A New Day

Today Mike's aid came back. She WAS sick, but also took a day to visit a friend in Boston. I had a long talk with the agency and we've come to the conclusion that Mary is burnt out. She has worked with us since May - 10 hours a day, seven days a week without a vacation. They will try to talk to her about cutting it down to 5 days a week, and try to find someone else to cover her for the other 2. I don't think she will like it because she WANTS to work to make the money. I just get concerned because I feel on edge - like on any given day, I will get a call saying that she quit. After caring for Mike myself for 5 days, I've seen how fragile Mike is. He is definitely slowing down. Now that Mary is back, we will have to wait and see whether it was because of a change in his routine, or if it's just the disease taking it's toll.
Brandon spent the night with his friend's family out on the Island and just came home. Tomorrow morning I have to get up at 5am to get Courtney to school. She is going on a band trip to Washington DC and Bush Gardens. The weather is supposed to be beautiful for her and I'm glad.
I have been more than overwhelmed this past week. Between the situation with Mike's aid, worrying about his health, dealing with Courtney's disappointment about the possibility of not going to Fordham, my everyday issues with finances - it's all beginning to take it's toll. I'm tired and I don't see an end in sight very soon.

Fear of the Unknown

Mike's aid has not shown up for the 4th day in a row. The agency she works for called us on Saturday and said she called in "sick" for Sat. and Sun. This morning, the agency called me and told me that Mary called in "sick" again today. I stressed to them that I need to know what is happening with her. Is she really sick? Did she quit? Will she be coming back? I didn't go into work Friday or today and who knows what will happen if an aid can't be found. The stress of the unknown is horrible. I am VERY concerned that if the agency finds someone, they will not be able to get Mike to eat or drink. Will this hasten Mike's decline?

Blessed Easter

This morning, after 3 1/2 hours sleep, Courtney and I woke up to go to the sunrise Mass at the beach. We woke up at 4:30, got dressed (without saying a word and walking around like zombies) and left the house at 4:45 a.m. We got the the beach around 5:05 a.m. in the PITCH BLACK. There are no lights or anything. You can barely see 5 feet in front of you. At about 5:45 a.m. Father Ralph (our beloved Pastor) yelled for this "flock to follow him". Hundreds of people followed him down to the beach where they had a bonfire. We were given sticks that represented our sins and each threw them into the fire. The priest blessed the ocean and we all went down to the waters edge to bless ourselves. We then walked to the next area and celebrated the rest of the mass. By this time the sun was rising, and while it was bitter cold (35 degrees) the morning was beautiful. Courtney swore that her toes were going to fall off because she wasn't smart enough to double up on socks or wear boots. Thankfully, she left the mass with all her toes still attached. We got home and the next chapter of my day started by caring for Mike. My mom and brother did the cooking and setting up, and for that I am grateful. I was EXHAUSTED and by 5:30 p.m. after I had given Mike his dinner, I feel asleep on the couch for about an hour.

While the weekend was difficult, because I didn't get a chance to do anything else, I was blessed to have spent the extra time with Mike.

The pictures were taken this morning. We HAD to take the one of Courtney and I when we first got there, and the next was a picture of our beautiful Easter sunrise.

Rock Stations of the Cross

Courtney and I just got back from our church's stations of the cross for Good Friday. We went last year and I vowed to not miss it again. It was SO moving and beautiful. Some parishoners act out the Stations while the band from our rock mass sings both church and pop songs. The way they weave the bible into modern day examples is truly amazing. Jesus carries the cross, is whipped (not literally though) and is hung and crucified. In between each Station, the band plays. It is so moving. The night culminates with the Spanish community carrying in the statue of Jesus and everyone sings Hosanna.
I NEEDED this tonight. Mary called this morning and said that she had to come in late (3pm) because she had to move out of her current place (the one next door to us). It doesn't surprise me, especially if she pulls the stuff there that she does here. All the errands I had to run, had to be put off. At 2:45 I called her to make sure she was still coming (a feeling I had) and she said that she couldn't - she just STARTED moving. Needless to say I got NOTHING done at all today - but thankfully, I had off. If I didn't, my boss would not have been happy. Now I have to wonder whether she will be in tomorrow or not. If not, I have NO IDEA how I will get all my stuff done for Easter, since no one else can care for Mike but me. I was so upset, frustrated and beaten, that I NEEDED to go to the service tonight. It DID help.
Happy Easter to all.

53 Face Cloths

Things around the house have been pretty intense - actually I would say "on edge". Mike is doing OK, but the aid is giving us alot of problems. For whatever reason, she says we have all "changed" towards her, even Gizmo. She is paranoid and just this week, she really didn't answer any of my questions about Mike. Everytime I would ask her something, she would just shrug her shoulders, or say "I don't know". I'm sure you ask yourself, "why do you keep her?" It's because she's familiar with Mike and gets him to eat and drink. There are not many aids around that can take care of a patient like Mike. Most just want to come and "keep a patient company". In the course of these past 8 years - oh the stories I could tell. I have no idea what will happen, but I can tell you things have been terribly stressful - something I don't need anymore of. I pray everyday that this God loving woman (she walks around all day quoting verses from the bible) sees the undo stress she is causing and tones down her actions.

The kids are finished with their trimesters and are officially on vacation. They both did really well, once again. Courtney's overall average was 95.7 and Brandon's was 94.1. Brandon was REALLY upset with himself because his average went down .1% (last trimester it was 94.2). I can't believe how frustrated he was. I am so proud and happy for both of them. They amaze me.

I did Mike's wash last night and for my own entertainment, I play this game. Last night, among all his other clothes and wash, I folded and counted 53 face cloths. Imagine that!! This is what it all comes down to. Counting wash cloths - and so, another day ends.

Oh Well.....

Well, all of Courtney's financial aid packages came in and unless there's a miracle hovering over us, she will be attending Hofstra University in September. While the Fordham package was "decent", we would still have to come up with alot more money each year. It does hurt me, I will not lie. Courtney loved Fordham from the moment she saw it. Everything about the school was perfect: the courses she wanted and connections the school had for jobs/internships, the proximinity to home and NYC, the campus, their church - it all fit. Unfortunately, it looks like there is another plan for Courtney and we will just have to accept that. Hofstra is a good college (my alma mater) and it's close to home. Their scholarship and financial aid offer was substantial enough that we hardly need to put anything towards tuition. We feel blessed in that sense and we will be forever grateful that Courtney will have a good education when others aren't so lucky.

Courtney and Brandon have their last big test today and then they're off for 1 1/2 weeks. This weekend is busy for us. Friday night we go to the "Rock Stations of the Cross". A truly amazing experience. Saturday our pastor asked Courtney to do a reading at the Easter Vigil, so she will be there from approx. 8pm-12am. Then Courtney and I will be going to the sunrise Easter Mass on the beach at 5:30 am. I haven't been able to go the last few years, but this year, Brandon will stay with Mike and I will be going with Courtney. Hopefully the weather will hold out for us. I don't think Mike's aid will be in on Easter, so I will be taking care of Mike on my own. I already warned by brother and mother that they will be doing the cooking. I hope I make it through the day on such little sleep.... but then again, that's nothing new.

Waiting, waiting, waiting

Well, Brandon got his cast off yesterday and believe it or not, he wanted to go play basketball right afterwards - the same sport that got him into the cast in the first place. It's not like he can never play basketball again, but seriously. I was pleased when the PA told him that he couldn't play sports for another 2 weeks. His ankle still needs time to heal. Right now, he's just trying to get used to bending his foot again - but he's VERY happy and he said he feels "free".

We're still waiting for Courtney's financial aid package to come in. She really wants to go to Fordham and I pray that it works out. It just hurts me SO MUCH when I see other kids getting so much money/aid because of the color of their skin or their nationality. Courtney has worked SO HARD for her grades, despite going through all she has these last 8 years. If anyone deserves a large scholarship, it would be Courtney, unfortunately, schools don't take all that into consideration. She seems "OK" if she has to attend Hofstra, but I HATE the fact that my children always have to settle. They deserve the same chance as anyone else.

On a lighter note, Mike actually laughed at me today. I kept repeating how much I loved him and I asked if I was boring him. He looked and me and chuckled. THAT'S the way to start a day.