Jake’s Journey & Sawyer’s Strides

April 22, 2014 at 7:22 pm | Posted in after death?, Grief, Jake, life lessons, Love, Sawyer | 3 Comments
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No matter how far the distance you have traveled nor the failures that have gathered, hope would still meet you anywhere.

~ Dodinsky ~

Our family has walked in the March of Dimes’ “March for Babiesevery year since Jake died.  Originally our team was named Jake’s Journey.  After Sawyer died we renamed it to Jake’s Journey & Sawyer’s Strides.  We will be walking again this weekend.

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.  I believe that the March of Dimes is making a difference and saving babies.

I cannot do anything to bring back Jake or Sawyer but maybe, just maybe, I can help spare other parents the heartbreak of having to live in this world without their child/children.

Thank you to all those who supported our team this year and in past years.  Thank you also to the hospital for matching funds.  We appreciate all of your kindness and generosity.   If you would like to support Jake’s Journey & Sawyer’s Strides please click this link.

Trees

April 14, 2014 at 11:18 pm | Posted in Jake, life, Love, Sawyer | 4 Comments
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Last month we went to the playground where trees are planted for Jake and Sawyer.  I do not think Sawyer’s tree is doing so well at the moment. . .

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The plan is that we will try to straighten it out and hope that it grows better.  It is best to plant trees in the colder weather so we will reevaluate in the fall.  It makes me feel better just to have a plan.

Many people had trees planted in Israel for Jake and Sawyer when they died.  Planting trees in Israel is a tradition which celebrates the life of loved ones.  Evan and I often joke that there is a Jake and Sawyer forest at this point.  I have never been to Israel and if I do go I would like to see the Jake and Sawyer forest :-).

I did write thank you notes to all the people who had trees planted for Jake.  However, I never did write thank you notes for the trees, donations and acts of kindness that were done in memory of Sawyer.  I do want to thank all of those who had trees planted for Sawyer and one day I hope to write those notes.  Until then, please know how very thankful I am.

I want to wish a happy and healthy Passover to all those who celebrate!

 

Hoping for Milk

April 8, 2014 at 9:48 am | Posted in after death?, Grief, life, Love | 6 Comments
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Some days it is harder than others to find hope.

After Jake was born at 26 weeks with hydrops, I hoped he would be among the 30% of babies who survive these enormous obstacles.  There was no miracle.

The horrible night we brought Sawyer to the emergency room, I hoped for the miracle that it would all be an awful mistake.  There was no miracle.

I hoped for a miracle that would cure the cancer that Evan’s mom had or at least give her back the life she had. There was no miracle.

On Friday a close family friend lost his valiant battle with brain cancer.  In case I have not mentioned it before I hate cancer!!  His family along with all of us who loved him hoped he would win this battle.  He did not.

When there is no more hope for our loved ones to remain with us we often shift to hoping to prevent that anyone else should have to go through this horrible journey.  So, his family has formed a team, Everybody Needs Milk, in the Race for Hope DC.  I hope that one day soon a cure for cancer is found.

This is a telephone pole at the end of my neighborhood running route.   It is a reminder to me that there is hope everywhere (just sometimes we have to look for it harder than others).

Hope

Many ways to mourn

April 2, 2014 at 10:08 pm | Posted in Grief, life, Love, mourning | 5 Comments
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The other day a friend sent me an article about a mother who built a sandbox on her infant sons’ grave.  The sandbox is to give her living 3-year-old son a way to “play” with his baby brother.  It is a very creative idea which gives her son a way to mourn as well as bond with the brother he will never know.

My friend wrote in the email that the article made her smile.  It makes me smile too.

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.

Pathology is No Place for Politics

March 24, 2014 at 8:18 pm | Posted in Grief, venting | 3 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.

 

No worries (I wish. . .)

March 16, 2014 at 9:28 pm | Posted in Grief, Sawyer, twins, why I write | 9 Comments
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If your problem has a solution then…why worry about it? If your problem doesn’t have solution then…why worry about it?   - Chinese Proverb

In theory I think this makes sense and I agree with the proverb, but I have a problem:  I think that worrying is in my DNA.

Everyone at our house is feeling fine now but last week that was not the case.   Evan and one of the twins were sick.  It is part of life – everyone gets sick.  But, I do not like it one bit!  I try very hard to rely on the rational part of my brain but the irrational part of me always seems to take over.  I am transported back to the days and nights before Sawyer died.  Was there something going on?  Was he sick in some way?  What did I miss?  How could he be seemingly perfect one moment and then dead the next?

I know that the twins are not Sawyer.  They are bigger.  They are stronger.  They can tell me when something is wrong (and usually can specifically detail what is wrong too!).  However, I cannot help but second guess myself.  I cannot help but worry about what we could have done differently, what might have prevented Sawyer from dying that night, how we might have taken a different action or course and he would still be here with us today.  I also know that even if we did miraculously figure out the cause of Sawyer’s death it would not change the fact that he is dead.  Resurrection is not our reality.  Of course, I cannot change that now, and of all things, I logically know I should not worry about things I cannot change.  And yet, those are the things that seem to draw out my worries the most.

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.

How to Remember Your Child

February 28, 2014 at 1:00 pm | Posted in Grief, Jake, life, Sawyer | 3 Comments
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I will always remember Jake and Sawyer.  How they looked.  How they smelled.  Their sounds, and the touch of their skin.

Over the years since Jake and then Sawyer have died, we’ve always looked for ways to remember them by trying to build more memories of them.  Maybe it is because we only had weeks with each of them.  Maybe it is because it is a way to keep them a more active parts of our lives.  Maybe it is because that is what we do when we loved ones are no longer present in our lives.

We’ve done things that have made sense to us to remember Jake and Sawyer.  I’ve also come across suggestions (some of which we have taken, some of which we haven’t done) from other resources about ways parents can remember their children who have died.  Some of those ideas include:

  • Create a baby album with all your keepsakes in it.  (This might take different shapes or forms depending on what keepsakes you have.)
  • Make a collage frame, remembrance or shadow box with pictures, mementos and other things that remind you of your child.
  • Plant flowers or a tree in your child’s memory, perhaps in a place you like to visit or that you associate with your child.
  • Participate in walks or runs in your community.
  • Buy memorial bricks (local parks often offer this as a fundraiser).
  • Name a star after your baby.
  • Write.
  • Light candles.
  • Volunteer or work on a special project in your child’s memory.
  • Donate to a child who would be the same age as your child would be.

Do you have any other ideas to share?

Second Star

February 18, 2014 at 11:14 pm | Posted in Grief, Jake, life lessons, Love, Sawyer, Time | 5 Comments
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When Jake died the hospital gave us a packet of information to take home.  I remember trying to read it through my tears and being unable to make out most of the words.  When I got to the page on “Ways to Honor Your Child” I got a tissue, wiped my eyes and read.  One of the ways was to name a star.  Before I knew it I was on the phone buying a star for Jake:

Jake's Star

Jake’s Star

The star date is his birthday and it is in the constellation of Leo (Jake’s zodiac sign).  We have the star certificate with all of Jake’s other belongings.  I think before now the only other person I told that I bought a star was Evan.  Buying the star made me feel a bit better for the moment.  It was something I could do for Jake.  Funny how time changes some things. . .

After Sawyer died I did not buy a star.  The thought of buying another star did not make me feel better.  Recently, I came across Jake’s star certificate and decided that I did want a star for Sawyer after all.

I tried to order it online and then finally called.  I wanted Sawyer’s star date to be his birthday, just like Jake’s.  The star registry only goes back 2 years – which meant 2012, 2013 or this year.  There is no 2009 option.  I chose this year  – for Sawyer’s 5th birthday.

Sibling rivalry is an issue at times in our house with the twins.  I will never know if Sawyer would be unhappy that Jake had a star and he did not but the second star bought to avoid any worries.  It made me feel a bit better and it was something I could do for Sawyer.

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