A Child’s Perspective of the AHCA and Becoming an Orphan

The affects #AHCA and what it is doing to our children, is cruel, inhumane, and is mortifying to the children who will be orphans.

I blog a lot about legislation, being informed, proactive, and have personally fought as much as possible to live. I am not convinced that the outcome will be as I, and many others had hoped.
What the #AHCA is doing to our children, is cruel, inhumane, and is mortifying to the children; whose parents will be left without life sustaining treatment. The fear of becoming an unwilling orphan because of the Pre-existing exclusions of the #AHCA, is a reality for children of the chronically ill.

Children who live with a chronically ill parent are different than other children. They certainly are very aware that their parents and lifestyles are different. My child confided last night that the politics scares him horribly, that the government will do horrible things to his mom.

Our home does not have TV, and is not exposed to the constant morbidity which the news would bring. We are living in a new generation, kids are exposed to a myriad of research via online. As well, my child attends school with other children whose parents are medical field professionals, of all types. The children talk. The children are terrified. The children are victims more than anyone. They are facing the reality that they will lose their parent. In my case, this is true, as without the IGg that I receive, My chances of living to see my child’s 8th grade graduation are slim.

Six months ago, the last thing we were concerned about was when my life sustaining plasma would be discontinued. We had our own way of normal. It certainly was not a constant non-stop worry about when the ax will fall. I asked my child why he didn’t tell me of his fears. Well, the stuffed animals listen to his fears and worries, and he reads the Bible. He doesn’t want to know any more bad news. Although, it looms over his head non stop. I’ve seen the withdrawal from regular playmates, the animosity of why his mom sick. The actions of how can this happen to the one he loves more than anyone, his mother.

Tonight, he came to me, laptop in hand. Said, “please listen to this mom, this is you. This song describes the USA, and what will happen” and sang it. Tears in his eyes, as I choked back my own tears. I wrote down the name of the following song titled, Sign of the Times by Harry Styles.

If your chronically Ill, you will relate to this, on many levels. I returned to tuck him into bed, and he was then reading the lyrics to the song. I had to tell him, “please don’t listen to this before bed”. As he was choking on the words. Our children, who do not in a million years deserve this agony. Our job is to protect them, comfort them, and give them as much security as humanly possible.

There are many metaphors within this piece, what strikes me, is the lyrics, “Someome whose going to die but was afraid of death whose not ready to go away”. The Sign of the Times, was debuted on 4/17, album released 5/12.
*No endorsement of the artist or song intended.

Challenges of Being a Parent With a Chronic Illness

All I ever wanted was to be a mother. And I can’t even do that right. It’s another loss in a string of losses. Challenges of being a chronically ill parent. Part One

“I am a bike rider. No training wheels”! Mom missed it 🙁

>Part One: Originally blogged: 10/25/15

My youngest, recently learned how to ride a bike, I was not able to see or teach her. She recently had a fall party at school. I always volunteered at school, until the CVID diagnosis. Schools are germ factories. I did not know how to tell her I would not be there to volunteer.

I did.
She accepted it.
After one year post diagnosis, I guess she is beginning to stop asking.
A poem that captures my feelings everyday…applied to my guilt and sadness of being a parent that has a chronic illness.

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