The Struggle Is Real

Standard

Although I work hard to focus on “one day at a time”, I find myself searching down the unknown path of what the future will hold. These last few weeks have catapulted my thoughts into a million different directions and feel as though I am on an emotional cusp of breaking. Olivia has been having greater difficulty sitting willingly in her wheelchair. My husband and I have wracked our brains and have covered all of the possibilities related to comfort, support, and posture. We had originally thought her displeasure was caused from pain (and still aren’t entirely certain it’s not), because Cerebral Palsy causes her to have daily pain to some extent; it’s also possible this could be behavioral. But how can we be entirely sure? This is our dilemma.

This is the stuff that really sucks. The stuff, that in most situations, could be cleared up with a conversation or a few poignant questions? Is your seat uncomfortable sweetheart? Are you feeling pain today? Are you frustrated with sitting too often? But when you have a 5 year old nonverbal child who is still developing reliable eye gaze communication skills, and when thoroughly pissed off refuses to use what she knows; instead chooses to scream her hardest and sky rocket into a full on meltdown, everything goes sideways fast.

These are the times that break me down, ugly crying because I know as hard as I try, I will never fully understand my child’s needs. The best I will ever do is a best guess and that is a hard pill to swallow.

As emotionally draining these last few weeks have been, the small wins are what have gotten me through. Today we made it the entire way home from school, without me having to carry Olivia any part of the way. What did this tell me? Well for one, she probably wasn’t experiencing pain (and I highlight “probably” because thats my best guess) and/or she was in a great mood! That was a BIG win! I immediately praised her for being such a “big girl for sitting nicely”. She replied with a smile. Was she choosing to sit? I have no idea, but that was the hand I was going to play. It seemed to work, she felt proud, and I felt good (somewhat relieved) for guessing right.

To me, parenting a child with special needs is finding the steady balance everyday, grasping tightly onto hope and struggling to keep the fears at bay. It’s understanding that we never truly can predict what the future will hold and convince ourselves to stop trying. It’s reminding myself/ourselves that I am/we are doing the best we can.

image

2 thoughts on “The Struggle Is Real

  1. Hi! I just wanted you to know you’re not alone. I have an 11 year old with CP. I realize each situation is completely different but your daughter sounds a lot like my son. There are times which we feel are legitimate times of pain in his chair because his hips are dislocated; however, the majority of the times it is strictly behavioral so don’t be afraid to address it as such. For years I’ve thought of my precious son as trapped between worlds: he’s always known what he wants and definitely what he doesn’t want but no effective way to get it across. He’ll throw a fit and reach out to bite or pinch (so definitely behavioral) or pretend he’s asleep but as soon as he knows he’s getting to go to his bed the switch flips and he’s perfectly happy. In our years of dealings with this we’ve had no choice but to get him under control through medication (Risperdal). Sorry for writing a book in your comments. I could talk about my forever. The point was if you start thinking its behavior it most likely is if there’s no other reason at that moment she should be in pain and its generally only when she’s in her chair. There’s a lot our kiddos won’t be able to do but even if they are mentally delayed they still can act their age (thats how they’re trapped in between worlds). Hope this doesn’t offend. Just wanted to offer peace of mind you’re not alone. Sometimes as parents of special needs we really need to know we’re not alone or crazy.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s