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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Dear Jake

August 14, 2014 at 9:14 pm | Posted in Grief | 10 Comments
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Dear Jake,

today you would have been 9.  do you know how much we miss you?  i do not have the right words at the moment to tell you.  in fact my words and thoughts have been stuck for awhile. i guess you know this already.

i just want to tell you happy birthday baby boy.  love and miss you so very much. xoxo

So, this happened in the last week. . .

August 4, 2014 at 10:40 pm | Posted in life after loss, Love | 6 Comments
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these 2 turned 7 and they started 2nd grade!

twins are 7!!

I am beyond grateful that I am their mama.

 

i cannot believe i am writing about this again. . .

June 30, 2014 at 10:50 pm | Posted in after death?, Cemetery, Grief, Jake, life after loss, Sawyer | 6 Comments
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Back in November the very kind cemetery people replaced Jake and Sawyer’s headstones. Jake’s headstone has now been replaced 4 times and Sawyer’s has been replaced 3 times.  All seemed fine with the new ones. . .until a few weeks ago.

It has been raining a lot here in Atlanta so I thought maybe there were just water stains on the nameplates.  I finally asked Evan what he thought about the stains.  He said he would call the cemetery people.  They went to check and the coating/finish is peeling off the nameplates.  I am not sure how to feel about this – it sort of seems like a cruel joke.  Should I cry?  Should I laugh?  Could the nameplates really need to be replaced again?  Or, maybe Jake and Sawyer are just playing tricks or trying to give us something to worry about.

The very kind people at the cemetery are looking into it and will let us know.  I will keep reminding myself that nothing is hurting Jake or Sawyer.  There is no urgency to get this fixed.  It might not be according to my plan but the world will keep spinning.

“I believe that if life gives you lemons, you should make lemonade… And try to find somebody whose life has given them vodka, and have a party.” Ron White

 


The End of the School Year & Everything in Between

May 20, 2014 at 10:00 pm | Posted in Grief, Jake, life lessons, normal?, Sawyer, twins | 4 Comments
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This Friday is the last day of school for the twins!  It does not seem that long ago that they started 1st grade.  I try to enjoy the moments with the twins.  Moments I know that I will never have with Jake or Sawyer.  The Mother’s Day teas, the musical performances, the recitals, field days and the end of school year parties.  However, I find myself in a panic this time of year.  There is so much happening – all at the exact same time.

“Did I forget to dress them in the right color for their musical?”

“Did we remember to bring in the teacher appreciation card?”

“Did we make the teacher appreciation card?”

“How did we forget her glasses again this morning?”

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I feel guilty about not enjoying ever single moment (all the ones that I will miss with Jake and Sawyer).  I want the twins to be healthy, happy and grow up.

This week I looked around at some of the other parents – I saw the dazed looks on their faces.  They are all in this end of the school year craziness too.  I am not sure they are enjoying all of this end of the school year madness either.  I want to appreciate all the moments I have with the twins.   I think I will  have to expand my definition of appreciation to include the happy, the sad, the chaotic and everything in between.

quote - keep-calm-school-is-almost-over

 

 

 

Return to Zero – Breaking the Silence

May 16, 2014 at 7:26 pm | Posted in Grief | 5 Comments
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Return to Zero premiers May 17th (tomorrow) on Lifetime at 8 pm/7pm central.   This is the first movie made about the stillbirth of a child.   The mission of the film is to break the silence surrounding stillbirth, miscarriage and neonatal death.

“The impact that one stillbirth has on the mother, the father, their family, and friends is devastating — a shock-wave of pain, guilt and then, too often, silence. The majority of those affected, especially the mothers, suffer in this silence often believing that their grief and trauma is theirs to bear alone.

While planning to entertain and enlighten all audiences with a dramatic tale of the strength and resilience of the human spirit, RETURN TO ZERO intends to break through the silence and become a beacon of cinematic light to the millions in search of answers, understanding and healing.”

Unlike the new show Resurrection, I know that I will be watching Return to Zero.

Hoping for Healthier Babies

April 28, 2014 at 8:28 pm | Posted in Grief, Jake, life lessons, Sawyer | 5 Comments
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Thank you to all of our friends and family for supporting Jake’s Journey and Sawyer’s Strides in the 2014 March of Dimes “March for Babies!”   We appreciate you all so much.  Special thanks to our super talented sister-in-law for designing a new logo for the t-shirts.

Jake and Sawyer‘s deaths were due to circumstances beyond our control. I cannot describe in words how horribly helpless it feels as a parent to watch your child die and not be able to do a thing to prevent it.   The March of Dimes gives us a chance to do something to hopefully prevent another child from dying.  Maybe, just maybe, another family will be spared from having to try to figure out how to live in this world without their child/children.

Evan was the chairperson of the North Atlanta walk this year.   As the twins explained “their daddy got to the park early to put out the chairs!”  Although he did not actually put out any chairs, we are so proud of him for all he did and continues to do in the fight for healthier babies.

Thank you again for supporting our team this year and in past years.   We are grateful for your amazing kindness and generosity – we could not make it through this journey alone.

Pathology is No Place for Politics

March 24, 2014 at 8:18 pm | Posted in Grief, venting | 6 Comments
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I read an article recently about a young mother losing a child that presented a whole new take on a sad situation.

The death of any child is heart breaking, and a horrible situation no parent should have to suffer. In this case, a poor 16-year-old in Mississippi lost her baby at 36 weeks to what was most likely the frighteningly all too common situation of where the umbilical cord gets tangled around the baby and causes death. The teenager had to deliver her stillborn child and figure out how to deal with such a sad and horrid situation that would leave any mom filled with guilt (even though there was nothing she could have done to prevent it). It must have been even harder to be only 16 and having to deal with one of life’s greatest tragedies.

But then, for this girl, things got exponentially worse. Apparently in Mississippi at the time there was a pathologist who has quite a reputation – for being politically motivated and having an agenda. When he found evidence that the girl in question had used drugs during her pregnancy, the pathologist concluded that the drugs had led to the baby’s death. And he, along with local law enforcement (which also has an agenda to reduce women’s reproductive rights) decided to charge this 16-year-old girl with murdering her child. They alleged that her use of drugs was a “depraved heart” killing of her child.

They did all this despite the fact that no medical facts support that conclusion. They ignored the science that points to the cord as the cause of death and ignored the medical facts that show that while drug use is certainly a terrible idea for a pregnant woman, it does not cause death of the child (and not in this case).

For six years now this now 24-year-old from an impoverished background with drug issues has not only had to deal with the death of her child, she has had to deal with being accused of killing her child, of having a “depraved heart,” and with the very real fear of being tried and found guilty of murder by a Mississippi jury.

I just cannot imagine.

When Sawyer died, since his heart stopped at home, investigators questioned us in the ER.  Then they followed Evan and I home from the hospital to view the scene and talk more about what happened. They quickly concluded that what ever exactly happened to Sawyer, it was biological, not something that anyone did to him and not something that could have been prevented by some action we could have taken (or not taken) at home.

We knew that, logically, but it was also helpful to hear that from those who looked into it. Further, the pediatric pathologist who examined Sawyer to try to determine the cause of death also ruled out any external causes, and ultimately focused on his heart stopping, likely due to a genetic, undiagnosed arrhythmia. (It’s still a working theory, but it’s the best any doctor can say at this point.)  The pathologist was compassionate and helpful in trying to get us not to blame ourselves for Sawyer’s death. She explained things so we could understand them, and she spent extra time meeting with us, emailing with us, and even went above and beyond to help us get Sawyer’s DNA in a study at the Mayo Clinic looking for certain arrhythmias that she and some other scientists believe may account for many of the SIDS and SUIDS deaths that still occur far too often. She also happens to be quoted in the article — taking a sane, rational, scientific-supported view of the case, unlike the Mississippi pathologist out to “get” this girl.

I cannot fathom how this girl must feel having had not help and comfort from investigators and a pathologist, but blame, condemnation and being charged with “depraved heart murder.” It must be like a second sledgehammer to her own heart. First, her baby dies. That is heart-crushing on its own. Then, she is accused of killing her child and must fight for her own freedom and future. That guilt and feat must be not just heart-crushing but soul-smashing. For a sixteen-year-old girl from poverty probably few of us can truly comprehend.

I am not excusing her drug use. As a mom, protecting our children is of the utmost importance. I’d never do something that might harm my children. She made that mistake. But I cannot judge her for that, because I do not know her or her true circumstances, or why she did that.

What I do know is that science says she did not kill her child. What I also CAN understand is the depths of despair and guilt a mom faces when her child dies. No woman should go thru that. No girl should face that, let along without care and support of those around her. To blame her for her child’s death here, to prosecute her for murder, to claim to the world she has a “depraved heart,” must be causing her unimaginable pain.

I can barely make it though losing Jake and Sawyer even with being told by everyone that I did everything right, but that some things cannot be fixed or prevented. Without that love, caring and support, and in the face of accusations of killing my own child (no matter how wrong-headed, illogical, unsupported by science and politically driven they might clearly be) I don’t know how I would be able to go on.

 

Helping with Homework

March 6, 2014 at 10:14 pm | Posted in Grief, Jake, Love, Sawyer | 12 Comments
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Today’s 1st grade homework assignment for one of the twins was about cultural diversity.  The questions asked about backgrounds, customs and families.  I was helping her with the assignment.  We discussed the questions and her answers.  “Where are you from?”  Where were you born?”  She quickly answered and wrote down, “Atlanta, Georgia.”  All was going smoothly until, we got to the question asking, “How many brothers and sisters do you have?”

I have written before about being asked “How many children do you have?” “How many brothers and sisters do you have?” is the bereaved sibling’s version of this question.  They are both such common and polite questions but the answers for some of us are so complicated.  When people ask me how many children I have these days I usually say something like “I have 2 children at home.”  I then try to change the subject.  Or, the other day I caught myself saying “excuse me for a moment” and  I left the conversation all together.  I always remember Jake and Sawyer but I do not always talk about them.   But maybe it does not have to be so difficult.

At first she did not immediately answer the question “How many brothers and sisters do you have?” Instead, she looked at me thoughtfully and asked, “Mama, how many brothers do I have?” Before I could say anything she said “I know!!” and she began to write . . .

I used to have three brothers but now I only have one.  one brother

I used to have three brothers but now I only have one. one brother

When she finished writing she went over to her one brother and gave him a hug.  And, then I hugged them both.

I’m Scared (repost from my amazing cousin’s blog)

February 4, 2014 at 6:42 pm | Posted in Grief, life lessons, Love, normal? | 5 Comments
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I would like to introduce you all to my amazing younger cousin. She is my hero.

plugging along

This is my life. It’s all that I know. Friends have said they think I’m so brave for just living my life, when I’m just living my life the best I can… just as they are.

The truth is I’m scared.

When I initially decided to start a blog, I intended to make it humorous by discussing the more amusing aspects of my life than the dark ones, but sometimes all I see is darkness. I can’t take a single step without being scared that I will tumble and smash my teeth into the floor. I sometimes feel like I’m spiraling downhill with no end in sight.

I have FSH Muscular Dystrophy, and I’m just scared.

“Courage is being scared to death, but saddling up anyway.”

 John Wayne

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