Beaches & Bad Questions

July 24, 2011 at 10:36 pm | Posted in Grief, mourning, parents, twins | 3 Comments
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I have always found the beach to be very peaceful.  However, it is not always super relaxing when you go with children.

I had to leave the last few days to go to work.  I did not plan the week this way but had to change things around because of the previous week.

I am a consultant and often go to offices where I have never met anyone before I arrive.  I taught a class where we were waiting for a few minutes for everyone to show up.  While waiting the people already there were talking about their dogs.  They asked me if I have any dogs.  Easy question.  I have 2 dogs.  I even showed pictures of the dogs with the twins.  All is well.

The last person to leave the class turns to me and says, “I do not mean to get personal but are you going to have more children?”  I thought I had completely avoided the “how many children do you have” question with the easy dog conversation.  No such luck.

After thinking for a few moments, I tell her that we already had more children.  Jake was very premature.  Sawyer was full term, went to sleep and did not wake up.  I quickly change the subject.

Later the same day, I am working with someone who is receiving texts from his daughter.  He asks if I have children.  I answer that we have twins at home.  I think this answer sounds pretty good.  And, then there it is again. . .”Do you think you will have more children?”

Sometimes I think that I should consider going into some kind of work where talking is not required.  .  .

Happily Ever After & Hope (part 2)

July 16, 2011 at 7:24 pm | Posted in Grief, mourning, silver lining, twins | 6 Comments
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It was so nice to write such a happy post last week.  Life has ups and downs and I know that without the bad times it is hard to appreciate the good times.  I recently read about the concept of “nexting” – always thinking about is going to happen next.   So I am trying very hard to appreciate the good moments right now:

After Sawyer died someone said to me that Evan and I will never live happily ever after.  It was not said with with cruel intentions.  It was an honest statement that that after burying a child (or children) life is bittersweet.

We may not have lived happily ever after even if Jake and Sawyer had lived.  And there is no alternate universe in which I can find out.  Life, marriage and kids are hard at times even if you are not a bereaved parent.  I am hoping that good times continue and when they do not maybe the bad times will not be quite as bad.  In the meantime, I will go watch the twins dance the robot:

And, I am going to confess to “nexting” because the twins and I are going to the beach soon.  They are so excited to go see their Aunt, Uncle and cousin!

Super Star

July 10, 2011 at 12:38 am | Posted in hospital, silver lining | 12 Comments
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Our little super star was such a good sport.  He happily played while waiting for his surgery.

He was not able to eat or drink that morning.  I dreaded him asking for something and not being able to give it to him.  Luckily, he was so busy playing with his cars that he only asked once.  I responded by handing him more cars.

Evan and I could hear him chatting as the nurses and surgeon wheeled him away down the hall.  We waited in his room.

He was brought back to us from the recovery room. He was in and out of sleep.

When he did wake up the first thing he asked for was his car.  The second thing he asked for was more cars.  However, he did not turn down the apple juice or popsicle the nurse offered him.

And before we knew it our super star, his blue tongue, Lightening McQueen and all the other cars were happily on our way home.

Thank you all so much for sending positive thoughts, good wishes and love!

There is no place like home

June 28, 2011 at 11:18 pm | Posted in Grief | 3 Comments
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“It always amazes me to think that every house on every street is full of so many stories;
so many triumphs and tragedies, and all we see are yards and driveways.” Glenn Close

Evan and I bought our first house the year we got married.  It was a 3 bedroom house.  Our bedroom, a guest bedroom and what we hoped would be a baby’s room.  Jake, our first-born, never came home.  However, during the time I was pregnant and while Jake was alive, we referred to the 3rd bedroom as Jake’s room.

After Jake died, I was not able to go into the room.  I shut the door.  I desperately wanted to move or renovate the house so that Jake’s room no longer existed.  I cannot explain my anger toward the house but it was very real.  Evan and I started to look for houses with a real estate agent.

Luckily, someone wisely advised us not to make any major life changes for at least 6 months to a year after Jake’s death.  We stopped the house search for the time being.

Eighteen months later when we found out that we were expecting the twins my need to move resurfaced.  I did not want the twins to sleep in Jake’s room.  Once again, we started the house search.  We had a contract on one house and it fell through.  I resigned myself to staying in our house.

Miraculously, we found another house when I was 8 months pregnant.  Everything fell into place.  We moved up the street from our old house.  Whatever bad house karma was there I was convinced we were leaving it behind us.  The twins came home from the hospital to their own room.  Jake’s room was still down the street.

Fast forward to the November, 2009 – Sawyer came home.  The night of December 25 he went to sleep in his room.  At 2:46 am on December 26th the paramedics were performing CPR on Sawyer on our bedroom floor.  We are still not sure but it is very possible that Sawyer died in our house that night.

So after leaving one house where Jake had a room which he never slept in, we now live in another house where Sawyer came home, lived for nearly 6 weeks and died.  Funny (or maybe not so funny) how life works.  I am not angry at the house this time.  It does not matter where I live – my memories of Jake and Sawyer will always move with me.

Perfect Parenting?

June 26, 2011 at 10:50 pm | Posted in Grief, mourning, parents, twins | 8 Comments
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Did you ever see the movie Sliding Doors?  Gwyneth Paltrow, pre country music singing career, plays a woman whose entire life changes based on catching a train.  Her life is portrayed in the movie both as if she caught the train and as if she did not. 

I wish I could know what kind of parent I would be if Jake and Sawyer had not died.  I wish I could see my life both ways, in parallel.  And okay, I wish I could just pick the life that did not include either of them dying.

However, here in reality I know I do not get those wishes and I can not watch both options in parallel (nor will I become a country music singer).  So I must try to be the best parent I can be and accept that I will not be perfect.

Alice Wisler wrote Parenting Through a Glass Partition — After the Death of a Child.   Her son Daniel, died from cancer treatments in 1997 at the age of four. She wrote: 

“At the fast food restaurant, my children laugh in the play area as I sit drinking coffee behind the glass partition that separates the play area from the dining section. While I have hugged them so tightly their tonsils could pop out, I am still, much of the time, finding myself watching them from a distance. They are mine but so was Daniel, and in the course of a moment I know they could be gone, as he is.” 

After Jake died I could not imagine being a parent to a child who came home with us.  After the twins were born and did come home, it dawned on me that I was so focused on making sure that they were not premature that I had not considered actually being a parent.  Parts of me want (and may always want) to wrap them up in a bubble wrap and protect them from the world.  The wiser, perhaps more jaded part of me knows that no matter what I do I will not be able to protect them from every thing.

Sawyer was full term but did spend some time in the NICU.   I did keep myself at a distance.  I could not visit the NICU for long.  Once Sawyer was released from the NICU I felt incredibly guilty that I did not visit him more.  I also felt incredibly lucky that he came home with us. 

Being a parent (bereaved or not) is bittersweet, frustrating, exhausting and amazing all at the same time.  Would I be more patient, appreciative and understanding if Jake and Sawyer were here?  Would I be less bitter and more sweet?  Has grief made me a more aware and loving parent?  I will never know.  Right now all I know is that I will keep trying.

My Real World

June 22, 2011 at 11:02 pm | Posted in Grief, mourning, silver lining, twins | 3 Comments
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“Out of clutter find simplicity; From discord find harmony;
In the middle of difficulty lies opportunity.”
 – Albert Einstein

Some mornings I wake up and have to remind myself of my reality.  Is it true I have out lived 2 of our children?  Was Jake really born 14 weeks early?  Was Sawyer just a brief wonderful figment of my imagination?  After the morning fog clears I know with unnerving certainty that they are both dead and I am alive. 

People tell me (and I remind myself) how lucky I am to have the twins.  Which of your children would you live without?  Why can I not wake up in the morning with all 4 of my children? 

I get up and face the day.  I try my best to focus on my simplicity, my harmony and my opportunity:

Father’s Day

June 19, 2011 at 10:46 pm | Posted in father, Grief | 4 Comments
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A grieving father is often refered to as a “forgotten parent.”  As I quoted Harriet Sarnoff Schiff, in this post nowhere in the history “of sex discrimination is there a more glaring injustice than that thrust upon a bereaved father.”  It is hard to find resources for a bereaved father.  However, I did come across the Grieving Dad’s Project, which was created specifically to assist father’s with their journey through grief.

This week I helped the twins make Father’s Day cards for Evan.  They made him art projects too.  I can not help Jake and Sawyer wish their dad a happy father’s day so here is my best attempt:

A Father’s Day Wish From Heaven

Adapted from Jody Seilheimer poem
A Mother’s Day Wish From Heaven

Dear Mr. Hallmark,
We are writing to you from heaven,
and though it must appear
A rather strange idea,
We see everything from here. We just popped in to visit,
your stores to find a card
A card of love for our father,
as this day for him is hard.
There must be some mistake we thought,
We saw every card you could imagine
Except we could not find a card,
from a child who lives in heaven.

 He is still a father too,
no matter where we reside
We had to leave, he understands,
but oh the tears he’s cried.
We thought that if we wrote you,
that you would come to know
That though we live in heaven now,
We still love our father so.

 So you see Mr. Hallmark,
though we no longer live on earth
We must find a way to remind him
of his wondrous worth.
He needs to be honored,
and remembered too
Just as the children of earth will do.

Thank you Mr. Hallmark,
We know you’ll do your best
We have done all we can do;
to you I’ll leave the rest.

Find a way to tell him,
how much he means to us.

A Birthday, A Wedding and 2 Funerals

May 24, 2011 at 9:52 am | Posted in Grief, silver lining | 9 Comments
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Today is my brother’s birthday.  We are 2 years and 2 months apart.  I have been told over the years that he was very excited when my parents brought me home for about 2 weeks – at which point he asked if they could return me.   He spoke at Jake’s funeral when Evan and I could not.   He has called me almost every day since Sawyer died.  He has talked me through times that I know I could not have gotten through without him.

I look at myself in this picture of us when we were 2 and 4.  If I could, would I warn myself about the path that my life would take?  Would I tell myself to make different decisions? I know that life has not turned out the way that I had imagined it would when I was a child.

My brother was gracious enough to share his birthday with Evan and I.  The place that we wanted to get married only had 1 date before one of Evan’s brothers left for the Peace Corps in Armenia (but that is a different story).

Eight years ago today we were married. Is it really possible that in 8 years we have had 4 children?  We have had 2 funerals.  One for our oldest son and one for our youngest.

If I could go back to talk to myself on my wedding day would I warn myself about the heart-break in my future?  Would I tell myself that I would bury not 1 but 2 of our children?  I honestly do not know the answer to these questions.

One of my favorite English teachers made us memorize the Robert Frost’s poem The Road Not Taken:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.

I am fortunate enough that the roads I have taken (while they may have not been the easiest) I have had Evan and my brother by my side.

Hope & Heart Ache

May 16, 2011 at 11:36 pm | Posted in CHD, Grief, parents, silver lining, transient tachypnea | 5 Comments
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We still do not know the cause of Sawyer’s death.  His heart just stopped.  He is currently in a study at the Mayo Clinic for Long QT.   His autopsy did not determine that it was SIDS.  No matter what the results of the study conclude I know that Sawyer will still be dead.  However, I hope that his death will help to provide the research which could prevent other children from dying. 

According to the Children’s Heart Foundation, “Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one-third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday.” 

CHD’s can be detected by Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing.  Newborns do not routinely have any of these exams.  Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram. 

Sawyer had a Level II ultrasound and a fetal echocardiogram.  All appeared to be perfectly normal.  He was also in the NICU briefly because of transient tachypnea (extra fluid in the baby’s lungs which would normally be squeezed out when the baby goes through the birth canal – c-section babies do not have the benefit of the fluid being squeezed out. )

In the NICU Sawyer’s heart and pulse oxygen levels were monitored.  Again, all appeared normal.  He did not have an EKG or an Echocardiogram.  If he had, would anything have been detected?  We will never know.

What I do know is that I wish there was more screening for newborns.  I hope that organizations like Simon’s Fund succeed in their mission “To save a child’s life . . . . and then another, by raising awareness about heart conditions that lead to sudden cardiac arrest and death.”

I hope that Cora’s Story results in a pulse oximetry test on every baby.  I want to help Aaron’s mom, Cora’s mom, Logan’s mom and all the other parents of CHD children to spread awareness and hope.  Sawyer’s death may not have been caused by a CHD but it did make me realize how many children do die because of heart defects.  Please ask your child or grandchild’s pediatrician if they provide heart screening. 

“In the sharing of our losses, our hearts grow stronger.”  Kirsti A. Dyer, MD, MS

 

Why I Write

April 20, 2011 at 11:46 pm | Posted in Death, Grief, silver lining | 7 Comments
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I wrote on the About  page that I began this blog to hopefully assist others on their journeys and to continue the purpose of Jake and Sawyer’s lives.  Now that I have been writing for some time my purpose has become a little more clear.

Not many people met Sawyer and even fewer met Jake.  I feel like in writing about our two baby boys  more people are able to “meet” them.  I never want them to be forgotten.  I do not have to speak about them all the time.  I do not feel like I am keeping a wound open by writing about them.  Rather, I want to share their stories.  I want the twins to know their brothers.  I do not want to forget the details.

I am still not so clear on some of the other purposes I have for writing.  Maybe one day I will start a non-profit.  I have great admiration for bereaved parents who are very active in the March of Dimes and for these parents:

Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

Maybe one of the twins will grow up to be a real doctor.  Maybe one will find a cure for the cause of Jake and/or Sawyer’s death. 

Or maybe someone will read this blog and find something that will make their life some how easier.   If nothing else I am going to keep writing to help myself.  Sawyer and Jake are dead.  I am alive and I must keep on living.

In three words I can sum up everything I’ve learned about life.  It goes on.  ~Robert Frost

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