Friday, June 22, 2012

Thursday, June 21, 2012

Monster High makes the girl happy

Thanks to everyone who had donated towards Team Cassie, I was able to get Cassie the new Monster High playset the day it came out. Cassie and her friend Rachel did a video review, and you can see how excited and happy Cassie is:

(I can't get the video to imbed so it's just the link for now)

Wednesday, June 6, 2012

Hitting the wall

This post isn't strictly EB related. It's more about me than the kids. It's about how I have reached the point where I don't think I can cope with one more thing. Every time I say that, something else happens, and somehow my heart still beats and the world doesn't stop and I keep coping because ultimately, one doesn't really have a choice. But today I feel like curling up in my bed and never getting up again.

Kids are expensive. Moving is expensive. Raising a special needs child is expensive. Raising two special needs children on nothing but Social Security and an adoption subsidy is impossible. I put my son in an expensive private school because it was the only way I knew to save him, to save our family. And it worked. He thrived. He felt accepted and capable for the first time in his life and his grades rose and his self esteem improved and the anger gave way to the sweet, smart, funny guy that my son is today. But I made the decision to place him in that school before we lost our rental house and had to move, and our rent increased a great deal because we had a sweetheart deal before, and finding that again wasn't possible. Add in moving expenses like the truck, the gas for the truck, the reconnect fees for the utilities, and I started April well into the red financially. That carried over into May, and then Cassie got sick. I spent money I shouldn't have; I bought her dvds, I ordered pizza, I bought her quart after quart of mashed potatoes from Picadilly because it's her favorite thing to eat. And I bought diapers, and chux pads, and Miralax and Ensure and Coconut Oil and Lactofferin and liquid multivitamins and protein powders. Anything I could to try to get her skin to heal. I wasn't careful. I justified it by saying I was too tired to be careful. It was an excuse, and it came back to haunt me today when my rent check bounced. My third month here, and I've bounced my rent check. Take out the NSF fees and the late rent fees and well... I'm ruined. Well and truly. I don't have the rent money. And when I do get it later in the month, I'll have the water bill and the sky-high light bill from trying to combat the heat and more food to buy for hungry kids and more gas to put in the hungry van and another tuition payment and I feel like I'm trying to fill the ocean with a eye dropper.

After another night of not nearly enough sleep, due to Cassie vomiting in the middle of the night then spiking a fever then needing pain medication and so on and so forth, I can't cope. I can't see a bright side. I can't see a way out. I don't know what to do. I don't have the energy to do anything else. Wait for them to evict us. Tell Walt he can't go back to his wonderful little school and see the crushing disappointment on his face and then watch him drown trying to keep up in a public school system that makes no accommodation for his needs. Wait in fear for the anger and resentment to come back as he's bullied and teased and feels stupid and worthless because he can't pass the LEAP test. Throw one child under the bus because the other needs me more. That's what I feel I've done their whole lives. Finally, finally I felt I had found a way to give Walter what he needed, and I have to take it away from him. I feel like my poor kids have never had anything their whole lives that wasn't taken away from them before they were ready to let it go. I have never been able to give them anything that I didn't eventually have to take away. Nothing but myself, and god, if that doesn't make you cry for them, nothing will.

I don't know what to do but surrender. To accept that the bottom is falling out let it happen. I don't have the energy or fight to do anything else. I don't know where or when we'll land. I don't know what's going to happen. I did this. I put myself in this situation. I accept full responsibility for it. I made my bed. I just wish my poor kids didn't have to lie in it.