I just don't understand why some things happen. You know that saying, "everything happens for a reason?" Do you believe in that? How true could that be? What exactly is the reason for my dystonia? For Cody's 22Q? It's overwhelming and stressful and there are so many days I have anxiety and don't know if I can go on. But you know that feeling when your child looks into your eyes and smiles? Or when your toddler puts her arms around you and hugs you tighter than you thought she had the strength to do and says "I love you mommy". These are the moments I live for and these are the kind of days I know I will never give up and I will do everything in my power to help myself, help my children and help my husband deal with us.
I often worry I am not a good enough wife or mother. I worry about what my kids think about me and I worry I am the reason for my children's problems. Does Cody have 22Q because of something I did? Or didn't do? Or is this one of those things that "happened for a reason?"
On Saturday night, my left hand curled in. Every time this happens, I want to punch a wall and scream at the top of my lungs. It angers me, and stresses me out. Its so much harder to do EVERYTHING with one hand. I try so hard not to let people see the frustration behind it. I worry I annoy people with it. I worry how stupid I look and how pathetic I sound but really, deep down all I feel is pain. It feels like a severe muscle spasm cramped up in my hand. I tell myself to open my fingers, and they wont move. My wedding ring is digging into my hand, making it feel like a dagger stabbing the muscle spasm. It's simply not fun but I sometimes wonder what my life would be like without DBS because I know it would be so much worse. I should be grateful that this is all I have. If I wasn't able to just go get a "tune-up", what would I do?
Yesterday Hailey had her tonsils and adenoids removed. I got to back with her to the OR and hold her until she fell asleep. There were about 5 doctors and nurses standing in a circle around her singing the wheels on the bus. It's so amazing how thoughtful and caring the staff is at Boston Children's Hospital. They made her feel so special and she didn't even cry or try to push the mask off. She was done in less than an hour and Ryan and I got to go see her in recovery. She was pretty out of it and screaming in her sleep. I got to sit with her in my lap as she tried to wake up. I got very weak and dizzy and ended up on the table with oxygen and apple juice. I felt so ridiculous. I sat there in the bed as all the doctors and nurses walked by and stared. It was very embarrassing but I quickly recovered and we got to bring Hailey home by early afternoon. She has been very good and wanting to eat everything! I need to start getting creative with soft foods for the next 2 weeks!
Next will be Cody. He is going in December 12th to have his tonsils and adenoids removed, a triple scope and possible tubes put in his ears. I am hoping he does just as good as Hailey. We will have to spend a few nights with him since he is so little and because of his history.
In between all of this, we will enjoy Thanksgiving, Christmas and New Year's! Let's hope and pray everything gets better with my dystonia, Hailey's snoring and breathing, and everything with Cody. And if it needs to get better for a reason, let that reason be because I need it to!
I often worry I am not a good enough wife or mother. I worry about what my kids think about me and I worry I am the reason for my children's problems. Does Cody have 22Q because of something I did? Or didn't do? Or is this one of those things that "happened for a reason?"
On Saturday night, my left hand curled in. Every time this happens, I want to punch a wall and scream at the top of my lungs. It angers me, and stresses me out. Its so much harder to do EVERYTHING with one hand. I try so hard not to let people see the frustration behind it. I worry I annoy people with it. I worry how stupid I look and how pathetic I sound but really, deep down all I feel is pain. It feels like a severe muscle spasm cramped up in my hand. I tell myself to open my fingers, and they wont move. My wedding ring is digging into my hand, making it feel like a dagger stabbing the muscle spasm. It's simply not fun but I sometimes wonder what my life would be like without DBS because I know it would be so much worse. I should be grateful that this is all I have. If I wasn't able to just go get a "tune-up", what would I do?
Yesterday Hailey had her tonsils and adenoids removed. I got to back with her to the OR and hold her until she fell asleep. There were about 5 doctors and nurses standing in a circle around her singing the wheels on the bus. It's so amazing how thoughtful and caring the staff is at Boston Children's Hospital. They made her feel so special and she didn't even cry or try to push the mask off. She was done in less than an hour and Ryan and I got to go see her in recovery. She was pretty out of it and screaming in her sleep. I got to sit with her in my lap as she tried to wake up. I got very weak and dizzy and ended up on the table with oxygen and apple juice. I felt so ridiculous. I sat there in the bed as all the doctors and nurses walked by and stared. It was very embarrassing but I quickly recovered and we got to bring Hailey home by early afternoon. She has been very good and wanting to eat everything! I need to start getting creative with soft foods for the next 2 weeks!
Next will be Cody. He is going in December 12th to have his tonsils and adenoids removed, a triple scope and possible tubes put in his ears. I am hoping he does just as good as Hailey. We will have to spend a few nights with him since he is so little and because of his history.
In between all of this, we will enjoy Thanksgiving, Christmas and New Year's! Let's hope and pray everything gets better with my dystonia, Hailey's snoring and breathing, and everything with Cody. And if it needs to get better for a reason, let that reason be because I need it to!
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