Darkness: the partial or total absence of light. Darkness can also mean the presence of evil.

It’s hard to be a light in such a dark world.

I am an able person in a disabled shell. I have two Associate degrees and am about to have two Bachelor’s degrees, yet I can’t even breath on my own. In medical terminology I am “total care”, which is as physically disabled as one can possibly get. I cannot feed myself, need help getting to the bathroom, and need medicine through my g-tube. I operate my computer with one small switch because I’m not strong enough to move my hands. I can walk someone through my care, but that doesn’t negate the fact that I require around-the-clock care from either my family, nurses, or private payed caregivers. I want and need independence to live my own life, and my parents run a business. I have 18hrs/day of “skilled” nursing during the week, and the rest is covered by people my family has hired. Finding qualified caregivers has always been the hardest part of living with SMA. It’s not easy letting strangers into your home, but I don’t have a choice. I’m beyond grateful that God has given me a wonderful family who would never put me in a nursing home, but I still need professional care. So I bring people into my life, trusting them with my life, and lately it seems that more times than not they let me down. Many don’t care about me, aren’t kind, steal from me, lie to me, if they are competent enough not to almost kill me. I had some medication turn up missing last week. I was certain one particular caregiver did it… She just acts crazy. Then this week my aid’s medicine turned up missing after relieving another caregiver. The last person I imagined would steal from me, I caught red handed.

I try so hard to be kind. I try to be Jesus. I listen to people’s problems, I don’t pitch a fit when the nurse won’t help me put away groceries or boil water for my ventilator because it’s “beneath her dignity.” But unfortunately this world is dark and cruel, and many don’t love my Jesus the way I do. As much as Satan would like for me to give up, God gave me this life for a reason and I trust in His perfect plan and perfect timing. In spite of struggles God has given me an amazing life, and when things get dark I search for the light, and it’s everywhere: it’s in my parents who protect me at all costs, it’s in my three year old niece who loves taking care of “Sissy”, it’s in my Vent Camp family who love me, it’s in my caregivers that actually care for me.

Life is hard, but God is good. Maybe you’re in darkness right now and you’re scared. Perhaps you’re having family troubles. Maybe a loved one is sick. Maybe you’re at a dead-end job. The light, or your blessings, are never too far from reach. Just look up.

“In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy”-1 Peter 1:6-8(NIV)

2 thoughts on “Darkness

  1. Amen, beautiful words from a kindred kind an humble spirit. Loving Jesus so hard, so much puts most in a position where we are tried differently and hurt hardest because our ability to love, and forgive so deeply leaves a deep ache too. God knows all,sees all hears all-and his wrath and vengence is like no other but so is his consuming love that all should come to Him and be saved. He put each of us here to be a light no matter how wronged we just keep shining like a city on a hill. You are a bright light with amazing gifts of the spirit. Glad to be in the army of the Lord with you. Keep on keeping on. Big hugs.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s