Tuesday, October 18, 2016

Those Cruel Expectations

Standing behind the minivan with the hatch up, she unlocked the wheels of her son's Zippy Tilt wheelchair and rotated it so its side was facing her. The base of the chair sat at waist level in the back of the van. She paused and took a deep breath, exhaling slowly as she remembered the last time she was at this building.

Several months ago, she and her son, Austin, had just left the "wheelchair clinic", an amazing state funded department that provides wheel chairs to kids with qualifying conditions like cerebral palsy. In their possession was a brand new, sparkling blue pediatric wheelchair; a larger replacement chair that would provide for all his growing positioning needs, but also one that felt like it weighed 500 pounds. Because of its weight, she had to carefully remove the back and arm rests before lifting each part into the back of the van, and with the anticipation of having to do that 2-4 times a day in the Phoenix summer heat looming ahead of her, she broke down and cried.

Today however, they were here for a special needs car seat evaluation so without anymore hesitation, she tilted the wheelchair towards her, threaded her arms through the chair, grasped parts of the metal structure on the opposite side, and pulled the chair towards her body so the closest arm rest pushed tight against the top of her thighs. She then performed an awkward arm curl and as the chair started to lift, she bent her knees slightly hoping to protect her back, pivoted 90 degrees, and gently lowered the chair until it rested on the ground.

She loaded her son into the wheelchair along with all of his equipment and entered the building.

After checking in, they were ushered into a room where they met the physical therapist that would perform the evaluation even though the mom had already researched, talked with another mom she trusted, and had decided beforehand which special needs car seat she wanted and planned to request.

"I want to see the Convaid Carrot 3," the mom said with confidence. She had to say it with confidence since she figured that they would initially balk at that request. The Carrot is an expensive top of the line special needs car seat, but she knew her friend had gotten one from the same clinic so she figured she could get one too.

"We don't offer that one," replied the therapist.

"Well, I know my friend got one here so I want one too," declared the mom.

"I'm sorry, maybe they've changed the rules since then, because we don't offer that car seat. It's very expensive," the therapist stated while pointing to other seats. "These are your options," and she proceeded to describe them.

The mom glared at the therapist while her inner voice threw a fit.

I knew it! Its not fair. I had a feeling I'd be told no, but then I thought maybe I'd get lucky. But now I'm going to have to expend a ton of energy and time if I still want it. Or concede to pay out of pocket even though others got it covered. But I don't even know if it's the right one for him since I can't test it. But my friend got one for her kid so I want one. But I'm tired. I don't want to fight. I don't have the energy. And it would delay an already delayed process. We needed one two months ago, and this one they are offering is already going to take up to 3 months to get. I'm not like other special needs moms. I can't fight. I don't want to fight. I'm not a momma bear. Poor Austin. I wonder how many times he gets the short end of the stick because I don't have the energy to fight for stuff. I give up too easily. Anyway, will fighting for stuff really change anything? Will it give me some kind of feeling of accomplishment since I have failed him on so many other levels? I can't believe I came in with an expectation. I know better than that. Expectations are just guarantees of disappointment.

As these last thoughts entered her mind, she realized her stupid red nose and watering eyes were about to reveal the fact that she was going to reluctantly relent so she turned away for a moment to get her oncoming tears under control. Perhaps noticing her internal struggle, the therapist said she needed to go ask someone a question about side supports.

When the therapist returned, the subdued mom submissively began to ask questions about the car seats she had been told WERE available. She chose a style that seemed to have the best features for her son, seated him in a test model, chose the lime green color, and signed the papers to confirm the order.

She left frustrated and in tears. Again. Only this time, she wasn't disappointed in the equipment. The car seat would do its job just fine. In fact, it may have features that actually provide for her child's needs better than those of the other seat. And she certainly hoped they wouldn't be putting her already physically compromised son in a car seat that wouldn't support him and do its job.

She was angry with herself for going into the appointment with an expectation. The one thing she had been trying to overcome the most these last few years since Austin was born was having expectations. Failed expectations always lead to disappointment. And she's tired of living within a bubble of disappointment.

As long as she keeps her expectations in check, there is nothing that can disappoint. There can only be surprises. Without expectations, nothing can come into her life that, while maybe perceived as unwanted, she cannot adapt to or overcome including: Austin's unique needs, an overly heavy wheel chair, and now, a lime green car seat.

Sunday, October 16, 2016

I Feel Sad

"I feel sad," announced my internal monologue. Out of the blue. While I was making a salad.

I have no idea where these thoughts come from or why during the day while doing the most mundane things, they pop up in my head. I mean, yes, eating a salad is not my first choice. I would definitely be "happier" with a big bowl of pasta or even pieces of cold pizza. But for my brain to verbalize this in a sentence always catches me off guard.

My first instinct is to start looking around and analyzing my circumstances. "I'm sad? Ok, thanks brain, I didn't realize that, so what's making me sad?" Then it's very easy for my to start identifying all the "problems" around me and to justify that thought with, "Yep, I AM sad. I SHOULD be sad." The longer I search and dwell on all those things that should be making me sad, the sadder I get.

I don't think these thoughts have anything to do with me having clinical depression or at least I'm going to deny they do. They come and go. Of course troubling circumstances bring on and intensify sad emotions, and I have experienced depression and grief, but sometimes I don't feel the sad emotion until the words just pop up like a cartoon thought bubble over my head while I'm making a salad. Maybe it's just the shadow of grief that C.S. Lewis describes in A Grief Observed: "Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief.”

It's interesting the way that it starts as a thought which in turn, if I entertain that thought, becomes the emotion. And once the sadness has settled in, I am learning I can decide what to do about it. If I can notice and be aware of it (which seems to take practice), if I can stay present which has the affect of shutting off the thought cycle in my mind, then usually I can just watch and experience it until it goes away. I may still cry. I may still have tears. My eyes will burn, and my nose will turn red. It's not about resisting the emotion once it begins, it's about being aware enough that I can identify it, say "I see you", and then wait. And whenever I have tried to do this, the sadness usually fades away. I like that its something concrete I can try to do.

But then again, sometimes I don't want it to go away. I want to wallow. I want to feel the misery. I want a reason to eat the ice cream. I want to let my thoughts run away and indulge my mind in all that's wrong with the world and feel the weight. I want the cleanse. And that's ok too. The point is I can choose. And I am aware that I can choose. The hard part sometimes is just remembering that I can choose.