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Tuesday, May 31st – A Turn for the Worse?

I took Eilis to school this morning, and figured I would spend the two hours while she was at school with my dad.  I went into his room, and he was dozing a bit.  He startled himself awake after a few minutes and asked me if he had been sleeping. I told him he had.  He reported that my wonderful husband had stopped at the diner and brought him a big diner breakfast.  He has been asking for one – scrapple, eggs, hash browns, etc.  Jim left with Brighid earlier this morning and stopped at Ponzios, then brought the breakfast to my dad.  BTW, they saw Bobby Clarke, former Captain for the Philadelphia Flyers, at the diner.  It would have been cool to bring him along!!

Anyway, as I sat there, my dad got teary and said he didn’t realize it would take so long to die.  He told me he wished it was over, and he was frustrated and upset that he was not gone by now.  He mentioned wanting to be like the man in the bed next to him – who has not moved in the 5 days since my dad has been there, and has had very little company.  He asked me a few times if he seemed confused, because they told him he would get confused.  I think he wanted me to tell him yes, he was confused, because then it would have seemed to him like something was happening.  And that’s what he wants – something to happen.  He wants life to be over, and he didn’t realize that making the decision to die would result in him hanging on, clinging to life.  He then started asking for his bath, so after about half an hour, I went home.

I went back to the hospital after I picked Eilis up and spent two and a half more hours.  He held the baby for a while today while she slept – I was so grateful that she was peaceful laying in his arms.  She didn’t fuss or fidget at all, she just lay still and let him cuddle her.  My Uncle Bobby was there with his three children, and my cousins spent quite a bit of time playing with Eilis.  When it was time to go get Brighid, Ann and my Aunt Joan took Eilis with them to the cafeteria and I ran to get Brighid.  Ann told me Daddy told her also that he was frustrated by the fact that he is still alive.  I cannot believe I am praying for this, but I want him to go peacefully and quickly.  It’s enough already.

I took Brighid back to the hospital with me to pick Eilis up, and there was a woman in my dad’s room with an organ.  She was singing to him and playing music, and letting Eilis play a bit as well.  She ended with the song “How Great Thou Art”.  My dad wants that played at his funeral, so I am pretty sure he requested that she play it.  One of the nurses came in and sang with my aunt Joan and Ann, and then mentioned that it’s a beautiful song in any language.  She is from the Caribbean.  We left shortly after that.  My dad was dozing.  He is weaker today, and not well looking.  His stomach is getting huge – the fluids accumulating.  He did not seem to be coughing as much today, but everything is relative – the man in the bed next to him had to be suctioned a few times during our visit today. 

I don’t know if his depression is a turn for the worse or if all the other “symptoms” can be called a turn for the worse.  I just hope it ends soon.  My father does not want this.

Monday, May 30th

The nights are way too short!   Even with Jim getting up with the baby, I feel like I’m not getting enough sleep.  Tonight, the baby is all mine so that Jim can go to work in the morning.  We’ll see how tomorrow is.

I pulled the grill out about 11 and made my dad a bratwurst with sauerkraut sandwich.  He’s been craving one, and with Memorial Day here, he really wanted one.  I packed it up and took it over to the hospital with Brighid and Eilis.  He just about inhaled the sandwich, but had a piece left when Ann and my Aunt Joan arrived at the hospice.  We sent Brighid down to the cafeteria to get a soda for him, and while he watied, he took a big drink of water.  He is pretty much filling up with fluid, plus mucous from the pneumonia, and when he took the big sip, he choked.  Ann tried pulling him up and patting him, but he was really choking.  The nurse came running in and propped him up a little better and asked if he wanted to be suctioned – which he declined immediately.  His face was turning beet red, his eyes were watering, and all I could think was with all his damn health problems, leave it to my bratwurst to be the cause of death.  I already get enough criticism on my cooking.

After about an hour, I left the hospital and took Eilis to my mom’s for the afternoon.  I figured Jim could use the break from having both kids all weekend.  I spent about an hour at my mom’s, then decided to go home and pump before I went back to the hospital.  Every minute I get with the baby is revitalizing.  I just sniff her hair, rub her little feet, kiss her tiny nose – I miss her while I am at the hospital, but can’t imagine not being with my dad right now.

Brighid and I headed back to the hospital after picking up a bottle of salad dressing.  Ann’s sister Maria is making my dad dinner and he likes Ranch dressing with his salad.  When we got back, my Uncle Bud and Aunt Lee are there with my cousin Angel.  They are waiting to go to the airport to pick up my Aunt Mary.  Ann has spoken to my Uncle Bobby’s wife Judy, who tells her that he left Missouri last night and should be here by Tuesday.  Shortly after Brighid and I arrived, my Uncle Bobby and my cousin John come in.  He has driven through the night to get there.  He is my dad’s youngest brother, and he is the most sensitive.  My Uncle Bud walks him into the room with my dad, and I hear my Uncle Bob crying.  Then, as he has with everyone so far, my father has done or said something to bring laughter to the room.  My Uncle Bobby comments that he is glad my dad is so talkative and alert.  At some point, my Uncle Bud, Aunt Lee and Angel head out.

My Uncle Bob has to bring John to his mom’s house, and he needs a bit of sleep and a shower.  He decides to head out and just minutes after he leaves, my Uncle Bud and Aunt Lee are back with my Aunt Mary.  She has just finished her last round of chemotherapy for colon cancer, but she looks really good.  She has flown in from Colorado, just days before the packers are coming to her house to help them move to their new home in Florida.  I am so glad for my dad that all of his brothers and sisters can be with him.

I still have to go to Medford to get Eilis, so when Maria gets there with my dad’s dinner, I decide to head out.  I go in to say goodbye to my dad and ask him if I can bring him something in the morning.  He has been talking about scrapple, but hasn’t gotten it yet.  Unfortunately, he is experiencing some nausea from the toxins that are building up in his body.  He tells me he thinks he is going to stick with the menu.

Things I have noticed today – my dad’s breathing is getting a bit heavier.  He is a little bit less “strong” today – his voice seems just a touch weaker.  His belly is also getting the distended look.  I just pray they can keep him free of pain.

He tells me to bring Eilis back, so I may do that for a few minutes tomorrow.  Then he tells me I don’t have to come every day because it’s going to get messy.  I tell him I’m having a blast, as sarcastically as I can, and then I kiss him goodbye.  Then I go the car, shed a few tears, and shape up before I get home.

Sunday, May 29th

It was hard to get going today.  I am having a lot of trouble sleeping, and even though Jim has really taken over the baby for the weekend, I feel absolutely exhausted.  I am coming home from hospice with a headache each evening, which I know is nothing compared to what my dad has been through.  I am grateful to only have the headache.

My dad seemed weaker today.  He was still joking and talking and he seemed very content, but he is drifting in and out of sleep more often and his voice didn’t seem as strong as it did just Friday night.  Ann also felt he was running a fever today, which is one of the signs that things are happening as far as the toxins affecting his body.

When I arrived today, Ann’s Aunt Theresa was there with her husband.  My father has loved them from the minute he met them, and they made him feel welcome into Ann’s family immediately.  Aunt Theresa, just before she left, said something that will stay with me.  In commenting on my father’s impending death, she said, “It’s beautiful.”   I have heard that when people talk about weddings, Christenings, graduations, but never about someone dying.  But she could not have been more correct.  What is happening with my father is beautiful.  Don’t get me wrong.  There is a pain in my heart that I feel I will never recover from.  But for my father, this is a beautiful time.  There are people in his room just about from the time he wakes up until he has fallen asleep for the night.  He is able to tell everyone who has meant something to him that he has loved them and appreciated them for what they have given him in this life.  He is able to be embraced by those who have loved him for years and by those who have watched him suffer, and he is convincing us all that this there is no question that he has made the right decision.

Through the day today, after Ann’s aunt and uncle left, he was visited by a friend, Sister Mary Theresa, his friend Pat Zackey, and his friends Richard and Terry.  Noelle and her fiance Alvin came and spent some time saying goodbye.  When I left, he was surrounded by a room full of people, and the intensity of the love was overwhelming.

He makes everyone feel good while they are there, and as they leave, you can see the pained look come over them.  Men as well as women are kissing him and crying as they leave him for what they know will be the last time.  But they are all leaving with the same feeling.  It’s beautiful.

Saturday, May 28th

I get up this morning and take Brighid to get her school uniforms.  I stop and grab lunch at Taco Bell and head home.  I am getting the family together to go spend some time at the hospital. 

Everyone is dressed and we decide to take two cars so that Jim can bring Eilis and the baby home after they get too crabby to stay at the hospital any longer.  I drive by myself over to the hospital and spend most of the trip crying – then I notice Eilis is waving at me from the back seat of her Dad’s car.  She is so excited to be in the way back – she thinks it’s a big girl privilege. 

When we get to the hospital, my dad has some company.  He is eating lunch, but he acts very happy to see us.  He greets Eilis first and asks for a kiss – which he has never done before.  She goes over and kisses him and he holds her hand a minute, then she is off to explore the room.  My dad’s company and Ann head over to the lounge so my dad has a minute to see the girls.  He marvels at the baby, then Jim goes to sit in the lounge with Ann.  I move closer to the bed – my dad is only hearing out of one ear and it helps to be on his right side.  He didn’t get the scrapple and eggs he wanted for breakfast, but he enjoyed his meal anyway.  He seems a little weaker today, and he is coughing a lot more.  They are giving him breathing treatments through the day to help with that.  He can’t seem to get comfortable in the bed, and I help lift him up a little bit.  I spend the next little while walking back and forth across the hall to the lounge to check on Eilis, who has found the toy box.  She is occupying Ann’s time, but my dad really needs her with him, and she probably would rather be with him than playing with Eilis. 

His friends leave, and I get all emotional again watching my dad say goodbye to those he is closest to.  His lunch is finished, and I ask him if I can take a few pictures of him with the baby.  He excitedly says yes, and Ann rushes to find a comb to fix his hair.  Soon, Grace is sitting in his lap, and he is oohing over her and holding her as best as he can.  Through teary eyes, knowing these are the only pictures Grace will have of her with my father, I take four pictures.  I cry openly as I put the camera away, and my dad asks Ann to take the baby, who was blessedly awake the whole time she was with my dad, her eyes watching him closely.  It was as if she was taking him into her memory, understanding that her time with him would be limited – possibly to just today.

Someone emailed me sympathy and told me that God sent Granuaile to me to help me get through this time with my dad.  That may be true.  When I finally got home after spending the day at the hospital, it felt so good to hold her close to me, her little head resting on my chest. 

My Uncle Bud and Aunt Lee visited a while, my stepbrother and his family arrived, and after a while, my Aunt Joan came.  I was outside when she arrived and we went in together.  She was sobbing rather heavily, and her tears brought my own back.  We sat downstairs with my sister in law Angela for a while so my aunt could compose herself before going up to visit her brother.  She said something that was very touching.  If we didn’t have the love in our hearts for my dad, we wouldn’t feel the way we do about losing him. 

Knowing that Ann would not be alone, Brighid and I left her with my dad, Danny’s family and my aunt.  I’ll head back tomorrow, maybe with Brighid.  In between company today, my dad planned his funeral and composed his obituary.  I think it feels good to him that he is running the show.  He’s been at the mercy of too many people for too long.

Friday, May 27th

The day didn’t start out well.  Well, actually, I can’t say that.  Jim was working from home today, and he offered to take the night shift with the baby.  I got a fairly good amount of sleep, and woke up feeling not too tired.  I ran to Babies R Us this morning and picked up an oh so cute outfit for Granuaile.  We are having photos done at noon of the baby in her Christening dress, and then photos with all three girls and nothing we have in the closet is small enough to look good on Grace.  I bump into Angel and her little guy, and we have a few minutes to chat. 

On my way home, Jim phones to say he is picking up breakfast for himself and the kids, and when I get home, there are pancakes and sausage waiting for me.  Jim decides to skip the photo appointment to get some work done, and at noon, I head over to the studio with the three girls.  It gets ugly from here.  Eilis is on about the worst behavior she can be.  She is running around the studio like a nut job, she is running into the store room where the props are and grabbing props, she is slamming doors and running around the camera equipment.  She is blocking the baby when it is her turn to get pictures done, and when it is Eilis’ turn, she doesn’t want to be in front of the camera.  After an hour and a half, I am tired, hungry, headachey, and so angry with Eilis I could spit. 

I get home, and we have already said we would ride together to go drop off software at the Dale’s house.  While we are over that way, we will go to Genuardi’s and get Jim’s money back from his over charge, and we will pick up sushi.  We will also return the girdle they sold me at Catherine’s in a size way too big for me.  We get all the way over to Genuardi’s, and we realize that I forgot the girdle and Jim forgot the software.  We end up coming all the way back home, and now Jim and Brighid are going to head back to Cherry Hill to drop off the soft ware.  Because we live on a well traveled route to the Jersey shore, the traffic is awful, and I am home with a slightly crabby baby and Eilis, who at one point today tells me I love the baby more than her because she is being punished for her poor behavior at the photographers by not being allowed to go see Madagascar this weekend.

I go upstairs to pump, since I haven’t since this morning and I am in significant discomfort.  I am sitting on my bed and the phone rings.  Caller ID says it is Our Lady of Lourdes hospital.  You know that can never be good news.  My dad has been in the hospital for a couple of days with pneumonia.  I answer it, and it is Ann with her voice breaking.  My father has decided not to undergo any further treatment and is being transferred to Cherry Hill for hospice care.  I get hysterical sobbing and have to call Jim to get the details of what is going on.  Since he is no longer going to be receiving dialysis treatments, toxins will accumulate in his body.  He will go into a coma from the affect of the toxins and then die, or he could die from congestive heart failure from the build up of fluids. 

Jim sends Brighid and I to the diner – he is always thinking of food at the worst possible times.  I am a blubbering mess, so I have to wait to go eat.  I take Brighid and Eilis and we have a nice dinner, talking a bit, not talking a bit.  I bring Eilis home and then Brighid and I head to the hospital.  We stay about two hours at hospice, which allows you to stay 24 hours a day if you like.

I sit by my father’s bed and the first thing I can think to say is “Are you sure this is what you want to do?”   Then I start crying again.  He tells me he really wants to be done with the suffering and the doctors tell him the dialysis will only keep him alive to be sick.  He tells me over and over how much he loves me and he loved Bean.  He tells me I was always a good daughter, and he is proud of me and his grandchildren.  He tells me he loves my whole family.  I tell him it’s too soon since I lost Bean to lose him too, and I tell him I want him to be around to spend time with Grace and give her and Eilis a chance to know him.  He says he doesn’t want to be in pain any more, it’s too much for him to stay any longer.  He asks me if he was a good father.  I tell him he was and he says that that’s all he needed to hear.  In talking to him, I feel the peace that he feels – not for myself, but I know that he knows in his heart he has made the right decision.  He is looking forward to the end like a child looks forward to Christmas.  They don’t know how many more days it is until the big day, but they know that there will be big rewards for the long wait they have had. 

We learn that we do not know how much time my father has.  Once you go off of dialysis, everything depends on how strong you are, how long it takes the toxins to affect your other organs, and whatever the Lord’s plan is for you.  We may have a few days with him, and we may have a couple of weeks.

I spend most of the two hours with him crying, and then the hospice nurse gives him morphine for the pain of his bedsores.  He begins to nod off, and I kiss him goodnight, tell him I love him, and get ready to go.  I ask Ann if I should bring the other kids back with me, and she asks if I could at least bring the baby back.  She tells me it is up to me if I think Eilis would be okay coming to see him at the hospital, and I tell her I’ll bring both of the little girls with me tomorrow.  I want to try to spend as much of the weekend as I can with him, because once Tuesday rolls around, Jim will be back at work and I’ll be home with three kids and not have much time to visit.

Brighid and I get outside in the car and spend a few minutes just sitting and crying.  These will not be easy days for any of us except my dad.  After ten years of slowly deteriorating health, these are the easiest days he’s had.

The Christening

I think it was a beautiful day.  I really don’t know how better to describe it.  Father Newton performed a beautiful ceremony.  He met us at the back of the Church just before Mass started, and basically, we just followed what he told us to do.  We walked into the back of the Church, and he introduced Grace to the parish and asked if we had come to have her baptized.  He asked Megan and Brett something about being Godparents, and then we all processed into the Church together.  We sat in the front pew, and we went through the beginning of the Mass.  After the homily, Father Newton called us up to the Baptismal font.  Grace was so good – she slept through the whole Mass, including the pouring of a generous amount of water on her head, and including a good rubbing in of the Holy Chrism.  Her Baptismal candle was lit and handed to Brett.  Bless his little heart, he didn’t know quite what to do with it, but we have some nice video of him looking confused 🙂   Then, after she was Baptized, Father Newton took her and held her up like Rafiki did with Simba in the Lion King for the entire congregation to see.  I know my family thought it was a little corny, but I just thought it was beautiful.

We made our way to the reception at the Marian House, where Falcone catering did an extraordinary job on the food.  There was  a table set up with cold hors d’oeuvres, and then they butlered trays of hot hors d’oeuvres.  I’m not sure what there was to eat, since we were so busy getting in, getting the baby situated, and greeting the guests who had already arrived and continued to arrive.  At about 1, they opened the buffet.  There was huge stuffed shells, veal scallopini, hot roast beef with gravy, and my favorite – chicken marsala.  They also had green beans almondine, a nice tossed salad, and some delicious rolls.  There were three other salads at the cold hors d’oeuvres station, but I never got over there to see what they were.  I heard they were delicious, though!

I am pretty sure everyone had plenty to drink.  We had Steve from Steve and Company DJ the affair, and he really catered to the kids.  He played all kinds of musical games with them for 3 hours.  The kids had a blast.  We did request at one point that he play a polka so that Bob could dance, but other than that, the grown ups didn’t do much dancing at all.  It didn’t matter – the kids had so much fun.

We had about 100 people there, and it felt so good to be surrounded by family and so many good friends.  I was so glad that there were so many people who wanted to hold Grace.  She spent the whole afternoon sleeping, but she got hugged and loved by some really wonderful people.

At the reception, Jim announced that Brighid had gotten into Honors Algebra at school.  She didn’t know that, and was a little embarassed by the announcement.  Then she followed the announcement up with a bit of a dance, and everyone clapped and cheered for her.

I wish I had taken more pictures.  I hope everyone who remembered to take pictures sends them to me!   There is not one minute of the day I would like to forget.

The Dancing Queen

You think this is going to be about Brighid, don’t you??

Yesterday was the Christening, and my little Eilis thought she was the “Cat’s Pajamas”.  She wore the dress I let her choose out of several options a few weeks before I went into the hospital, and she wore her “princess shoes”.  As soon as we got to the hall after the Mass was over, Eilis found the dance floor.  While the quiet welcoming music was playing, Eilis was the only one on the dance floor.  While the dinner music was playing, Eilis was on the dance floor.  Then, the DJ started playing musical games with the kids – guess who never left the dance floor?   Yep, Eilis.

She barely sat long enough to get a bite to eat, and mostly she ate the pepperoni and cheese, which she could grab on the run.  She had a few drinks of soda, and then got right back out on the dance floor.  She danced so hard, she ripped her dress nearly to shreds!   She must have fallen and stood on the outside layer of the dress as she tried to get up, and it ripped away from the dress.  She was amazingly cute, I thought.  My own little party animal 😉

So I Have Something To Wear

but my whole stage fright thing is setting in.  I hate being the center of attention for anything, and I am already dreading having to get up in front of the congregation tomorrow.  I hope there is no standing up on the altar or anything like that – that way even though I’m standing in front of the Church, I’ll only be visible by the first couple of rows.

I settled on a pair of black trousers and a green wrap style blouse.  You can see the blouse here http://catherines.charmingshoppes.com/Shopping/product.asp?product_id=C1009352&nav=C1

I thought I looked pretty good in it, but took Brighid shopping with me and got no real reaction from her.  Then I got home and my husband didn’t make any kind of fuss over it.  I finally took it to my mom’s this morning and both she and Megan thought I looked good in it.  Then, in a cruel twist of fate, the weather has changed from going to be 78 and sunny to being 68 and rainy.  I may end up wearing a blouse I already have in the closet.  I bought some matching jewelry for the green blouse – it may have to wait until Brighid’s dinner dance.

I truly hope everyone has a good time at the party.  I hope people dance, and I hope they stay for a good bit of the afternoon.  We have the hall and the DJ for 5 hours, and it would be a terrible shame for people to come, eat, and leave right away.

And now I’m off to write my sister’s speech for tomorrow.  She is supposed to toast the baby as her Godmother (and Brett as her Godfather), and neither of them quite know what to say.  Like I do…

Two Days From the Big Day

After weeks of worrying, planning, deciding, and determining, Granuaile’s Christening is just two days away.  This will be our last big party for a while – at least until Brighid graduates high school, and then I don’t know what kind of shindig she’ll want.  We chose a caterer based on the deliciousness (is that a word) of his food – even though we haven’t eaten it in 13 years!! – and on the location of the hall, which is less than 2 miles from church.

Our menu consists of Chicken Marsala; Veal Scallopini; Baked Stuffed Shells, Grean Beans Almondine; Tossed Salad, and three “specialty” salad, which will be a surprise, since we didn’t get to choose those.  We are also going to have vegetables and dip; pepperoni, cheese and crackers; and as a very generous gift from the caterer, hot hors d’ouevres.  Then, there will be a selection of pastries and a marble pound cake from DiBartolo’s – YUMMM. 

The worst part of the whole day is I have to find something to wear.  I have lost 51 pounds, which is great, but all the skin that was holding up all that fat is now drooping down around my ankles.  I tried on a few things yesterday, and hated how I looked in everything.  I have regrouped, put on better underwear, and am going to try again this afternoon with Brighid.  It’s a sad sight, though, standing in front of a mirror with your boobs hanging down past your belly button and your saggy skin from your belly hanging at your knees.  I will probably end up with something shapeless and unflattering that hides most of what I don’t want people to see 🙁

Bean’s Hair

I have what is commonly refered to as Poker Straight hair.  My sister Megan has what is commonly referred to as Poker Straight hair.  My sister Bean, however, always had dark, wavy hair.  As she got older, and as her tumor got worse, the hair went from a nice, soft, wavy type of hair to a dry feeling, kinky type of hair.

I bring this up because I think of Bean a lot.  And last night, as I was combing the baby’s hair after her bath, I noticed she has this soft, wavy dark hair.  Since my other two girls have inherited the gene for Poker Straight hair, I am envisioning Granuaile with long, flowing, curly hair that is the envy of every straight haired girl in her path.  And as soon as I pictured my beautiful little curly haired daughter, the image was replace by Bean’s head of Brillo pad, uncontrollable, not so enviable curly hair. 

Keep your fingers crossed for those flowing beautiful curls…