October

October 2, 2011 at 11:58 pm | Posted in Grief | 10 Comments
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Along with being Breast Cancer Awareness month, October is also Pregnancy and Infant Loss Month.  Did you know that 2,000 women/men lose their babies in 1 day (and that is in the United States alone)?

Myths vs. the truth about pregnancy/infant loss:

Myth: Losing a baby is very uncommon; it won’t happen to me or someone I know.

Truth:

  • 25-50% of all pregnancies end in miscarriage (pregnancy.org).
  • Stillbirths (the death of a baby after 20 weeks gestation) occur in one in every 160 pregnancies–about 60 stillborn babies every single day (March of Dimes).
  • Each year, in the US alone, about 20,000 babies die in their first month of life, many after being born prematurely (March of Dimes).
  • SIDS is the leading cause of death among infants ages 1 month to 1 year.

 

Myth: Pregnancy/infant loss is something that happens to older moms, overweight moms, or moms with health issues.

Truth: “Baby loss” does not discriminate. Often, it’s young, perfectly healthy women who experience the loss of a baby. The Faces of Loss are of ALL kinds of women–young, old, black, white, thin, obese–pregnancy/infant loss can strike anyone.

 

Myth: Miscarriages and Stillbirths are usually caused by a lack of prenatal care or something else the mother did during her pregnancy.

Truth:

  • Almost 100% of miscarriages could not have been prevented, with the majority being caused by chromosomal abnormalities.
  • 25% of Stillbirths are caused by placental problems; 15% are caused by an infection; 2-4% are caused by umbilical cord problems, and 50% have no known cause of death whatsoever. While there are risk factors to be aware of (smoking, for instance), the overwhelming majority of stillbirths are completely out of the mother’s control.

 

Myth: A woman who has just lost a baby wants to forget it ever happened and move on with her life.

Truth: While this may be true for some, many are dying to talk about the child they lost, especially if it was a late-term pregnancy loss or infant loss. The chance to talk freely about their baby(ies), without feeling like they are making everyone uncomfortable, is something many, many women who have lost a baby wish for.

The information above is from I am the Face.  Faces of Loss, Faces of Hope tries to put real stories and faces with all of these statistics.

Burritos, Buddha & Baggage

September 30, 2011 at 11:20 pm | Posted in Grief, mourning, silver lining, twins | 7 Comments
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I have been trying to move past the fact that there may never be an answer to what caused Sawyer’s death.  It is hard to let go.  A moral from one of the twins’ books has been helping me with this process.  The twins’ great grandparents recently gave them a book call Zen Shorts by Jon J. Muth.  Have you ever heard the Buddhist tale about the Monk with the Heavy Load?

One day two traveling monks reached a town and saw a young woman waiting to step out of her sedan chair. There were deep, muddy puddles and she couldn’t step across without getting mud on her silk robes. She impatiently scolded her attendants, who were carrying heavy packages.

The younger monk walked by the young woman without speaking. But the older monk stopped and picked her up on his back, carrying her across the mud. Not only did she not thank the monk, she shoved him out of her way when he put her down and scurried by him.

As the two monks continued on their way, the younger monk was brooding. After a long time, he finally spoke out. “That woman was so rude but you picked her up and carried her! She didn’t even thank you.”

“I set the woman down hours ago,” the older monk responded. “Why are you still carrying her?”

Letting go does not mean forgetting Sawyer or Jake.  It means moving forward.  It will not always be a straight path.  Luckily, I have some little monks with me on this journey.  Here they are in burrito pose (or more commonly known as shavasana):

Namaste.

Handprints & Hope

September 24, 2011 at 11:58 pm | Posted in Grief, silver lining | 3 Comments
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Thank you all for the kind comments.  I appreciate them more than I can express in words.  As I have done in the past, I keep reusing the word hope.  Maybe if I write it enough times I will have more of it.

When I write I describe my life without Jake and Sawyer.  They are never far from my thoughts but I do live my life.  Some of the time I am acting and some of the time I am happy, sad, angry and all the other emotions that life throws at us all.  I am trying to live.  I would do anything for a life with all 4 of our children but I do not have that option.  So, I will just do my best.

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
                                                                                     – – “For Good” Lyrics from Wicked

Anniversaries (again)

September 10, 2011 at 3:44 pm | Posted in Death, father, Grief, mother, mourning, parents | 4 Comments
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The tragedy of 9/11 and its’ anniversary are kinds of grief.   It is of course, an enormous source of grief for all of the families and friends who lost loved ones.  It is also the kind of grief in which you realize that the world as you knew it will not ever be the same.

Hurricane Katrina hit New Orleans the week that Jake passed away.   A very close friend of mine took her 5-year-old son in for his check up and the pediatrician found a rare heart condition.   My grandmother had died.  I felt like the world was coming to an end.   So, I asked the rabbi who presided at Jake’s funeral about the possibility that the world was ending.   He replied with an analogy.   He said that it is like when you decide you are going to buy a certain kind of car.   Once you make the decision you start seeing the car every where.   So, my take away from his explanation was now that I was grieving I would start to see grieving every where. . . Turns out you don’t have to look too far for grief in this world.   The record 7.0-magnitude earthquake hit Haiti shortly after Sawyer died.

I know that 9/11, where close to 3,000 people died; Hurricane Katrina, where 1,500-1,700 people died; and the earthquake in Haiti, where almost 230,000 people died are tremendous losses compared to the death of two babies.   But, those babies were mine.   And, my world will never be the same as it was before they had died.

There is not a contest for who has the most grief.   I am not trying to compare my losses to these catastrophic tragedies.   There are not any winners here.  In grief we have all lost.   However, there is still the next day and the day after that.  And one day, there is a point where we will realize that our loved ones are dead but we are still alive.

I posted the above last year at this time.  On the anniversary of 9/11 and every day, my heart, prayers and thoughts go out to not only the victims but to those who they left behind in this world. 

Unknown & Unchanged

September 8, 2011 at 9:24 pm | Posted in Grief, mourning | 17 Comments
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Nothing has changed.  If you had spoken to me (or I had written) yesterday everything would basically be the same.  Jake and Sawyer died.  The twins are healthy.  However, today we received an email from Sawyer’s pathologist.  We have waited for over a year for the results of the Mayo clinic study which Sawyer is a part of.  The study tests for cardiac channelopathies, such as long QT.

Sawyer’s doctor wrote, “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”

I always knew the study might be inconclusive.  However, I hoped that there would be some sort of medical answer.  An answer that could somehow help me rationalize and comprehend Sawyer’s death.  If there was some known medical condition we could have the twins tested for it.  As of now there is no answer.  Maybe there never will be.  No one ever promised that life would make sense.

The cause of Sawyer’s death is unknown.  The facts are the same as they were yesterday.  Nothing has changed or has it?

August & Awkward Appointments (part 2)

August 18, 2011 at 11:48 pm | Posted in Grief, mourning, pregnancy, silver lining, twins | 7 Comments
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As I wrote about previously in this post, doctor’s appointments can at times be awkward.  I am not a big fan of the forms that you have to fill out about your medical history.  I understand why they are necessary but I truly dislike listing the birth and death dates of Jake and Sawyer.  The OB forms do not even have enough lines for me to write all of the complications before and after pregnancy that we have had.  I am sure one day these forms will not bother me but today they do.

The twins had their 4-year-old check up today.  A new nurse came to get us from the waiting room.  As she brought us into the room she asked me, “Are you expecting company?”  I looked at the twins and Evan and thought to myself, “how many more people can we fit in this tiny exam room?”  And, who else would I be expecting?  Then the nurse looked at my stomach and repeated the question.  My quizzical look turned to horror.  Really, is she really asking me if I am pregnant?   Yes, she did.

That question is emotion-packed.   The times when I answered yes to that question – thoughts of being pregnant with Jake, the twins and Sawyer.  The realization that my stomach apparently still has a pregnancy pouch.  Or, maybe I just made an unfortunate outfit choice.

The nurse was reading over our medical charts as my mind was still racing.  I could see in her eyes that she had just read about Sawyer, Jake or maybe both.  She looked at me and apologizes.

Overall the day was a success.  One outfit for Good Will.  Two healthy twins.  Three weeks down in August.  Four beautiful children.

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Just Jake

August 14, 2011 at 4:34 pm | Posted in Death, Grief, hospital, mourning, parents, silver lining | 21 Comments
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Dear Jake,
I cannot believe that you would have been 6 years old today.  In some ways it seems like so long ago since I held you and in some ways it feels like last week.  I have so much to thank you for and I do not think I have ever told you.

First, I would like to thank you for choosing us to be your parents.   I remember running downstairs after taking the pregnancy test and seeing the positive result.  I could not wait to tell your dad.  I was completely filled with joy.  I have not been truly happy since that day.  Do not take this the wrong way, I have been happy.  It is just a different kind of happy and it is often bittersweet.  That wonderful March day I was just so blissfully unaware of the tragedies that life could and would bring.

Second, you made me understand how short and precious life really is.  You showed me in your brief time with me how pure and simple love can be.

Lastly (at least for now), I want to thank you for the strength you have given me.  It is difficult for me to explain but the night your youngest brother Sawyer died you are who was with me.  In the emergency room, you are the one who held me up in the hallway.  I am sure without you I would not have been able to stand let alone walk.  I kept telling myself if I could live in a world without you, I could and would somehow find a way to live without Sawyer.

I wish that we were having a birthday party with you today.  We are not.  Perhaps you are having a cosmic celebration with your little brother, your Mom Mom and your great-grandmother.   Whatever you are doing please know how much I love and miss you.

August Attire?

August 12, 2011 at 11:48 am | Posted in Grief, mourning, silver lining, twins | 6 Comments
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It might say August on the rest of the world’s calendars but here in our house we are getting ready for the end of October.  Halloween to be specific.  The Princess and her puppy would like their own calendar so that they can cross off the days until the big event.

 

The Power Ranger (who is really wearing an evil Spiderman costume – but please do not share that information with him) does not want his picture taken.  Additionally, he does not want to change out of his costume until after Halloween – despite the fact that Halloween is approximately 2 1/2 months from now and it is currently averaging 100 degrees outside.

It looks like I will be having wardrobe battles with Spiderman for the next few months.  I have to go print out some calendars for the Princess now.

 “One joy shatters a hundred griefs.”
– – Chinese Proverb

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

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