The Kindness of Strangers

Lately I have been dealing with a lot of bureaucratic red-tape.This means that I am literally relying on the kindness of strangers. No joke. I'm trying to qualify for IHSS/Protective Supervision for Truman which is a very complicated and slow process. If I were completely honest with myself, I would apply just for my own needs. But I guess I have a hard time admitting that I am that limited.

This whole process has been challenging for several reasons. Sure there's the research, the tons of paperwork, the endless phone calls, and incompetent or uncaring staffers to handle...but that's not what is really bothering me. What bothers me, exhausts me, worries me, and pretty much irritates me is this:

I feel misunderstood and unsupported by almost everyone I've reached out to. Even my dear family and closest friends seem to have a hard time understanding how and why these programs exists or why we would need them. I find myself repeatedly explaining and justifying...and often feeling somewhat ashamed. And this is not a new situation. I've been dealing with this attitude as long as I've been on disability.

The subtle inference that keeps coming up is that this is some sort of abuse of the system...or that these programs shouldn't be a part of the system to being with. Basically that taxpayers should not be responsible for the care of individuals with disabilities.

I know that the people making these comments have nothing but deep love and caring for me and my family, but I have to be honest and say that some of what is said hurts my feelings. I often get the impression that a lot of people in my life (even strangers I have brief contact with in other circumstances) feel I could and should be doing more to provide for myself financially.

I'm guessing the reason for this is that they really only see me or talk to me when I'm functioning pretty well. They don't see all that I go through just to make it through each day.

They're not here with me in the day time when I'm forced to lay down (not just sit, but actually LAY down) to keep my swelling under control.

They're not here when I have to dart out the front door to race to get to Truman before he makes it to the street.

They're not here sweeping up glass or plastic bits from the latest tantrum-induced tornado of destruction.

They're not here cleaning mud and sand out of Truman's mouth for the umpteenth time because he's decided to have a little “snack” in the yard.

They're not here as I fill out reams of paperwork, track page after page of behavioral data, create visual supports, write social stories, read articles, blogs, forums, and books constantly searching for other ways to help Truman.

They're definitely not here in the middle of the night when Truman is up running around the house, yelling, throwing things, demanding a movie, scripting incessantly at the top of his lungs at one, two, three, four, even until five o'clock in the morning.

They're not here in the afternoons when I'm struggling to make it through those last few hours until Dave gets home before I take my first pain pill, just so I can know for certain I wont be compromising my ability to care for Truman.

They're not here in the evenings when I am fighting the urge to lock Truman out of my room just so I can protect myself from his sensory-seeking behavior that injures and exhausts me.

They're not here when I am caring for my wounds, often bleeding profusely, as I massage the lymphatic fluid out of my damaged tissues.

They're not here well into the wee hours of the morning as I am fighting insomnia caused by a combination of pain, medications, hormones, and a child with their own sleep challenges.

They are not here, so they don't know what it is really like.

And I guess for that reason, I shouldn't really expect much more understanding.

But I do expect a little less judgment.

As someone who is extremely creative, ambitious, energetic, and innovative, the way my body has let me down is a disappointment I truly cannot articulate. Coupled with that feeling of sadness is a sense of inadequacy as I stress over my inability to properly provide for myself and my child. I would love nothing more than to be able to rejoin the workforce. I ache for the human contact, the feeling of purpose, and of contributing. The feeling I have is that somehow there is value in what I produce. I know what I am doing with Truman is incredibly valuable, but no one sees it, no one acknowledges it. I don't get the feedback I crave for all the hard work I do. Believe me, if there were any way for me to work, I would do it. I have searched high and low, but as of yet I have been unable to discover another way for me to put the supports in place that are needed in our family.

Right now, IHSS seems like our only option.

So...for those of you who still have questions, I am providing a very informative link to explain the IHSS program and what it takes to qualify. I hope you will read it and ponder the ramifications of what having this support will really mean to the function of our family. I honestly feel it will change our lives for the better.

Please join me in asking God to grant us His favor in this matter. We are eager for a resolution and to move forward. As He says in Jeremiah 29:11 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."

And beyond that, try to remember what Thumper's Daddy taught him...”If you can't say somethin' nice, don't say nothin' at all.”


Grace & Peace,
-Hannah