In three months my disabled son will turn 18.
For almost 4 years I have struggled as a single mother with my own disabilities to raise three children completely alone. Two of those have special needs.
In three months my disabled son will turn 18.
He stood to lose his medical insurance at that time.
His medical bills have topped 1 million dollars a year in the past. His prescriptions, including insulin but not including diabetic supplies, are over $2k a month. This only includes the ones his insurance covers.
I've spent almost 4 years trying to figure out how to keep the power on and how to keep us in our home. I resorted to loans over the last 10 months that put me in debt for the first time in my life.
I live in a state that does not have resources to help provide the care that my children need. The eldest will qualify only for 4 hours a day, 5 days a week assistance in many areas he needs help with. Even then, it's debatable if he'll get qualified.
He stood to lose his medical insurance.
He has more doctors and specialists then I can count without resorting to a pre-made list.
His medical records would fill any file cabinet you have in your home.
He stood to lose his medical insurance.
Pause a minute. Look at your child. Imagine the impending doom that comes with the knowledge that, without medical care and medicine, your child will die. Imagine the fear that comes with the ticking clock, counting down each day, knowing that soon that may be the situation you are in.
Imagine the options that you consider in those situations. The sacrifice you and your child would need to make just to ensure medical care. The rift that would be created. The emotional damage that would be done with having to choose to place your child elsewhere.....your firstborn....just to ensure his survival.
I can not begin to put into words the agony I have been through. The tears, the fears, the stress of having to put on a brave front for the world while realizing you stood to lose that which you hold most dear. Never being able to speak your fears, simply because they were to horrendous to voice.
Yesterday, our three year journey of trying to ensure he would keep his insurance ended.
Yesterday, our three year journey of attempting to get our government to recognize him as disabled was a success.
Three months shy of his impending doom, we prevailed.
Under the stress of the last three months, I broke. I came to the point where my fears overcame me and I felt I could not take another step. I contacted my college instructors and told them that I had to drop out, despite my being only half a semester in three classes away from graduation. I had weeks left to graduate, a straight A average, yet couldn't take another step.
In despair I drew away from most everyone I knew. I snapped quickly and found myself on an emotional roller coaster that made me feel insane.
I lost motivation to do most everything and each day merely went through the motions.
I stood to lose my child. My choice was either death through lack of medical care....or placing him with someone else. I would have opted for the latter, and lost my heart in the process.
If you had asked me at 15 where my life would be at 38, I would have told you I'd be happily married with a slew of children running around.
Things don't always turn out the way you plan.
My instructors ganged up on me. They pushed me to finish, knowing I was so close. They encouraged me, extended deadlines, and opened up opportunities to maintain my grades. I honestly feel like they carried me when I could no longer take another step. They are true champions and heroes. God knows community college instructors don't get paid enough to become someone's personal coach. Yet, they did. The entire rest of my life I will remember what they did for me.
My friends stood up and let me vent, sometimes for hours. They endured my ramblings about things that didn't matter as I strived to keep my mind off the things that did.
My boyfriend looked at me often in confusion, but bit his tongue and stayed a means of support even as I shoved him away due to his lack of understanding my turmoil. He couldn't relate. His life has never seen hardship such as that I have endured. His compassion endured.
My children, frightened by my fluctuating emotions and their lack of understanding (because you can't tell your children your fears), rallied around me. They expressed their love even when I must have seemed unlovable. They increased their efforts to behave and help out around the house. They pushed themselves extra when I couldn't take another step.
There are many evils in this world. I've seen them, tasted them, felt them. Life can be cruel.
Often, there seems to be no hope and you breath the darkness in with a suffocating thickness.
Yet, somehow, even when you've lost sight of it, there is always a light at the end of the tunnel.
My son will have medical coverage. His future is assured.
There will be those that will read this and be infuriated that their taxes are paying for my son to stay alive. They will argue that Social Security and Medicaid is merely a drain on a system already bogged in debt.
Yet, each day my son will awake with breath in his lungs due to that system.
Each year I will bust my ass to give back to a system that is keeping my child alive.
I see our system's flaws in each child that dies of hunger. I see our system's flaws in the elderly that freeze to death in the winter. I see our system's flaws in the mentally ill that die, abandoned and alone in alley ways. I see our system's flaws in the domestic violence victims that are killed by their abusers. I see our system's flaws in the faces of those traded for sex, or sold into other types of bondage and slavery. I see our system's flaws in the hard working two parent homes that still can't afford insurance. I see our system's flaws in the mother that feels ashamed when her child's meals are paid for by the government.
Yet, yesterday, our system prevailed. Yesterday, the system so many complained about SAVED MY SON'S LIFE.
And I am eternally grateful. I am eternally relieved.
You see, when the system you live in stands up and assists you to survive, you learn a sense of gratitude that will live within you every single day of your life.
You learn to give back in ways that create a better system, a more humane system, a system that works.
I am beyond blessed. My child has an opportunity to live at home, with his mother and siblings that would walk through hell and battle Satan himself for him. My child will not have to worry about running out of insulin. My child will not have to worry that he can't get the care he needs.
I am beyond thankful that I was born in this country.
I am beyond thankful that my child will live because he was born in this country.
I am beyond thankful for those that are in positions to work and do so. I am beyond thankful that their hard work is keeping my child alive.
I am even thankful to those that would scorn him this benefit and complain of their hard earned taxes going to pay for my child's life.
Thank you. Thank you to the instructors that go out of their way to ensure someone is successful. Thank you to the people that show compassion and give support even when they don't fully, or even at all, understand. Thank you to the attorneys and judges that spend their days pouring over medical files they do not understand nor comprehend, yet research so that they can. Thank you to the able bodied that work. Thank you to those that show charity and give to others. Thank you to the fathers that actually take interest in their children and aide in their support. Thank you to the mothers that do the same. Thank you to the parents that share their struggles so that others know they are not alone. Thank you .... thank you .... THANK YOU.
Because, I could have never done this alone.
My family would have never prevailed alone.
I am indebted to each of you.
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