I still hate cancer

June 18, 2015 at 11:18 pm | Posted in Grief, life after loss | 3 Comments
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I am once again silent and stuck. I am hoping that writing helps.  My amazing cousin’s mom was diagnosed with stage 4 pancreatic cancer and her heart is failing.

My amazing cousin’s mom and my mom are first cousins.  I am heartbroken for my cousins, my mom and the fact that I feel so helpless.

quote - love never fails

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i hope someone finds a cure for cancer

March 2, 2015 at 9:51 pm | Posted in Death, Grief, life after loss, Love | 9 Comments
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quotes - i hate cancer

Not too long after Sawyer died, the spouses of 2 of my cousins were diagnosed with cancer.  One lost her battle 2 years ago and the other lost her battle this past weekend. Having lived through Jake and Sawyer’s deaths, you would think handling death would somehow be easier (or at least not so damn hard).  I feel like I should have some wise words – or some magic way to protect others from living without their loved ones.  I am just not sure such magic exists.  Rationally, I know that death is part of life and that we will all die at some point but dealing with it is not easy.  Maybe it is not supposed to be easy.  If it were easy than it would mean we did not care for or love the person.

The cousin’s wife who died recently was only in her forties and they have young children.  It is not fair that their children have to grow up without their mother.  I know, no one ever promised that life would be fair – but I wish it could be (even if only for a little while).

quote - love

September

October 6, 2014 at 10:58 pm | Posted in after death?, silver lining | 7 Comments
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September is childhood cancer awareness month.  I know that it is now October but I had ordered these Spicy Monkey Spirithoods last month.  These amazing hats were inspired by Maya Thompson’s son Ronan.  He wore a spirithood after he had lost his hair during chemotherapy.  At the age of 3 Ronan lost his battle to cancer.  Before he died, Maya promised him she would keep on fighting.  And, she has been waging war on childhood cancer ever since.

The company Spirithoods is donating 100% of profit from the SpicyMonkey to the The Ronan Thompson foundation to help in their fight against childhood cancer.  The spirithoods  have places to keep hands warm (so it is a hat and mittens!). There are also super secret pockets to hide things in.

I was not the only one in our house who was so excited when the box of Spirithoods finally arrived. . .

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Hope and Hair

March 28, 2014 at 4:58 pm | Posted in Love, normal? | 11 Comments
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change_the_world_mahatma_gandhi_quotes-t2_large

As of today one of the twins and I have officially donated enough hair to Pantene Beautiful Lengths to make one wig for a cancer patient.  It takes 6 donations to make a wig (I have donated 4 times and she cut her hair today for her 2nd donation!).

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Hope that you all have a great weekend.

Staying Present

March 18, 2013 at 9:56 pm | Posted in Grief, Jake, Love, normal?, Sawyer, twins | 12 Comments
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Recently, I was reminded once again to live in the present.  I watched an interview with Valerie Harper.  She spoke so honestly about how she is trying to live in the moment and live her life to the fullest despite her terminal brain cancer diagnosis.  In her interview, Harper reminded us all that “None of us gets out alive.  Don’t go to the funeral before the day of the funeral.”

I replayed her interview in my head when I saw a daunting hill on mile 12 of the half  marathon I was running.  My first thought was to jump to the future (at least for a couple of hours to when I was showered and not running).  I tried to focus on the moment.  It was a beautiful day.  Only 1.1 miles to go.  The run was rough but I made it.

I again thought of Valerie Harper as I was helping the twins with their homework.  One of the twins had the assignment to draw a family picture in order from tallest to shortest.

Who is the tallest?  No problem.  “Daddy is the tallest!”

Who is the shortest? Tougher question.  “Mama, who was taller, Jake or Sawyer?”

The “not living in the moment me” would have taken into consideration that Jake should be 7.  He should be taller than the twins and Sawyer (who should be 3).

I pulled myself back to the present reality.  I answered,  “Jake was the shortest.”

My therapist is always reminding me not to grow Jake and Sawyer up.  The loss of Jake and Sawyer as babies is horrible enough without also grieving the loss at every age.  I am still working on this. . .

A's art 2013

Purple & Sparkly

May 12, 2012 at 10:14 am | Posted in Anniversaries, Grief, Love, silver lining | 10 Comments
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Some time after Jake died one of my favorite friends and college roommate suggested that I read the blog The Sphors Are Multiplying.  Years later and some time after Sawyer died another of my favorite friends suggested that I read another blog, Rockstar Ronan.  At that time I could barely deal with our own sad story let alone read about the deaths of Maddie Sphor and Rockstar Ronan.  I am not sure when but some time along the way I realized that I needed to see/read how other parents survive the deaths of their children.  It helps me to read how they are continuing their lives while always remembering and honoring their children.  I wish no parent had to live in a world without their child/children.  This is not the reality and unfortunately the Club continues to add members.

Today would have been Ronan’s 5th birthday.   I hate that he is not here to celebrate.

Perspective

December 4, 2011 at 11:52 pm | Posted in Grief, Love, mourning, parents | 7 Comments
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We do not see things as they are. We see them as we are.
– Talmud

As a child my parents explained that I was named in memory of my Great Aunt Edith while my brother was named in memory of my mother’s first cousin, Mitchell.  In my mind I rationalized that my great-aunt (my grandmother’s sister) was older and her death was more understandable.  Mitchell, on the other hand, died young.  I could not make sense of this as a child.  It was so terribly sad that Mitchell did not live past his teenage years.  I thought about Mitchell’s living brother and how it must feel to be the sibling left behind.

After Jake died my perspective changed.  I knew Mitchell’s death was of course sad for his brother, but I had never thought about how it impacted Mitchell’s parents, my Aunt Sophie and Uncle George.  They took care of Mitchell.  They had to watch him die from Leukemia.  The helplessness they must have felt.  The lost hopes and dreams.  They were members of the bereaved parent’s club long before I was ever born.

I was very close to my Aunt Sophie (my grandfather’s younger sister).   She and my Uncle George did not have grandchildren.  Mitchell had died young and his brother was not yet married.  I realized this at the age of 8 and decided that did not seem fair.  My grandparents had 5 grandchildren.  In my child’s mind I felt like there was something missing for my Aunt Sophie and Uncle George.

My 8-year-old solution was to volunteer to be an “adopted grandchild” to my Aunt Sophie and Uncle George.  First, I called my grandparents and asked them if it would be okay.  They said yes.  Next, I called my Aunt Sophie and Uncle George and they agreed as well.  Finally, I drafted the “adoption papers.”  It all seemed so simple at the time.  Now as a bereaved parent myself I realize that there is nothing simple about the death of your child.

We could never learn to be brave and patient if there were only joy in the world.
– Helen Keller

Hats & Hope?

September 20, 2011 at 11:38 pm | Posted in Grief | 11 Comments
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I had been hoping for an answer to why Sawyer died.  And while I was hoping, I wanted an answer to why Jake died.  There is no answer today.  There might not be an answer tomorrow.  Or ever.  I was hoping that I could fight against whatever caused the deaths of our babies.  I could raise awareness.  Help other families.  Now I do not know what I am fighting against.

Perhaps in the case of Jake it is prematurity and hydrops that I need to fight.  Maybe Sawyer will officially be another SIUDS statistic and I can try to figure out what that means.  It seems hard to fight against the unknnown.

I have readjusted what I hope for in the past.  It is once again time for me to change my hopes.  I have to stop hoping for an answer.

I will continue to be so thankful for everything I do have.

I will continue to be inspired by parents who have turned their grief into action:

The Ronan Thompson Foundation
Layla Grace Foundation 
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

I hope to have the strength one day to also turn my grief into action.  Writing and speaking about Jake and Sawyer is a step in the right direction.  I just have to figure out what is next.  Any suggestions?

Hope, Hair and Happiness

May 28, 2011 at 11:41 am | Posted in Grief, mother, silver lining | 7 Comments
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After Jake died I did not brush my hair. I did not change my clothes. I did not shower. I am not sure how many days I went on like this but it was quite a few. Finally, some friends strongly encouraged me to make a hair cut appointment. I am pretty sure someone ended up making the appointment for me. And, driving me to the salon. I remember feeling better after the appointment. Thank you to my friends who had the good sense to have a hygiene and hair intervention.

Throughout my life I try to volunteer. The week after Jake died Hurricane Katrina hit New Orleans. After Sawyer died the earthquake devastated Haiti. I wish I had the emotional and physical energy to donate my time to both of these causes. However, when I  have not had the energy or the time I have donated my hair.  Especially after talking to my mother-in-law about losing her hair I realized how important it is to have the option to wear a wig.

This week I donated my hair for the 3rd time to Pantene’s Beautiful Lengths.  Here is my crazy long hair before:

I donated 9 inches of hair:

Here is my hair after:

It takes 6 donations to make one wig.  So I have officially donated 1/2 a wig.

Telling the Twins

March 26, 2011 at 11:50 pm | Posted in Death, Grief, silver lining, twins | 8 Comments
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We did not have too much time to figure out how to tell the twins that Sawyer died.  I went with whatever came out of my mouth first.  Evan and I did have some time to figure out what we would tell the twins when Evan’s mom died.  Below are some options that we could have told the twins when talking to the twins about Jake, Sawyer and Evan’s mom:

  1. We lost Jake.  We lost Sawyer.  We lost Mom Mom.  They are not lost.  I knew where Jake and Sawyer were every minute they were alive.  I know where they are now that they have died. On a separate point,  if they were lost –  I would have found them by now (if I had not found them, some one should report me to family services and/or the police).
  2. Jake, Sawyer and Mom Mom went to sleep.  We all go to sleep.  Some of us take longer to go to sleep than others.  No need to make going to sleep scary for the twins.
  3. Jake was sick.  Sawyer was sick.  Mom Mom was sick.  Jake was premature.  We still do not know what happened to Sawyer.  Mom Mom had cancer.  We did tell the twins that Mom Mom was sick and the medicine she took no longer worked.
  4. Jake, Sawyer and Mom Mom passed away.  I used this option quite a bit when Jake first died.  However, when I spoke to the twins about death – “passed away” did not seem quite right anymore. 

We told the twins that Mom Mom died.  We told them that she had been sick for a long time.  The medicine no longer worked.  They both looked at us.  Our daughter asked, “Where is Mom Mom?”  Before either of us could answer, she said, “Oh, I know Mom Mom is with Sawyer and Jake.”   Evan and I could not have given them a more perfect answer. 

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