The Respite House

It was a long day Saturday without seeing Dear Son. I have to admit I was a bit depressed even though I did get to speak with him. Yesterday, I called to talk to him and he was getting a bath so they had to return my call. Imagine my surprise when one of the nurses offered to pick me up so I could see Dear Son (I only live three blocks from the Respite House.). I left around 12:30 p.m. and returned around 5 p.m. They didn't tell him I was coming so he was surprised to see me. He was watching t.v. in the family room of the Respite House when I got there. (See the pictures above.) Dear Son has the green shirt on. I was thrilled to see him!

Yesterday was a very special day at the Respite House since they were dedicating a new "Serenity Garden." The Serenity Garden was built on the south end of the property as a way to honor those children who have since passed; these children stayed at the Respite House for visits at one time or another. The pastor (in white) dedicated the Garden and then one person from each of the families came up to talk about what their child who had passed meant to them and how they affected their lives. It was very touching. Near the end of the ceremony, the local fire department played Amazing Grace. It was quite beautiful and touching especially since this is the department that has showed up many times for Dear Son when I have called 911.

Bright ribbons hung from the trees and after all of the dedications were complete, they had each of the familes tie a bell on the ribbon in memory of that child. It was a beautiful day for the dedication. I couldn't help but be touched by so many of the beautiful stories. At the same time, I felt lucky to be there with my own Dear Son knowing that one day, I will pass over that imaginary line and join them.

One particular man touched me with his stories of his son. He talked about how he felt he was chosen to take care of him. He said he felt he was chosen by God because he knew that he would take the best possible care of that little boy. I thought that was a beautiful way to look at life.

Another man had adopted a special needs child. He spoke of how much work it took to get the child off to school or to go anywhere. He said he used to play music every morning while he got the child ready for school and on one particular song, it would get really loud toward the end and make him laugh so he would often comment on it. Soon the child would smile in anticipation of the ending. He said he knew then that something was going on in his brain and he built on that. That was exactly the feeling I had when I read, "The Foot Book" to Dear Son when he was little. I used to read it in a sing song voice and touch his feet at one particular time. When he reacted in anticipation of that, I knew something was going on and I built on that trying to get Dear Son into our world more and more.

All in all, a beautiful day for a dedication. I was happy to be part of it. When the dedication was over, we spent some time in the backyard of the Respite House. Here's a partial view of the backyard, which faces East. You can see the playground and the swing with the ramp for the wheelchair on the left.

Here's Dear Son listening to some country music.

Finally, they took Dear Son into his bedroom to be changed and I sat with him for a while until they took me home. This is the view from his bedroom window.

Regarding the Respite House, they have a large group of volunteers that take care of the garden and do various chores for the home. They also have a lot of high school students that come here and play with the kids, everything from games to taking them outside. The Respite House provides twenty four hour a day nursing care and has a physician that stops by twice a week. If I recall, the property is located on three acres.

The Respite House, as I refer to it for this blog, actually performs both Respite and After Hospital stays for children with Special Needs. The vast majority of children who stay here are on Medicaid; Dear Son is not, however our stay was funded primarily through local donations and in part by a donation from the Department of Human Services since neither one of his insurance plans has any nursing coverage or respite care. The cost of Dear Son's 14 day stay is over $7,300. This house is unique to our area and is greatly needed in many areas of our country. We have no places for Special Needs children to stay when their parents need a break or when they need surgery, like I do. Parents of normal children have daycare, we have none.

I am doing o.k. after surgery. I probably did too much yesterday. I was in a lot of pain last night and this morning. I am having some trouble walking. I had hoped I would be recovering much faster. I can't wait to have Dear Son home again. It's very lonely without him and I am having a hard time sleeping at night without him here.

On the plus side, he is having fun. It was also nice yesterday since they could get his dinner and meds ready and I could go home. I was very tired and it was a nice feeling knowing that they would do it and it would be fine.