May 28, 2012 at 10:28 pm | Posted in Grief, life after loss, normal?, pregnancy | 18 Comments
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The doctor who told me that I was most likely having a miscarriage put me on bed rest for a few days.    Bed rest for me equals time where my thoughts can take over any rational part of my brain and run wild.  Bed rest means that I can not resort to my usual defense of keeping so busy that I do not have time to think.

I cried on the couch as I watched the twins play.   I was so lucky that my mom was able to come to town.  I told her that she did not need to come.  I knew by the time I spoke to her that no amount of bed rest was going to help.  She said she wanted to come anyway.  I did not argue.

I thought writing about it in my last post would somehow help.  I reread my post and it turns out that I did not actually write what happened.   So here it is, I had a miscarriage.

I will be fine.  I will continue to get up and live just as I have every day, week, month and now years since Jake and Sawyer have died.

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. 

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.

Mixed Up Mother’s Day

May 8, 2011 at 10:20 pm | Posted in Death, Grief, mother, traditions, twins | 7 Comments
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The definition of a mother is “a woman who has, conceives, gives birth to, or raises a child.”

I am so lucky that I woke up this morning to our two happy twins saying “Happy Mother’s Day!” to me.   I am also so fortunate and grateful that I was able to call my mother to wish her a happy Mother’s Day.  I know that there are people whose mothers, grandmothers and/or children have died.  I know that this day can be challenging on many levels.

As I have written about before, I often silently tell myself to “remember the past, hope for the future but live in the present.”  No matter how many times I repeat this saying I cannot help but to think about past Mother’s Days.  .  .

Mother’s Day 2005 – I was pregnant with Jake.  We spent the day with my mom and my grandmother.  My brother, sister-in-law and our 10 month old nephew had the whole family over to their house.  We had not been for the nuchal screening test yet.  I was blissfully ignorant and happy.

Mother’s Day 2006 –  I was in a no (wo)man’s land of mothers.  I was a mother with no child to care for and raise.  Jake had been dead for less than a year.   Evan and I went to the cemetery.  We planned Jake’s unveiling and hoped for the possibility that Jake would one day have a brother or a sister. 

Mother’s Day 2007 – I was pregnant with the twins.  I still felt like I was living in a no (wo)man’s land of motherhood.  Jake had been gone for nearly 2 years.  We went to the cemetery.  We had gone for an OB appointment the Friday before Mother’s Day.  Our OB, who was one of the few people who met Jake, said to me at the end of the appointment that I should be really happy because I was now going to have my first official Mother’s Day.  I still remember how those words cut through me like a knife.

Mother’s Day 2008 – The twins were 10 months old.  According to anyone’s definition I was now a mother.  Jake had been dead for almost 3 years.  I was happily exhausted.  We visited Jake at the cemetery and spent the day with the twins.

Mother’s Day 2009 – I was pregnant with Sawyer.  The twins would be 2 at the end of July.  Jake would have been 4 that August.  We visited Jake at the cemetery and spent the day with the twins.

Mother’s Day 2010 – Sawyer had been dead 4 1/2 months.  The twins were almost 3.  Jake would have been 5.  We visited Jake and Sawyer at the cemetery.  I cried most of the day and tried to play with the twins.

Today we went to the cemetery.  One of the twins left a toy for her brothers.  She said she was leaving the toy to make Jake and Sawyer happy.  As I sit here and write I think she makes me happy.  So do all three of her brothers.

So sad

March 14, 2011 at 10:36 pm | Posted in Death, Grief, mother, mourning | 17 Comments
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I have tried to write this post several times in the last week.  I cannot seem to find the words but I am going to try.

Evan’s mother lost her battle with cancer.  I was very lucky to have her as a mother-in-law. 

She was an amazing artist

She was an amazing business woman

She was an amazing athlete.  In one 9 month period, right after chemo for the cancer which had returned to her bones, she had 3 holes in one. 

And most importantly, she was an amazing mother, grandmother, wife, sister and friend.  I am so sad that she died.

A few weeks ago Evan and I were talking.  He told me that in a perfect world his mom would be healthy, happy and teaching art to all 4 of our children.  Here she is playing with the twins last summer:

I like to think that Evan’s mom is now with Jake and Sawyer.  Maybe, just maybe she is teaching art to them as I write.

Rainbows, Rite Aid & Readjusting

March 1, 2011 at 10:54 pm | Posted in Grief, silver lining, twins | 8 Comments
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It takes both the sun and the rain to make a beautiful rainbow.

These last few days it is difficult to see the sun.  As I mentioned in this post, we are spending time with Evan’s mom.  The good moments are fewer and farther apart.  I know that life has sun and rain.  I so wish I could write more about sunny times.   Even through the rain the twins can find the sun.  Here they are at Rite Aid:

The twins can also scout out the rainbows.

They spent a long time searching for rainbows in these crystal figurines.  Turns out flashlights combined with just the right amount of sunlight produce a lot of rainbows. 

The oil slick in the parking lot of Rite Aid.  I could have debated it is not truly a rainbow but pollution.  I did not because I have learned that I usually lose those kind of debates with our 3 1/2 year-olds.

The rainbow glasses at Mom Mom and Pop Pop’s house.

I have always hoped for miracles. 

After Jake was born at 26 weeks with hydrops, I hoped he would be among the 30% of babies who survive these enormous obstacles.  There was no miracle.

The horrible night we brought Sawyer to the emergency room, I hoped for the miracle that it would all be an awful mistake.  There was no miracle.

I now know that there will be no miracle that will give Evan’s mom back the life she had.  It is time for me to readjust what I am hoping for.

A Different Kind of Babysitter

August 30, 2010 at 10:50 pm | Posted in funeral, traditions | 9 Comments
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The doctors asked if we wanted an autopsy of Jake’s body.   Our first question was if there could be anything determined from the autopsy which would further explain Jake’s death.  The answer was no.   Our second question was would anything from an autopsy benefit other babies or medical research.  Another no.   Jake had been through so much.  We did not want him to go through anything else.  So our answer was no autopsy.  (Years later I was heartbroken to learn that parents are not always given the option to decline an autopsy for their child – but that story is for a later post. . .)

We left the hospital several hours later.   Again, I did not want to leave without Jake.  Realistically, I knew that he was no longer there – just his 2 lb. 14 oz. body.   I was preoccupied with where he would be taken.   I did not want Jake to be alone.  He had never been alone.  Jake was inside of me for 26 weeks.   Once he was born he was surrounded by numerous doctors and nurses.  Before we left we were assured that he would not be alone and that Jake’s body would be brought to the funeral home that afternoon.  

At 11 am we went to the funeral home.   We discussed arrangements and picked out a casket.  Turns out there is only one casket Jake’s size.  So once again, we did not have to make a decision – Jake made it for us.   I asked and Jake’s body was not there yet.

Next we had a 1 pm appointment at the cemetery.  We were shown an area called Baby Land.  It is the section of the cemetery for babies and young children.  It just felt wrong for us.  We were taken to the other side of the cemetery on a small hill.   It was so peaceful and pretty.   Evan and I knew this was where we wanted Jake to be buried.

We finalized the arrangements.   Again, I asked where Jake was and if I could go see him.  I know this sounds morbid but I just could not bear the thought of him being alone – even if it was just his body.  We were told that he was at the funeral home and we were allowed to go see him.

Matt, our contact at the funeral home, met with us again.  He told us about Shomerim.

“Shomerim are watchers or guardians of the soul. Jewish tradition requires that the deceased not be left alone prior to burial. “Shomers” and “Shomeretts” therefore sit at the funeral home in close proximity to the deceased, reading psalms and assisting them in making the transition from life to death. This activity is considered holy.”

I felt myself breathe again.   Kevin, the shomerim, sat with Jake and read psalms to him.  Jake was not alone.

Going Home & Grandmother

August 21, 2010 at 2:22 pm | Posted in NICU | 4 Comments
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Every day Evan, my husband, would wheel me to the NICU to see Jake.  I would usually be crying on the way there and on the way back.  We ran into a few tours that the hospital gives to pregnant couples.   I was sure that if they were not already nervous about the impending birth of their babies, seeing me and Evan crying while wheeling through the hospital was enough to terrify them.   

My parents, along with both sets of Evan’s parents (his parents divorced and both remarried when he was 4) were at the hospital those first few days.  They all visited Jake and sat with me in my hospital room.  Jake seemed to be stabilizing and one set of Evan’s parents left.  My parents were still there and staying at our house.  Evan slept in the hospital room with me every night.  

On Wednesday of that week I had some trouble breathing.  It turned out I had fluid in my lungs – most likely from all the stuff they pumped into me before Jake was born.   I had to be put on oxygen but I would be fine.   My parents announced they were leaving.   As I mentioned in this earlier post my grandmother had not been in good health.   However, her health had been declining for several years and she always seemed to bounce back.   I knew if my parents were leaving, while I was still in the hospital and Jake was in the NICU, that meant my grandmother was very ill. 

My brother and I were very close to our grandmother.   We always wanted to go to our grandparent’s house.  Our grandparents made everything magical and fun.  We would play, sing and go to the beach.  Our grandmother taught us to jump waves in the ocean.    She told us that if we got knocked down to get back up and to always keep one eye on the waves.  Grandmother would give us chocolate pudding or yoo-hoos. What could be better? 

So, my parents would not tell me anything about my grandmother’s condition – just that they were leaving to go be with her.  I wanted to be with her too but I would never leave Jake (plus I was not well enough to travel).   

Evan continued to wheel me in the wheelchair up to see Jake – except for the one night I had to be wheeled in a hospital bed.   A nurse helped get me to the NICU that time.   I was not allowed out of the bed but it was level with Jake’s isolate so, they just wheeled me next to him.   We were even able to hold hands that night.  Okay, I just put my finger into his tiny hand. 

Holding hands with Jake

My OB told me that I was going to be released from the hospital in the next day or so.  I tried everything I could think of to persuade her into letting me stay.  Even though I was not Jake’s primary caregiver or spending hours and hours with him, I did not want to leave the hospital.   I took comfort in the fact that Jake and I were in the same building.  The thought of leaving without him was unimaginable.  

All of my attempts to stay in the hospital failed.  We were planning to leave the hospital on Friday night after dinner.   There was no part of me that wanted to go anywhere but back to the NICU.   

I was not able to eat much during those days however, the nurses still brought me meals.   Dinner arrived that night and I looked at the tray.  There was chocolate pudding – I know this sounds crazy even as I write it, but I felt like the pudding was some sort of sign from my grandmother.  I somehow knew that the sign meant that she had died that evening.

August 14

August 14, 2010 at 4:20 pm | Posted in hydrops, pregnancy | 7 Comments

Five years ago today, Dr. K2 came to speak with me and my husband about the plan for our baby.  As I mentioned in this post, Dr. K2 was the doctor who mistakenly revealed that the last chromosome (the gender chromosome) of our baby’s DNA was XY.  Dr. K2 is also one of the leading neonatologists in the city.   He told us that the ultrasounds showed that the fluid was still increasing and putting our baby into distress.  Our baby could not survive inside of me any longer.  Our baby’s best chance was to be delivered so that the doctors could remove the fluid. 

I was scheduled for a c-section that afternoon.  Our baby would not have lived through the birth canal so a c-section was the only option.  We were also advised that it might be a vertical as well as horizontal incision depending on the position of our baby.  None of this mattered.  We just asked Dr. K to do whatever was in the best interest of our baby. 

Dr. K (I’ll just call him Dr. K from now on – we never saw Dr. K1 again after the cvs) gave us all the odds.  A baby born 14 weeks premature has a 60% chance of surviving.   A baby born 14 weeks early with hydrops has a 30% chance of surviving.  In my mind I began to rationalize once again that our baby could be in the 30%.  After all,  we were already the 1 out of the 5 to have trisomy 21.  Maybe it was our chance to beat the odds.

The delivery room was very crowded.  There were at least 20 people in the room besides me and my husband.    Everyone was moving quickly (or maybe it just seemed that way because I was so still).  There were a lot of things happening most of which were being done to me (but luckily for me I could not feel a thing because I had been given a epidural). 

At 3:26 our baby was born – alive!  And, if you don’t remember from your 8th grade biology, you can read my post about the road to raising a down’s baby . Or, I will just tell you – XY means that we had a baby boy.   He weighed only 2 lbs., 14 ounces, measured 14 1/4 inches, and arrived 14 weeks early.

After he was born it was not at all like I had imagined (or like anything I have ever seen on TV or movies).  The doctor did not smile and bring me my baby so that I could look at him and hold him.   Instead, another doctor whisked our baby away before I could even see him.  I did get a glimpse of him all bundled up with a hat on his head.  His right eye was shut and his left eye was open  – almost as if he was winking at me.  

I knew that it we still had a long, long road ahead of us but he was alive and we were still on the road. 

Happy, happy birthday to our sweet baby Jake!  We love you more than I can express in words.  Your dad and I wish that we were going to be driving you to your birthday party today.  Instead, we will drive to visit you at the cemetery. 

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