Thanks to the twins

July 28, 2011 at 10:42 pm | Posted in Death, Grief, mourning, parents, SIDS, twins | 14 Comments
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Thanks to the twins I have to get up every morning.  After Jake died, there were days I did not see the point in getting out of bed. 

Four months after Jake’s death, Evan and I spoke to a neighbor who had 2 older boys and a 3 month old baby girl who died.  As Evan and I spoke to the parents about the death of their daughter, the 2 little boys were running around us.

As we walked away from their house I thought about how I could cry all day and go on long walks.  I thought how much harder it must be for them to have to get up every day and take care of 2 other children while grieving for another.  And, if I am honest with myself I envied that they had other children at home as we walked back to our empty house.

The birth of the twins did not make me forget Jake but my life became much busier.  My grief for Jake became a part of me and helped me to (hopefully) be a better mother to the twins.

The morning after Sawyer died our house was not empty.  The twins were home waiting for us to take care of them.  I cannot compare Sawyer’s death and Jake’s death at all.  However, after Sawyer died I had to get myself together and take care of the twins.  I cried as I changed their diapers, fed them and put them to bed but I did it.

The twins have no idea how grateful I am they were born and are alive.  I tell them all the time how much I love them and how lucky I am to be their mom but I do not have the words to express how important they are to me.  I hope they do not feel the weight of my world on their little legs.

Happy Birthday!!

 

Anytime, Anywhere

July 26, 2011 at 11:10 pm | Posted in Death, Grief, mourning, parents | 6 Comments
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One of the main reasons I started to write this blog was my hope to help others with their difficult journeys.  I have already written that I do not have magic words of wisdom to heal the pain of bereaved parents.  I came across a letter written by a pediatric nurse which was published by Ann Landers.  I found it helpful so I thought I would pass it along. . .

An Open Letter to Bereaved Parents

I won’t say, “I know how you feel” — because I don’t. I’ve lost parents, grandparents, aunts, uncles and friends, but I’ve never lost a child. So how can I say I know how you feel?

I won’t say, “You’ll get over it” — because you never will. Life will, however, have to go on. The washing, cooking, cleaning, the common routine. The chores will take your mind off your loved one, but the hurt will still be there.

I won’t say, “Your other children will be a comfort to you” — because they may not be. Many mothers I’ve talked to say that after they have lost a child, they easily lose their temper with their remaining children. Some even feel resentful that they’re alive and healthy, when the other child is not.

I won’t say,“Never mind, you’re young enough to have another baby” — because that won’t help. A new baby cannot replace the one you’ve lost. A new baby will fill your hours, keep you busy, give you sleepless nights. But it will never replace the one you’ve lost.

Your may hear all these platitudes from your friends and relatives. They think they are helping. They don’t know what else to say. You will find out who your true friends are at this time. Many will avoid you because they can’t face you. Others will talk about the weather, the holidays and the school concert but never about your child. Never about how you are coping.

So what will I say?

I will say, “I’m here. I care. Anytime. Anywhere.” I’ll cry with you if need be. I’ll talk about your loved one. We’ll laugh about the good memories. I won’t mind how long you grieve. I won’t tell you to pull yourself together.

No, I don’t know how you feel — but with sharing, perhaps I will learn a little of what you are going through. And maybe you will feel comfortable with me and find your burden eased. Try me.
Written by Linda Sawley, pediatric nurse; published by Ann Landers

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.  .  .

Hospitals, Hernias & Holidays

July 2, 2011 at 11:32 pm | Posted in emergency room, Grief, hospital, parents, twins | 10 Comments
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Yesterday I called Evan and told him to come home immediately.  As I hung up the phone, I questioned if I overreacted.  We had been at a close friend’s house playing.  All was normal except when we left one twin ran to the car and the other was dragging his left foot.  I asked if he wanted me to pick him up.  It is not unusual for him to get tired and ask to be carried.  However, when I picked him up he screamed to be put down.

Finally I got everybody in the car.  As I drove I thought maybe he was having an allergic reaction.  Maybe he could not walk because his feet were swollen.  Or maybe his shoes were too small and he needed new shoes.  I opted to stop at CVS rather than the shoe store.  At this point, they both were screaming.  She wanted ice cream.  He wanted to sit down.  After buying Benadryl, 2 toy cars and frozen yogurt to go, we were back in the car.  I made the call to Evan.  One of us needed to take him to the doctor.

At home I stripped him down to look for hives.  He was very swollen in his groin area.  Evan got home and took him to the after hours pediatric urgent care.  I fully expected a call telling me there was an unexplainable allergic reaction (like many others in the past) and the hives would be gone in the morning.

Instead Evan called to tell me that he was on his way to the ER.   The hive was actually a hernia.  I needed to go to the ER.   Luckily, I was able to drop off the well twin back at our friend’s house.  Thank you again!!

I got to the ER just in time for the ultrasound.  He screamed, cried and begged (politely) for the ultrasound technician to please stop.  Evan and I held him down.  Ok, Evan held him down.  I had to go cry in the hall.

After the ultrasound we waited to speak to the surgeon.  While waiting, I went to the bathroom.  The bathroom was right across from this hospital’s “consult room.”  The “consult room” was where Evan and I held Jake for the last time.  It was where we were when the ER doctor told us that Sawyer was dead.  They were different “consult rooms,” in different hospitals but they looked the same.  Standard issue plastic couch and chair.  Generic flowery art.  Striped carpet.

As I reached the door of our ER room I looked through the glass panel of the door.  Evan was holding hands with our very much alive son.  I thought of the glass partition which Alice Wisler so insightfully used to describe bereaved parent’s desire to be so close and so distant from their living children.  I walked back into the room.

The surgeon arrived.  He originally said that we would be checked in and surgery would be the next morning.   An hour or so later, we were told that due to life threatening cases and the holiday weekend we would need to go home.  We were discharged early this morning.  Surgery will be scheduled for this week.  I am going to kiss the twins one more time right now.

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.

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.

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.

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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