Every parent can remember the special times of their child's life.  The day they found out that a new baby was coming, the day their child was born, their first words, first steps, first day of school....and it is these things that I have been remembering all week.

Mark had some wonderful times....so many stories our family shares of the funny way he would say things, his perspective on things.  I also have come to understand that the last two weeks of Mark's life were some of the most magical, spiritual times in our family.

I don't want to forget them....and through the magic of this website I have almost a daily chronicle of what occurred.  I am so glad that I have this.

Yet, re-reading through the notes I made here last year I remember that I didn't say everything that I was feeling because Mark was still reading the website for several days.  So many of our friends and family could read between the lines.  It was during those times that I came to understand the importance of being a parent, the importance of family, the treasure that are our friends.

I want to relive each day as much as I can.  For the next two weeks, I am going to re-enter each entry......then at the end of each, try to put into words what I remember I didn't say.  

I am hoping that those who did not follow our journey last June may gain some insight into what it means to love someone with all of one's heart, and the difficult task of letting someone go.  I don't think we ever said goodbye to Mark.....more of a see you later.

There is also the other side of things.....everything here is my perspective.  I know somewhat what his brother, his dad and the rest of Mark's support...his family and of course, his precious friends.  I hope you too, will remember Mark's last two weeks as something that was special.  Please let me know on the guestbook, if you wish, what you remember of those days.  They were the days of the celebration of Mark....and he understood that he was lucky to have the time that he did with the people he loved so very much.

Here we go............
 

Wednesday, May 30, 2007

Back home....even the Cardinals know!!!!

I felt like I was running all week last week, and there were several things I wanted to post here so I will remember them when I am really old.

First....and most important...a little report on some important mothers.  I received an email from Kris and her mother's eye surgery went very well....she can now see things that she hasn't seen for a long time.  I am so glad.  Kris's mom and I have a lot in common....more than people would even care to know.  I have been so worried about her and Kris.  I know her mom's quality of life is so much more improved.

My mom is doing very very well.  Katie took off a week of work with FMLA.  I am so glad she did.  I am not even eligible for FMLA for myself, let alone caring for someone else...until September, since I was off so much with Markie.  Katie was the best person to help mom and she did an outstanding job.  I don't even know how to help mom with her exercises.  Katie functioned as nurse, entertainment, physical therapist, laundress, and so much more.  I was holding Mom back...I know I was too protective of her.  I worried about her getting up when I wasn't right there and really shouldn't have...she is doing well with the walker on her own.  Katie solved that problem the first day she spent with Mom....she just took her walker away!!!!   I know Mom is working hard and I am really very proud of her.  She spent Saturday and part of Sunday with Don and me here at home.  Don put the living room chair out under the gazebo.  We told her she could pretend that she was rich and had fine furniture on the patio.

Last week was Michael's graduation from preschool.  He was the best dressed, cutest one there.  (I know I am his Granny...but I am not lying.)  He also had the biggest fan club with me, his parents, Daniel, his other grandparents and his aunt and uncle.  I was a little choked up because I was so proud of him and I remembered that the last preschool graduation I had been to was Mark's.  At the end Michael's class sang "You are my sunshine"...the same song I used to sing to Mark when he was a baby.

During Mark's last days at home, he wouldn't let me touch him.  I could manage things that needed to be managed...but as far as rubbing his back, holding his hand, hugging him, kissing him.....he wouldn't allow me to do it.  I remember people coming to visit him and he would reach out to them...and I would be so jealous.  He always let his brother and his dad touch him and would demand high fives or kisses from his nephews.  His mom, no.  I have had trouble understanding why he was this way with me....but I believe that he was afraid that it would be too difficult for me and for him for me to touch him.  Finally, the evening before he died, he allowed me to actually place a cold cloth on him and I kiddingly said "Oh, so you are going to let me touch you?"  He looked at me and said that it was ok.  "Then, I am REALLY going to touch you."   He let me kiss him, hug him....and even let me sing to him.   I can't sing at all....but he allowed me to sing what I used to when he was a baby...."You are my sunshine." 

When Michael's class sang that song.....I know that the intention wasn't for me.  Somehow, though, I sure feel that Mark was in that chair that was empty next to me.  He would have been there for Michael.  I think he was.

Now, it wouldn't be right if I didn't finish the story the way it really happened.  Mark let me sing to him, touch his hand.  It was my moment.  After several times singing, Mark reached up and put his hand over my mouth.  So much for my lullaby.

After the graduation I spent the evening with what I call Angel Moms...even though our group name is Bereaved Beauties.  I really love these ladies.  For the first time...I was the only one there who had been without my angel for less than a couple of years.  I listened to each of them  (they are actually very funny) and marveled how they have endured several years...and I haven't even hit the one year mark.  I asked for their guidance and suggestions as to what we can do on June 13th, or what they do on their child's death anniversary.  All gave me great suggestions, some of which I had already planned (I will NEVER go to work on that date, for one).

I have decided that on the evening of June 12th......that was truly a magical evening last year...I will have a sort of vigil in our backyard.  I plan to stay up the night, with the dragonfly lights lighting the way.  As long as it doesn't rain....that's where we will be.  If anyone wants to join me, that is fine.  We weren't alone last year and there were others here with us that evening telling Markie goodbye and waiting for the angels.

At 8am on June 13th...I will always be at mass at St. Francis.  That is the time Mark died.  I don't want to be at home where the distractions of home will be...no phones, no television, no work to do.  I will be at St. Francis.  I know this year will be very very hard.  I know this is the right place for me to be.

I really appreciated the Angel Moms and their support.  However, the most heartwarming thing that was said that night was made by Susan.  She had a son who had  Down's Syndrome and attended the same school that Lois works at.  She told us how her son loved Elvis and that at one time she and her husband had a special Elvis costume made for him.  Her son was in the backseat of their car, wearing his Elvis suit.  She heard him say "I just love my life."  I was able to take so much from that......

Memorial Day last year was the day Mark called us all in and told us he was done...that he knew he was dying and he wanted to go home with his family, his friends, and his dog.  I know the date isn't the same...but we as a family all discussed this weekend how this was Mark's freedom day...and the day he made a choice, a decision that no one else could make.  As we were one year ago....we understand what Mark was trying to accomplish and keep close to our hearts that the way we live and the choices we make....is the essence of who we are.

I don't think I could make the decision Mark made.  We are all so very proud of him.  We miss him so terribly much but have accepted his decision and what it meant.  

Instead, over the next two weeks or so, I am going to concentrate on the little things Mark did as a baby, as a child, as that beautiful young adult who knew how to push my buttons.   With all of the successes, all the family and friends who loved him....and continue to love him.....I know that at any time during those wonderful 24 years, he would say...

"I just love my life."

Dragonflies.....they are our symbol for Mark.

My sister-in-law, Mary DeWalle, received a story about dragonflies when her dad, Ken Gorry, passed away. She had shared it with me then, and again shortly after Mark had died.  I remembered the story when I started planning for our first Christmas without Mark.

I am going to put the story of the dragonflies at the end of this blog...and may even do a separate link so that it is always available to me and others.  A couple of months ago I emailed the author and told her I was using it on this site and if she didn't approve, to let me know.

The story was written for children to explain death.  Basically it is about some water bugs who wonder why their fellow bugs who leave never come back.  The waterbugs turn into dragonflies and are able to see their loved ones below, but never penetrate the surface of the water to return.  They are still hovering over everyone.   I like to think that is what Mark is doing...in fact, I know that is what he is doing. 

When I started contemplating Christmas, I knew it was going to be difficult.  I have some "boy angels" as my babies call them.....but didn't want a tree with lots of angels.  I was at Garden Ridge and was trying to get myself into some sort of holiday mood.  I was near tears.  Everything reminded me of Mark when he was little...candy canes, Santas, etc.  I went down an aisle and that is when I saw beautiful dragonfly ornaments.  Just simple, plastic ornaments, but I remembered the story Mary had shared with me and knew this was exactly what I should use.   I bought 24 ornaments for our tree...one for every year that we had Christmas with Mark.  I also bought a white tree because I didn't want to get down all the Christmas decorations we had stored.  The tree was beautiful.  Michael called it the Heaven Tree and we had one angel on it....and a couple of very special ornaments that were given to Don and me.  Otherwise...the 24 dragonfly ornaments became our reminder that Markie was still hovering over us.

Don and I decorated the tree together.  With each ornament we tried to remember each year we had Mark at Christmas.  It was very healing, very soothing for us and I know set the tone for the rest of the holiday season.

For Christmas, our first Christmas without Mark, Don gave me a beautiful opal and diamond dragonfly necklace. I rarely am without it on.

John and Tabitha could sense the importance of the meaning of the dragonflies and have given us numerous things for our memory garden that are dragonflies.  For my birthday and Mother's Day...it was all dragonfly theme.....and it made me feel that Mark was there and gave me something to hold on to for the coming years. I have a dragonfly that was given to me by Christine Hearst that hangs above my kitchen sink.  We have a beautiful, absolutely beautiful dragonfly lamp that Mark and Debbie Silhavy gave to us at Christmas. 

Michael frequently draws me dragonflies.  The first one he drew is so pretty.  I laminated it to keep it forever and it is hanging in our computer room.  I didn't even know he was drawing it.  He brought it to me and said "I drew this because they make you happy."  I immediately started crying, one of the rare times I have cried around him.  I asked him if he knew what they meant to me and he knew they were about Uncle Mark.

I am sure Mark is not thrilled that I turned him into a bug.  Yet, whenever I see dragonflies, I feel at peace.  I know that many parents who have lost someone have some sort of "symbol" they use...butterflies, angels.  For us, it is dragonflies.

Thank you for asking about them.  Here is the story:

The Dragonfly Story

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.

"Look!" said one of the water bugs to another. "one of our colony is climbing up the lily stalk. Where do you think she is going?" Up, up, up it slowly went....Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return...

"That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second... "Where do you suppose she went?" wondered a third.

No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea". "The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."

"We promise", they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: "the next one of us who climbs up the lily stalk will come back and tell where he or she went and why." Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water...

"I can't return!" he said in dismay. "At least, I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."

And the dragonfly winged off happily into its wonderful new world of sun and air.......

Thank you God, for the story of the water bugs and the dragonflies.

Please remember Mark, who left the pond we live in...and remember me...

STICKNEY, D. (1997). Water Bugs and Dragonflies. Explaining Death To Young Children. The Pilgrim Press.

 

 

I made it through Mother's Day.  It was very serene, peaceful.  We spent some time with John and his family then ventured out to Barnes West County to see my mom. She is doing so much better and I am sure she will be home by the end of the week.  She is special.

I emjoyed talking to Kris the other day and have been keeping her mom in my prayers ever since I heard she will be having her eye surgery in about a week.  I told Kris....maybe your mom will see my mom walk into Coach's retirement party!!!  I hope so.  Kris is a special person.

Mandy sent me flowers, a card and a very special picture for Mother's Day.  The picture was of a bright blue dragonfly that landed on her....and stayed put while she got her camera.  Wonder who that could have been?!  As soon as I can get my scanner working right, I will post the picture.  Mandy is a special person.

I got several cards, messages and they gave me such warm feelings...because I always love to hear other people tell me that Mark is still around.  I know that Angie Kopp really made me feel that someone understood.....and I do hope she enjoyed her birthday and mother's day as much as I did.  She is a special person for taking the time to think about us, and send me a card.

This is Nurse's Week.  I always liked Nurse's Week.  Several years ago I bought Patti O'Toole and me nursing caps (we had long ago lost our own) and every year we would wear them....even if someone did tell Patti that she looked like she should work at Long John Silver.  Somehow over the past two years we lost our caps.  Last year I was home with Mark and Patti wouldn't wear hers.  Maybe we will find them in time for next year.

Every year at Barnes there are nursing awards. They really are a pretty big deal.  We have had several winners from our division over the past couple of years...Sally, Marie, Alma, Little Mary and Greg (who, incidentally, was born at the same hospital John was...the very next day.  They were in the nursery together!!!)  In 2005 I was very honored to receive the Cay Doerrer Award.  I was very humbled, and very proud to have been selected.  Mark was living in Memphis, and he came home to attend the awards ceremony.  It was a very special day.

This year, Patti received a major award....one that I and several of our co-workers nominated her for.  I knew that in my absence, Patti was the sole senior night nurse...and I know she had many horrific shifts working with nurses who were not familiar with our floor or routines.  I have had nights like that....but not for months straight.  Patti never complained to me, never asked when I was coming back....and was one of the few who called me frequently to see how I was doing.   She was also the first person I ever told ... including family....that I thought that Mark might be in trouble.  She was nothing but supportive to me the entire time and even came out to our house after a 12 hour shift to help me with Mark.  I am so glad Patti was chosen for one of the two major awards.  She is a special person.

Mark had several outstanding nurses throughout his time on 7900.  He and Julie Randolph established a solid friendship.  She was not only his nurse, but his friend, his confidante, and the reason he stayed in the hospital one more night.  On one of his rare times that he felt well enough to go out, he and Julie spent the wee hours of the night at the casino together.  I believe it was his last real date....and I know he cared immensely for her. We knew that Julie was leaving Barnes at the end of May, and within days of Mark coming home with hospice, Julie was on her way to Colorado to start a new life with a new job.  She is an excellent nurse.  Mark loved her.  She is a very special person.

The award I was given, the Cay Doerrer Award, was named for a very sweet, smiling woman who was a nurse at Barnes for years.  At one point, she was the Clinical Director over our division and was a source of help and support when I tried a brief time in management.  I was very honored to have received an award in Cay's name.  I was even more honored today when another nurse I nominated, specifically for this award, became the 2008 recipient of the Cay Doerrer Excellence in Professional Nursing Award.

Tiffany Mersch was a source of comfort, support and guidance for both Mark and me throughout his course.  She not only took care of him, she also took care of me.  She was mostly there at night, on nights Julie didn't work, and I could immediately tell she was experienced, competent and caring.  Tiffany was able to do things no other nurse had shown. 

I haven't been back to 7900 since that last morning there.  I have specifically requested not to be pulled to work there....I don't think I could handle it emotionally.  I remember many names of the staff...many caring people.   But Tiffany remains a clear memory, a good  memory.  When she was on, Mark would tell me "Mom, you can sleep.  Tiffany is here."  She never let him hurt, she never judged him, she allowed him to make decisions.  I remember telling him, "Mark, Tiffany is a really good nurse."  He said "I know she is...she is one of the best."  Now, this is a major compliment coming from Mark.

I don't know Tiffany personally.  I wasn't even sure how to spell her last name, how long she had been at Barnes, if she had worked anywhere else.  I called one of the nursing supervisors a couple of weeks ago and had her do some snooping for me.  I wrote out the nomination, submitted it, and just prayed that Tiffany would be chosen.   When my manager called me one evening at work, she told me that Tiffany had been selected.  I had to take some time out, for the first time in months, away from my job so I could have a good cry.  All I wanted was recognition for someone who had been very kind, very special to Mark and me.

I don't think many of our other family members, including Don and John , even knew her.  Don wanted to be sure I took a picture of Tiffany...he just couldn't remember if he had met her or not.   They all knew, however, that both Mark and I held her in very high regard.  That is something...Mark could be a very tough judge and nothing is worse than a 30 year nurse judging another nurse.

At the awards ceremony, I got there just as things were getting started.  Patti was sitting where I sat when I received my award.  Her parents were sitting in the row my family had sat in.  I saw Tiffany briefly...very briefly before the ceremony began.  I gave her a small package as a token of our gratitude for everything she had done.  They were dragonfly ear rings.

There were not any seats left in the back and I ended up going with my friend, Sally, and sitting in the very front row....exactly where I did not want to be.  I was glad to be sitting with Sally, however, and didn't know anyone else that was sitting around us.

Patti and Tiffany were presented first.  I was so pleased to see the two people I had nominated go up together.  When they read parts of my narrative from the nomination, never mentioning names, I cried.  The tears just flowed.  I knew Mark was pleased she had been honored....and she was receiving the same award, in the same auditorium, that he had sat in just three years ago when he came home from Memphis to watch his mom receive the same honor.  He was proud of me then.  I know he was proud of Tiffany today.

I blew kisses to her from my seat.  After her presentation, she walked over to me and gave me a hug in front of God, Mark and about 100 or so people at Barnes.  My heart was just so full of emotions, remembering how much she had helped Mark and me get through some tough nights.

She whispered in my ear "He loved you so much."

She really is a special person.

For over a year I have dreaded this weekend.

I knew that each holiday would bring a mixture of new memories and pain that those new ones would not include Mark.  I particularly had concerns over his birthday and Christmas but as a family and with the help of our friends, those became less painful and I have very warm memories of those "firsts" without our Mark.

I am perhaps a selfish person because I have dreaded this one weekend more than any...the weekend of my birthday one day and Mother's Day the next.  It was a day that I thought would not be complete without him....and I would once again find a quiet place to cry and feel sorry for myself as I did when he was in Memphis and I didn't know that he was planning to surprise me and come home.  I knew....this year that quiet place would have to last the entire weekend.

I have spent months thinking about how I would deal with everything and what I would do.  I have read countless grief essays about how to deal with special days....and the importance of not letting the surviving siblings have feeling of never being able to fill the emptiness created by one's brother's death.  I knew it was important that I come to terms with what has happened if not for my benefit but for John's...as well as Don's.

The plans I outlined earlier did not exactly go as planned.  I was disappointed that my mom was still in the hospital and worse,  not feeling real well.  I drove out to see her early in the morning and left somewhat unhappy because she was so discouraged.  Twenty minutes after I left she called me......she was able to walk a few steps for the first time in several days.  It made me so happy.

I spent the next several hours shopping for something to put on Mark's grave and spending time there.  I imagined myself sitting there crying, but that too didn't happen.  It was actually very peaceful and I know I was there for long time.  While I was arranging the silk flowers, I was suddenly struck in the head with one of those little whirlybird things that come off of maple trees....it wasn't a light tap...it was a real clunker to the head.  I kept it.  It is in the curio cabinet. I think it was a kiss.

Don and I had a nice afternoon together.  He finished securing the gates to the grotto.  He also mowed the lawn, put the gazebo top on, put the cushions on my new swing, and helped me put out the dragonfly lights.  I was so looking forward to lighting them.

John and Tabby and the boys came over.  Danny told me I had to stay in my room....they were decorating the kitchen. When I finally was allowed out...I saw the biggest, most beautiful mylar balloon.....a dragonfly balloon.  The boys had seen it a couple of weeks earlier and told Tabby to get it for Granny.  They gave me beautiful presents including a dragonfly pin and some beautiful new clothes that I hope to save for our trip later this summer....but probably won't.  I also had a stunning cake the boys designed...yep...dragonfly birthday cake.  I know that Danny just believes I like dragonflies....but Michael really knows why and what they represent to me.

Having so many dragonflies made me realize that it was not a birthday without Mark....he was just there in another way.

I was so utterly disappointed that it rained.  I could tell John and Tabby were tired, and waiting for the rain to go away or for it to get dark enough, my plan for a dragonfly lighting wasn't going to happen.  John and Don sensed my disappointment...and John suggested that they turn on the lights under the gazebo even though it wasn't dark.  It would still mean the same thing.  So, that is what we did....lit the dragonfly lights for a few minutes without it even being dark.

It was ok, just not what I wanted or envisioned.

Shortly after John and his family left, Kris called.  She was worried about how I was doing and was concerned about us lighting the dragonflies in the rain.  I told her that with all of the wonderful cards I had received, the wonderful time I had spent with my family, my mom doing better, my Tabby making so sure that my birthday was fun for me (I know she did all the shopping, planning, wrapping....I got an angel with her) that it was OK that I didn't get to light them.  When others show they care and know that one is having an emotional time......family and friends really help.

It is now after midnight and about a half hour ago I went outside and lit the dragonflies.  I listed to the song John and Tabby had given me "Smiling Down" and stood looking at the dragonflies and remembering....Mark was there, bright little light in the dark, and he was smiling down.

Mark came home to me again for my birthday.....and maybe that is what was to be anyway....just him and me for a few moments alone, with each of us knowing that each other was ok.

It was a wonderful birthday.

I have been out at my mom's helping her with everything.  She is doing really well but does tire out easily with the walking, exercies.  Tomorrow morning she has her other knee replaced.

I will come out to see her over the weekend but we have talked, and she understands that I have a real need to be at home this weekend.  I want to be available to John whenever he has a few minutes for me, and I want to look at Mark's garden.

I finished it over this past weekend.  Both Don and I really like it.  I am saving the dragonfly lights for Saturday.....that's what I plan to do every year...light the dragonfly lights at dusk on my birthday.

So, this Saturday evening I will be in my back yard....waiting for dusk. 

Forgot to mention in my earlier posting that my mom, Grandma Joyce, had the first surgery done yesterday....she has a new left knee!!!  She is doing well after a rough day and night and even walked to the bathroom about four times today.  She said her new knee is fine...it is the right knee that is giving her fits.  She will have the right knee replaced this Tuesday.