Hectic, Hope & Hair

October 20, 2012 at 10:20 pm | Posted in Grief, Love, normal?, twins | 11 Comments
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There always seems to be a lot happening in October.  However, this year seems extra crazy busy.  For example, yesterday the twins had a fun run at school, a baseball game and a kindergarten social.  Busy is good for me.  It keeps me moving forward.  No time (or at least not too much time) to stop and think about the 3rd birthday party we would be planning if Sawyer were still alive.

It turns out that hectic schedules are not so great for the twins.  Getting ready quickly to get to the next event is not either of their strong points.  So yesterday when no one would get dressed for baseball.  After lots of whining and a small melt down or two, I surrendered.  Their team was not going to have to forfeit if the twins were not there.  In fact, they do not even keep score.  Little people do not have to be busy all the time.  Finally, they agreed to get dressed for their school social.  And they had a good time.

Until, they didn’t. . .

Today was supposed to be another busy day.  A school fall festival and a hair cut.  I again did not fight the twins when they refused to get dressed to go to their fall festival.  They played pretend.  I braced myself for the fight I thought I would have with them in order to get them dressed to go out for their hair cuts.

Evan and I were pleasantly surprised when 2 little people got dressed and into the car without a melt down.  The twins were excited for this hair cut.  I had donated my hair last year and unintentionally inspired our daughter to grow her hair.  Here is her hair before:

Here is the hair pull that did not hurt (or put anyone in time out):

And, the after picture:

A Walk to Remember

October 14, 2012 at 10:32 pm | Posted in Grief, life after loss, Love, normal? | 9 Comments
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Every day 13 babies will be lost to SIDS and other sudden, unexpected infant deaths.

One horrible day in December 2009 our baby, Sawyer, was one of those 13.  We remember Jake and Sawyer every day but today Evan and I participated in our 7th Walk to Remember.

The first year it was just the two of us.  Jake had died a few months before the walk.  Evan and I could barely talk about our child’s death let alone listen to the other sad stories parents were sharing about their losses.

Today we had the twins with us and we were there for Jake and Sawyer.

I can now talk about Jake and Sawyer.  I listen to others as they tell about their sons and daughters.  I still wish none of us had to live in a world without our child/children.

Tomorrow is Pregnancy and Infant Loss Remembrance Day.  As part of the day, everyone is invited to light a candle at 7 pm in all time zones, all over the world.  The idea is that if everyone lights a candle at 7 pm and keeps is burning for at least 1 hour, there will be a continuous wave of light.

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.

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.

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. 

Letter to the Twins’ Kindergarten Teachers

September 4, 2012 at 10:10 pm | Posted in life after loss, Love, normal?, twins | 11 Comments
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Dear Ms. B. and Ms. K.,
We have been having a great year so far. The twins love being in your classes. We completed the Family Tree homework assignment which was due today. I thought I should clarify about a few of the leaves.  The ones which I am specifically referring to are the following:

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I honestly do not know what the twins will say about these leaves when it is their turn to present.  They may say something like “Jake and Sawyer are flowers.”  Or, they could tell the class how they bring stones to Jake and Sawyer.  It is also possible they could tell the class which Halloween costumes they have picked out for Jake and Sawyer.

Jake was their older brother.  He died before the twins were born.  Sawyer was their younger brother.  He died when the twins were 2 1/2 years old.  I do not know if they have any real memories of Sawyer.

The twins will not cry as they excitedly tell you and the rest of their class about their brothers.  They will happily talk and talk about them both.  They will smile as they explain to you how much they wish Jake and Sawyer would grow.

If you have any questions please feel free to let me know (I will try my best but I can not promise that I will not cry).

Thanks again,
The Twins’, Jake’s and Sawyer’s Mom

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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