I don't have a title except a weakness maybe
By now, you know that I took Prima on a four day trip to San Diego and filled up our love buckets to the brim. It was a bit of a respite from our everyday worries.
Now, we are back and reality is still there. Segunda is sick. She is coughing incessantly to the point of vomiting and she has a low grade fever. And I just want somebody else to come and take care of it for me. Husband is away on business. I have to get to work, and the second she gets sick, panic sets in about my job. Will I lose it if I have to stay home with her because I just took 3 days off of work? She's been sick for 6 days. When do we see a doctor? Why can't she stay healthy for longer than a few days? I've been back for a little over 24 hours and I'm already a panicked, tearful, frustrated mess. I don't know what to do for her. I don't know how to make her well.
But I got to have a respite from it all. Segunda doesn't get a respite. She lives her life 24 hours a day. She never gets a break from her disabilities. Never. She doesn't get to just walk away and fly off to the beach and leave it all behind. But I did. And now I'm whining my way back into life frustrated, tearful and panicked. I thought I was made of stronger stuff, but I'm not. I'm weak. I'm a puddle on the ground waiting to just seep away into the cracks of the earth.
I'm so angry that Segunda was saddled with her myriad of disabilities. She doesn't deserve it. Nobody does. I read an article yesterday that said the world doesn't bend for the disabled. It doesn't. When Prima and I were traveling, I thought about Juliana and how difficult it is for her to maneuver around in the world. At every turn, we were able to sail right through ... lines, metal detectors, climb stairs, eat whatever we wanted whenever we wanted, and on and on. All of those things are hard for her and some of those things are impossible for her.
I'm ashamed of how I feel. I've become very aware of ableism and privilege with her in my life. I guess I got tired. I guess I needed help. I hope I can be all that I need to be for her. I hope that these moments of weakness are few and far between. Where is my backbone? Where is my resolve to knuckle down and get back in there. She is a child who deserves the best life has to offer and I'm her capable mother who can help that happen. Time to pull up those boot straps and get back in there. Am I a "special needs" mom? I guess so. I pretty much suck at it, but every day I wake up trying like hell to fight for her and her needs. I'll just keep at it and hope I improve with experience.
Now, we are back and reality is still there. Segunda is sick. She is coughing incessantly to the point of vomiting and she has a low grade fever. And I just want somebody else to come and take care of it for me. Husband is away on business. I have to get to work, and the second she gets sick, panic sets in about my job. Will I lose it if I have to stay home with her because I just took 3 days off of work? She's been sick for 6 days. When do we see a doctor? Why can't she stay healthy for longer than a few days? I've been back for a little over 24 hours and I'm already a panicked, tearful, frustrated mess. I don't know what to do for her. I don't know how to make her well.
But I got to have a respite from it all. Segunda doesn't get a respite. She lives her life 24 hours a day. She never gets a break from her disabilities. Never. She doesn't get to just walk away and fly off to the beach and leave it all behind. But I did. And now I'm whining my way back into life frustrated, tearful and panicked. I thought I was made of stronger stuff, but I'm not. I'm weak. I'm a puddle on the ground waiting to just seep away into the cracks of the earth.
I'm so angry that Segunda was saddled with her myriad of disabilities. She doesn't deserve it. Nobody does. I read an article yesterday that said the world doesn't bend for the disabled. It doesn't. When Prima and I were traveling, I thought about Juliana and how difficult it is for her to maneuver around in the world. At every turn, we were able to sail right through ... lines, metal detectors, climb stairs, eat whatever we wanted whenever we wanted, and on and on. All of those things are hard for her and some of those things are impossible for her.
I'm ashamed of how I feel. I've become very aware of ableism and privilege with her in my life. I guess I got tired. I guess I needed help. I hope I can be all that I need to be for her. I hope that these moments of weakness are few and far between. Where is my backbone? Where is my resolve to knuckle down and get back in there. She is a child who deserves the best life has to offer and I'm her capable mother who can help that happen. Time to pull up those boot straps and get back in there. Am I a "special needs" mom? I guess so. I pretty much suck at it, but every day I wake up trying like hell to fight for her and her needs. I'll just keep at it and hope I improve with experience.
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