Today I was spending some time in the backyard with my niece. She was in the pool, and I was soaking up the sun in my wheelchair, about two feet away from the pool’s edge. It was a beautiful, sunny day and we were laughing and having fun, like we always do together. I was counting how many seconds she could hold an underwater handstand, she’d come up for air and then go back under, trying to beat her record time of 19 seconds. After several minutes of this, she started swimming towards the edge where I was sitting. She popped her head up and looked at me with her beautiful brown eyes, but they were full of sadness.

“What’s wrong?” I asked, “Are you hurt?”

“Auntie, I don’t want you to leave.”

Her voice was meek and I could tell she was holding back tears. I was caught off guard by her sudden sadness. I had no plans to go anywhere; I didn’t know what she was talking about.

“Baby, I’m not going anywhere.” I assured her.

“If the lady says you can’t live here, she will take you away.” She responded, tears in her eyes.

Cold, harsh reality slapped me across the face as I realized what she was talking about. My caseworker from the state was coming that afternoon to check my living situation. We had spent the morning making sure the house was spic and span, and explaining to my niece that it needed stay clean until this lady left. I don’t know how she came to the understanding that this lady could remove me from the home if that’s what she thought was best, but my niece is a smart cookie, and she wasn’t wrong.

“Oh, baby, she’s not going to take me away. She is just checking out the house, they only take people if they aren’t safe or if they aren’t cared for but your mommy always makes sure I’m safe and I’m cared for. So I’m not going anywhere, and I don’t want you to worry or be sad because there’s nothing to worry about. We were having so much fun, let’s keep having fun!”

With that, I got a smile as she dove back into an underwater handstand. I smiled back and started counting out loud.

 

The caseworker came and left, and everything was fine. But I still can’t shake the feelings that were stirred up by the conversation with my nice. To be honest, that worry and uncertainty that she was feeling, those same feelings have been eating at me a lot lately. Every time my brain has the freedom to wander, I end up at this spot where I feel anxious, uncertain and worried about my future. I can see where I want to be, but that place is just out of reach; it’s like a mirage.

 

I hate complaining because I am fully aware that I am blessed. But, like I said, I can’t shake these feelings and I feel compelled to share them (maybe it’s part of His plan?), so please, bare with me.

 

 

As a disabled person, I have never felt so discouraged, so helpless, so insignificant. This isn’t me hating on myself, I know I have a lot of talents and skills  to offer, given the opportunity. The problem is that opportunities for people with disabilities are few and far between. We are not just limited by what we can physically (or cognitively) accomplish, but society often limits us by not seeing us for who we are or accepting us as valued citizens with a lot to contribute to the world.

 

I wasn’t born into wealth, my parents scraped by, using all their resources to provide for their kids. So here I am, in a position where I depend on government programs to live. It is scary to depend on this entity when I feel like the decision makers of this country don’t see any value in me; I am just an expense, a line on the budget that needs to be cut. I can’t even watch the news anymore. Hearing the proposed cuts to Medicaid and Social Security sends me into a panic. How can these people even consider cutting back or eliminating programs that people’s lives and livelihood depend on? But it happens, and it’s been happening.

 

The overwhelmingly cynical thought is killing me on the inside, that at the end of the day, money is more important than human life. I cannot live without the programs that provide me with a monthly allowance for rent, food, gas, and bills; with nurses and care givers to take care of all my physical and medical needs; with medical supplies like wheelchairs, feeding pumps, and breathing machines. The people in charge of these programs dictate the quality (and quantity) of life for me and countless others living in similar circumstances. It scares me to no end. These feelings creep up and they consume me, it seems impossible to extinguish them.

 

All I can do is remind myself that I’m not in charge, and that’s okay. I get comfort from knowing that God made everything beautiful and perfect in His sight. He has a reason for giving me this life and this body. He has a plan for everything and everyone, and with Him beside me I will get through anything that happens. With all the uncertainties frequent anxiety, I can live with joy because of His love and grace.