Tonight, my heart is heavy.
This feeling just sits there. It just sits, like a dark shadow, in my stomach. I can’t name it, only feel it.
And it doesn’t feel nice.
Insurance. Doctors. Therapies. Advocating. Forms. Worrying.
How is there supposed to be room for cooking? Cleaning? Fixing?
Self care? Ha. I’m lucky to have time to shower.
It’s midnight. And, tonight, I’m heavy with a burden no one should have to carry.
#medicalmom #Rare #PID #HealthInsurance #Apraxia #AirwayDisorder #chronic
I start to get anxious just thinking about it. It should be something so simple, but it’s not. The careful planning, assessing and attention to details is vital. What’s happening before this? What’s coming up in the week following? It’s not a question of if she’ll get run down. It’s not a question of if she’ll get sick. It’s a question of when. And…is that birthday party, week at day camp, sporting event, etc actually worth it?
But here’s one of the worst parts: you won’t get the weight of our decision. You won’t know why we couldn’t play that night or why we skipped the game. Because, the fact is, you don’t understand that she’s sick. Not really.
You know we have the appointments. You know we get blood draws. You even know we spend nights out of town to see our doctors. But, you don’t understand. Your kids get sick, too. Your kids also get tired and emotional. Plus, she looks just fine.
She looks fine. But, that’s one of her superpowers: invisibility. She saves it for us. She keeps it closely guarded. If you ask her how she’s feeling, she’ll say, “Good.”
What you didn’t see was waking up and complaining she was tired. What you didn’t see was the terror in her eyes when she had blood in her stool- again. What you didn’t see was her complaining her belly hurt, or worse- getting sick. What you didn’t see was her retreat upstairs to lay down instead of play. You didn’t see her struggle at school because she “just couldn’t think “ or she’s “just not feeling herself.” The simplest questions tripping her up. What you didn’t see was her breaking down and crying over and over again from 4 pm on because she's so tired that she’s an emotional wreck. You didn’t see the multiple medications she’ takes to help her feel ‘normal.’ You didn’t see her as she got yet another a fever, yet another antibiotic, yet another doctor visit. And, you didn’t see her sleep a full 12 hours just to get up and do it again.
She has a superpower of invisibility. You may not understand why we’re not coming, but I promise we would be there if we could.
I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.
For more information read my petition…
www.change.org/p/janet-woodcock-m-d-accelerate-the-developme...
iamals.org/action/promising-pathway-act
** TAKES LESS THAN 3 MINS COMBINED TO COMPLETE **
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