Better

October 8, 2012 at 11:50 pm | Posted in Grief, life lessons, Love, normal? | 9 Comments
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I have written before how I am so very lucky for my grandfather.  I know that he will not live forever.  It was never the plan for him to outlive me.  I know that is not what he would want.  It defies the circle of life that Evan and I have outlived 2 of our children.  Jake and Sawyer were supposed to bury us. 

My grandfather is now in hospice.  Although life is going in the natural order – it is still hard.  I do not want to see my grandfather in pain.  I want to make it easier.  I do not know what to do except what I have always done – love him unconditionally.  And, appreciate how much better the world and my life is because of him.

The Balancing Act

October 4, 2012 at 11:14 pm | Posted in Grief, life lessons, normal?, venting | 5 Comments
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Areas of my life which I wish I could find a balance:

1. Answering the question, “how many children do you have?”

The twins started a new school this year. There are new teachers. New parents.

The twins started preschool the week after Sawyer died. We did not plan it that way but it is the way it worked out. It was a small preschool. I had already answered the questions. I had cried the tears in the parking lot.

Sawyer has been gone over 2 years so I can usually answer the question without the tears. The balance I am trying to find is answering the question without the pity that always seem to come along with it. It is hard to explain but I do not want people to feel sorry for us. I just want to be able to answer the question and talk about Jake and Sawyer.

2. “Being so busy I cannot think” coping technique

In 2005, Jake had died. I was still alive and forced to figure out how to live in a world without him. I searched and searched for steps to follow. A guide. Anything to help me get through the excruciatingly painful moments. I realized that being busy was the way to go. I desperately filled every possible moment.

In 2009 after Sawyer died I continued to utilize my “being so busy I cannot think” coping technique. I am at a point where I need to rethink just how busy I keep myself.

I do not know how to find the balance. There might not be a balance. Or, maybe there is and I will find it one day.  Till then I will try to take Dr. Seuss’ advice and “step with care and great tact.”

Home is where the heart is. . .

September 30, 2012 at 11:02 pm | Posted in after death?, Cemetery, Grief, normal? | 7 Comments
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I think that is how the saying goes. . .but what if your heart has been smashed into a thousand pieces?  Where is your home then?   I want my home to include all of my children.  Jake never left the hospital.  Sawyer did live in our home but not for long enough.

Our next door neighbors are selling their house.   There has been a lot of talk about what people want in a house.  A garage.  A basement.  X number of bedrooms and bathrooms.  The top of my list is actually none of those options.  My biggest concern is how far the house is from the cemetery where Jake and Sawyer are buried.  We currently live 15 minutes away.

I was speaking to another mom at baseball practice and she mentioned that her neighborhood is at the edge of the cemetery.  My mind filled with thoughts of what it would be like to be able to walk over to see Jake and Sawyer.   Would I go more often?  Would I ever go anywhere without going to the cemetery first?  It is so hard to drive by it and not stop.

Today we went and picked out 4 mini pumpkins.  One for each of the twins.  One for Jake.  One for Sawyer.  I was thinking that I would bring them to the cemetery as I have done in past years.  The twins had another idea.  They insisted on bringing the pumpkins to Jake and Sawyer’s room.  Jake never had a room in our current house.  He was born and died 2 years before we moved into our house.   Sawyer did have a room.  It was the room next to the twins’ room.  And, that is where they brought the 2 mini pumpkins.

   

Anger

September 24, 2012 at 10:46 pm | Posted in Grief, life lessons, normal?, twins | 7 Comments
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As human beings, our greatness lies not so much in being able to remake the world — that is the myth of the atomic age — as in being able to remake ourselves. – Gandhi

Anger.  It is the 2nd stage of grief according to Elisabeth Kübler-Ross.  At the time of Jake’s and Sawyer’s deaths I do not specifically remember feeling anger.  Perhaps there was no room for anger because the stages of denial, bargaining and depression seemed to have trapped me.  However, anger creeps into my life at unexpected times.

I was waiting in line with one of the twins so that she could sit in a fire truck.  We were patiently waiting our turn.

We were in line behind a very cute girl with Down syndrome.  She was not so sure about climbing up the stairs of the fire truck.  The fireman offered to help her but she wanted to do it herself.

I asked the woman with the girl in front of us in line how old she was.  She responded, “She is my daughter’s girl and she is 8.”  I wanted to say something back to her like “You mean she is your granddaughter?”  I remained silent.  Jake would have been 7.  Would he have liked fire trucks?

My little girl began to ask repeatedly, “When is it my turn?” My silence broke to reassure her that, “It is your turn next.”

The woman with the girl, looked at my daughter who at this point was jumping up and down as she continued to whine about her turn, pointed towards her granddaughter and said “This will really teach you patience.”  And there it was – anger.  I was angry at this grandmother.  I have not walked in her shoes.  I do not know the first thing about her life but I was angry.  The voice inside my head wanted to explain to her that I too had a Down syndrome child but he died.  He died before I got the chance to learn that level of patience.  I once again remained silent.

Our Giving Tree

September 18, 2012 at 10:18 pm | Posted in after death?, Grief, Love, normal? | 9 Comments
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The winter after Jake died one of my favorite friend’s mother had a tree planted at a local park in his memory.

Sadly, my friend’s mom died the next year.  I had a tree planted next to Jake’s tree in her memory.  The two trees were planted near a small pond.  In 2009, it rained so much that her tree did not make it.  I was in the process of trying to relocate both trees away from the water when Sawyer was born.  And then before I knew it he had died.

So I bought 2 trees.  A tree to replace my friend’s mom’s tree.  And, a tree in memory of Sawyer.  All 3 trees are now away from the pond and at the edge of a playground.  The first summer after Sawyer died it was really hot.  I would go by as often as I could to water the trees.  It made me feel like I could take care of something for Sawyer and Jake.  All 3 trees made it through the summer but Sawyer’s always seems to be struggling.

I took the twins to the playground last week.  I always check on the trees when we are there.  The twins often help me.

As Sawyer’s sister “helped” with the tree she happened to pull off a small branch.  She asked if she could bring it home to take care of it.  I responded, “sure, why not.” When we got home it was bath time.  She asked if she could take the branch into the bathtub and wash it.   Once again I answered, “sure, why not.”

After the bath she wanted to make pajamas and a blanket for the branch.  And, she did.

Anniversaries (repost)

September 12, 2012 at 12:12 am | Posted in Anniversaries, Grief, life after loss, mourning | 2 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 have previously posted this on 9/11.  On the anniversary 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. 

Boys (& Girls) of Summer

September 10, 2012 at 12:04 am | Posted in after death?, Grief, life after loss, normal? | 6 Comments
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When Evan and I were told it was 100% certain that Jake had trisomy 21 (Down Syndrome), 1 million thoughts raced through my mind.  I doubt I can adequately articulate my exact thoughts and feelings at that moment.  However, when we were “by accident” told that Jake was a boy I remember very clearly the precise thought which entered my mind first.  The realization that Evan might not be able to play little league with our son was the thought which resonated first (and loudest) in my brain.

Jake was born 14 weeks early and only lived for 14 days.  He did not ever leave the NICU.  He never played little league.  His little brother and little sister did join a team this year.  They played in their first little league game over the weekend.

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The team shirts were randomly given out right before the game.  I have always thought that Jake’s lucky number was 14.  So, maybe just maybe he was there today too.

7 years minus 1 day & I still miss you

August 26, 2012 at 9:14 pm | Posted in after death?, Grief, hydrops, Time | 15 Comments
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It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.  Rose Kennedy

Dear Jake,
Tomorrow it will be 7 years since your Dad and I held you. I am still not sure how anyone got me to leave the NICU that Friday night.  I have nothing really new to tell you.  It is another day without you.  Tomorrow will come and you will officially be gone for 7 years.  The numbers do not matter.   I will miss you forever.  Love you always.  I will look for you in my dreams.

Thank you Jake

August 12, 2012 at 9:52 pm | Posted in after death?, Grief, twins, why I write | 12 Comments
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“If there ever comes a day when we can’t be together
keep me in your heart, I’ll stay there forever.”
Winnie the Pooh,  A. A. Milne

Dear Jake,
It was 7 years ago today when I was admitted to the hospital.  The doctors said there was no other option.  You were not ready for this world.  I suppose the world was not ready for you.  Your dad and I were terrified when the doctor told us my contractions were 3 minutes apart.  I could not believe at 26 weeks it could possibly be real.  I did truly believe you would live.  You held on for 2 more days before we actually got to meet you.

I still cannot understand how it is 7 years later.  I do not need a calendar to tell me the time of year.   My tears are much closer to the surface.  The lump in my throat is back.  My irritation and impatience have also risen just below my skin.  My nerves are so raw.  I wish to lock myself away so that I do not snap.  I already have apologized to your daddy.   If only just for a few moments I could be with you and your littlest brother.  I know that it is not possible.  However, this time of year I frequently seem to find myself back on the island of denial.

Your Yahrzeit was this weekend.   (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.)  Your dad and I lit a Yahrzeit candle for you.

You have 2 new cousins!  Welcome to the world Eli and Owen!!  I wish you could meet them.  You probably already know this but your sister asked if she could have one of the babies.  She desperately wants a baby brother.  She talks about you and Sawyer almost every day.  This morning she brought me two blankets she found for each of you.  She is so sweet and thoughtful.  I am trying my best to keep it together.

Thank you for chosing us as your parents.  Thank you for the time you were able to spend with us.  Thank you for sending us your baby brother and sister.  They are shielding us from all the rain.

I miss you so much.  I love you to the moon and back baby boy.  I will look for you in my dreams.

It is complicated

August 8, 2012 at 9:26 pm | Posted in after death?, Grief, life after loss, Love, normal? | 10 Comments
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It is complicated to explain.  Or maybe it is not.  The twins are doing and will continue to do things that Jake and Sawyer never did and never will.  This is a fact.  A bittersweet part of our lives.

There will be no first days and no last days.  And nothing in between.  Sometimes I play the pointless “What if” game.  What if there were more time with Jake and with Sawyer?

I just read True Compass: A Memoir by Ted Kennedy.  He included a letter his father Joseph Kennedy Sr. wrote to a friend whose son had just died:

Dear Jack,
There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. Nor is it any easier the second time than it was the first.

And yet I cannot share your grief, because no one could share mine. When one of your children goes out of your life, you think of what he might have done with a few more years and you wonder what you are going to do with the rest of yours.

You never really accept it; you just go through the motions. Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something–something that he did not have time enough to do. And, perhaps, that is the reason for it all.  I hope so.

Sincerely, Joe

I hope so too.

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