Finding Stars in the Dark Series: Part II

Choices. It’s a constant life obstacle everyone faces. Too often all families have to choose and prioritize things that are necessities. Very few families have the luxury of not worrying about things. Too often families have to choose between therapies, what therapies they will pay out-of-pocket for if insurance doesn’t cover it, which medicines to get (especially if a generic isn’t available and the cost is prohibitive), whether both parents have to work (or can work) and if they should apply/fight for benefits.

The paperwork handed to us to fill out at every appointment is overwhelming and then if we are seeking assistance they have triplicate of everything. On paper, if two adults in the house are working like ours, it can look like they should be making it and doing well, fantastic even maybe, if you only look at the surface. Which often is all any agency really looks at. Very few look deeper to see what a families needs are or what caused them to come to this choice.

If they don’t look deeper many of us sit on that fence of qualifying and being denied services or help. In some cases I’ve seen our family denied for being over the “income limit” by as little as $45.00 and then the sympathetic apology of they wish there was something that they could do to help but “their hands are tied”. Truth be told, I often then think, I’m too honest. I gave my median of hours worked as to be fair, they ask for all members (students included) of the household’s incomes and I give Christian’s, and I sit there and know that I value truth and honesty but I can see why some families would “bend” the truth to get help.

Sigh. There in lies my moral compass. Often it drives me to deep end of my thought process wondering why I apply over and over again for help. They tell me we are just fine. Yet, here I sit. I bust my butt day after day trying to pay bills, get Em therapies she needs, keep my family housed, fed and clothed and I struggle to do just the basics. I cry. I feel like I’m working and have nothing to show for it. NOTHING.

Then I look at my children. Both of them. I see a young man who is fairly responsible overall. I see him trying to step up but also following in the honesty is the best policy even if it gets him undesired results. I see a young lady full of compassion and making progress in spite of everything.

I look at them and think about how I want better for them. Not more. Just better. I don’t want it to wait 10 years or 5 years from now. I want better for them now. That’s why the tears will fall over these simple idiotic trivial things. That’s why it hurts when people think that you are doing “just fine” on paper therefore you are fine “in real life”.

It’s an uphill event for families like ours. It doesn’t matter if it’s financial, emotional, physical, whatever. There are tolls that we feel deeply. It’s uphill all the way. Pushing forward. Climbing obstacles. Not wanting it free or easy. Just easier with a helping hand. Like when you are climbing over rocks and someone reaches out a hand to steady you and help you a little but not do it for you.

At what point do we just collapse for the sheer weight of everything. Some days, it feels like it could be 1 step away or closer. It’s often a dark place to be where we are looking for hope anywhere we can find it. In that darkness, we look towards the heavens and see those bright points, stars above, and realize that somehow we’ll muddle through.

We’ll continue to juggle our bills, choose the therapies we can, and do the best we can. That’s the only thing we can do. The systems are flawed and broken and those not in our position don’t understand that most families aren’t looking for a handout, but rather a hand up. A steadying hand to balance the load. Those families that can’t get that do the best they can.

No respite care. No reprieves. Juggling and balancing and looking at some stars in the dark for hope. Loving our children the best way we can. With all our hearts.


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