About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Thursday, September 18, 2014

All alone

I was very nervous all last night leading up to my meeting today with Jayen's school. I had some concerns about lunch time and mentioned something to Ms. Shelby. Thankfully she called a meeting with Ms. Van Haute, but I was very nervous. I know we all needed to be on the same page but not having Matt there put everything on my shoulders. I'm always nervous that I will leave thinking, "Why didn't I say that? or Why did I say that? or Did I do everything I could for Jayen?" The meeting went well. I felt like they listened to my concerns and we can make a few adjustments. After the meeting Ms. Van Haute was chit chatting with me and I was just telling her about our home life and how crazy things are. She said she has lots of connections and might be able to find us some great respite providers. I hope that pans out. I'm in desperate need of great help. We have Heather, but our Medicaid respite is not really working out right now.
I didn't know how long the meeting would take, so I didn't cancel the bus. I'm now wishing I did! We left school and hurried home so Jayen could catch the bus. I wasn't sure if I should call the bus barn or if it would sound stupid that we are running late because we were at the same school you are picking him up to take him to. Well, about 5 blocks from the house Ms. Sheri, the para, called and asked where we were. I told her we would be there in less than a minute and she said they were just taking off! AHHHHH I missed the bus by less than 60 seconds. I turned around and headed straight back from where I just left.
After dropping Jayen off, Brilyn and I had a few errands to run. We were in the return line at the second store when I heard a water sound hitting the floor. I knew without looking what had happened and I was mortified! Brilyn had just peed on the floor at Gordman's. The cashier was new and had this mortified look on her face. Our eyes met and she saw the mortified look on my face. She had no idea what to do. Another employee called for a mop bucket, Thankfully! Brilyn was all smiles and had no shame in what she did. Then to top it off, she was playing with a rack of socks when she swiped at them and two pairs fell straight into her pee pile.
Our day was looking up when our friends Sara and Grace came to the house to hang out and help paint. We were able to finish the boys' room in the morning and enjoy a great vegan lunch. I have to admit I had never had tofu. Sara needs to teach me some recipes! I really liked it. After lunch we said goodbye to our friends and tried to take naps. Jayen always has a different idea during nap time.
All good things must end but I never like the ending I received in an email today. I talked to our respite provider at least three weeks ago about setting up respite twice a week. We really wanted Carleigh but she is only available Monday nights after 6:30. We are taking what we can get with her because she is so good with the kids. We also asked for Thursday nights. This week Carleigh had some car troubles and couldn't get to us. I wasn't informed of these car troubles until I called, text, and emailed the owner. He finally got back to me but only told me that we would have to wait and see if she would show up at all. Then tonight I get an email saying they haven't found anyone for tonight yet. WHAT? I thought this was every Thursday. You should be lining up every Thursday from now until Christmas! How is this happening? I really need to find a better provider. I'm so sad that I'm left with this situation and thought I had so much support only to find out I'm totally alone.

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