It probably comes as no great shock to hear that I have struggled with the blog this summer. What you may not know is why. It’s not a lack of time or a shortage of topics that plagues me, but a fear of ripping off my emotional Band-Aids and letting the wounds ooze out onto my keyboard.
I have much to say, but I fear saying it.
I don’t want to discourage other parents – particularly parents who may be new to the special needs life – by showing that I am weak and feeling defeated. I don’t want to reinforce the rampant stereotype that it’s Oh, So Hard to parent a child with a disability, because so many opt not to take on the challenge.
But it’s not just external pressure that I feel.
I have always been the type of person to soldier on, no matter what. When I’ve heard someone say, “I don’t know how you do it,” my rhetorical response has always been, “What are the other options?” Curling up into a fetal position and pretending X, Y, or Z isn’t happening might be a way to get through a day or two, but it’s no way to live.
But sometimes it’s tempting.
- When I’m cleaning pee off the hardwood floor for the fifth time in six hours…
- When Nathan turns a bookshelf over on himself while I’m on the phone with the insurance company…
- When I’m clearing a path of Matchbox cars and trucks in the living room (again!) so that Sarah Kate can walk through without tripping…
- When I’m battling a tween who isn’t so fond of the verbal cues I’m obligated to give her about how she’s walking…
It would be easy in those moments to choose the tears and fetal position and feel sorry for myself – and sometimes, the tears do come, because this parenting gig is supremely crappy sometimes. But it’s crappy for all of us at one time or another, no matter whether or not our children have special needs, and life gets pretty crappy at times even for the childless (yes, even those that are childless by choice).
But as long as I don’t wallow, I will see a little sunshine peeking through the clouds.
After cleaning up five puddles first thing on Wednesday morning, Nathan didn’t have another accident the rest of the day. After a fit of tears and harsh words before therapy, Sarah Kate proclaimed she had a surprise for me when I picked her up four hours later.
So I do my best to embrace the hard crappy stuff and seek the humor amid the frustrations. It doesn’t always work – in fact, it often doesn’t – but in the words of Peter Pan creator J.M Barrie,
“Those who bring sunshine to the lives of others cannot keep it from themselves.”
It’s been a struggle this year to keep my chin up at times, but many of you have written that even when I share my struggles, it helps you to feel that you are not alone. It is my hope that by propelling my clouds through this blog, yours are blown away just enough for a little sunshine to peek through, and if I help you, I will find the sunshine, too.
A note on the photo up top: I shot it off my dad’s back porch eight years ago. My cousin’s son (which I guess makes him my cousin, too) died of cancer much too young, and the family, usually scattered, was gathered at my dad’s house. It was the most beautiful sunset I’d ever seen – the photo doesn’t begin to do it justice. His mom, my cousin, died not along ago of ALS.