Confessions

June 10, 2011 at 1:23 pm | Posted in Grief, mother, mourning, silver lining, traditions, twins | 5 Comments
Tags: , , , , ,

When I was young I loved to travel.  I would travel whenever I could for work or fun.  After Jake died my desire to travel was gone.  I wanted to stay home so I could visit the cemetery. 

I have met a few other people while visiting the cemetery.  One grandfather visits his grandson’s grave every day.  He also takes care of the family plot.  Year round he is out there cleaning the headstone, cutting the grass and maintaining the plot.  Although I no longer go every day, I frequently want to go to the cemetery. 

One day I spoke to the grandfather about visiting the cemetery.  He said that it helps him to take care of the plot and visit every day.  I 100% understand and relate to being drawn to the cemetery.  However,  I wanted to know how he felt if he ever missed a day.  He is from the area and his whole family lives within a few minutes of the cemetery.  He has not missed a day since his grandson died over 3 years ago.  I think it is great that he has found a way to comfort himself.

I on the other hand, have family who lives out-of-state.  I no longer travel often for work but I do take trips to visit family and friends.  Every time I am away I stress about not being able to visit Jake and Sawyer’s grave (as I have written about before they share one plot).

When we were snowed in this past winter I did have fun playing with the twins.

    

This slideshow requires JavaScript.

However, I worried about not being able to check on my other 2 children.  I know that they are not really there but I like to check on the little piece of land in the cemetery.  It gives me a brief sense of being able to take care of Jake and Sawyer. 

Dream

I am drawn quietly to his grave to check on him,

Just as I’d have been drawn quietly to his crib.

I trim the grass around his marker,

And dream of trimming bangs from his forehead.

I place flowers in his vase,

And dream of placing kisses on his check.

I hold his memory dear to my heart,

And dream of holding him in my arms.

                                                                Author unknown

I know that frequent visits to the cemetery might sound morbid to some people.  Just like with birthdays I do not think there are any rules in this area.  We all find comfort in different ways.  The path in the journey of grief varies – even if you are grieving the same person (or people).  Visit or do not visit the cemetery.  Do what ever helps you at the time.

Not an Unhappy Birthday

June 6, 2011 at 11:14 pm | Posted in Death, Grief, mother, silver lining, traditions | 4 Comments
Tags: , , , , ,

“Don’t cry because it is over.  Smile because it happened.”  Dr. Seuss

Today would have been my mother-in-law’s birthday.

Last year at this time the whole family was celebrating her birthday at the beach.  This year is a very different story.  I do not believe that there are any rules in this area.  So, I have made up my own.  On Jake’s and Sawyer’s birthdays I light a candle.   I want to celebrate their birth and their life.

A few other ideas about celebrating a deceased loved one’s birthday are the following:

  • Write the person a letter
  • Visit the cemetery
  • Release balloons
  • Plant a tree in their honor
  • Make a donation in their name
  • Tell stories/look at pictures
  • Whatever brings you any comfort (no matter how slight it might be)

The world is a better place because Jake, Sawyer and my mother-in-law were in it.  Happy Birthday Shelley.

Happily Ever After and Hope

June 2, 2011 at 11:11 pm | Posted in Death, Grief, silver lining, twins | 5 Comments
Tags: , , ,

Thank you so much for all the extremely kind and wise comments on my last post.  I did not mean to sound more out of sorts than usual.  Nothing significant has changed.  Jake has still been dead for 5 years and 9 months.  Sawyer has still been dead for 18 months.  I have many good things in my life – for which I am very grateful and happy.  I just always believed my life would have a “happily ever after” ending which did not include burying 2 children.

Now I need to adjust my expectations.  I have done this before and I am sure that I will again.  For now I am going to try to be like Jimmy Buffett and “. . . live happily ever after, every now and then.”

This slideshow requires JavaScript.

Hand-me-downs and Hope

May 30, 2011 at 10:22 pm | Posted in Grief, mourning, silver lining, twins | 7 Comments
Tags: , , , , ,

We are extremely fortunate that the twins are the recipients of hand-me-downs from our niece, nephew and a few close friends.  As the twins outgrow the clothes I put them into buckets marked with the sizes.  I then bring the buckets to our basement.  For a few years the clothes sat down in our basement with the hopes that we would have a younger sibling for the twins.

After we had Sawyer and he was safely home from the hospital I went down to the basement.  I brought up all the boy clothes from 0 to 12 months.  I washed them and put them away in his room.  In the almost 6 weeks that he was alive Sawyer wore some of the very kind gifts given to him when he was born and hand-me-downs.

Within the first few days after he died I went into his room and started to put away the clothes.  A few family members were with me.  One suggested that we send all the clothes to my brother and sister-in-law who were expecting a boy in a few months.  It sounded like a good idea to me.  However, Evan who usually stays out of the crazy clothes storing business strongly disagreed.  He was not ready for the clothes to leave our house.  The clothes went back to the basement.

Awhile later I spoke to Evan and we agreed to send some of the clothes to our new nephew.  And now every few months I go down to the basement and pack up clothes to send.   Evan helps me at times and just like so many things in our lives it is bittersweet.  I am sad when I look at the clothes Sawyer will never wear.  I am happy that they are being worn by our nephew.   And, I hope that the clothes will continue to be passed along – I just wish they stayed at our house a little longer.

Note:  I know that I keep reusing the word Hope in the titles of my posts.  I think if I keep writing it maybe I will have more of it.  I cannot figure out why but I am struggling these days.  It is not Jake or Sawyer’s birthdays or anniversaries of their deaths.  In fact, I was just telling myself that this time of year is so much easier than the time of year (from August on) filled with birthdays, anniversaries and holidays. 

It could be that the twins just finished another year of preschool.  They are growing up so quickly and their brothers are not.  Or, maybe when I looked at our wedding pictures on our anniversary I saw the me before burying 2 children.  The me who did not have trouble sleeping, the me who was not drawn to the plot in the cemetery, the me who was so hopeful for the family that Evan and I were beginning.  Whatever, the reason I will continue to try to hope and if all else fails I will just act hopeful.

Hope, Hair and Happiness

May 28, 2011 at 11:41 am | Posted in Grief, mother, silver lining | 7 Comments
Tags: , , , , ,

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.

A Birthday, A Wedding and 2 Funerals

May 24, 2011 at 9:52 am | Posted in Grief, silver lining | 9 Comments
Tags: , , ,

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
Tags: , , , , , ,

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

 

Small Steps

May 5, 2011 at 10:35 pm | Posted in Grief, silver lining | 4 Comments
Tags: , , , ,

As I wrote about in this post I have great admiration for bereaved parents who continue the legacy of their children.   We have not yet started non-profit or a run.  However, we did participate in the March of Dimes walk last weekend.  We have walked almost every year since Jake died.  Our team had been called Jake’s Journey.  This year our team’s new name is Jake’s Journey and Sawyer’s Strides.  

This slideshow requires JavaScript.

Thank you to all those who supported our team this year and in past years.  We appreciate your kindness and generosity.  I do believe that the March of Dimes is making a difference and saving babies. 

The walk we did started at the Mattie J.T. Stepanek park.  At the age of three, Mattie started to write poetry to cope with the death of his older brother.  Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy.  Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.

Mattie’s mother, Jeni, spoke before the walk.  I was able to meet her afterwards.  Her strength and courage is remarkable.  She continues to spread Mattie’s message of peace and hope.  I am going to do my best to share and honor Jake’s and Sawyer’s lives. 

Facing the Future

Every journey begins

With but a small step

And every day is a chance

For a new small step

In the right direction

Just follow your Heartsong

by Mattie J.T. Stepanek

Why I Write

April 20, 2011 at 11:46 pm | Posted in Death, Grief, silver lining | 7 Comments
Tags: , , , , , ,

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

Telling the Twins part 2

April 4, 2011 at 1:14 am | Posted in Grief, silver lining | 8 Comments
Tags: , ,

Evan and I have tried our best to explain to the twins that Jake, Sawyer and Mom Mom are dead.  It is hard to tell what actually is going on in their 3 1/2 year-old minds.  However, every once in a while they give us some insight into what they are comprehending.  The other week they came home from school and announced that one of their teachers had died. 

“Are you sure?” I asked.

They both answered, “Yes, she was not at school today or last day (yesterday).  She died.” 

I quickly tried to reassure them, “She is probably on vacation or home sick.”  They both look as if a light bulb just went off in their little minds. 

They both happily clarify, “Yes, that is it.  She got sick and then she died.”

You will all be happy to know that their preschool teacher is alive and well.  She went to a wedding and is back at school.  Evan and I clearly have some more explaining about death to do. . .

In my next attempt I am going to tell them the following story:

Waterbugs and Dragonflies : Explaining Death to Young Children” by Doris Stickney
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.”Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went….Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return…

“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second… “Where do you suppose she went?” wondered a third. No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea”. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.”

“We promise”, they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broken through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…

“I can’t return!” he said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.”

And the dragonfly winged off happily into its wonderful new world of sun and air……. 

 
 
 

 

Waterbug 1

Waterbug 2

 

 

« Previous Page — Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.