I feel like I’m getting attacked every which way. It’s as if the fan just keeps throwing out that famous proverbial sh*t.My mother has had some serious health scares since my father moved on to the next world. It’ll be five years this coming Independence Day and I have to lay it true that the weight of what he covered in our families lives has not been easy to take up. It’s like a black hole got shot amongst us and it’s slowly seeping and sucking to take things, or add things of burden and hardship.
This past week my mother was trying to get back on her feet in the ICU wing of the hospital. Her oxygen levels where extremely low and my sister said that our mother was blue when she came to get her. Getting her oxygen level up is our immediate need. Then on top off the doctor believed she has congenital heart failure. She doesn’t even stay home a day when the at home visiting nurse believes my mother’s having a heart attack and takes her back to ICU. She didn’t have one, but my mother said it felt like her chest was caving in. She never felt anything like it. We celebrated her birthday at the hospital.
The pressure and immediate fear of loss is so heavy. Even in my sister’s household. Her husband is seeking emergency surgery this next week. What is going to happen? The stress the family is under is overwhelming.
My brother is at his wits end in a means to provide and get his family in order while battling for the rights he has with his first child from a previous marriage.
I see my husband and partner less and less, I know he feels like he needs to step up and try to cover all that my father once did. And now there is added pressure when we consider my sister and brother-in-law’s health and medical bill situation. My husband has the heart to want to cover us all, but he is one man who has his own household needing his attention and focus.
And I can’t even be the supportive sister/aunt/daughter that I know I’d want to be and need to be for the people I love in my life. All my time, all my breath is taken up by my children. I feel I have nothing left of me to give! I can’t be that listener, can’t give that care taking because that is all I do. By the end of the day it’s all been taken from me already. What more do I have?
I can’t focus on loving on my mom or comforting my sister and family because now all my attention and need is pointed to my son. Our Samwise.
Sometime in the fall he started getting these bumps on his skin. I took him to the doctor when they refused to clear up and she[the doctor] cermised that it was a bacteria infection he picked up from the girls’ school interactions. He would grow out of it.
After a month or two he seemed to clear up. Then after the new year the bumps reappeared and I did what I could, I’d clean him and moisturize his body. Then he got some more and he wouldn’t stop scratching. I did all the research the Internet could allow me. Every morning I would discover new bumps emerging. I took him back, I knew in my gut it wasn’t what the doctor first thought it was. We did blood tests and she recommended me to a specialist.
We went there and I cried as my son clung to me as he underwent a biopsy. My little boy isn’t even two and already has had stitches.
The bumps have exploded all over his boy. No matter the amount of soothing baths I give him throughout the day, the moisturizers I lather him in, the medicine I apply…he is in constant discomfort.
Some of the tests have come back and the specialist has concluded he has psoriasis. Psoriasis. My little boy…
There is apparently no cure. I’m told he’ll have to be treated for the rest of his life. I don’t want to accept that.
Everything is harder. Everyday is a constant battle to keep him under control. My every moment watching to keep him from irritating his skin more. And I fail everyday. Everyday there are new bloody patches. Everyday he has a several melt downs when I need to clean or apply his creams. Then I melt down at how helpless I feel.
Then there is how people react to him if we go out of the house. It’s nearly summer in Texas and I have to dress my son in long sleeves and pants to keep him from scratching and others from looking.
People stare. If kids are in the same area they grab their children to keep away from him. I even had a mother who was pushing a stroller, her arms full, go out of her way to open another door to side step my son who stood by the door I had held open for her.
Strangers, Latino’s in particular, used to come up just to touch my son’s novelty white gold hair. Today a women reached out her hand to ruffle those locks like so many people have done before, but recoiled her hand once she looked at him. I felt my blood boil before a wave of sadness struck me in the gut.
I try to bear all the questions with grace, but i get so exhausted. I’m so sad for my boy. He was supposed to get to do swimming lessons this spring, but it’s out of the question. He was supposed to have a birthday party at the local splash pad, but he won’t be now. He would be shunned and I couldn’t stand to witness that. I feel so helpless and over my head.
Everyday is beyond what I think I could handle. Everyday my son cries and he is in such need of my attention and love that I feel like I’m failing the needs of my other wonderful children. I don’t have patience for them. I blow them off, I don’t listen to the things they want to talk about, about their day. I’m not even breast feeding regularly. I give my baby a bottle and walk away to tend to my other son’s needs. Even now, I’ve spent too much time on this, I know. I’ve looked down and witness yet another bloody sore on my little boy’s skin. With each cut that means his immune system will go into over drive, which means more bumps will show themselves in the morning. Even in front of my eyes, if he gets too stress in a moment I can see the sores become red hot and inflamed.
I talk to God. I feel so distant from His voice. I tell myself that when God is silent that means He is building me and my seeking of His presence.
I thank Him for my son. I thank Him that our boy isn’t terminally ill. That he is smart and beautiful and loved. And then I thank Him for healing my boy of this terrible affiliation. I speak things as though they were. I praise God for His healing touch for allowing my son to out grow this pain. I won’t accept this life-time psoriasis for my son.
Because if I’m not hopeful, if I’m not idealistic- I wouldn’t be me. I wouldn’t have anything to hold on to in my desperation.
Psoriasis is his immune system attacking himself. The symptoms are similar to eczema, but like eczema blown up on steroids. My husband gave me hope, and hope in my talks with God. He, my husband, had bad eczema as a child but grew out of it. I’m holding so tightly to that. And to God’s promise over my life. I’m to have double portions of blessings and I claim that for my children and my children’s children.
Please keep me, the family, in your prayers. We need every encouragement out there.