Tuesday, June 30, 2009

Letting the doctor know

I guess I'm still in the anger part of my grief, and part of that anger is directed towards my mother's oncologist. This is partly because mom saw him regularly for a couple of years and the diagnosis of ovarian cancer was still missed! Ovarian cancer has been called the silent killer because there are no reliable screening tests for it. The translation means that doctors have to do it the old fashioned way, getting a good history, listening to the patient and being good clinicians. We use to call that skill.

The truth is there are a group of symptoms that could mean ovarian cancer.



So this is me blowing off a little steam with the oncologist.

Dear Doctor:

I am writing to let you know that my mother, died on June 22, 2009.

As you know, mom started complaining more and more of extreme fatigue and a loss of appetite late last year and into the 2009. At the time, I thought her myeloma was progressing and apparently you did too although my understanding is that for the most part it seemed to be under control and progressing slowly if at all. It was not until mom collapsed completely at the end of March and was hospitalized that Dr. K. made the unexpected diagnosis of ovarian cancer.

I now know that mom’s symptoms were classic signs for ovarian cancer. I have further learned that women who have had cancer before are at higher risks of having ovarian cancer. Mom of course had had bladder cancer and also the multiple myeloma.

I am writing now to let you know how disappointed I am that this was not caught sooner. I understand that there is no reliable “screening” mechanism for ovarian cancer. However, since my mother was seeing you regularly and her signs were classic for the disease AND since she already had cancer which made her at higher risk for ovarian cancer, I am astonished that this wasn’t picked up sooner.

In my opinion, you dropped the ball on this one. I don’t know if it would have made a difference if you had drawn a CA 125 earlier or if you had really listened to her and suspected ovarian cancer last December or January if it would have prolonged her life or not. But I do know that by the time it was found she was too weak to do the chemotherapy protocols and she never had a chance or a choice. And so now I am without my mother and my children no longer have a grandmother.

I know she was an 81-year-old woman with terminal cancer anyway, but before the ovarian cancer became symptomatic, she had a good, vibrant and productive life with her family and the community. Her life had meaning and was important to a lot of people. She mattered and I think it is tragic that this was not diagnosed sooner particularly since her symptoms were precisely what is presented on the Ovarian Cancer web site. I hold you partially responsible for this.

I would hope that in the future, if any other older women present this way that you would immediately suspect ovarian cancer and treat them accordingly.

Sincerely,






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My Daily Domestic Diigolet 06/30/2009

  • tags: death, cancer



    • Why, despite our honest efforts, are we doing such an inadequate job with end-of-life care? Why did SUPPORT fail even to begin to alleviate the problems it set out to address? What are the implications of the public's perception that care is frequently impersonal and mechanical? And, finally, what can be done about this perception?

    • Hospice offers humane care with an emphasis on the relief of both physical and mental pain. But only a small percentage of patients avail themselves of this opportunity, perhaps because entering hospice means accepting death and "defeat."
  • tags: cancer

    • If a lot has changed in recent years in the field of controlling physical pain, thanks to new medicines and new therapeutic approaches, it is also important to remember that the cancer patient's pain at this stage is global, not only physical but made up of numerous other components which are not always recognised by others such as anger, anxiety, rejection, depression, abandon and exhaustion, which are frequently experienced not only by the patient but also by the people who share this dramatic experience with the patient.
    • These feelings become more and more negative as time slowly passes and patients become more and more aware that there is no future; that their days are ending. They re-live the whole experience of the illness seeing some events as insignificant such as time in remission or symptoms, while magnifying others such as late diagnosis, bureaucratic difficulties and useless suffering (given the outcome) due to therapy. Therefore every action taken or decision made is seen as a mistake since they have not been definitively cured. In this situation, apart from the anger with those who have suggested or imposed a diagnosis or a course of treatment, a patient can also start to blame him or herself for not having accepted advice or on the contrary for having insisted on a certain course of treatment. To all this we can add other feelings of fear of being in hospital far from home, from family, of physical pain or worrying about how the family will cope ‘after’.
    • The knowledge that you are in the last days of your life, a time which is not seen as a residual moment before death but more as a moment to prepare for death, is often terrifying because it continues for a period of time, it is a process. This is why people wish death to be quick and not to have this experience of being aware that they are dying.
    • The illness may be incurable but the patient can always be treated in the most honest way possible while respecting just to what extent the patient is willing to share this experience.
    • Maybe even today a ‘good death’ in many cases is still only an illusion, but maybe, even if only in a very limited way, we are moving closer to death in patients with degenerative illnesses which is no longer dominated by physical pain or by those components which make dying and leaving loved ones such a terrifying experience.

Posted from Diigo. The rest of my favorite links are here.

Monday, June 29, 2009

Parenting a Child through Long illnesses of a loved one, and grief.

I first blogged about this in 2007, but it seems appropriate to republish it now. I have added to it as well.

Probably one of the most difficult times to parent is during a time of grief. There is such a flurry of activity preparing for the funeral arrangements and greeting out of town friends and relatives. Or perhaps the death of a loved one is in a different town and it is your family with children that has to travel to the funeral. Either way it can be an unusually stressful time for parents and for the children.

If the death of a loved one is preceded by an extended illness children and parents can feel even more fatigued and stressed.

My family has had both scenarios. Our stillborn son was buried here at home and all of those arrangements were locally. Grandma's funeral last week was also local. But we have also had to travel distances of four our more hours to attend the funeral of a grandma and an aunt, both times with children three and under. Here are some tips that worked for us.

1. Death is a part of life. In a Catholic family there are lots of opportunities to honor and talk about the saints that have gone before us, discussions about death, heaven, hell, illness etc. These discussions can occur regularly and naturally. It is not a sad thing to discuss with children, but more just a natural part of their development that one would discuss on their level. Discuss death just as you would money, sexuality, or vocations - naturally and bit by bit as they are ready for it.

On the same note, during mom's extended illness my kids always accompanied my on visits to her nursing home or at the hospital. When she was very ill it was just the teens, but for the many many weeks prior to that even Rosie came to visit and even knew the way to Grandma's room. And if the visit was too intense, or if grandma was too sick for little visitors they went to a family room in the facility to play quietly or watch t.v. until we were ready to leave. Izzy, Noah and Rosie made quite a few friends from the other residents that way!

By visiting Grandma regularly they saw her decline for themselves and when the end came they were more prepared for it.

2. Don't hide your sadness from your children. They will know something is wrong anyway. Trying to hide it just makes it worse. What they can imagine is always worse than the reality. Model grief for them. Let them see how it is done.

3. Include children in the funeral home and funeral as much as possible. For my children, the time in the funeral home for both of their grandmothers' calling hours was filled with fellowship and happiness. They reconnected with their cousins, there was plenty of good food and to them it was like a large family party. The only difference was grandma was in her casket. I let my children approach grandma when they were ready. The older ones would kneel and pray and the rejoin their cousins downstairs. The little ones would venture near and touch the wood. One little cousin came up and kissed grandma's hand and then scooted away. I saw him later with a donut. The whole atmosphere was very natural.




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Rosie beside her Grandma's casket during calling hours.

We had a similar party after the funeral and burial of our baby and the children still have very fond memories of Raphael's party.

4. Include older children in the funeral if possible. At grandma's funeral one cousin sang a solo, some were pall bearers, some ushers or readers. At baby Raphael's funeral his two older brothers served the mass. Participating made them feel grown up and  they were really important to what was going on around them. For Grandma's funeral this time two of her granddaughters did the readings, her two younger granddaughters brought up the gifts, and her six grandsons were pall bearers.

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5. Babies and toddlers at a funeral can be trouble, but I wouldn't necessarily exclude them. (ADDENDUM: I would not take a baby or small child to a baby's funeral. That would be insensitive. I'm speaking in general of an adult funeral.) Older relatives and friends will love to see them. But for the more solemn parts it might be best if they can be in another room with an adult or older child. At my sister-in-law's funeral I took my baby and toddler out and I was so happy to have a private room where they could watch Veggie Tale videos and no one could hear them fuss.

6. After the funeral it might be nice to make a scrap book or other remembrance of the deceased. Let the children help to pick the pictures and decorate. Also during the month of November, the traditional month for remembering the dead, have the children help you make a special place in your home for remembering and honoring those that have passed on before.

November - Remembering our beloved dead
7. Make visiting the cemetery a fun occasion! We visit our baby's grave regularly but on his birthday we always try to take out balloons and a cake to share. We also love to visit at Christmas time with all of the pretty decorations that others leave and Memorial where the cemetery looks like a rolling sea of red white and blue flags!

8. Visiting cemeteries can be educational too! In Ohio we have the tombs of two famous presidents, Garfield and McKinley and my older children have learned much about those time periods before and after our visits to those spots.






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My Daily Domestic Diigolet 06/29/2009

  • tags: no_tag

    • Currently, most women receive chemotherapy intravenously. They should still do so, but many should get the drugs abdominally as well. The combined treatment should be offered to every woman who meets the medical criteria for it, and doctors who cannot provide it should refer women to clinics that can, the cancer experts say, adding that patients should ask their doctors about it
  • tags: no_tag

    • The disease is so deadly because it has hardly any symptoms and so is often advanced by the time it is diagnosed. It usually kills by spreading through the abdomen and attacking the intestines, kidneys and other organs. Bloating, weight gain, bowel problems and other vague abdominal symptoms may occur early on, but often they are mistakenly blamed on other ailments, especially in older women. There is no reliable means of early detection.
    • Dr. Armstrong said that extensive and meticulous surgery to remove the cancer is absolutely essential if either the abdominal treatment or standard chemotherapy is to succeed. Such surgery, known as "debulking," is more important for this disease than for other types of cancer, because studies have shown it has more of impact on survival. It may require removing parts of the intestine, spleen and other organs. Ideally, the operation should leave behind no tumors bigger than a centimeter in diameter, or 0.39 inches. The drugs work best when they have fewer cancer cells to kill, and when the tumor masses are small enough for the medicine to penetrate.

Posted from Diigo. The rest of my favorite links are here.

Did I mention...

that last week between planning a funeral and a funeral luncheon we also had swimming lessons...

My creation

and a birthday party?
My creation




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Simple Woman



I feel kind of silly still doing these since the Simple Woman site is shut down for the summer. I'm not sure why I continue to link to it except we were asked to. At this point I guess I am really keeping it up because I enjoy doing these, and it makes a nice snap shot of my life every week, and because I miss it when I don't. Maybe my kids will enjoy reading these in the future.

I realize by blogging more about the death of my mother I'm probably going to alienate some of my readers, but it is what it is and right now; it's what I am thinking about the most. Later this week I plan to write about hospice, ovarian cancer, and just my overall view of the way the medical community handled mom over these past six months. And a lot of that is going to come off as ranting - but hey, it's cheaper than therapy!

Outside my window...
The sky is blue and bright - which makes me feel a bit sadder.

I am thinking...
a lot about my mother's death. The day she died it was clear that her condition had really deteriorated. She was breathing faster, her mouth was open, her neck arched as if to get more oxygen. And even though her eyes were open when I waved my arms or made any motion she did not see me or react. It totally was not the death I wanted for her. I had envisioned with hospice she would go closer to the way her father had gone, from deep sleep, to coma, to death - seamlessly and effortlessly and with the help of heavy pain medication if necessary. And if that wasn't possible, then I wonder why hospice wasn't there to explain what was happening and why it was happening and suggest some comfort measures. Showing up after the fact was not helpful and I'm still a little steamed about it.

I am thankful for... all of my family and friends, including all of you who have left comments and prayed for me and my family. We felt well loved and surrounded by prayer.


From the learning rooms...I have to keep swimming going this week and math with the kids, but I think I'm going to let everything else drop this week. I feel as if I have been hit by a truck and I just need some time to recover.

From the kitchen... Some very sweet folks have brought us meals over the past few days and we are due for another meal tomorrow. So I am looking forward to that.

I am wearing...a celery green jumper and white T shirt.

I am creating... I don't have a creative urge in my body just now. I am just going to rest.

I am going... to be typing more this week. One of my main clients is taking a 3 week vacation in July so he is piling on the work now - unfortunate timing for me I suppose, but a good diversion.

I am reading... through a lot of my mom's old prayer books trying to decide what to keep, what to give away, what to put on eBay and what just needs to be pitched.

I am hoping... to see God's plan in mom's passing because right now, I don't get it. I realize the rest of the world sees an old lady with cancer who died. But I see a vibrant woman with lots of talent and lots of love to give to her community and family and I don't get it. I particularly don't understand why her death had to be so difficult. Was her suffering for her? or was it something we were supposed to witness for our own benefit?

I am hearing... The air conditioner which actually masks the usual buzzing in my ears.

Around the house... putting stuff away from the funeral.

A few plans for the rest of the week: writing some funeral thank you cards.

A picture I am sharing:

Copy (2) of P1050553

My last look at my mom's hands.




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Sunday, June 28, 2009

Scenes from a Catholic Funeral

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Lots of grandchildren and friends at the calling hours.

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Flowers and pictures - celebrating a life well loved.

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Taking a break before during calling hours.

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A lovely tribute

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The funeral

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The six grandsons are grandma's pall bearers. I love this picture.

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And the part grandma would have enjoyed the most- the luncheon.
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My brother and sister-in-law.

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My mother's Goddaughter.

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Sunday Snippets--A Catholic Carnival is a weekly opportunity to share our best posts with the wider Catholic blogging community. To participate, create a post highlighting posts that would be of interest to Catholics and link to the host blog at This That and the Other Blog. Go to the host blog and leave a comment giving a link to your post.





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Wednesday, June 24, 2009

My Daily Domestic Diigolet 06/25/2009


Posted from Diigo. The rest of Catholic group favorite links are here.

Making it until Saturday

All of the arrangements have been made and I am just putting the finishing touch on things for my mom's calling hours and funeral.

Sleeping for me has been very very difficult. My mother's death was not the sweet, easy passing from deep slumber into death that I had hoped it would be with the help of hospice. In fact, I am very upset with the lack of a role hospice played in my mom's care and wondering what the heck they billed Medicare for.

Basically on Monday, I knew that after the weeks and weeks of Mom hovering in the near vicinity of dying, she was finally taking the trip. Her legs were starting to turn purple, I could hear the "death rattle" in her throat and she had a fever. I had read about those signs and I was prepared for them. She hadn't had those particular signs before, so I knew we were getting closer. However I was not prepared for and I had not read that her back would be arched, her head would be thrown back, her eyes and mouth wide open as if she was starving for oxygen. I held her hand but she could not be comforted. So I asked mom's nurse if she could have oxygen just for a comfort measure and the nurse was very willing to do that if it would help mom feel better. She couldn't figure out why mom was taking that position either and we readjusted her head and neck. The nurse also assured me that mom had had her scheduled morphine.


Originally uploaded by Tracie Taylor Photography

I stayed with mom an hour and then went to pick up Sam and take him home. I checked a few e-mails, talked to my sister and then headed back to the nursing home. But by the time I arrived she was gone. I'm not upset about that. I knew about a study that determined that more than 80% of the people die alone, even if they are surrounded by loved ones. So I knew that was a possibility. But I was not prepared to see my mother in what can only be described as a hideous position and agonized expression as if she had received no comfort at all. And this is what I mean by calling this a brutal death.

A very chipper and sweet hospice nurse arrived shortly thereafter and tried to be very helpful, but really she was in the way more than anything else. I had to find the number for the funeral home for her as she wasn't even from the area. But it was a regular aid from the nursing home who readjusted mom's body, put a towel under her chin to close her mouth and gave her hair a quick brushing.

Today someone from hospice called to see if there was anything they could do.

"Yea, actually there is." And I started to explain that this was not the first death I had witnessed but it was by far the most painful and agonizing to watch. Is this what cancer death is supposed to look like? Is there nothing hospice could do to make the death more painless, sedate and easy? and if not, what the heck were we paying them for?

And at that point I pretty much lost it with the person on the phone. I have been angry and haunted by this ever since I saw my mother on Monday and I want to know why. The explanation, "every death is different" doesn't quite cut it with me right now. My mother struggled in agony while we helplessly looked on and they weren't there to help, explain or alleviate. I am getting furious just thinking about it.

The unfortunate hospice caller told me that someone would come to the calling hours on Friday.

"Don't bother!" I said in a rather stern scolding voice, "We don't need you there and I don't want you there."

I'm sure she'll pass the message along.







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Tuesday, June 23, 2009

My Daily Domestic Diigolet 06/24/2009


Posted from Diigo. The rest of Catholic group favorite links are here.

Maryrose Esquibel 1928-2009


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Originally uploaded by elliemom

Mom passed away last night around 5:15.

I am truly stunned, not that she passed away but in how she died. In may ways I would say that her death was brutal. So in that respect I take great comfort in knowing that her suffering is over and that she is at peace in Jesus Christ.

Mom had a lot of family that predeceased her in death, and I do take a lot of comfort in thinking about the reunion that is going on there.

Monday, June 22, 2009

A 10th birthday

When I was turning 10 years old, my mother threw a great big birthday party for me and this one was memorable because it was the first time we included friends from school. I remember mama helped me to send out the invitations and she planned games and activities. I particularly remember she took me and my friends on a tour all around our big dairy farm and after the tour she had a quiz and which ever kid got the most answers right won a prize! I thought that was so clever of her!

And that's what I remember about turning 10. I can't remember who was there or what we did, and I only remember one particular birthday present, but I remember my mother's involvement in trying to make my day special.

Tomorrow my daughter turns 10 years old. She is gorgeous and sweet, smart and delightful. Everyone who meets her mentions how beautiful she is, and then after they spend some time with her they see that beauty is much more than skin deep. Because Izzy was born by emergency C-section (ambulance ride, prolapsed cord, surgery under general anesthetic, APGAR of 1 etc.) my mother was particularly worried about both of us. But she was also charged with watching Baby Noah who was only 15 months old at the time. When we came home Mom spent hours rocking both babies in her rocking chair so I could sleep. I can't think about Rosie's birth without remember how important Mom was in our lives then, and what an active part she had in taking care of the kids.

The hospice nurse thinks Mom only has a few hours or days left, but she can't be certain. There is a good chance she will die on Izzy's birthday tomorrow, which I find to be such a bittersweet turn of events.

It seems easier to succumb to the grief and postpone the birthday celebrations, but I'm not sure I would feel more like celebrating in a few more days or even next week. There is also the business of planning and having a funeral to be dealt with as well. How do I want my daughter to remember her 10th birthday?

If Mom could tell me, I'm pretty sure she would want to have a party, with cake and balloons and presents and probably pizza. She would want to come celebrate with us out at the park, and she would give Izzy a nice present too. And that is what I am going to do to, including wrapping something up from Grandma, to Izzy.

lake anna 014



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Simple Woman



I feel kind of silly still doing these since the Simple Woman site is shut down for the summer. I'm not sure why I continue to link to it except we were asked to. At this point I guess I am really keeping it up because I enjoy doing these, and it makes a nice snap shot of my life every week, and because I miss it when I don't. Maybe my kids will enjoy reading these in the future.

Outside my window...
Blue hazy skies.

I am thinking...
about the difficult choice to be made yesterday. My mother is still in quite a bit of pain. After talking to the hospice nurse who also talked with the hospice medical director, we decided to up her morphine to 10 mg and give it every two hours, instead of only 5 mg as needed. Mom is too weak to use the call button when she has pain and has to depend on the busy nurses to notice that she needs pain medicine. So some days she was getting eight doses,and some days only three. This regular increase of pain medicine should cover it. The down side is that her hearing has almost been destroyed on the previous dose, and this might completely eliminate it. And that makes me sad. My mother will no longer be able to hear us. But she won't be in any pain either. I think at this point this is the only thing we could do.

I am thankful for... all of the comments on her web site, the e-mails and comments here of support.

My great Aunt Dorothy wrote me last week for support and she said, "Hearts hurt, but they heal." Aunt Dorothy has lost her parents, 8 of siblings, friends, aunts and uncles, her husband and a daughter. She knows loss. And she's right; time does heal the hurt. And when the heart is mended there is a scar. We never forget the hurt and the heartbreak; the scar reminds us. I think a scarred heart shows that we have lived and loved much. I thought about these things after I received her letter on the Feast of the Immaculate Heart of Mary and the day after the Feast of the Sacred Heart of Jesus. It just seemed very appropriate.

From the learning rooms...I have decided to keep our homeschool, swimming lessons and Izzy's birthday on schedule and on track. I do not want my children to have terrible memories of their grandmother's death and I certainly do not want Izzy to associate her 10th birthday with her grandma's passing. So everything will be the same for as long as I can keep it that way. I did the same thing, BTW when Raphael died, and my children have wonderful memories of a party (the funeral supper) friends, fun and food. I want them to remember their grandma's funeral and life with joy as well.

From the kitchen... A roast with potatoes and carrots that I cooked yesterday in the crockpot. I just have to reheat it!

I am wearing...light capris and a maroon T-shirt. Later on today I am going to wear a bathing suit... sigh...

I am creating... I dunno. Hopefully good memories for my kids. Still on death vigil.

I am going... nuts.

I am reading... Uncle Tom's Cabin because Sam is reading it for American Lit.

I am hoping... mom passes quickly and painlessly and at the same time I am looking towards God's perfect timing. And I know when it happens I'll be able to see God's wisdom in it and will be awed by it.

I am hearing... The air conditioner which actually masks the usual buzzing in my ears.

Around the house... waiting.

A few plans for the rest of the week: My sister and I decided that no matter what, we'd like to try for a Saturday funeral when the time comes. I think those are so much nicer and not as rushed. Mom has most of her funeral planned out but she wants the music we had for Raphael's funeral so I'm going to have to listen to the tape again to refresh my memory. I got half way through it last week.

Ironically, one of the reasons my Dad had a hard time being married to my Mom is that she only gave him two daughters and he wanted sons. One of the reasons he let my EFC take the ranch away was because he did not have any sons.

At my mom's funeral her six grandsons are going to be her pall bearers - This will honor my mother, but there's a little part of me that feels some delight in the legacy that is hers - NOT HIS!

A picture I am sharing:P1050511
Proving once more getting all six kids to look good at the same time is like herding cats!




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Sunday, June 21, 2009

My Daily Domestic Diigolet 06/22/2009


Posted from Diigo. The rest of Catholic group favorite links are here.

Father's Day 2009 - or how did I luck out?

I am hard on Mr. Pete... a lot. A joke between us is that I make Kate Gosselin look like an amateur! And Mr. Pete, good naturedly takes a lot of my needling, nagging and nasty ways.

That all said, I want to take the opportunity to point out that he has grown so much from the scrawny 17 year old I fell in love with over 30 years ago, and has truly become the man that I have needed him to be, and he proves that to me all of the time.

But two times in particular stand out. The first was when he picked up our baby's casket and carried it down the aisle for his funeral mass.

The second is now. Mr. Pete has helped me with my mom many times over the years. He always made sure she could get in and out of the car and always offered her his arm. Times when I wanted Mama to physically push herself and try harder he would temper me and prod her but always with a smile and sense of humor. In these last few weeks he has been a real comfort. He has prayed the rosary at her bedside with me twice, he has helped adjust mom's pillows and he always holds the water cup so she can get a drink of water. He does this with gentle kindness. The only other man I remember acting this way towards his mother-in-law is my grandpa. In Pete I have my grandpa back. In love and generosity, humor and good nature he is everything my grandpa ever was to me! Did I know that he would when I married him 30 years ago? or has he become that over time as our marriage has continued and we have added kids and complications to our lives? I don't know. But when Grandpa gave me away in marriage Mr. Pete certainly accepted the challenge and he has done so magnificently.

Father's day was modest this year. Such is life, but here are a few scenes from Mr. Pete's special day.

My creation









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