Hats & Hope?

September 20, 2011 at 11:38 pm | Posted in Grief | 11 Comments
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I had been hoping for an answer to why Sawyer died.  And while I was hoping, I wanted an answer to why Jake died.  There is no answer today.  There might not be an answer tomorrow.  Or ever.  I was hoping that I could fight against whatever caused the deaths of our babies.  I could raise awareness.  Help other families.  Now I do not know what I am fighting against.

Perhaps in the case of Jake it is prematurity and hydrops that I need to fight.  Maybe Sawyer will officially be another SIUDS statistic and I can try to figure out what that means.  It seems hard to fight against the unknnown.

I have readjusted what I hope for in the past.  It is once again time for me to change my hopes.  I have to stop hoping for an answer.

I will continue to be so thankful for everything I do have.

I will continue to be inspired by parents who have turned their grief into action:

The Ronan Thompson Foundation
Layla Grace Foundation 
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

I hope to have the strength one day to also turn my grief into action.  Writing and speaking about Jake and Sawyer is a step in the right direction.  I just have to figure out what is next.  Any suggestions?

NICU Nurses

September 16, 2011 at 11:48 pm | Posted in Grief, hospital, mourning, NICU, parents | 6 Comments
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This week I, along with 3 other mothers, spoke to group of NICU nurses.  The nurses have bereavement training.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital.   I listened to the other women recount their bittersweet experiences.  I spoke about mine.  This is the second time I have spoken to a group of NICU nurses.   I am very thankful that this group of people are able to be NICU nurses.  I never could do it.  I am so amazed by their skill and compassion.

The other women who spoke turned their grief into action.  One of the women and her husband started a grief group at their church.  Another women writes a blog.  The third woman started a group called Rock Goodbye Angel.   The purpose of the group is to “encourage families who have lost a baby to regain hope by caring for them during their time of grief so that they know they are not alone.”

I think that the 4 of us gave the nurses some helpful feedback.  A few suggestions came out of the discussion:

  1. Hospital staff (nurses, chaplains, etc.) perhaps do not need to bring up topics such as funeral arrangements and autopsies while the baby is still alive.  Parents of babies in the NICU are trying to focus on hope and survival.
  2. Inform everyone in the hospital when there has been a death so before they come into your hospital room they already know.  This way when the person who comes to empty the trash they will not ask how the baby is doing.  Our hospital puts a dove outside the door to indicate tha the baby has died.
  3. It would be great if there were separate entrances and exits for parents whose baby has died.  Waiting in the wheelchair after being discharged from the hospital all the mothers are in the same area.  It was excruciating leaving Jake in the hospital and waiting with happy new parents and their babies did not help.  On the flip side, when I left the hospital with the twins, I was waiting in the wheelchair for Evan to pick us up.  I was sitting next to a mother with empty arms.  I knew what that meant and my heart broke for her.
  4. Continuing bereavement training is helpful for caregivers, friends and family.

“Though we encounter it as suffering, grief is in fact an affirmation. The indifferent do not grieve, the uncommitted do not grieve, the loveless do not
grieve. We mourn only the loss of what we have loved and what we have valued, and in this way mourning darkly refreshes our knowledge of the causes of our loves and the reasons for our values. Our sorrow restores us to the splendors of our connectedness to people and to principles. It is the yes of a broken heart. In our bereavement we discover how much was ruptured by death, and also how much was not ruptured. These tears lead directly to introspection.”  Leon Wieseltier, The New Republic’s literary editor.  (sent to me by my sister-in-law Melanie – thank you!). 

A Person is a Person

August 24, 2011 at 10:50 am | Posted in Grief, silver lining, twins | 9 Comments
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“A person is a person, no matter how small.”
– – Dr. Seuss

Jake weighed into this world at 2 lbs. and 14 ozs.  Not a big guy but a fighter.  According to the secular calendar, nearly 6 years ago Jake’s heroic struggle ended. Jake gave it everything he had, and we were and still are so proud of him. Sometimes the challenges you face in life are simply too much.

According to the Jewish calendar, the anniversary of Jake’s death was 2 days ago.  The Yahrzeit falls annually on the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar.  Evan and I lit a Yahrzeit candle.  We said the mourner’s kaddish.  After all the times I have said this prayer I still cannot seem to memorize it.  Perhaps it is because I am usually crying.  Perhaps it is a mental block.  Whatever.  We thought about Jake.

I will light another candle for Jake in a few days.  I have my own tradition of lighting Yahrzeit candles on both the Jewish and secular anniversaries.  I will just call it the mourning mom’s calendar.

Luckily, the Cat in the Hat and Fancy Nancy were visiting the Princess and the Cowboy this weekend and kept everyone busy.

Note:  The Power Ranger costume was in the wash so the cowboy costume filled in for the moment. . .

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

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.  .  .

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