I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Thursday, October 29, 2015
Wednesday, October 28, 2015
Bed
How a depressed person thinks:
Lately things have been rough for me. In my head. In my mind. When I have money stress it pushes me down a dark tube into depression. Because I can't do regular jobs like most people. Because my disabled child may be fine today, nut not tomorrow. Because I had a job but now they can't pay me and I'm behind. A lot. I am helping Sarah go to Italy for school. No matter what it takes. No matter what else has to suffer. She gets a class credit for going and she is a brilliant kid who deserves it. So I will somehow make the payment. But it's the rest of life that has made me want to retreat to my bed.
Everyday when the kids are off to school and John is off to work, I have coffee and it's lonely and dark in the house. Except for my animals. All I want to do is go back to bed. Today, I did. I would still be there if I didn't have to pick up Thomas.
I feel like my situation is too hard for me to manage. I can't find my superwoman cape anywhere. Maybe there is crypto it's under my house. But all I want to do is sleep. I can't go shopping (no money) I should be going to probate court for Daniel, cleaning, cooking, scheduling appointments, calling equipment suppliers, exercising, looking for a job, being.happy jovial person. There are so many "should be doing things". And John adds to my list, you can fold the towels today. Ok. I brought them up from the dryer. But I don't feel like folding. I don't feel like eating. Actually I had an apple today and it's 2:38pm. And I am not hingry at all. Considering I'm a fat person this is highly unusual.
My bed has lots of pillows. And soft lights above the headboard. I can block out everybody in my bed. Henry stays with me and snuggles. I should be put walking. Today it's raining so I guess that wouldn't have happened.
I should be praying for help or calling a doctor about my psychosis. But I'm just numb. I'm tired of trying to do the money and th money never being there. I feel hopeless because I worked for a month and didn't get paid. The bank says I am overdrawn. I don't have a debit card. I'll never go into the branch again. They were so rude to me last week.
Nothing is perfect here. This life doesn't fit into the square Holes of regular normal people. Daniels mic key button clogged this morning. I cleared it with a tooth pick.
I can't remember the last time I had my hair colored. It looks awful. Really awful. I think it's been 3 days since I showered. I will shower later because I feel gross. I am gross. My job told me not to come to work anymore right now. Money is tight. It's tight all over I guess. Except for the Mom I am looking at in the parking lot of my sons school in her Giant fancy Lexus sport utility. Chatting on her phone. Her nails are amazing and she has gorgeous hair. I wonder who she is talking to becaus she looks happy. I'm a grunge pit. My pants have bleach stains and my sweatshirt is torn. I used to like to dress now. Now I just wear old clothes.
My bed. If I went back there right now I would fall asleep instantly. It's all I really feel like doing. It's pouring rain outside.
Thomas is helping the middle school band. Sarah texted me that she got an interview with CBS.
There are so many things I should be doing. Join wants me to apply for full time HR jobs. I don't see how that could work. But he's adamant that it should go back to how it was before. Back before Daniel was medically fragile and I made a lot of money. But it's different now. The stress is greater.
When I go out I pretend. Smile. Look happy. I have $10. Extra bucks. I should go buy some chocolate. And go home and go back to bed. My favorite time of the day is bed time. I love my bed. And al my pillows. I feel loved and safe there. I'm waiting in my car. For Thomas. It's raining. I just want to close my eyes and sleep. Right here. In this car. But I would prefer my bed.
Tuesday, October 27, 2015
Monday, October 26, 2015
Sunday, October 25, 2015
Saturday, October 24, 2015
Saturday, October 17, 2015
Tuesday, October 13, 2015
Saturday, October 10, 2015
Friday, October 2, 2015
Thursday, October 1, 2015
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