After – 23 Months + 17 Days

It’s coming to that time of year I hate. The holidays are over.  We are in our bleak winter inversion days.  It’s cold and dark and seems like there is no end to winter in sight. And it is almost February.  I HATE February.  My biggest hope this year is that we can make it through February without anyone dying. (Knock on wood.)  This year will mark the 2 year anniversary of my dad’s death and one year since my grandfather died. (Oh and my 45th birthday.)

I don’t want this to be a doom and gloom post.  Especially with how great a tribute my last post was to so many brave people that have fought the battle of GBM.  So I want to focus on some of the things that I have learned since my dad’s diagnosis in 2012.

* Life isn’t fair. GBM is the shittiest most horrible thing I have ever experienced.  My dad was the most kind loving person I have ever known.  He didn’t deserve to die the way he did. (No one does.)  But things happen for a reason. We can be mad at God and the world for having a loved one go through this.  But there is a reason.  You just have to find it. It took me a year and a half to figure it out.  But once I did it put a little more perspective on the whole situation for me.

* Life goes on.  No matter how dark and heavy those months were after my dad’s death it did get better.  I didn’t think it ever would. But slowly it didn’t hurt so much. I could breath again.  I didn’t cry every time I was alone in the shower or the car.  I laughed. Don’t get me wrong, I didn’t stop missing him.  I still think about him at least 10 times a day.  But the sharpness of it is gone.

* Family is everything. I take each day with them as a blessing.  I tell them I love constantly.  They probably get sick of it.  I don’t call my mom every day like I did the first year after dad died.  But I do talk to her at least 3 times a week.  It has never been like that between us until dad got sick. I love our relationship now.  She has always been a good mom.  (Although in my teenage years you would have never heard me say that.)  But now she is my friend too.

* We can “What if” and “Coulda, woulda, shoulda” our experience forever and it will never change the way it all happened.  You have to let it go.  This is one of the hardest things for me.  Did we make the right decisions? Should we have tried the Avastin? Should we have given him more pain medication?  Would it have made a difference if his idiot doctor had diagnosed him sooner?  None of that matters now.  It can’t be changed. I just have to believe that we did the right things and stop beating myself up about it.  Once I did that my grieving process seemed to move forward.

* My mom’s philosophy is right.  There is a time to grieve and then after awhile you are just feeling sorry for yourself.  Not everyone grieves the same way, or in the same time frame.  But there is a point that you just have to be done.  Whether that is 1 month or 1 year it does have to end.  This is cliche, but we all know our loved ones would never want us sitting around feeling sad and stopping our life and happiness because they died. I know my dad wouldn’t.  I know I wouldn’t.

* Therapy is wonderful.  People going through this always ask me what helped me the most after my dad died.  A grief counselor. I wish I had gotten one sooner.  Probably even before he died.  That was my first big step out of that dark hole.

The day I left to go help my mom that terrible awful week before my dad died (which is actually 2 years from today) I wrote this on my husband and my bathroom mirror.  It was the first time we had really been apart for 5 years.  I was leaving into the unknown.  I was scared. It’s still on our mirror 2 years later. It reminds me how weak I thought I was but how strong I really am.

heart

The biggest thing I learned from all of this is no matter how many times you think you can’t go another day, hour, minute, second,  you really can.

Beautiful Faces

I have started this post and deleted it a million times this week.  I want it to reflect the great amount of respect and love I have for the people it is about. I have never met any of them in person.  But they have been a big part of my healing process over the past 22 months.

Since my dad’s diagnosis of Glioblastoma in March of 2012 I have scoured the Internet for as much information I could.  I wanted to educate and prepare myself for what was going to happen to my dad, and also get an idea of what my family was going to experience.  As most of you know the internet is a scary place to start looking up GBM.  There isn’t much, if any, positive hopeful information out there.  Even the ER doctor that initially diagnosed my dad warned me not to go home and google it.  (Which if you have read any of my blog know that I am google obsessed so it was the first thing I did.) One positive thing I did find on the Internet was a group on Facebook.  Simply titled Glioblastoma Support Group. I joined it as soon as I found it.  It was the best thing I ever did.   It was comforting to find so many people feeling the same things I was.  After dad died I moved over to the second group associated with it called The Next Step (Coping after a GBM Loss).  There are currently over 1,000 members, all people that are dealing with the grief of losing a loved one to GBM.

Glioblastoma Multiforme is actually considered a rare cancer.  An average of only 22,000 people per year in the United States are diagnosed with it compared to 295,000 people per year in the United States diagnosed with breast cancer. (These are numbers I have found on the Internet so I am sure they are not 100% accurate, but it does give you the general idea of the difference.) There are millions of sites and foundations dedicated to breast cancer.  The whole month of October is pink for breast cancer support from yogurt lids to NFL football players wearing pink socks.  It makes me mad.  There IS a month dedicated to brain cancer.  I had to google it to find out which one it is (May) because there is no big hype about brain cancer. No announcement on the news.  No gray ribbons tied to trees. Nothing said about brain cancer, ever really.  Until now. Until Brittany Maynard.

Brittany Maynard has been the face of Glioblastoma the past few weeks.  (I am not going to write my feelings about her situation in this post, as I already have here.)  It has caused a media uproar that I finally have had to just ignore because it makes me very frustrated.  This is why. A couple of weeks ago I was at the dentist and in the magazine display was the People magazine with Brittany on the cover.  Of course I had to read it.  Afterwards I sat it down and looked at my husband in tears.  “Why are you crying?” he asked.  I couldn’t stop my angry words “My dad should be on the cover of this magazine, not her.  All the others that have fought this beast to the end should be on the cover, not her.” He took my hand and let me cry for a minute and then said “Well at least she is making more people aware of this type of cancer.  That is a good thing.”  Yeah yeah, he was being logical and level headed about it. I was being the hormonal crazy woman in the dentist office with the front office staff staring at me.

As soon as I got home I got on Facebook and wrote a post on our group wall about how frustrated I was about the cover of the magazine.  I inadvertently started a shit storm.  All of us have been through the end stages of GBM.  We all know how bad it is.  We all agree we know why Brittany chose to do what she did.  But we don’t all agree with whether it was “right” or not.  I respect everyone’s opinion and beliefs.  I felt horrible that I had stirred up so many emotions in our group meant to support each other.  I finally pulled the post down after about 160 comments.

There will never be a cover of a magazine showing all of our loved ones that fought so bravely to the end.  No people writing long newspaper articles or news broadcasts about how inspiring they are for what they did.

But there will be this blog post.  (Even if it is just my little blog that has probably 20 readers.)

My friends on the Facebook group I mentioned above willingly shared these pictures with me. These are pictures of their loved ones.  Some of the other faces of GBM.

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Ray, 47,diagnosed on 4/22/2011 and died 4/2/2012.

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Robert E. Bailey. Survival time after diagnosis 27 months.

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Jack, 63, died 9-22-2010, 7 months after diagnosis.

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Dave, 58,First seizure Aug 16, 2012, died Aug 28, 2014.

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Oz, 60, passed away 12/23/2013 three months after diagnosis.

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Robert, 73, died October 11,2013, 5 months after diagnosis.

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Terry, 52, died 11/9/2011 – 31 days after diagnosis.

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Bonnie, diagnosed February 2012. Died 2 years after diagnosis, February 2014.

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Igor, 62, diagnosed Sept. 9 2013, died June 1 2014 after 8.5 m fight.

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Merv, day after craniotomy, Sao Paulo Brazil, June 2013

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Dale, 60, diagnosed October 2011. Died January 2012.

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Steve, 63,  Diagnosed June, 2009. Fought the huge fight for 3 yrs. 8 months until Feb. 2013.

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John, 58, died 4/17/2013, 9.5 months after diagnosis.

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Maynard, 79, diagnosed 3/2014  passed on 4-10-14.

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David, 68, diagnosed 4/1/2011, died 3/22/2012.

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Jimmy, 58, died July 22,2014. Eleven months after diagnosis.

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Maureen, 76, passed away 9/10/2014, four months after diagnosis.

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Megan, was diagnosed on December 1, 2004 at the age of 16.  passed on August 10, 2012 at the age of 23.

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Nancy ,50, diagnosed 10-18-2005 died 2-14-2006.

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Stephen,29, Diagnosed 3/24/14 passed to glory 9/4/2014.

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Craig, 43, Diagnosed 2/14/10 passed away on 11/21/2013, 45 months after diagnosis.

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Kathy, diagnosed July 2012 fought for 20 months and passed on March 20, 2014.

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Brent, 38,  died October 24th 2011, 17 months after diagnosis.

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Jay, 56, diagnosed Dec 11th, 2013. Died Aug 11, 2014. 8 months to the day from DX.

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Nicky, 32, Passed March 13, 2014 after battling brain cancer for 9 yrs.

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Passed away 11/4/12 4months after diagnosis

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Mike,48, diagnosed October 2012 passed June 21st, 2014 after a 20 month battle.

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Carol,72, died April 7, 2013, 8 months after diagnosis.

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Jacqueline, 75, Passed away 5/19/2013, 7 months after diagnosis.

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Evelyn. Passed 9-4-14, 7-1/2 months after diagnosis.

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Bill, 52, diagnosed 4/22/2011 and died 6/5/2012.

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Sarah, 77,  died 11-15-10 after fighting 21 months.

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John, 51, passed away 22nd May 2013, 3 months after diagnosis.

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Thomas, 66, died March 10, 2012 3 months after diagnosis.

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Jeanette, 76, died August 7, 2012, 4 months after diagnosis.

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Nick, 27, diagnosed 4/13/11,  lost his battle 9/25/2012. 17.5 months from diagnosis.

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John, 59,  diagnosed  4/6/10, died on 3/31/13, almost 3 years after diagnosis.

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Kal, 55, diagnosed September 25, 2010, passed away June 8, 2014.

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Mark,58,diagnosed 8/7/13 fought for 11.5 months. Left us 7/27/14.

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Jeff diagnosed April 22, 2013 surgery April 27, passed away 11 months after surgery March 27,2014

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Gregory Kilbourne, diagnosed 2/24/2014, gained his wings 11/3/2014

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Penny, diagnosed 8/2/14 and passed on 10/24/14.

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Cindy, (in the hat), diagnosed June 2, 2009 fought until she earned her wings Sept 16, 2012. 3 years, 3 months, 14 days.

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Gary, diagnosed 1/23/12 passed away 9/18/12.

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Rosemary, 64, diagnosed 4-25-14 passed 10-27-14 six months after diagnosis.

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Judy, 69, diagnosed 10/17/12, passed 11/3/12 (just days after complications from GBM resection surgery).

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Robert,  11/21/1962-09/24/2014.

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Colin, 51, diagnosed  9/19/2013 passed 11/13/2013.

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Juliette, diagnosed 9/15/2014, gained her wings on 9/17/2014.

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Scott, 43,  diagnosed 7/7/2011, joined the Angels in heaven 08/02/2012.

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Ron, 10/30/48 -12/18/05.

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Bill, diagnosed July 2011, died Nov 2012.

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Dennis still fighting after 29 months.

Mom

My mom doesn’t read my blog.  I think she tried to read it when I first started writing it but it was all too real at the time.  Then I think she just forgot about it.  Now that she is away from home serving her LDS mission I  send her a letter every week.  I can still talk to her on the phone when I want to and email her, but there is something about getting real mail in your mailbox that is much more personal.  So my goal is to send her a letter once a week while she is on her mission.

Well when you still talk to someone 2-3 times a week there isn’t much to say in a letter so I decided I would start sending her a copy of one of my blog posts each week, starting with the most recent and going back.  So this week I sent her my post about distance since at the time it was my most recent post. I was nervous about her reading it.  I didn’t want to make her sad.  I didn’t want her to feel like I was sharing too much personal information with the whole world.  Her reply was perfect.  The quote she added was just what I needed to hear.   I wanted to share her response. (With her permission.)

Heather,
I am amazed at your writing skill. You are able to feel and express your emotions so much better than I can.

I’m not sure what I can say to help you feel better. Just that I love you.

Yes, the grief and pain are there, but for me, I have to look forward to good things coming, rather than dwell in the past. The past hurts too much and it cannot be changed. If I had my way, it would have never happened. But it did. We can’t change that. What we have to do now is live in the present with hope for the future.

Today I was reading the Ensign magazine and I came across this. It helped me feel better. I hope it can help you too.

Russel M Nelson, as quoted in the current Ensign:

“Life does not begin with birth, nor does it end with death. Prior to our birth, we dwelled as spirit children with our Father in Heaven. There we eagerly anticipated the possibility of coming to earth and obtaining a physical body. Knowingly we wanted the risks of mortality, which would allow the exercise of agency and accountability. ‘This life [was to become] a probationary state; a time to prepare to meet God.’ (Alma 12:24.) But we regarded the returning home as the best part of that long-awaited trip, just as we do now. Before embarking on any journey, we like to have some assurance of a round-trip ticket. Returning from earth to life in our heavenly home requires passage through – and not around – the doors of death. We were born to die, and we die to live. (See 2 Cor. 6:9.)   As seedlings of God, we barely blossom on earth; we fully flower in heaven.”

I’m sure Dad wouldn’t want you to be so sad. I don’t either. Life is for living, trying to do the best we can in every situation that comes our way. I know you are trying to do that. I just don’t want you to get bogged down in past sadness.

I’m afraid that I cannot come up with the right words to ease your soul. But do remember that I love you, and so does Dad, and Grandpa, and Grandma, and Heavenly Father, and Jesus, and everybody you knew before you were born, whoever they are, and so many people that are here on earth now: your friends, siblings, and relatives. Feel the peace and love coming coming from all of us to you.

Love, Mom

I don’t think it matters how old we get.  Mom’s always know the right things to say.

After – 20 months – Service

This is a heart wrenching situation and I don’t know how I feel about it.  You can read the full story here.  Short and condensed version of this is she has been diagnosed with GBM and has moved to Oregon to be able to legally end her life on her terms, when she wants to.  It is called the Death with Dignity Act.  It is only legal in 4 other states besides Oregon (Washington, Montana, Vermont and New Mexico.)  I’ve never heard of it before.

I’ve seen the end stages of GBM.  I watched as it robbed my father of himself.  I watched him die for 9 days.  If it were me I think I would want to go on my own terms. I would want to spare my family the heartache of seeing me decline, having to take care of me for weeks and weeks before I finally died.   But I strongly believe everything happens the way and when it does for a reason.  If I hadn’t had those 9 days with my mom and sister I don’t think we would have grown so close and formed such a strong bond, one we didn’t have before.  I wouldn’t have had the time to take care of my dad and give to him after so many years of him taking care of me.  It would have deprived so many people the chance to do service for our family.

Service.  Kind of a stupid concept when I first heard this idea from my best friend Donna.  It was during one of those horrible 9 days that I asked her why we had to wait so long.  Why didn’t God just take him now?  What was the point?  She said that this whole experience my dad was going through wasn’t just about him.  It was about my family.  It was about all the friends and family that were helping one way or another.  I was mad.  Why did my dad’s disease and dying have to be used as something to make other people feel better about themselves?  Why did God choose for MY dad to get brain cancer? What did I do so wrong in my life that I needed to learn a stupid lesson like service THIS way?

Then I thought about it some more.  My father was the most kind giving person I have ever known in my life.  I’m not just saying that because he was my father.  He seriously had no ill feelings towards anyone.  Never said anything negative about a person.  He would do anything for anyone pretty much no questions asked.  My dad always wanted to help people feel better about themselves.  He would have wanted to give them opportunities to serve the Lord.  I’m pretty sure he wouldn’t have chosen getting brain cancer and dying as his preferred way to do it,  but it is what it is (as he would say).

I found this quote here.

As you devote yourself to serving others, you will draw closer to Heavenly Father. Your heart will be filled with love. You will learn that service and sacrifice are ways to overcome selfishness. You will enjoy happiness that comes only from giving service to God and others. Your capacities will increase, and you will be an instrument in God’s hands to bless the lives of His children.

So in my father’s case I know he wouldn’t have chosen this option to end his fight with GBM.   I think that Brittany Maynard is a strong inspiring woman.  Her going public with this makes me admire her even more.  I have read the comments on different articles about her that have been so cruel and uncalled for.  Her intentions are pure.  She loves her family.  She wants to spare them from the way this all ends.  She wants control.  If you have read my blog even once you know how I feel about control.  So I wish her and her family peace and comfort in the days to come.

After – 19 Months DISTANCE

dis·tance

a) separation in time

b) an extent of advance from a beginning

c) personal and especially emotional separation

 

It’s been 19 months since dad died.  That is a lot of time.  582 days or 13,968 hours, or 838,080 minutes give or take.  That is a lot of distance between now and then.  But some days it still feels like seconds.

I’ve written about how my mom is serving an LDS mission.  It is tradition that the Sunday before a missionary leaves they give a talk in church.  So my family, and my sister and brother’s families, drove down and went to church with her that day to hear her speak.  It was nice to be all together.  The grand kids had fun playing together and it ended up that a lot of extended family and friends came and supported my mom as well.

This is where my point of “distance” comes in.  In my mind I think I have been doing very well with everything the last year.  I still get sad.  I miss him.  I still cry now and then.  But I have been able to control it.  There seemed to be enough distance between the actual event of his death and now that I was able to focus on his life and not that horrible 9 days before he died/the funeral/the 3 month black hole afterward.

Until I sat down on the same bench, in the same spot, at the same church as my dad’s funeral.  I sat there and listened to the prelude music for about 1 minute and looked at my husband and said there is absolutely no way I can sit here.  I was trying not to cry, which I’m not very good at, and got up and quickly moved to the far back of the church. I did pretty good after that, only sending my husband out once to get me tissue. Then my mom got up and talked.

She talked about hope and faith.  She is a good speaker, always has been.  Honestly I don’t remember a lot of what she said because in my mind I was thinking “Please don’t let me totally lose it when/if she talks about dad.”

I am not a beautiful crier.  I don’t look Demi Moore in Ghost, or Meg Ryan in You’ve Got Mail.  I am a horrible ugly crier that snorts and sobs.  (I have wedding video proof.) In the last minutes of my mom’s talk she talked about how she had faith and hope that someday she would see my dad again and live for eternity with him. There was another 5 minutes after that that I didn’t hear because I had to get up AGAIN and leave the chapel and run RUN into the hallway.  Where I proceeded to hyperventilate because on top of all this emotion I was sick with a cold so I couldn’t breath out of my nose.  My kind and loving sister followed me out and talked me through it, helped me start breathing again normally, and gave me yards and yards of toilet paper.  I felt like an idiot.

I don’t know if there will ever be enough distance between the death of my dad and me being ok with it.  I think with time we just get better dealing with the grief publicly.  It gets easier (most of the time) to not cry when you see a cute little old man that reminds you of your dad at the grocery store, or feel empty inside when you can’t call him and tell him that BYU still sucks even though they did win their first football game, or just want to hug him. You just learn to control it. But it still hurts.

After – 17 months

I don’t have a lot to say these days.  Life keeps moving forward.  I miss my dad and think about him every day.  I still have moments that make me cry. Especially when I see cute old men that remind me of my dad at the grocery store.  I want to go up to them and ask them if I can hug them, but that is probably inappropriate and they would think I was crazy.

My mom got her mission call for her church. She will be serving in Salt Lake as a church and family history missionary.  So if you are ever at Temple Square in Salt Lake in the next year and you see a cute older lady wearing a tag that says “Sister Swenson” on it, go give her a big hug.  She leaves September 4th.  We are happy she will be so close and we will still get to see her often.  She is excited and says she feels like she is going to college all over again.  I hope she meets lots of new people and starts a new chapter in her life.

My friend went to see Theresa Caputo (Long Island Medium) a few weeks ago.  Some of you will probably roll your eyes, but I totally love her.  Her show has given me so much comfort over the past few years.  One thing my friend told me she said was that there are no coincidences.  If you feel like something is a sign from a loved one then it is.  Take that for whatever you think it is worth.  But for me it is worth a lot.

We have a robin, or a bunch of robins (how do I really tell them apart), that like to come in our backyard and sit in our pear tree. I’ve told the story of the pear tree in this post.  It’s not a very big tree, especially since dad cut the whole top of it off.  We have 12 other huge tall maples in our yard, but they like the pear tree.  So I always feel like it is my dad saying “I’m ok.  I love you.  I miss you too.”  I told my husband that is what I thought and he just kinda gave me weird smile and said “Ok honey, if that makes you feel better.”  It does make me feel better.

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After – 16 Months – Father’s Day

Yesterday’s Facebook post:

I never have, and never will, love a man more than my dad. He was the sweetest, most understanding, nonjudgmental person I have ever known, and he gave the best hugs. I miss him everyday.

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After- 15 Months – Memorial Day

It’s actually hard to believe that it has been almost 16 months since dad died.  Those first few months I never thought I would feel happy again or enjoy life.  That was a dark and bleak time.  I miss my dad everyday. But I don’t ache anymore.  I didn’t think I would ever be able to say that.

We went down to my mom’s for Memorial Day and went to my dad’s grave and my grandfather’s who just recently passed away.  Many of my cousins were there.  It seems we only get together for funerals and cemeteries this past year or so.  It was good to see everyone.  We had a nice lunch together afterwards.  It was strange not having my dad and especially my grandfather there.  Gatherings seem to be getting smaller, even if it was only by 2 people.

My mom is doing well.  She has put in a request with her church to go on a service mission for year.  So she could be leaving Utah and going who knows where during that time.  She is excited.  It is something that her and my dad wanted to do together.  It’s not exactly how she imagined it, but she is looking forward to something new and a change.  She will meet new people and probably other widows and maybe even a few widowers.  We will miss her while she is gone, but are so happy for her.

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