I just returned home after sitting next to Orion for several hours while his dad got some dinner and a bit of down time. It was very peaceful and relaxing saying the rosary, meditating, and just looking at the cute little boy. Matthew had said Orion had gone through another very frustrating day and seemed a bit depressed. His nurse informed us of what we really already knew, that he will have good days and not so good days. Although all of us know this is typical of the ebb and flow of life, it is so hard to watch the low times hit your child or grandchild whom you love so dearly. By the time I got to the hospital about 5:45 pm, Matthew was calming Ri down, helping him to rest. Matthew had said Ri wasn't even interested in going for a walk in the wheelchair. Today was so very hard on Matthew, as he tries so hard to keep up a good attitude and a cheerful smile for the babe. When he left and Ri was resting, I got to relax, too. To reiterate, it was very peaceful sitting there, watching him sleep.
It seems Orion has not only been very frustrated because of the lack of oral communication, but because he feels powerless. So tonight, his dad and I made sure that he knew he was in charge of the following:
- the remote control
- his wires that are attached to him
- his sheets
- his pillows
But mostly his dad tried to remind him that he is in charge of his thoughts and his imagination.
Matthew wanted to make sure Orion felt he was in control of at least a few aspects in his life there in that room. He also knew Orion was still upset with having to undergo a sponge bath by a female nurse while his mother was in the room earlier in the morning. So, it was requested that Matthew would always be the one to help Orion give himself a sponge bath and when Matt wasn't around and if at all possible, a male attendant would help Orion. Hopefully, this won't have to be the only bathing option for too terrible long.
Wow! I don't know from what reserve Matthew gets his patience and understanding but I could shout it from the rooftops that Matthew Fierro is the best father in the world!
So Happy Fathers Day Matthew!!!
And Happy Fathers Day to all the good fathers out there!
