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.
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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.
Katie says
The video of SK walking made me cry. She has come so far. And the small smile at the end. I had to watch it multiple times just to see that light in her eyes. That’s our girl! :hug: my friend. When you are happy, sad, strong or defeated, I will always love you and your beautiful children! :hug:
Jennifer says
Could you hear me cheering for SK???? I was!!! And I cheer for you too dear sister!!
Kristen says
The summer of 2010 was my “curl up in a fetal position and pretend X, Y, and Z wasn’t happening” season. I didn’t of course because babies still needed to be cared for, therapy needed to be done, and occasionally I had to wash my hair, but I know the feeling. The good thing is that it has never been that bad since then. Ironically, a friend took a picture of my most troubling child that summer that remains my favorite to this day. I have it on my fridge to remind myself daily that there is still beauty even during the hardest times. Maybe this is just your season, my friend. That small smile of SK’s might be your memory of the wonderfulness that comes out difficulty. And SK, way to go!!!
Kim says
She is working so hard. That smile looks so much like I did it, even though I wish I could do more, I think I am back on track. And she is. We are not there yet, but I can see it must be extraordinarily hard and frustrating to have to watch your child go through such an extensive surgery and recovery process, knowing how hard it is, how much it sets her back and yet, how much help it can bring in the long run.