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Monday, June 30, 2008
SignsLast weekend Lois and I went to a place that sold concrete statues, birdbaths, etc. I was actually looking for an angel
to put in Lois's garden like the one Don and I have in ours. They didn't have what I was looking for but as
Lois was browsing around I had a "Hi Mom". I saw a small birdbath and from a distance it looked like
the base was a golf ball. I went over to look at it and sure enough, it was a golf ball. I didn't see any
other ones around that had a "golf motif" and was disappointed that it had a "sold" sign on it.
Then, when I looked into the bowl of this birdbath with a golf ball for a base....there was a dragonfly etched into. Now, who, other than perhaps Don and me, would put a dragonfly in a golf ball birdbath? I know it was a "Hi,
Mom'. They didn't have any others other than this one that was sold and I don't even really want a birdbath.....but
Lois tried to get the people to sell this one to me and I did leave my name and phone number in case they got another one. I have looked everywhere. even online for it, and cannot find anything like it. I would love to know why the
people that did buy it wanted it. When I took Lois home, we stood by her pretty garden. As we stood there
talking, a dragonfly flew between us and landed on the rock right by us. Another "Hi, Mom" in case I didn't
get the first message. Mark still comes through in the strangest of ways. This past week, Kate sent
me an email about the www.savebudwesier.com site. Apparently the people doing this site are using the same company I am using for this website. Their pages
are identical to this page, even though there are at least 75 to choose from. If Mark was able to host any website from
Heaven, I am sure he would have something about saving Budweiser. It was a very quiet weekend. I think the
phone rang a total of three times, one being a wrong number. I was planning on spending time at the pool, but it was
too cool. For a lack of anything better to do, I slept a lot of the time, as did Don. We did work some in Mark's
garden but otherwise I just didn't have the energy or desire to do anything. Everytime I start to fall asleep,
I keep hoping that I will have a dream about Mark. On long, quiet days it seems that we thinking about him and missing
him in the worst way. I just have to keep looking for signs.
Tuesday, June 24, 2008
Phone callsI changed my work schedule a little. Instead of working three twelve hour shifts, I am going to work two twelves and
two eights. This way, I am not leaving Donnie three nights in a row. I know at times he likes the solitude....but
I also know there are evenings that I leave for work at 6pm that I can tell it is going to be a long evening for him.
I noticed the entry in the guestbook regarding a "stranger" to this website whose friend lost their toddler last
year. She was checking in to see how I was doing...in order to possibly gain some insight into how her friend was doing.
I have a hard time coping with life without Mark. I do not know what I would do if I didn't have all the
years we had with Mark to think about. My heart cries for this other mother. There are too many of us.
If I could send a message to this "stranger" it would be this. Don't wonder how your friend is doing...just
be there. Call her. Ask her. Talk about her child. I briefly mentioned in an earlier post...then went
back and deleted it....how it amazes me how some people we spoke to at least three or four times a week before Mark was
sick, have disappeared since Mark died.
I think I understand. I know these are busy times for a lot
of people. I know that perhaps Mark's illness and death were too close to home. There are many many days where
our phone never rings...I miss the busy times. There are just a few people like that....mostly though, our life is filled
with good friends that supported us both financially and emotionally throughout Mark's ordeal. They are still here
with us. They still come around, they still talk about Mark and that is perhaps the greatest gift of their friendships
that we have...they are determined that we know as much as is needed...that Mark hasn't been forgotten. We love
the phone calls, emails, and messages on the guestbook that tell us people are thinking about us. Some times, we feel
very much alone...and I know that is crazy.
Today I found out that the cost of this website has more than doubled.
I wondered why so much money was coming out of the account and then I got a phone call explaining that the website's rates
went up. I can't let this website go....but I am sure going to have to do some adjusting if they continue to raise
the rates. I was thinking that maybe I would have another garage sale in the fall to put money back for it. This
website has been cheaper and more effective for me than any therapy ever would have cost. Just wasn't prepared for
it. Last year it was only $9 a month and now it has gone up to $20 with a yearly fee. I can handle that for now
but I hope in the future they let me know ahead of time.
That was one phone call I could have done without.
link
Mark's gardenWhoever it was that said things would be better, easier, after one year is full of crap.
We were so emotionally
fulfilled, yet overwhelmed and exhausted over Mark's first Heaven anniversary. We got through it much better than
what I expected, yet it stayed with me throughout the week, as I know it did Don.
It isn't over and never will
be...that is what I learned. I will be "at sea" for the rest of my life.
I meant to post much sooner...but
for some reason just couldn't bring myself to this website for a couple of days. The memories were too fresh and
hurtful. I wanted to pretend that we didn't have a website for him...actually that we didn't need this website
for us....but that was just a big lie.
We still cry everyday, still wonder all that what ifs...and try to go forward
as Mick so eloquently stated in his eulogy and Mark so much wanted for us.
I think he would be pleased with the
joint effort Don and I have put forth in his garden. We are a pretty good team but I cannot remember a project that
both of us were so passionate about and stayed with together as we have Mark's garden. We discuss at length where
certain things should go, how to secure our angel statue, and the daily question: "Did you water Mark's garden?"
We are not landscapers nor are we really that good with gardening. Yet, when you have something that you need
to do, want to do....it truly becomes a labor of love. We have a small house, a small yard and last summer I couldn't
even think of where we could put a memorial garden for Mark. Together, Don and I figured it out and worked on it together.
There is nothing in that garden that we didn't discuss, move around, fiddle with. Every time we sit out on our patio
and look at the garden...we remember Mark....and how so much we loved him....and how we miss him more each day. It doesn't
get better...the missing....it only intensifies as the days go.
Yesterday was no different. With threats
of rain, Don was determined to get the yard mowed. He really only has one day to do it and I probably would drop dead
of a heart attack if I tried. He was finally done, sat down near the garden to rest. Just then, the song "Angel"
came on the radio. I tried to ignore it...it is the one song that makes both of us cry...just busied myself with something.
Don said "do you hear it?" I looked at him and tears were running down his face. It is ok....we do this
everyday. I just found my heart so full at that time because we were working on his garden and this song came on....
I have made a new link for those interested in seeing what our garden looks like. It isn't spectacular and
won't win any awards, but Donnie and I have worked very hard to get it right for us...and something that we can enjoy.
Thank you to everyone who contributed to it...my brother and sister for some of the plants and flowers...to Andy and
Jenn for the stepping stone no one is allowed to step on....and to Rachel Voyles for the very beautfiul dragonfly garden marker
that says "In Memory of Mark DeWalle."
I was thinking today, when Don and I are old and John puts us
in that nursing home that he plans to pay people to visit us at....somebody will probably buy our house and throw all the
dragonfly things away. "Those crazy people that lived here...everything is a dragonfly."
My worst
dragonfly thing...the one thing that will make everyone think I am crazy.....I have a dragonfly sink stopper. No kidding.
There is now a new link for others who have seen dragonflies. I have Mandy's dragonfly: the first that was
sent to me and......I really like the one of the Mehlville dragonfly visiting Deb and Mike.
And the one of Jason
Bruns' nametag. That one really hit our hearts.
Coach Heyde's retirement party was fabulous.
It was so much fun seeing some of our "old players" all grown up. I was especially happy to see Mark's
teammates: Tom Kaesberg, Tim McAllister, Nick Rothe, Matt Doner, Gabe Frank and Mark's little football brother (who
ended up with Mark's number), Ben Silhavy.
I kept it together...thinking frequently how Mark would want
to be there. He had talked about something that he had wanted to do for Coach when he retired and I have been in contact
with Tim at Golf Discount to see if this will be possible.
All of the speakers were great (be careful in
giving Desi a beer, a microphone and a crowd). John spoke so well....and both Don and I were really proud of him.
He has a tremendous amount of admiration and respect for Coach Heyde and I think his speech showed that. I know, he
too, felt that Mark would have totally loved the evening.
I spent a long time a month or two ago typing every player's
name....all 726 or so of them. I sent it to a couple of people and I think we got everyone on there. I just wasn't
sure what to do with it...but Scott Pope designed the most beautiful plaque I have ever seen. Now, Coach has all his
players' names in one place. I know that both of my boys were honored to have played for him...and the respect that
they have for him is unquestionable. Multiply that 724 more times. Every parent needs a Coach Heyde in their
sons' lives.
I was looking at the plaque (even though I had a zillion times already) and reading the names.
Our good friend, Denise Frank, came up to me and handed me an envelope. She said she had found a camera and didn't
know what it was so she had it developed...and it was pictures of John and Tabitha's wedding four years ago!!! She
told me there were pictures of Mark....and there were. New pictures of Mark. It was the only time I had to really
hold back tears that night....I wanted him there so bad. Through Denise's kindness...I felt that he was. I
really thank her for that moment.
Today I left the house and ran to do some errands. I decided, instead,
to head to Indian Hills and just sit at the pool for the afternoon. It was the most relaxing afternoon I have had in
a very long time. I enjoyed watching two boys throw a ball to each other...and remembered the magic of that age...so
much of their life ahead of them. But truly, the best part of being at the pool, is lying on a raft and just thinking
to yourself....I think about John and the boys, Don and of course Mark. Somehow, through the laughter of boys playing
ball....I feel comforted.
Maybe that is what you get after a year...some degree of comfort. One thing I do
know....is that the hurt never gets any better and I am always 24 seconds away from crying.
But in the pool, where
everyone is wet, no one even notices.
link
Wednesday, June 18, 2008
Rachel Voyles !!Rachel....I lost your email address. Please email me @ Barba21885@aol.com
I will be posting later today...
link
Tuesday, June 17, 2008
Going forwardDon had a very nice Father's Day. It was bittersweet without Mark...but we made sure that Mark's presence was
there. There was no way to give Don the Father's Day he has had in the past and he too, chose to turn over this
day as a celebration of John.
Both of us talked of the last card that he received from Mark...the one that he had
his sister in law purchase and he signed. John and Tabby gave it to Don shortly before we left for the funeral home
last year....and the tears still flow when he looks at it. I wasn't going to give him a card yet I happened upon
one a few weeks ago that I couldn't pass up.
It was picture of a little hand,a child's hand, reaching down
from the corner of the card to a larger hand,a dad's hand.....like a grasp to a dad from Heaven. Inside, it said:
Dad, I will never let go.
It was perfect. I didn't sign it.....just made a small drawing of a dragonfly. Don
knew who it was from.
We spent the day going from cemetery to cemetery. We placed on Mark's grave the
flowers from Lisa and some of the ones from Aunt Debe. We went to visit Don's dad's grave at Resurrection and
placed some more of the flowers on Kevin Houska's grave. We wanted to put some on Jonathan's but couldn't
find it at Sunset...will have to find out where his is located. We then put the remaining flowers on my dad's grave
at Jefferson Barracks.
After having lunch with John and his family, Don spent the rest of the afternoon
doing what he loves best...watching TV and taking a nap on Mark's couch.
We are back to work now this week
with a better feeling than last week. We certainly appreciate all the cards, notes, support that we have received.
Last week was difficult. We both felt after Friday, less stressed. I supposed a lot of it had to do with reliving
the past two weeks all over again...and when Friday was over, we knew once again that Mark was at peace.
I still,
even after one year, cannot get it into my mind that he is not here anymore. I cannot believe what has happened.
I will need this website for a very long time. It is only after I post, that I feel I have talked to Mark.
In some respect, I don't want to feel any better than I do now. I don't ever want to forget but at least we
don't have to ever go through our "firsts" without Mark again.
We are going forward, but holding
on to what we love, what we feel...and most of all...who we miss.
link
Saturday, June 14, 2008
At sea....So, so many good wishes, visits, thoughts, flowers, mementos and most of all support from our family and friends over the
past 48 hours.
For myself, I have felt the past year that although Mark left us that beautiful early morning last
June 13th, that he actually died the evening before. He had spent time with his family, his friends, his coach.....and
then went to sleep after saying his final words: "It's ok, Mom, I am ready to go."
Thursday
evening turned into a magical time. After spending time with John, Desi and Ernie finalizing plans for Coach Heyde's
retirement party....I went home. I was barely home when Scott Pope arrived....and even though I didn't know he was
coming to see us, something in my heart told me that if anyone would be stopping by, it would be Scott.
Frankie
was already here with Grant. Then....the best of all....my Mom drives into our driveway. It is the first time
in over a month that she has been here...and all on her own. I was so very glad she was here. Sometimes one just
needs their mom around.
A party type atmosphere slowly evolved as the dragonflies started lighting. Coach
Heyde and Kris, Coach Gegg and Debbie, my brother Mike, Lois Brockmeyer and Mae all were suddenly on our patio. We so
appreciated that Coach Eric Meyer came over.....he had just arrived home from vacation and we can appreciate all the hurrying
around that entails. He even offered to clean our our gutters again. Don and I were so moved that people remembered
the importance of this evening and the day to follow.....not for us....but that they remembered our Mark.
I was
doing really pretty well until Coach Heyde arrived. Mark needed to see him that evening, and once he discussed with
Coach what he wanted to say...and hear from Coach in response....then all that was left was to see his brother. John
and I have talked about their last conversation, what Mark wanted from him, the way he looked at his sister in law...and their
final goodbyes. It was magical, special, and probably what every interaction the two brothers had throughout their lives
together was wrapped up in this last time. It remains, and will always remain, something very very special to Don and
me.
Very shortly after the coaches arrived, Megan Hearst and Rachel Maixner arrived with what really brought on
my tears. They brought back the beautiful helium filled balloons they had brought to Mark a year ago. I cried
when I saw them and the balloons. Megan told me: "We want the babies to be able to let go of the balloons
again." The girls helped me put them in the exact place they were a year ago.
I cannot explain what
this meant to us. A big heartache of losing Mark was that he would lose out on his nephews, and they would lose out
on him as well. We knew what the balloons meant...and when the babies came yesterday afternoon....they immediately knew
what they meant. I asked Danny, who was only a little over 2 years old last year, what the balloons were for.
"Mark" was his response. To the Hearsts and the Maixners: the babies were SO very excited. They
ran through the house with the balloons and even though I wanted to take a picture, there was no time. They could not
wait to get outside and send them to Mark. They kissed the balloons and let them go....waving and throwing kisses just
as they did one year ago. Thank you, thank you, thank you for instilling this memory in our babies. I know that
both John and Tabitha were so deeply touched by your thoughtfulness.
As I sat visiting with our friends I realized
something. No longer are Coach Heyde, Coach Gegg and Coach Meyer former coaches and mentors of our sons.....they are
so much a part of who Don and I are. They represent what Mark loved throughout his life and it amazes me that the people
on the patio at one point had no connection to one another...except for Mark. I reminded Coach Gegg that he is
not a friend....he is our family and like it or not he is stuck with us....and Don and I feel this way about everyone else
who was there as well.
There were several who wondered if John was going to be there. I had asked John if
we were coming by..and he felt that he needed to be at home with his boys. I know that he was very very grateful for
his friends that came over to our house that evening and touched by their time and generosity. I spoke with John after
Mass and told him who was there, what was said and what went on.
As the evening went on....we had more visitors
to help us through our vigil. Jenn and Andy came over and gave us a beautiful garden stone with a dragonfly....and I
thought of all of Mark's friends this morning when I went out to his garden and looked at it. I sat there in the
very early morning hours and read through the book Kris Heyde gave me....so many wonderful, healing statements in that book.
Then, I read the book "The Next Place" given to us by the Hearsts. I was not awake enough last evening when
John and Tabitha came over....but sometime soon I am going to read this story to our babies. Every single year on the
anniversary of Mark's death, I will read it to them. Such a beautiful explanation to a very complicated subject....but
one in which Mark's nephews will grow up with. By the time they are Mark's age, they will have it memorized.
Again, thank you for the beautiful gifts that everyone gave us to help us keep focused on who Mark really was.....and not
just what happened to him.
Mark's Aunt Deb came late in the evening, followed shortly by Jeff. She and
Mike are going on a second honeymoon,,,,30 years later....and we talked into the wee hours about Mark, about life, about friends.
I was so glad to see our fool, Jeff. After Deb left, it was Jeff, Lois and me and we continued to enjoy the beautiful
night, the dragonflies, and talk and laugh about Mark.
Around 3 am or so....Mick came. I have not seen Mick
since Christmas and throughout the rest of the night my wonderful, beautiful nephews and I talked about what happened to Mark...from
the beginning to the events of last June 13th. I was so grateful to Lois who stayed with us and help support us.
It was the first time I had really talked to Mick and Jeff...and I had them to myself. We did an awful lot of crying
but I think we did more laughing than anything. I know where Mark is in their hearts. They did so much healing
for me that night.
That is what I wanted for the night, although I actually thought I would be doing a lot of soul
searching on my own. Instead, I had my beautiful friend Lois there....Mark's friends, his coaches and his cousins...all
representing factions of Mark's life that couldn't be there personally. If you are reading this...and you were
not physically there....be assured you were represented by the others. I saw twenty or thirty people behind each person
that was there.
Don went to bed around midnight....and his nephews greeted him at 5am as he drank his morning
coffee. They didn't leave until they were able to see their uncle...and it meant an awful lot to Don. Lois
stayed the entire night with me and took a brief nap before she went to church with me.
I did OK at mass.
I take pictures with me...pictures of John and Mark, pictures of Mark in his football uniform, pictures of Mark and Don, pictures
of Mark and his friends and the rest of his family. This time, I also took his christening gown. I held it, cried
in it during mass. It gave me comfort. Mass was without music and I think that helped. The sermon was about
praying for people who have lost their faith...not about Mark. He had more faith and more belief than anyone I knew.
When Mass was almost over, I realized that Andrew Brockmeyer and Kate were sitting behind us. Andrew, one of
the first people at Mark's side from the start....and still there. It made my heart so warm.
After Mass
we went out for a light breakfast, then I went home. Don told me to "pray for rain" and I did...and I could
tell that my prayers were going to be answered soon. Don had wanted "real" flowers placed on Mark's grave
and I had bought two dozen roses the day before. I went home to get the roses and as I was leaving, Donnie called.
It was raining and he was on his way to the cemetery.....so he waited there for me. Together, in the light rain, we
put roses on our beautiful son's grave.
Someone put a beautiful memorial stone "My Precious Child"
on Mark's grave. I don't know who did this.....and wish someone would tell us....because it really emotionally
impacted both Don and I. We are leaving the stone there this weekend, and I am sure by tomorrow evening Don is going
to bring it home to place it in Mark's garden.
Then I went home. Don briefly stopped to see John....he
just needed a hug from him. When Don came home, we had lunch, and then fell asleep. I slept ALL DAY....and I mean
ALL DAY. I woke up once when I heard the doorbell ring...there were beautiful flowers delivered from my sister.
The doorbell rang several more times that day......beautiful flowers from Lisa and a floral delivery of an oak tree from Mandy
and Ben.
I slept through the phone call from my sister, Katie. I also slept through the phone call from my
friend, Gwen. I so appreciated Katie remembering Mark's day....knowing that she too was hurting from not having
him there to go to hockey games with, or teasing. I am sure Gwen, like Mark, thinks I must sleep all of the time.
I remember her coming to see Mark last year and I was asleep. I will see both of them soon and get the hugs from them
both that make me feel so good.
This morning, I awoke around 4am. I went out to Mark's garden, in the
fog, and looked at the solar dragonflies, the new stone we etched the other night, the gift from Jenn and Andy, and read through
the books that Kris and the Hearst family had given us.
I made it through Mark's first Heaven anniversary.
At 6:30am this morning, I was at the cemetery. Our roses still look beautiful and there has been added a sunflower
(I think I know who that is from) and a Bud Light bottle cap............I also think I know who that is from...but it could
be one of many.
In the distance, I was not alone. There was a fox watching me.
This morning, I
told Don that I feel like I am at sea.
I am reminded of the cruise we took last year...going through the canal
that seemed to take forever, then the breakwater..still seeing the shore....then finally, finally, out at sea where all you
could see was the ocean, the waves. Peaceful, yet at the same time occasional rocking...but mostly peaceful.
Not knowing where you really are....but knowing where you are. At sea,...until you come to your final destination and
see what and who you want to see.
That's where I am right now....at sea......just floating along.
Thank you to everyone for getting my family through the canal and the breakwater....we will contine to float, and drift
along until we see our Mark again.
Until then, I will continue to remember, continue to love, and continue to be
the best mom I can be.
Friday, June 13, 2008
Night of the dragonfliesWhat we had been anticipating as a bittersweet night evolved into one that reminded Don and I how much Mark loved his friends,
and how much they loved him.
We did not really know if we would have visitors yet before the dragonflies were even
lit.....we were surrounded by warm feelings.
In two hours, I will hear the church bells ringing signifying that
Mass has started, and a reminder to me of the chimes of Mark's grandfather clock exactly one year ago. I feel at
peace, knowing that we made it through a year and listening to the stories and support of our friends.
I was so
grateful to see Frankie, Scott Pope join us early in the evening. Scott helped us start a new tradition by engraving
a dragonfly onto one of our garden stones. Uncle Mike, Frankie, Scott, myself and Don all took turns. It is something
we will do every year...a new Mark memory.
There is so much to tell....but for the next two hours, I will be quiet,
reflecting on the night long vigil that showed me the sun will shine the next day and the memories of Mark will last forever.
Later tonight, I will reflect on the day and will have for safekeeping forever the memories.
The night was glorius
and I know in my heart our Mark is safe.....
link
Thursday, June 12, 2008
1982....a very good year, at least for sonsI already posted once...it showed up as today's date but I started writing it on the 11th. It is 2am and for the
first time in a long time I cannot sleep. I went outside for awhile and looked at the solar dragonflies...and yes, I
cried a little.
I know my mom and sisters and brother and many others are concerned how we are doing. We
are OK...actually probably better than OK. I spent some time tonight reading Mark's friends myspace pages and I can tell
they have been thinking about him and what they went through last year. I feel good knowing that they still think of
him, and remember this time.
There is so much I want and need to to do today but right now I just can't sleep.
Don has decided that he is going to go to work Friday. I know that he feels that if we are together all day the memories
might become too intense. He copes by working hard and has been doing a lot of overtime lately. H wants his own
time on Friday....and we both know if he goes to mass with me, it will be even harder. He wants me to go somewhere and
get "real" flowers for Mark's grave (that is on my to do list for today) and he will stop by there himself when
he gets off of work. I respect his wishes to carry out Friday this way.
I was thinking that maybe I
would like to have a fruit plate or vegetable plate tomorrow night as I sit outside. The weather is going to hold out
for me this time and I know just sitting there thinking I will have the munchies but I have had real blood sugar issues this
week so I have to be careful. Then, I thought about having a glass of wine...maybe that would help me sleep. I
rarely drink anything alcoholic...just never have liked the taste. But, tonight, that might help me calm down and relax
some. So....I went to the refrigerator and dug in the back and found what I didn't even know we still had..........
In 1978 we bought a bottle of champagne when John was born. I vaguely remember opening it when he graduated
from high school...and then regretted we didn't save it for his wedding someday.
In 1982 we bought a bottle
of wine when Mark was born. Both times, Don made sure the year was prominently listed on the bottle. I didn't
even know we still had this....the wine we had been saving for Mark's wedding someday. I know he knew about this
bottle because he asked if he could drink it when he graduated from high school and I told him no.
I am going to
ask Don and John if we can open this bottle tomorrow or Friday. We won't have a wedding celebration for Mark, yet
I cannot think of any other time in the future where it would be appropriate to open the bottle we have saved for almost 26
years. Mark's 1st Heaven Day Anniversary.....not what Don had in mind when he bought that bottle the day we brought
Mark home.
But now, Mark is really at home....and no longer in pain....no longer suffering....and we as parents
no longer have to worry about his well being and happiness. All that has been met.
link
Monday, June 11, 2007 Time for Jeopardy
Mark has more strength than any of us. I do not remember being so emotionally
and physically exhausted as I was this morning. Don took over for the day, answering calls, meeting with Ann, Mark's
hospice nurse, and of course caring for Mark. Donnie and I have been a team for a long time and I still think he is
the best looking guy around. We will need some time to help each other after this over.
Mark
has been awake at times throughout the day. He has been sleeping and around 3:15 asked what time it was and reminded
us that Jeopardy will be on soon. He answers questions from time to time and when he answered one wrong..he waved his
hand in disgust. Otherwise, he is very quiet, breathing very shallow, and eyes are closed. Although it has been
a stressful, tiring past 24 hours....Mark seems to be restful, calm, comfortable and serene.
Mark
is surrounded by love I don't think that Mark will be suffering
much longer. It has been two weeks since he made the decision to take control and it is apparent that he is getting
closer to the goal line. Yesterday, there were few visitors outside of the immediate family. He has not initiated
any conversation and has been sleeping much more. John and Tabby again stayed throughout the night as did Grandma and
Jeff. He is totally surrounded and wrapped in love and is safe.
It has been difficult
to write everything exactly as it has transpired over the past week. There have been times when we have had very little
or no sleep. I have been reluctant to detail anything or come out and say that Mark is in his last days for fear that
he would want to see his computer and read what we have written. We tell him daily who has left messages, how many "hits"
are on the site and who has called. From the posts I can tell that many of you have been able to read between the lines. We
have not given up on him....we never ever will....we just know that his time is soon.
Last evening
he had more difficulty breathing and managing secretions so we called and had a suction machine immediately sent out.
His breathing is very shallow but he is not struggling. He does not want to be touched or moved. He is emphatic
that he no longer wants his oxygen. We are honoring all of Mark's wishes....he remains in control.
Don, myself, John, Tabby and the rest of the family are preparing for this nightmare to be over for all of us. I have
told many people that I personally will find much comfort in knowing that I will NEVER again have to worry about Mark, his
illness, his happiness, his well being. My main regret is that Michael and Danny may not remember their Uncle Mark
and how much Mark loved his little nephews. But, as Mark told Tabitha the other day "I will always be here."
Children and pets seem to know of these things we are experiencing. Sage has not eaten well
in the past week. Michael draws colors pictures frequently for Uncle Mark. Yesterday he brought one of his colorings
to Mark...it was an angel and on the angel were the words "Follow Me". I think it is quite possible that Mark
will do just that....perhaps as early as today
One year later.....
Over the weekend and into Monday morning,
I felt at times that each of Mark's breaths may be his last. He remained in control of us and everything around
him. He didn't always want his oxygen on and would only replace it when we noticed his breathing more struggled
or his energy level zapping. I believe in some respects,it was a way to provide a sort of natural anesthesia...decreasing
the amount of oxygen he had.
Unlike many people who are dying, Mark was never ever confused or unaware of his surroundings.
I dreaded him not knowing his dad, his brother, me or his friends but this never happened. Although there were one or
two times that he became irritable in his last two or three days....none of the irritability would last and he probably had
good cause for becoming upset.
I remember asking him if there were some people that he didn't want to see and
although he didn't want Rose to see him.....there was no one that came that he turned away. However, on Sunday,
he looked very bad. Juliet and Maria came over and I just knew that it would be too much for Juliet and suggested that it
might not be best. To this day, I regret it. It was selfish on my part. I knew Mark would not want to upset
her, and by this point his appearance was greatly deteriorating. I don't know if it was the right decision.
I was now trying to protect Mark's dignity and also didn't want Juliet to remember him the way he was this day.
I just don't know if it was the right thing to do or not.
From Saturday night until Monday morning, I slept
very very little. I was so afraid that I would sleep and Mark would need me, or not be there when I awoke. The
short short naps I took.....when the door would open I would literally jump out of bed.
On Sunday afternoon,
Mark told me "Mom, I can't see." I remember feeling panicked and immediately started asking him when this
started. Something told me that he had never removed his contact lenses. Even though he could wear them for a
week or two at a time, I wondered if he had lost them. He said he couldn't remember. So I dropped in some
eye drops and then he could see again.....a minimal thing, but something I remember really made me feel that the end was coming
soon.
Mark loved Jeopardy. He was actually pretty good at it. On Monday (and then again on Tuesday)
he was so aware of his surroundings that he knew Jeopardy time was coming. I know that Rich at Fairview Heights told
me later that for a long time during Mark's illness after Mark's death, they would always be sure Jeopardy was
on at the store because they knew Mark was watching it.
I told Tabitha today that remembering everything
from a year ago has much of the same meaning and feeling that I would have when I would think about the births of my boys.
I suppose much of the painful things I am not remembering. Some are very bittersweet. But the memories of Mark's
last days with us are just as precious as his first ones.....and sometimes I forget that there are other people involved and
not just his family.
I knew pretty early that we were going to have Mark. I remember that there were not
home pregnancy tests when I was expecting John...but there were with Mark. I was so excited and ran out to the living
room to tell Don that we were expecting again. We were both overjoyed and John wanted to know what was going on.
Don told him that he was going to have a baby brother or sister.....and he went back to the bedrooms to look for his new baby.
When Mark was born and John came to the hospital to see him....I was waiting in a wheelchair at the the elevator.
Johnny comes bouncing out...looking years older than when I had left him the day before...and asked "Where is my brother?"
He was, and remains, so very proud of him.
John's only disappointment in Mark was actually within hours of
bringing the baby home. Don and John were lying on the floor, with Markie lying on a blanket. Markie yawned and
John noticed that he didn't have any teeth....and this really bothered him....like we got something defective. Other
than not having any teeth, I don't think John ever found a lot of fault with his little brother.
These were
the thoughts I had of Mark in his last days...not that he was dying, but of all the wonderful things that happened since he
arrived in our family. I know that God has truly blessed me with something that no mother should be able
to say: I knew Mark from the beginning of his existence until the moment he died...even beyond that. No mother
should have to endure that....I was with him every single step of the way. Every breath he had I was aware of.
When he wasn't here....I worried about him. I would call him. I was the ultimate nagging mom....but something
deep in my soul told me that something bad was going to happen to him and I spent his entire lifetime trying to protect him.
There were many times while I was pregnant with him that it was just him and me.....not unlike his last six months.
I knew everytime he moved, when he wasn't feeling well...and when he needed me.
We were a good team...he
didn't worry because I worried for him. He had plans...and would have me carry them out. From the time he
began to speak, whenever he asked me to jump....I would jump. I regret none of it. He was my baby and I miss him
so much.
I never worried about John like I did Mark. At times, over the past year, I have begun worrying
about John more than I should. I know he understands this and has allowed me to call him in the early morning hours
when he goes to work to be sure he is OK, He has a wonderful little family...the ideal perfect wife and two boys that
love him so much. What John has is what I always hoped for Mark....true happiness.
To this day, I can look
at pictures of the grown up Mark and have feelings of happiness. He was so much fun and so full of life. It is
the pictures of him as a baby, a toddler, that make me cry. Others may have seen Mark the way he was.....I saw him as
my little baby. That's when it is the most painful.
Monday, June 9, 2008
Making the most of itSaturday, June 9, 2007 Early Saturday morning
After taking his boys to see Shrek 3, John came over to spend the night with us.
Mark enjoyed watching the Cardinal game with Susie and Scott and also visited with Ryan Volz. The Fish Man came again
and cleaned Mark's aquarium with a handy little device. Grandma Joyce was also here this evening. Mark missed
visiting with Chuck, who came when Mark was asleep. Don enjoyed talking with Chuck, who has been a very good friend.
Mark's belly is larger today than yesterday at this time. He says he is not in any pain but I can tell that his
belly is giving him some discomfort as he rubs it frequently while he is asleep. I wondered yesterday morning why he didn't
want to put a shirt on. Now I know.
Would love to convey how frustrated and helpless we feel right
now...but there are no words to describe it. So, I will just stop and go sit with Mark some more
One
year later......
From this time on, Mark became weaker every couple of hours. The shower that Don helped
him with the day before was to be his last...and also the last time he ever left his room.
I recall that after
we got him back to his couch (it took both Don and me to walk him back) he asked me about his belly. "Mom, don't
you think that maybe we should go somewhere and have them drain this?" I felt so bad...I knew that this wasn't
going to happen. It is one of the things that I should have asked for, insisted for, before we left the hospital for
good. I should have requested a drain be put in his belly so we could manage this better at home. I know while
he was in the shower he probably couldn't see his feet and could tell how things were progressing. I
explained to Mark that it would be "hours" if I took him to Barnes ER and that St. Anthony's wouldn't know
what to do with him. He wanted to know if I knew anyone who would come to the house...perhaps "Cyndi's husband".
I reminded Mark that Cyndi and Aaron Grand lived in Pittsburg now and that wasn't possible. I knew that if they
had lived here, Aaron still wouldn't be able to but for some reason didn't think it was necessary to tell Mark that.
I told him that we would continue to use the towels that seemed to help and I would "check into it." I never
did. I knew there was nothing we could do.
Later in the day, he told me that he wanted some tea from Lenny's
Sub Shop. There was a Lenny's in Memphis that Mark raved about and told me that he loved their ice tea. So,
while he was visiting with some friends, he allowed me to drive to Webster Groves to the nearest Lenny's in town and buy
a gallon of sweet tea from them. It was the longest I was away from him in over a month. I remember that they
made a fresh batch of tea for him. Later, I realized that the store was very close to Dale and Debbie Gegg's house.....I
know that all it would have taken was a phone call and Dale would have brought Mark his tea.
Through Saturday and
Sunday, I slept very little. It just seemed that Mark's time was coming closer and closer and I didn't want
to miss any time with him. Most of the time, I sat on his floor at his feet and just watched him. When I did sleep,
it was from sheer exhaustion. Every single moment was precious.
Until the end, Mark was never left alone,
and neither was our family. There was always someone there with us....and we are so ever grateful for the support.
Don and I have been receiving emails, letters, cards this week. They mean so very much....the support continues.
Sunday, June 8, 2008
This week.......Tuesday, June 5, 2007 Throughout the morning Don and I have been
sitting at Mark's bedside. John came by around 5am before going to work and Mark was aware that his brother was here.
I don't think his morphine pump was working for a few hours and that may be the reason he was awake most of the
night. He never complained of pain and just indicated that he was a little uncomfortable. He told his Dad
that he wanted us just to sit with him and that is what we have been doing. He is sleeping restfully. We have
told him that we love him, cherish him and that we will be ok. One year later....... For
the next couple of days...Don and I sat with Mark at night alone. John would come early in the morning and again in
the evenings. Mark looked forward to John coming and would tell us to be sure to wake him up when John got there.
Don and I seemed to be able to get by on little sleep and we would sit there and just watch Mark sleep...waiting for him to
awake and need something. It reminded me of when we brought him home. We would sit and watch him sleep back
then....and we came full circle and were doing it again. Both of us treasure those times with Mark. The
mornings were always busy. Mark seemed worst in the mornings..but I think that was just because Mark was not an early
morning person. Unless he had a tee time...Mark had a terrible time waking up in the morning. Scott Pope was his
roommate for a time in Memphis and will tell you how Mark had two or three alarm clocks, his phone alarm...and still would
be racing for the door. Mark always wanted me to call him and I would alternate calling his apartment phone one minute
and his cell phone the next. I can't tell you how hard it is to wake someone up three hundred miles away...and I
would just be yelling at him as I drove home from work...."wake up and answer the damn phone!" Mark's
hospice nurse always came early in the morning. It was set up for someone to come and help Mark get cleaned up....but
he only allowed it once. After that, he only wanted his Dad to help him. Sometimes Don would help him get in the
shower and other times Don would just help him in Mark's room. Don had it down to an art and Mark so trusted him
and wanted only him to do this. This particular morning I asked if his morphine could be increased. Mark
was getting a constant, although very low dose, of morphine through an IV pump. When he needed more medication, he could
push the button. We never pushed the button for him...unless he asked us to. I am used to this in the hospital
and it is always to be controlled by the patient. His nurse told me that they couldn't increase it yet because Mark
wasn't pushing it enough and that Don and I should push it several times during the night so that Mark could sleep
more than an hour or two. So, that night I would push his pain button. He would fall asleep and after an
hour, I would push it again. Once he woke up and said "Are you pushing that every five minutes?" I told
him no, that he just happened to wake up. I remember that I was feeling that I needed someone there. It was
my "shift" and Don was getting some needed sleep. It was about 5 in the morning so I called Lois Brockmeyer.
She came over and was there when the hospice nurse arrived. Mark was watching the Today Show and I wasn't really paying
any attention to what was on TV. I told the nurse that I had pushed the button a couple of times and Mark said "Yeah,
she thinks she is Dr. Kevorkian." He laughed, the nurse laughed, Lois laughed and I said "Oh, Mark."
I later realized that was the day that Kevorkian was being paroled and Mark had been listening to this on the news. I was very particular about keeping Mark's dignity and privacy. Even the day or two before he died...he would
make me leave if he had to use change his clothes, use the urinal. I tried very hard to keep his room clean and keep
all odors that might occur away. We couldn't light any candles....I always have candles going..because of the oxygen.
I wouldn't use cleaning fluids because I was afraid they wouldn't agree with him. Every morning I cleaned and
wiped down his room. I am so touched by the letters, cards and emails we have received this week. It makes
us feel so good that others remember what Mark and his family and friends were feeling a year ago. I remember
one day shortly after we brought Mark home that Don was determined to replace our air conditioner. I know that when
one is under stress you come up with all sorts of unreasonable things. I do remember that I was feeling very very
overwhelmed that morning. I don't remember where Don went...but left for some sort of errand. Father Edwin
was there and he was trying so hard to help me calm down. I remember wondering how in the world we were going to put
a new air conditioner in....let alone find the money at that time....and trying to run back and forth caring for Mark, talking
to Father, and then Don's brother came and was sitting on our porch. Uncle Dick had every right to be there....Mark
was his nephew and I knew he was very troubled about what was happening and was waiting to see Don. It isn't new
news that Dick and I do not get along. I just felt torn apart with what was happening and truly ready to scream.
I didn't like that Mark was in his room alone...and he could sense that I was overly tired, overly stressed. Then
in walks Coach Heyde. Poor guy....I just unleashed on him and starting using some really bad words about what was going
on (Father Edwin kept hitting me with his cane everytime I swore). Then Coach did what needed to be done.....he
said he would go in with Mark and I should just go downstairs and relax. That is what I did. That was the only
time during the two weeks where I was totally coming unglued....and I remember so well Coach Heyde making things better.
He probably didn't even know it. Oh...guess what happened this week....we had to finally replace the air conditioner.
It was so hot here trying to sleep during the day. We had the other one put in when I was pregnant with Mark...so it
lasted his lifetime. Don was right....just a year off. Last Friday evening I took Danny and Michael to the
Relay for Life. Don is working really long days six days a week so I encouraged him to stay home and rest. The
babies were spending the night because their mama wasn't feeling well. I didn't organize a team this year for
a couple of reasons. One is that when I called the American Cancer Society last year and told them that Mark's team
was #1 and that we had donated a portion of Mark's benefit fund and funeral gifts to them.....that I was hoping that we
could get a break on Testicular Self Exam cards for the football team. I was told "That doesn't matter, we
don't give discounts." I was really disappointed. The other reason was that I just felt that I didn't
want to concentrate on Mark's illness...am trying and have tried so hard to concentrate and celebrate his life. I did, however, want Mark's name on some of the luminarias...especially since the event was being held on Mehlville's
football field. Danny and Michael decorated their bags. They were so into it and I explained to them that
the people there would put candles in them and light them for Mark...and he would see them. We then walked the track
and they ran and ran up and down the football field. It really was special seeing two DeWalle brothers on that field
again on a Friday night. The three of us hugged the west end goal post and I told them that Uncle Mark's Superman
shirt was buried there.....and the pirate in Michael said "Like a treasure?!" Couldn't have explained
any better than that... We also saw a patient of mine, Tony Custudio. I knew his mother in law, Ginny Vierling,
well. She was a super person. Tony is still undergoing treatments and needs a lot of prayers. I was so thrilled
to see him and that he looks so good. This Thursday evening, I am planning on sitting on my patio until the very
wee hours of the morning. I am going to remember everything from last year and the years that Mark was here with us.
I just hope it doesn't rain because I am so looking forward to being with the dragonflies. Anyway that wants to
join me, I would welcome your company. I saw in the St. Francis bulletin that they do have Mark's mass
for 8am on Friday morning. I know Mark left us that morning at that time because I remember the grandfather clock that
he (with a LOT of help from Coach Heyde and Steve Gossett) built chiming as Don and I were holding him. After
8am Friday, I will not be able to say "One year ago Mark did this." I feel as though Mark's time is slowly
going away. I know in my heart that isn't really true...and I will spend the rest of my life looking over my shoulder
to see if I can see him. He told me "If you look quick, Mom, you will see me. I will never leave you."
Friday, June 6, 2008
Being selfish parentsMonday, June 4, 2007
Monday
morning
John, Tabby, Don and I are overwhelmed by the beautiful
postings made by people we know..and don't know...to this website. In answer to my good friend, Marc Engel...we
are going to keep this website up for a very very long time...if nothing us to have these thoughts readily available to us
at any given place...whether at home or at work.
Mark continues to become weak. He has
had to have the NG replaced a couple of times and last night Butch was here to help put it back in....imagine that!!!
We are trying to keep him as comfortable as we can make him and he is sleeping at intervals.
Mark's dear friend Paul has been in South Carolina all weekend visiting little Michelle. Due to the tropical storm...all
flights home were cancelled. So what did Paul do......he rented a car and brought Michelle with him and drove straight
home. Paul came across the country to back home with Mark and arrived around 4am.
The
other Paul..Paul Choe...has given Mark a marvelous gift. Starting the day before Mark came home, Paul has been
coming daily to the house and setting up a saltwater tank in Mark's room. Mark absolutely loves it and focuses
on the fish tank all the time. Michael also loves the tank and although he included Mark in his prayer the other night...John
said Michael prayed more for the "Fish Man" than anything.
We are being
pretty strict with visiting hours. We are requesting that only family drop in to see Mark. If you wish to
see him....please call us first. He is tiring and we are being somewhat selfish in wanting these moments to ourselves.
Please call 314-894-9066 and someone will let you know if and when would be the best time.
We continue to ask for your prayers for our strength
We have been overruled
In Mark's best interests, we decided this morning to restrict visitors to family. Mark is more alert and awake this
afternoon and was not happy about this decision. He said we were being "selfish" and we were
to some extent. Mark wants to see his friends so any phone conversation you may have had this morning forget about.
To compromise.....Mark spoke with John's wife, Tabitha, about this situation. We are
going to establish family only times during the day.....and friend times during the day. Please call 894-9066 or 401-1810
and let us know you want to come....we will be able to tell you what time would be best. This should allow our family
time with Mark..and time Mark has with his friends. Please limit visits to 5-10 minutes.
As we said before, we never received the book on how to do this...and don't know what direction to take. If we come
up with definite times...then we will post those. Until then, feel free to call.
One year later......
This little activity I created for myself has been much harder than I thought. Even now, I cannot put into words everything
that happened, everything that we felt. So much I will need to keep in my heart.
I do recall that as
the days progressed, Mark became increasingly weaker. There were several nights it was just Don and me...and we were
(and remain) a great team. We tagged teamed it much of the nights we were alone with Mark. We never every left
him alone...there was always one of us awake and near him. I think we were very good parents for Mark during this time.
It was during this week that Mark decided he didn't want to be in bed and instead spent much of the time
on his little couch in his room. When he walked into the house from the ambulance....he only left his room two or three
times when Don helped him in the shower. The rest of the time he spent on his little couch....until the morning before
he died and Butch helped Don and me get him back into bed.
We thought that he was tiring from too many visitors.
When he learned of this, Mark was very vocally upset with both of us. He told us we were selfish and not honoring his
wishes....his friends needed him right now and he needed his friends. He told me that if I wanted time alone...all I
had to do was say something and he would ask people to leave. The nights were reserved for us....and for several nights
he didn't want anyone staying but us.
Mark had asked me a few days after he came home "I don't want
the babies here anymore." I was crushed and it ran through my head "how will I explain this to John,"
When I asked Mark if they were too active for him he said emphatically "NO! They are fine...but Mom, I am dying.
I look like an old man. I don't want them to remember me this way." I reminded him that his nephews saw
nothing different about him...they knew he was sick and they never asked about the tubes, the hospital bed, the physical changes
Mark had...they just loved his uncle." This request, however, lasted only about a day or two. I remember
when he asked "I want Michael and Danny here...I need to see them."
There was one person Mark did not
allow in to see him throughout these two weeks and that was Rose Spehr who lives behind us. She had lost her husband,
Ray, the month we found out Mark had cancer three years before. Ray and Mark were buddies. Mark wanted to take
Ray to school for show and tell when they were studying wars because Ray had been in the Navy. Ray is the person that
introduced Mark to golf. Tony Chytla once asked Mark where he learned his stance, his golf swing and Mark said "Ray."
When Ray came home with Hospice...Mark went to see him. I don't believe that Rose ever told Ray that Mark was sick....and
if she did she minimized it. Mark helped walk Ray to his bed one afternoon.....and shortly after he died. Mark
was crushed. I remember him being so concerned about Rose.......and he didn't want her experiencing that again.
So, when Rose came over to see Mark....he told me that he didn't want her to see him..."She has been through enough"
Even today, I feel bad that I had to tell Rose no....but I think she has always understood why.
Don and I have
been talking a lot about last year. I have told Don that although there has never been favorites in our family, I feel,
and have always felt, that my boys...especially Mark...loved their Dad more. It is ok. I understand why they love
him. I was the workhorse...Dad was the one Mark loved to hug. I remember that one morning I had spent a lot of
time with Mark...arranging things, replacing his NG, doing anything that he requested. It was the morning he told me
that the babies shouldn't come over anymore. He asked for a cold towel and Don heard him and said he would bring
it in. When he did...Mark looked at him and said "Thank you so much, Dad." I said "I have
been working my butt off in here...you haven't thanked me!!" I was really just kidding him and he told me that
was "my job".......but really all in jest.
He kept his sense of humor. We had every conceivable
drink in the house...all kinds of Gatorade, juices, Powerade, bottled water, flavored bottle water. We would have to
get the Slurpees only from 7-11 and the crushed ice he only wanted from QT. This particular morning...he asked
for blue Gatorade. It was the one color we didn't have. I asked him if I could go get it....he very very rarely
would let me leave. He told me "OK" and as I got up and started to walk out of the room...he asked where I
was going to go to get it. Knowing that he was very particular about such things I told him I thought I would go to
Schnucks because I knew they had it..."That's fine." was his response. I was almost out the door when
he called me back. "Mom, while you are there, don't buy any green bananas." Then he laughed and
laughed and laughed. I saw him smile, chuckle over the next few days....but that was the last time I really saw him
laugh.
Don and I were commenting last evening how everyday seemed like a block party. Mark was weak,
but he really enjoyed the many visitors. I believe in time, I will forget about the machines, the oxygen, the tubes
and all the medical supplies I had crammed into the little computer room to keep out of site. But I will never forget
the most important medicine that he had during these two weeks....the people who came to see him.
I remember that
Coach Eric Meyer and his wife, Kellie, would come buy very often. I remember Coach climbing up on top of our house to
clean out the gutters...it had rained earlier and he noticed the drainspots weren't flowing real well. We, of course,
had not paid any attention to such things over the past six months. No one asked him to...he just grabbed a ladder and
started doing that. I remember Frankie coming over and mowing the lawn. Neighbors would put out our trash, return
the trash cans for us. We were surrounded by people not only helping Mark...but helping us.
I sent Lisa Tretter
to the store one night....actually very early in the morning. There were things I needed and I gave her my debit card.
While she was gone, I checked our checking account and there was only $19 in it....and of course my card was denied.
I didn't even know what day of the week it was and wasn't even sure that I had a paycheck coming. I know I still
owe Lisa for those groceries....I tried to pay her then and she wouldn't let me...but I know I still owe her.
The day Mark went home, Paul called me and asked if he thought he should still go to South Carolina. He had planned
a short trip to visit Little Michelle and I knew he was concerned about Mark dying before he got back. When that storm
hit South Carolina and flights were cancelled....I don't remember how I found out he was driving back....one of the girls
probably told me. I told Mark that Paul was driving back and bringing Michelle.....and "Mark, you have to wait
for them." I was very concerned because Mark was deteriorating quickly as the days went....and he assured me he
would wait for them and he did. He was very glad to see Paul when they got here around 4am....and I could see the look
in his face when he saw Michelle. I know when I told him Michelle was coming his face just lit up. Mark loved
his teammates and friends.....but those girls of his....they really had a big place in his heart. He loved them all
and from conversations, emails, etc with them...Mark continues to watch over his girls.
I could sense how angry
Mark was with Don and me for thinking to restrict visitors. Mark decided that he would talk with Tabby about how to
handle things and I was glad when she and John came over and suggested the same thing. Mark truly loved her and respected
her opinions. I know that one evening he had several visitors and Tabby was taking a very needed night out with her
friends...and happened to stop by to see Mark. His face literally lit up when she came in his room...alone without his
brother. I really think that was the only time that he wanted people to leave. I also know that because she
was one of the last people he asked to see before he died, that she was very special in his heart. He knew his brother
was going through some very difficult times and would have even harder ones to face. He also knew that Tabitha was going
to be the glue to keep us all together.
The very first week was spent figuring out what to do, what would work,
and how to manage the task we were facing. It was so hard during this time. I really don't remembering crying
too much...just feeling so low, so sad, and so disappointed that this was happening. I was too tired for tears.....they
would come later.
Wednesday, June 4, 2008
Sunday, June 3, 2007 Sunday Morning
Yesterday there were many visitors. Gwen Houska came and I was asleep and so
disappointed that I missed her. She brought Mark a beautiful comfort cross which is near him.
At Mark's bedside throughout the night was a real angel. Tony Bernil flew in from Memphis and comforted Mark all
night long. Mark was very grateful that Tony was here. Mark and Tony met at Golf Discount in Memphis and became
very close friends.
Please pray for our family's strength, today and in the coming days.
We will be ok....we just will need everyone's support, guidance and patience. Remember, Mark belongs to us
all...family, friends, teammates, coaches, coworkers......all of us made up Mark. One year later..... How I remember that night that Tony Bernil took time away from Memphis and flew up to see Mark. He had called
the day before and I didn't tell Mark because I wasn't sure who Tony was and if he was really coming. I had
been in contact one or two times with Mark's friends Liz and Mike...but after their visit in January, contact with them
for some reason was minimal. Tony was absolutely fantastic with all of us. Within minutes we felt as if we
knew him. I recall him sitting at Mark's bedside all night. He left briefly because Mark wanted bottled water
and we were running low...he went to Walmart and bought five cases...at three in the morning. Tony was a customer
of Mark's. I remembered Mark talking about him. They worked out some sort of scheme where both came out winners
and Mark was always assured of a nice sale when Tony's clients came to town. In fact, Tony was in town for the golf
tournament. He didn't play and didn't tell anyone he was coming....and Mark was delighted when he showed up. I remember Tony giving Mark a travel rosary..he told Mark he always kept it with him when he traveled and he wanted
Mark to have it. Throughout that day and days to follow....Mark kept it near him. Don and I were not sure if Tony
would be at the funeral....but he did come on Sunday and was here for the services on Monday. I gave Tony back his rosary....Mark
wanted to be sure that he had it to help keep him safe in his travels. I know that it helped Mark in his. We
haven't heard from Tony since the funeral...maybe once. We have never heard from Liz or Mike. I am not real
sure...but perhaps they were angels sent just to help Mark. This is just two or three...most of all of our friends
have been so supportive and have made an effort to let us know they are still there. They send us their prayers, they
send us messages on this website. It is the ones who never ever contact us that hurts. You learn who your
true friends are in times like this. I remember so vividly Debbie and Dale Gegg coming by that Sunday morning with
some fresh and wonderful pastry. It was so very kind of them and it is something Don and I have never forgotten.
I know that Mark was pleased that Coach Gegg read the Intercessions at his mass. Then, several weeks later, I was able
to connect Coach Gegg's family with ours....Don and him are 4th cousins. I also remember during these times
that Blarney Stone kept sending us food, and more food. Everyday Jenn would come with food that would feed our family
and friends. I was so grateful. Cooking odors did not set right with Mark..and this kind gesture eliminated any
need....Don and I were able to spend more time with Mark. Then there is the Fish Man....Paul Choe. The money
and efforts he put into setting up Mark's saltwater tank gave everyone else something else to focus on. When people
would come into see Mark, and not know exactly what to say, the fish tank allowed a diversion for everyone. I have worked
very hard over the past year to keep it going...a lot of learning for this old girl. Mark told me "Mom, you will
kill everything in it...but so would I. Just keep at it, you will get it." So many friends, so much
support that we all have from everyone. Giving Don, me and John the gift of time without worrying about the mundane
and routine things in life is something that we will never forget.
Sunday, June 1, 2008
Remembering: Saturday, June 2, 2007 Home
Mark is at home and with caring for him and the many visitors, I have not had the
time to post a new blog.
Everyone and we mean everyone has been so kind and understanding
of our need to limit the time people are spending with Mark. He tires so easy. Please be aware that Mark is grateful
for his many friends and this is one of the reasons that he came home.
Julie, one of his nurses
from 7900 has stopped by and I was so happy she did yesterday morning. She helped our wonderful hospice nurse, Ann,
replace Mark's NG tube and her support. She has been an angel, as all the nurses and physicians on 7900 have been.
Julie said everyone there was asking about Mark and we send them our hugs and kisses.
Mark is
at peace with his decision. He has had daily visits from either our family priest, Father Edwin, or from Tabitha's
grandfather, Pastor Hanson. He has spoken at length with John regarding his wishes. I feel our prayers have been
answered...perhaps not as we had wanted....but in a different manner.
We want people to come
see Mark but have set up "gatekeepers" who are our beautiful Lisa, Mandy and Tyonn. Please do not take offense
if they ask for some quiet time for the family or suggest that Mark needs rest. They are in command when they are here
and have been so helpful to our family.
I will post more later today. My friend, Patty
O'Toole is coming over after a long 12 hour shift at work, and I look forward to spending some time with my co-worker.
Those of you who have been by already know that Don, myself, John and Tabby, Grandma and everyone else
is hurting right now...but we are ok and get a lot of strength from our faith, our friends, and our very special Mark.
One year later.....
I am not real sure, but I think Mark on purpose pulled his NG tube out the afternoon
before he went home. Several of the nurses gave me extra tubes, knowing that he may need it put back in soon.
They knew that although it wasn't something I really wanted to do, it was something I could do if needed.
Mark's
cancer created a total ileus....a total paralysis of his GI tract starting with his stomach. With each hour, his stomach
was filling up with natural body juices...and no where to go. This isn't entirely what was making his abdomen large.....a
lot of the ascites was from tumors in his liver and throughout his abdomen. But, having an NG in and connected to a
continuous suction allowed him to drink anything and everything that he wanted....he would drink and fill his stomach, and
the NG tube would continuously siphon it out again from his stomach.
Everyone became very adept at keeping the
suction container empty and clean. There were several times that we had to change his NG tube and one of them was when
Julie came over. I remember Mark was so very glad to see her.
This was the morning that I started to go into
Mark's room...the door was slightly shut...and when I entered I was told to leave. John was sitting on the floor
and they were talking. I apologized for interrupting and went out to the veranda and talked with Don. I asked
him if he knew what the boys were talking about....and he didn't know. Later, I was allowed back in and Mark
told me that he was discussing with John "things" and also about his funeral. He told me that John knew what
he wanted and that if there was any decision that we felt we couldn't decide upon....John was to have the final word.
He told us that he wanted us to take a trip....to use the money he had saved in his checking account...and do something from
him. He wanted the babies to go to Disney World....but wanted to be sure that Don and I went somewhere as well.
"You have to start living again after I am gone" was what he told me.
I told him that he was right...what
he had told me earlier....that there would be many many people at his funeral. He wanted Father Edwin to say mass.....and
he was troubled that not all of his friends could be pallbearers. He worried about particular friends...the girls...Scott
Pope, Tim Watkins. He regretted that he wouldn't see Scott Gartner's baby. I told him "yes you will.....you
play with that baby before you send him to Scott and Susie."
He told me that he wanted something "Important"
added to his obituary....I think I told him that John was going to write it and it would be long like his grandfather's
was. He said "Make sure to mention my friends....they are to take care of each other. And that I love John
with all my heart."
I remember Patti O'Toole did come early that morning...bringing some suction containers
we thought might work better. Mark took one look at them and said "they will not work." Try as we might, Patti
and I couldn't get them to work with his equipment. Patti still laughs today how when I turned around, she looked
at Mark and he was rolling his eyes at me.
I also remember that shortly after the hospice social worker came.
I told him out on the front porch that Mark was at peace with everything and had discussed what he needed to discuss with
us. We had all bases covered. The social worker wanted to see Mark, and I am still angry that he apparently started
asking Mark questions. After he left, Mark was angry. He told me that he did not want any more hospice people
coming except for the nurses. That was it.
Our home turned into a 24 hour site of activity. There were
always people coming and going. I think I wore the same two sundresses for a week..washing one day and wearing the next.
Mark called them my "moo moos". The first two days at home Mark was very vocal, talking a lot
and loving, absolutely loving his friends coming over.
No longer did I have him to myself. All those
months leading up to this...it would be just Mark and I in the late evenings/early mornings. He would not let me sleep
until he fell asleep...and if I went to bed, he would come and get me. He would tell me that he finally felt like eating
something, or needed some medication. For six months, I slept virtually every night in his room. I never slept
really sound..because when I did, I would snore and he would throw at me anything that he had within reach. In the hospital,
he used a rolled up newspaper and would pounce me on the head. I still have it.....
The computer room became
our catch all room...anything not in use and all of Mark's extra supplies. I tried so very hard to keep things neat
and clean for him...and avoid any clutter. In a little house, it is hard to do.
Mark and I had talked about
what he believed and his faith several times. He told me in April that if he died....he would be ok....he was going
to Heaven. He told me that we would be the ones hurting and that bothered him. I told him then we would be ok.
I promised him. I have never ever felt that he wasn't in Heaven.
During these first few days....I enjoyed
spending time with our family. I reminded several that this was all about Mark....and would not tolerate any attitudes
from family members or friends. Every one else's feelings and needs were put aside. I am sure I ruffled some
feathers...but this was all about Mark. I still think I am right. We slept few hours at a time.....and we kept
our promise to him that he would never be alone.
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