I need to post one more time about Jaycee's Nana. She did pass away last week. Nana and Jaycee were best buddies and Jaycee will really miss her. She still looks for her and we are struggling to find ways to explain this to Jaycee. It is hard for any child to understand something like this, especially one with limited communication abilities.
All of this has made me think about many things. One of them being, I need to find more support. Nana was always quick to help or change her work schedule if I was in a pinch. My mom, whom is thankfully still around, is a big help with Jaycee as well. But beyond that, I do not have a long list of people that I can call if I need help. My sister-in-law is good about helping but she has 7 kids of her own. I'd say she's just a little busy.
Some of this problem is my doing. Jaycee's an escape artist, needs help in the bathroom (at age 7), and is nonverbal. I just can't drop her off anywhere. She comes with a list of instructions, medicines, and advisories. Some of those being: keep the doors shut or maybe even locked, don't leave her outside unattended, hand her toilet paper or she'll undo your entire roll, take her to the bathroom on a schedule/she won't tell you if she needs to go, etc. I feel like other people would find her to be too much trouble. I think this was really true a few years ago, but I think she's really fairly easy now. I still have it in my head though that she's a lot of work. The truth is that she's content almost anywhere as long as there is a television. Finding long term support for families that have children with special needs is so difficult and important. So, as time heals and I can think more clearly I will be seeking out that support. I will open myself up and allow other people into our world.