone site to share your insight. And you don’t need to keep to a schedule; use the blog as you need it.
On finding support:
“[Blogging] helps me to find people in similar situations and glean advice and solidarity from them. Otherwise, I would feel very isolated. … If I can help support and encourage just one person who is coping with a diagnosis, then I will consider my work done.” – Sylvia Bass, Tales from the Mommy Trenches
“Being able to connect with others has been a huge blessing. I expected to connect with other families who were living with the same diagnosis. What I didn’t expect was connecting with random people who offered their prayers and support. I could make friends!!! Without leaving the house!!!” – Alicia
I thought I had a great network of support,and that I didn’t need to make a new set of friends just because my child was diagnosed with a rare disease. I was wrong (and wrote about it here). Connecting with other special needs parents helped me in my journey, as did reading blogs by adults living with disabilities. Now, newly diagnoses families reach out to me and I can extend, hopefully, some encouraging words because I understand this part in their journey oh so well. God created us to exist in community and sometimes, the unique needs of our families require us to look outside our geographic area for support. Thankfully, in this day and age, we have a way to do that.
On advocacy and activism:
“I’d love to be out visiting places and teaching classes about some of these things, but my real live actual life keeps me too busy for that! Yet I can post an IG story from a waiting room or a blog post from the hospital and share a little bit more of what our life is like. I’m always amazed how people respond when I post about SN. I wrote this post as kind of a hair flip reaction to an ER visit with a really obnoxious nurse. It helped me calm down and then I edited it to be more constructive and productive and in just few months its become my most read post of all time.” – Heidi Indahl, Work and Play, Day by Day
Of course I like to educate people about SMA, but ultimately, when it comes to activism I decided I just wanted people to see a happy family could contain children with serious physical disabilities. When pre-natal testing means more children with disabilities are aborted, and physician assisted suicide means people are being pressured into an early grave, often by their caregivers, it is now more important than ever for my readers who have no other exposure to people with disabilities to see that children with disabilities are happy and not suffering. Disabled individuals deserve the same right to life saving treatments as anyone else. Their lives do not value less because they may be spent in a wheelchair, or in a bed, or because they require the help of someone else to go about their day. Our family is proof that society has many things wrong about what constitutes a happy life. I didn’t set out to change minds with my blogging, but ultimately, I hope it does just that.
“It can be hard to know the balance in terms of respecting our kids right to privacy. I try to apply the same rules I do to my typical kids to my SN kids. That’s a fine line to walk some times. I know a few special needs bloggers on social media make me a bit uncomfortable at times- turning their family struggles into 10 part series click bait. That is not for me.” Heidi
“I do live in fear that trolls will eventually find my blog/social media, and start calling my daughter names or saying insulting things about her or disabled people in general. I know it might never happen, but it still scares me because I know that would be a blow to me since it is so personal now.” Sylvia
Like any blogger who writes about his or her family, at some point, your cute little children will turn into big opinionated teenagers who may not want their potty jokes turning up when someone Googles their name. We can only share our story, and their’s as it relates to us. It can be tough to leave space for them to fill in their own story as they get older. Even stories that may help someone, may not be yours to tell for the moment. I don’t want to make any of my kids a gimmick. It’s a balancing act. My kids can read all my posts and they know when I write about them. I keep their futures in mind when I’m writing and make sure what I’m sharing is relevant.
Do you blog or write? Are you a special needs blogger with insight to share? Write down your thoughts then link them up below. Be sure to include a link back to this post so your readers can find some much shorter takes. I look forward to reading your posts!