Time Can be Tricky (part 3)

July 30, 2011 at 11:58 pm | Posted in Death, Grief, mourning, silver lining | 4 Comments
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I have written about time in this post and this one, and I am once again questioning how it can possibly be August in 2 days.  August is filled with bittersweet birthdays and anniversaries.  It comes every year.  I know it is right after July but somehow this year it snuck up on me.  I feel like summer just began and snap it is almost August. 

It will be ok.  We will get through this time of year just like we have in the past.  There are just ups and downs.  I will try to focus on the good days but I know there will be hard days ahead. 

“Do not pity the dead, Harry. Pity the living. . . Albus Dumbledore, Harry Potter

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!

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:

Confessions

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

    

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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
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“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
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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.”

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Hand-me-downs and Hope

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

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

 

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