The Blue Rose

Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.

"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!" ANON.

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The throwing up continues

On Thursday evening Finnian started to throw up again. Normally he will keep his meds down but he was throwing them up too. Thursday night he was throwing up so much the poor lad had the dry heaves. You know its bad enough when you have them but its horrible to watch you child have them and there is nothing you can do to stop them.

Friday morning he threw up his meds again and we watched and waited for the seizures to start once we saw the first one we got the diastat ready. We had to give him some chest therapy as we could hear some congestion in his left lung. So after some chest PT and a neb treatment he was doing better. He finally stopped throwing up and he was taking some ginger ale. We have him on a low pump rate and it seems to be working.

Its sad to see he has gotten so skinny. He has lost weight again and I haven't weight him but I would say he is now close to 33lbs. Just think a few weeks ago he was almost 40lbs he was just a few ounces off it. Well hopefully that is the end of it and we can get the weight back on him fast.

You know it was bad when we even though about taking him to the ER for some IV fluids. I know some would say just take him but when you deal with Finnian on a daily bases you get to know him and know when its time to take him to the ER. We were almost at that point yesterday.

Here's hoping that today will be a better day.

Finally an update

Was supposed to bring Finny to the peds on Saturday to get medical clearance for his surgery on Tuesday but he was throwing up so I decided to wait until Monday.Fingers were crossed that he would have stopped throwing up my then.Sunday night I didn't sleep at all as he was crying in his sleep all night. You know the way they will be all settled down and you think OK this time he will stay asleep and as soon as you close your eyes the crying would start again. Monday was a mad house in the peds office and we were there for nearly 4 hours but walked out with the papers signed and given the all clear. By this stage I was tired and cranky but I still had things to do to get ready for his hospital stay. Got everything done that I needed to so I crawled in to bed for a nap and when I got up I was still very tired but I just had to push through it. I was lucky my Mammy took the other 2 kids for a sleep over on Monday so at least I didn't have to worry about them at 5 am on Tuesday morning.

We had an early start as we had to be at the hospital at 6:30am. I love early morning surgery as its nice and quiet. We signed all the papers and Finnian got checked and got approved again for his surgery. At about 8:10 am I carried him back to the OR and waited until he was asleep and then went out to call and say the surgery was starting and they would get an update later when I would know when it was over. It was great as this time they didn't send him to the PICU like they have in the past. Well may be because I stressed that they were not to give him Morphine. I didn't like the way his body reacted to it last year. Then later we were shipped up to the regular ward and once he had his IV antibiotics gotten and the Oxycontin was helping with his pain they let us out of the joint early on Wednesday.I got his scripts so he can go back to his therapy and the instruction that his dressings are not to get wet and if we see any issues to take him back to see the nurse in the office. We have to follow up next week to get his dressings off.

I was so glad that the PT came in today and he got his legs straightened out. Finny was keeping them in a froggy position and you know I didn't want to pull them the wrong way and hurt him so we let Sy take care of that. He is much more comfortable now and he has better movement in his legs already. His pain is being controlled with the lower dose of the pain med which is really great but we give him the higher dose at night so he will be more relaxed and sleep better. We have only seen his usual seizures which is great considering he had a surgery.

I know I will have a few more sleepless nights so I am just going to have to start napping during the day when the nurse is here. Its not something that I normally would do but you know when your body needs sleep you will sleep regardless if its day or night.