I have a lot of time on my hands. A little too much sometimes. A thought occurred to me during a sleepless night (once again another contributor to this extra time). I’ve never really introduced my parents.
Yesterday I had my port placed and we couldn’t safely get me up the stairs so I slept on the couch. Somehow my mom figure out how to add tables and a foot stool so I couldn’t fall off. We didn’t sleep much. My mom slept in a very uncomfortable chair to watch over me. My dad came to swap out at 4:30 am and slept on a hardwood floor.
My Mom: Madre, Mom, Mum, Momma, Mummy, Mommy, and of course MELINDAAAA. I’ve always had health issues. She’s always stepped up to the plate to be there for me. But this time around it’s killing me to see her so stressed, scared, and worried about me. She spent nearly 6 weeks with virtually no sleep as I went through withdrawal and my symptoms got worse. I’ve watched her give up her limited free time to be here with me. She’ll eat what I eat in solidarity. She set up my apartments furniture and gone shopping for what I needed. She put all my stuff away when i had to move home. She’s cleaned and cleaned and cleaned to try and make my space at home safe and sanitary. She’s held my hair while I’ve been sick, tried to save me from falling on the floor fainting, and come to every single appointment to take notes for me. She’s helped bath me, dress me, drink water, and just sit up when I can barely move. She’s exhausted but never lets it show. She’s always been there for me and still is now. I don’t think I will be able to ever pay her back for the amount of care she’s given me. Maybe when she’s actually old and gray I will be able to just scratch the surface of giving back what she’s given to me.
My Dad: Dad, Daddy, Daddy-O, Father, CHUCK. My father is a strong man. He’s always someone who has my back. He may not be as familiar with how to help me during all this, but I know he’ll fight for me. He came every day to work with me while I still could to help me deal with the physical aspects. He never complained. He’s moved me into and back out of an apartment, and never complained. He won’t give up until we have an answer, a treatment, a solution, something. He’s the one who pushes me to get up in the morning. To eat something. To try and walk. He’s constantly trying to find a way to improve my situation. But it’s hard to watch him seem helpless. He’s having to learn things no father wants to, but he’s doing it anyway for me. He’s pushed as much as he can to help get medical teams on our side. He’s also probably paced a few hundred miles worth in the past few months.
My parents have given up their lives for me. Each in their own ways. I’m lucky, blessed, fortunate, and safe thanks to them. My parents have never given up on finding the source of the problem. They have begged, pleaded, and pushed over and over again to get me help. I know that they will do anything and everything they can to help me in this fight. They have always put me first, and once again have gone beyond. I’m out of funds, out of work, and out of commission. Yet I have little to fear. I know they’ll keep finding ways to get me the right, safe foods. They’ll find a way to pay for the hundreds of dollars worth of medications I need. They’ve stepped in to help manage the bills, pay them off even if they can. They’ve stepped in and stepped up more than anyone I know.
I may be scared a lot, but I try not to show it until I can’t anymore. My mother will sit up with me or stay in my bed (which leaves her sore the next day) just to make me feel safer or to let me rest. My dad has made at least 100 trips to stores trying to find what I need. He’s had to pull me from night terrors and nightmares. I don’t think I could be doing this without them or their strength. I don’t think I would even be here if it wasn’t for their love and support throughout this hell journey.
Love you guys.
Dear Jessie, know that prayers continue for you as you recover from last week’s surgery and continue your way through. You are a powerful, brave human being and loving daughter, and you have reached out to find others who know the contours of your story because they are living with this rare condition too. May at least one single blessing reach through your pain and struggles today. Love, Rev. Nancy
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