Sibling Rivalry?

July 16, 2012 at 5:46 pm | Posted in Grief, life lessons, Love, normal? | 14 Comments
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On any given day our twins will be arguing over who is “bigger”.  She is 3-4 inches taller.   He is 1 minute older.  I have explained these facts over and over again.  So technically they are both right.  However, in their 4-year-old (almost 5) minds this is not a satisfactory solution.  I am not sure why but I continue to feel the need to unsuccessfully rationalize with them.  Sibling rivalry at its finest.

The other day I was driving.  The twins were in their seats in the back.   It had not been a particularly good day.  There had been arguing between the 2 of them.  There had been time outs (or as it is known in our house, “the zone”). All seemed to have calmed down as I drove along until the question was asked.  I have always known this question would be asked one day but somehow I was not prepared.

“Do you love Jake and Sawyer more?”

Silence.

“Mama, who do you love the most?”

More silence.

I realized that if I did not answer quickly this line of questioning would continue possibly forever.  In case you did not know, 4 almost 5-year-olds can be very persistent.

“I love you all the same.  I just miss Jake and Sawyer more.  I can not hug them the way I hug you both.”

Simon’s Fund & Sawyer

June 28, 2012 at 7:02 pm | Posted in life after loss, Love, SIDS, silver lining | 5 Comments
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Simon’s Fund

Simon’s Fund provides heart screenings, funds research as well educates people about sudden cardiac arrest.  Simon Sudman “weighed six pounds, 15 ounces at birth with an APGAR score of eight and nine. He was at 50% for weight and 25% for height and every few hours, he’d finish a bottle (except for a four-hour stretch overnight). ”  Everything seemed very normal.  However, Long QT (a hereditary heart condition) ran in their family.  Simon died when he was just a few months old.

The Sudman’s created Simon’s Fund in memory of their baby boy.  The mission of Simon’s Fund is “To save a child’s life . . . and then another, by raising awareness of conditions that lead to sudden cardiac arrest and death.”  According to their website they have screened 3, 948 hearts and saved 38 lives.  After his death, Simon’s mother, discovered that she had Long QT.   She was treated and is fine now.

According to a study by doctors David Tester and Michael Ackerman, 15%  of all sudden infant deaths are due to arrhythmias.

Sawyer 

I thought for about a year that Sawyer died from Long QT.   Sawyer’s pathologist was able to put Sawyer’s cord blood in Dr. Ackerman’s study at the Mayo clinic.  Dr. Ackerman was able to determine that Sawyer did not have Long QT.  Sawyer will remain in the study.  Maybe one day they will determine his cause of death.  Maybe they will never know what caused Sawyer’s heart to stop.

If Sawyer had died 5 or 10 years ago his death certificate would have listed his cause of death as SIDS.  Now, doctors like Dr. Ackerman have helped to discover that many SIDS cases are actually due to undetected heart conditions.  I cannot express in words how much I wish that Sawyer had a heart screening (along with a pulse ox screening).  I am so grateful that families like the Sudmans are bringing awareness to how heart screenings at birth can change the whole world.

Molly Bears and Mixed Blessings

June 16, 2012 at 7:48 pm | Posted in Grief, life after loss, normal?, silver lining, Time, twins | 6 Comments
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Mixed Blessings:

The twins have finished another year of preschool.  This is what I want.  I want them to be healthy.  They should grow up, unlike their brothers who are frozen in time.  So why do I have such mixed emotions as yet another year flies by?   There is so much to look forward to as the twins get older.   Is it the fact that there is nothing to look forward to for Jake and Sawyer?  Or, is it because the twins might be leaving preschool behind and starting kindergarten?

Which brings me to reason #2 I am a mixed-up mom at the moment.  The twins’ birthday is 8 days before school here starts.  They will be among the youngest in their class.  Many of the neighborhood children who I thought would be starting kindergarten with them are going to another year of preschool (or pre kindergarten).    Evan and I have a few options for the twins.  Whatever we decide will work for our family.   In the meantime, I will keep repeating the words of my therapist or Buddha (or maybe both. . .) “everything is exactly the way it should be right now.”

Molly Bears:

Molly Christine died at 34 weeks, on May 30th 2010.  A high school friend gave her parents a weighted teddy bear.  Molly’s mom added rice to the bear so that it was the exact weight of Molly at her time of death/birth.   While nothing will replace Molly it helped her mother to hold the teddy bear.  Her mother began to make Molly Bears for other bereaved parents.  They have received over a thousand orders and so far have created hundreds of bears. Molly Bears are now with families in all 50 states and 13 countries.

Evan and I ordered bears for Jake and Sawyer.  We are looking forward to holding them in our arms.

R Baby Project, Recitals & Reasons

May 30, 2012 at 11:36 pm | Posted in Grief, life after loss, Love, normal? | 8 Comments
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Reasons:

They Say There is a Reason
They say there is a reason, They say that time will heal,
But neither time nor reason, Will change the way I feel,
For no one knows the heartache, That lies behind our smiles,
No one knows how many times, We have broken down and cried,
We want to tell you something, So there won’t be any doubt,
You’re so wonderful to think of, But so hard to be without.
~Author Unknown

Recitals:

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R Baby Project:

One of my sister-in-laws recently emailed me a link about a family who had a baby girl named Rebecca.  Rebecca was born 4 weeks premature and spent 5 days in the NICU.  The doctors determined that Rebecca was healthy and she went home.  The next day Rebecca was severely congested and had difficulty breathing.  Her parents took her to the pediatrician and the ER.  Doctors misdiagnosed her symptoms as a common cold and she was repeatedly sent home.  Tragically, Rebecca died at 8 days old.  Rebecca contracted an enteroviral infection which can be life threatening in babies.

Rebecca’s parents created the R Baby Foundation.  This charity is dedicated to helping newborn babies, primarily those less than a month old suffering from viral infections and other infectious diseases, receive the highest quality of care and service through supporting education, research, training and life-saving equipment.

Along with recitals and reasons I have decided that I am going to add a feature to this blog which focuses on families who are making the world a better place by honoring the memory and lives of their children.  If you know of or come across any organizations that would be worth mentioning please let me know.

Planning & Hoping

May 22, 2012 at 10:40 pm | Posted in Grief, life lessons | 20 Comments
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Many doctors told me that I could not get pregnant again after Jake had died.  We tried clomid, letrozole, IUIs and eventually IVFs.  We went to several infertility specialists in town and then flew to New York to get yet another opinion.  The doctor we ultimately had the twins with was so sure that I would not get pregnant that Evan and I nicknamed him Dr. Doom and Gloom.

We shocked ourselves and Dr. Doom when I had the twins.  We went back to Dr. Doom when we were trying again.  He again told us that we had little to no chance.  Again, we surprised everyone when we had Sawyer.

Evan and I did not think it was possible to get pregnant on our own until a few months ago.   I was late and thought to myself there is not a chance in the world I am pregnant without the assistance of lots of drugs and doctors.  However, there it was . . . the 2 pink lines on the pregnancy test.

I showed Evan the pink lines.  We both just stared at each other.  We were happy.  Very, very happy.  In all honesty, I did not believe that it could really be true.  After Jake and then Sawyer died there is always a part of me which expects the worst but I try to hope for the best.  There are so many stories of people who get pregnant after years of infertility.  I thought maybe just maybe this could be happening.

Until I started to bleed.  Evan and I went to the OB.  He confirmed that yes I was pregnant but I was most likely having a miscarriage.  He asked if this baby was planned.  I wanted to shout that we had not planned for this baby but then again we had not planned on burying 2 of our sons.  Instead, Evan came up with the perfect answer, “We were not planning but hoping.”

Frog & Toad

May 20, 2012 at 11:50 pm | Posted in Grief, twins | 7 Comments
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“What is the matter, Toad? You are looking sad.”
“Yes,” said Toad. “This is my sad time of day.”
Frog and Toad are Friends by Arnold Lobel

 After Sawyer died I cried a lot in front of the twins.   They were 2 1/2 year olds at the time and did not ask too many questions about my tears.   Now, over 2 years later, the twins ask questions about everything and I rarely cry in front of them.  The sadness is still there but I have better control over it.   Every once in a while it gets the best of me and the tears leak out against my will.  Today was one of those days.   I know it is not just today – it has been creeping up on me over the last few months.

I know that there will be other days when the tears take over.  It is ok to be sad but it is also ok to be happy.  If not for me than for them.

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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.

I Heart the March of Dimes

April 18, 2012 at 6:18 pm | Posted in Grief, life lessons, Love, parents | 2 Comments
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As I mentioned in my last post, our family supports the March of Dimes.  We have walked every year since Jake died.  Our team was named Jake’s Journey.  After Sawyer died we renamed it to Jake’s Journey & Sawyer’s Strides.  This year we are excited because the March of Dimes contacted us to let us know our donations are being matched by the hospital where all 4 of our children were born. 

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 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.

Sawyer’s Aunt

April 10, 2012 at 10:26 pm | Posted in Death, Grief | 6 Comments
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On my last post, The Good Cook commented that “It truly does take a village to mourn one lost love.”. We are not alone in our grief. Other family members mourn. Friends mourn. Sawyer and Jake are loved and remembered by many.

Not long after he died, one of Sawyer’s amazing aunts wrote the post below:

This is incredibly sad for me to write.  I hope writing about it helps.

My brother’s baby stopped breathing and died in his sleep, almost two weeks ago.

We were all in terrible shock. Sawyer was a sweet, beautiful little thing, only a month-and-a-half old. We’d just Skyped with my brother and sister-in-law and watched him sleeping contently in his mother’s arms. I’d had the chance to hold him myself over Thanksgiving. Impossible.

And not fair. Especially not for my brother and his wife, who’d already lost their first baby due to medical complications. They then went on to have twins–a boy and a girl–now two-and-a-half–both adorable. But now this.  I can’t imagine having to go through the death of a child once, let alone twice.

I flew as quickly as I could to their place, hoping to support them in any way possible. When I arrived, family was already there helping. Others would arrive soon. There was also a great circle of friends who stopped by to lend a hand and offer condolences.

A neighbor from down the street, came to drop off food and check in on my sister-in-law and brother. She told me she had lost her own daughter to SIDS. She showed me a pendant she wears around her neck always reminding her of her daughter. I was told shocking stories about others who too, had lost children.

I asked her how she was able to handle the grief. She explained she already had other children at the time, and she had to go on living for them. I thought of my brother’s twins and was hopeful that my brother and sister-in-law would be able to do the same.

My niece had been asking where her baby brother had gone. My nephew would run up to his mother, stroke her arm, hug her and say, “I’m so proud of you, Mommy.” She would thank him and try to hold back the tears. Both the twins knew things were out of sorts, and that their little brother wouldn’t be living with them anymore, but at this age, they didn’t fully understand what had happened. A small blessing for now.

We all asked WHY? Why him? Why them? Why now? I thought of what amazing parents they both are. In addition to making sure their twins are well-fed, happy and educated (as educated as 2-year-olds can be) they keep their kids so well protected that I’ve had to ask them to help me get into the bathroom, or turn on the stove because of all the child-proofing they’ve done. It’s clear there’s no lack of love or protection for the children in their house. But no matter how many times we asked why, there were no clear answers, and there likely wouldn’t be for quite a while.

When we finally attended the funeral, on a chilly Atlanta morning, the rabbi conducting the service brought up a question I’m fairly certain none of us had asked.

“As adults we ask, ‘Why?’…What we need to ask is, ‘When?’ “

Ask when? When what?

“Ask WHEN Sawyer is…WHEN is Sawyer,” he said.

I didn’t understand what he meant, but he went on to explain.

Sawyer is when…we’re spending time with family. He’s when…we’re out for a walk on the beach. He’s when…we’re at a ballgame. A bit of him is with us when…we are. Simple.

I understood what he meant.  It brought a small measure of peace.

The sentiment will stay with me always. So will a bit of Sawyer. And I’ll never forget…when.

The Ocean

April 4, 2012 at 9:28 pm | Posted in Death, Grief | 5 Comments
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I met a bereaved father the other day. There is an immediate level of familiarity when you meet another member of the club. Bereaved parents all have different stories but we have all walked in the darkest valley of death. We have all cruelly defied the circle of life and outlived our children.

It has been 7 years since his 29-year-old son died. The father went on to tell me an analogy of grieving for your child. I am not sure I can explain it as eloquently as he did but I will try.

Grief is like an ocean. At times it is calm but there are always ripples. Other times the water is rough. The ocean is unpredictable. Out of no where and with little or no warning a tsunami will drown you. Over time the waters will calm down again but they will never be still.

On a completely different but still ocean related note, click this link to hear the twins tell their versions of their great grandfather’s ocean joke.

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