My girl Hope is up early today. Dan is away on a business trip so it is just us girls. Plus Tabor, Hope's seevice dog, of course. He is not up. He could sleep all day! From her bed Hope is talking about the new "trainer" who is coming this afternoon. That is what she calls the caregivers being trained. Hope receives waiver services through disability benefits so she is qualified for CDAC and SCL services. Respite too but not while Dan and I are working. Today Jackie, an experienced caregiver, will train the new one. They both work for an agency that hires and manages the caregivers. Hopefully the new girl isn't replacing Jackie - we all love her! She is kind and patient and has good judgement. Probably not, the new hire is probably filling a void by another staff member that didn't prove to be responsible enough for the job. We are so thankful for the care help! It allows is to work and volunteer and take occasional breaks for a date night. Better stop now...Hope is ready to get out of bed.

Had a blast at Hope's music class. Today was for sharing and all the people brought a favorite song to play for the group. Have to admit my favorite moment was when one girl dressed as a Ninja shared Uptown Funk. We rocked out together!  Hope's entry was Summertime by Kenny Chesney, one of her favorite singers. Ariel and Pam went old school with Louis Armstrong's What a Wonderful Life. The class is designed for young adults and they rotate between sharing, games, instrument playing and a concert by a local musician. All led by music therapist from West Music.  Each week about 5-10 show up and I usually send Hope with a caregiver as I am working. Today was a bonus! Great to see Hope having fun with her friends.

Why a blog?

I have been told many times to write a book about my experiences raising Hope. Not feeling that yet but a blog seems more do-able. My plan is to focus on the experiences of transitioning Hope from childhood to adulthood and someday living in her own home. As parents of a young adult with special needs, this is the thing husband Dan and I wrestle with the most. What will happen to Hope when we can no longer care for her? We are not alone in our worries - other parents we know have the same fears and worries and hopes that we do. I worry about her safety, emotional well being, health, hygiene, weight, behavior, friendships and social opportunities and finances. My mantra has been: "I know Hope will never live independently in the world but I pray that she will one day live independently of Dan and me...for her sake." That's the root of starting this blog. To figure it out. Maybe I'll help others too. There are many stories along the way in Hope's life to draw from so I'm sure I will frequently flash back to her beginning as a premie at UIHC and throughout her young life. Stay tuned.