Persistence

 After a long day at school I come home and cuddle Evey.

She needs the cuddles just as much as I do. She was spoiled for two weeks having us at home, so when I got home all she wanted was me. Joshua worked the basketball game and Jonah stayed with him. Laney came home with me and helped me with Ty and Evey. She sure is a big help, especially when I am trying to cook dinner and all Evey wants to do is cuddle. 

We didn't get home until 5pm because of our new carline at school. Hooray for expansion construction! Evey was in a good mood and was ready to eat. She ate all of her chicken, didn't care much for the rice and ate half of an oatmeal cream pie. She was STUFFED. She was getting antsy in the high chair so I signed, "do you want to play?" and she signed "play" back so I got her out so that she could play. 

While I cleaned up, Laney, Ty and Evey played nicely with each other. As I was finishing up,  I heard her starting to get fussy, so I got her ready for bed and read her a book but she cried and cried and cried. Finally she let out a huge rolling toot. She calmed down, but still did not want to go to sleep. Joshua texted me to let me know he was on the way, so I got her up and we read some more books downstairs while we waited for him to come home. Once she saw him and said goodnight she was ready to go to bed. 

She loves being rocked and sung to. I didn't have to sing long before she fell asleep on me.  Sometimes I just look at her while she is sleeping and think how wonderful it is for her to be a part of our family. 

When I was a senior in high school, I told my English teacher that I wanted to go into special education because I wanted a challenge. Over the 18 years I have taught, it has been challenging at times, but I learn something every year that helps me be a better advocate for the students and a better teacher. In return, it has helped me navigate all the challenges we face with Evey. 

Raising a child with a disability brings its own challenges. Each family that I have met that has a child with tri21 has told me their challenges. For some its trying to get the therapy their child needs and for others its about making sure their child is with their typical peers. Our challenge right now is getting her CAP-C services. This service will allow us to have someone take care of Evey while we are working if ever her nursing services expire. I had called on Monday to find out where we were in the process and I was told that they would call me back. It's been a year since I had applied. They have yet to call me back so now, every morning I will be calling until I get an answer. I have been told to keep being persistent! 

Hopefully one of these days, applying and getting services for children with disabilities won't be so hard and parents won't have as many headaches. We've come a long way with how the public views people with disabilities, but it still needs improvement! It should be just as easy for a person with a disability to get the things they need as it is with a typical person. Going to the grocery store without being taken advantage of or treated differently should be the norm for people with disabilities. Once people look beyond the disability is when we will see a difference!

Tomorrow, Evey heads back to school with her nurse and I am praying she transitions well back into routine.

Be like a bee-hardworking, wise and delicate!