A bit of hope

February 26, 2016 at 5:48 pm | Posted in Grief, life after loss, Love, Sawyer | 5 Comments
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quote - caterpillar

Sawyer’s pathologist emailed in 2011 that “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”  No one knows what caused Sawyer’s death.  I try not to think about this fact often but about once a year Evan or I email Sawyer’s pathologist to touch base.  The response is always kind but does not have any new information.  However, this year the doctor wrote back that in 2010 they had “sequenced a limited number of genes and nothing was found.  We could go back and do whole exome sequencing” again (with 2016 medical advances). 

This email gives me a bit hope for so many reasons.  One, the doctors have not forgotten about Sawyer.  Two, there is the slightest chance that one day we might know what caused Sawyer’s death.  This will not bring him back but maybe it will prevent another family from losing their child. 

Hope is a 4 letter word

January 22, 2016 at 4:44 pm | Posted in Grief, life lessons, Love | 12 Comments
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quote - love - mlk

In 2015 we had a failed adoption.

Evan and I thought about adoption since we started talking about trying to have more children after Jake died.  We started infertility at that time too.   We were so lucky, fortunate and blessed to have had the twins and Sawyer with the help of lots of medical professionals.

In 2013 we revisited and moved forward with the adoption process.  There were a lot of rejections along the way but in August 2014 we were picked by a birth mother.  She was young, homeless and stated that the birth father’s whereabouts were unknown.  Evan and I met with her once for lunch.  On a separate occasion I was able to go to a doctor’s appointment with her.

On New Year’s Eve day we got a call that she was in labor.  Evan came home from work.  We told the twins and started to pack the car.  I took our dogs to be boarded with the vet. By the time I got home we had gotten another call telling us not to leave quite yet.   The birth mother started to have second thoughts and a potential father had entered the picture.

The baby was born on 12/31/2014.  Evan and I spent the next few days on a horrible roller coaster waiting for the birth mother’s decision.  A few days into 2015 we were told that she had decided to parent the baby.

Over the last year I have gone from sadness to anger (with lots of emotions I cannot identify in between).  I have rationalized that we helped this baby and his mother but he is not ours.  He is being raised by his mother, who, with help from us, is no longer homeless.  Hoping 2016 brings good things for everyone.

 

Hearts

November 10, 2015 at 7:22 pm | Posted in Grief, life after loss, Love, twins | 7 Comments
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Today the twins had their check up with the pediatric cardiologist.  They were both rock stars during the tests.  Their hearts are structurally normal.  Everything is fine.  We will continue regular activity and come back for our next check up.

These are the results that I want to hear but I would be lying if I said that was all I want to hear.  I know that it is not realistic, but I want someone to explain to me the cause of Sawyer’s death.  I want there to be a medical answer – something I can protect the twins from ever getting.  I want to understand but I know it is very possible that will never happen.

In the meantime, the doctors want to continue to monitor the twins hearts while they are still growing.   Medical discoveries are being made every day.  Maybe one day the channelopathy (or whatever caused Sawyer’s death) will be found.

All I know for sure is that I will continue to love the twins and protect them the best that we can.  And their brothers will continue to live on in all of our hearts forever.

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Remembering

October 20, 2015 at 9:36 pm | Posted in after death?, Jake, Love, Sawyer | 6 Comments
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quote - thank you

For remembering Jake.

And many thanks for remembering Sawyer.

I am forever grateful to all who keep Jake’s and Sawyer’s memories alive.

Life goes on (as it should) but another one of the important lessons I have learned in the 10 years since Jake died is I am no longer the same person.  Some call it their new normal.  I do not think there is anything normal about outliving your child/children.

As a surviving parent I am left to make sense of the unexplainable.  Some say that we all have purposes in life which we fulfill throughout our lifetimes.  So does that mean that Jake and Sawyer just fulfilled their purpose very quickly and therefore they had very short lives?

I wonder what were their purposes?  Are Evan and I supposed to help or continue their purposes?  I may never know the answers to these questions but I do know that I want Jake and Sawyer to be remembered.

The other day there was a discussion in the back seat of our car about ages of the twins’ friends and their siblings.  One of their friends has a brother who was born in September of 2009.  Another friend has a little sister born in December of 2009.   After we had dropped off their friends, Evan and I talked to the twins about their little brother, Sawyer, who was born in November of 2009.

Remembering
By Elizabeth Dent

Go ahead and mention my child,
The one that died, you know.
Don’t worry about hurting me further
The depth of my pain doesn’t show.
I’m already crying inside.
The tears that I try to hide.
I’m hurting when you just keep silent.
Pretending he didn’t exist.
I’d rather you mention my child.
Knowing that he has been missed.
You ask me how I was doing.
I say “pretty good” or “fine”.
But the healing is something ongoing.
I feel it will take a lifetime.

 

 

what i have learned in the 10 years since Jake died

August 31, 2015 at 9:44 pm | Posted in Death, Grief, Jake, life after loss, Love, why I write | 11 Comments
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Dear Jake,
Another August has come and gone – the 10th August since you left this world.  I honestly was not sure that I would make it – 10 years seems like an eternity at times but I still find it so hard to believe that it has been that long since your dad and I last held you.

The first thing that I learned is that I will make it through the days, months and years without you.  I do not like it and it is excruciatingly hard.  But, your dad and I were not given a choice.  We are still alive.

I started writing this blog when you were gone for 5 years.  Five years also seemed impossible.  You would have started kindergarten and your brother Sawyer had died so unexpectedly 8 months earlier.   A therapist and a few friends suggested I try writing.  I thought why not – maybe I can help myself and possibly help others.

I think I had visions that one day I would change the name of the blog to something other than a mourning mom.  It turns out 5 years later I am still a mourning mom.  I have not found a cure for hydrops or premature birth.  In fact, we still do not even know what caused Sawyer’s death.  I have not started a non-profit or a race.  And, I still have days when I cannot stop crying because I miss you and your brother so much.

I wanted to write what I have learned in these 10 years living in this world without you.  I thought I could write one post to sum it all up but it is not quite that easy.  So, this my sweet Jake will just be part 1.   I will write to hopefully help others through their own journey.  And, even if I cannot help others I know that in another 5 years I will look back on these posts to help myself figure out how to survive the 10 year deathiversary of your baby brother.

Birthday Benches

August 20, 2015 at 11:36 pm | Posted in Grief, hydrops, Jake, life after loss, Love, NICU | 9 Comments
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Jake never left the hospital.  His short life was spent entirely in the NICU.  The only other places Evan and I went with him were the consult room and a small outdoor balcony off of the NICU.

The three of us

While helping with the special project of updating the consult room I heard that the balcony might need some new benches.  It seemed to make sense to me that for Jake’s 10th birthday we should get the benches for the balcony.  So that is what we did.  We miss you Jake.

quote - roses - Lincoln

Dear Jake

August 14, 2015 at 11:18 pm | Posted in life after loss, Love | 8 Comments
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Happy 10th birthday sweet boy.   Thank you for making me a mother.   I have tried really hard today to focus on how lucky we are to have had you in our lives even for such a short time.   The doctors and the statistics were not in favor of us spending any time on this earth together.  You beat the odds and you were born alive.   Then the doctors told us that you most likely would not live through the night – but again you proved them wrong.   You were such a brave and strong fighter.  Thank you for fighting so hard and for making Evan and me parents for the very first time.

I am trying to be brave and strong too but 10 years is an impossibly long time to live in this world without you.   I miss you today and always.  I hope that wherever you are you know how much you are loved and missed.

a special project

July 22, 2015 at 10:36 pm | Posted in Death, Grief, hospital, life after loss, Love, NICU | 12 Comments
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The “consult room” – every hospital has one or several.  The “consult room” is where Evan and I held Jake for the last time. It is where we were when the ER doctor told us that Sawyer was dead. They were different “consult rooms,” in different hospitals but they looked the same. Standard issue plastic couch and chair. Generic flowery art. Striped carpet.

No one wishes to be in these rooms.  The hospital where all 4 of our children were born has a Perinatal Bereavement Office where I volunteer at times.  The extraordinary people who work at the office decided that they were going to renovate the consult room in the Special Care Nursery of the NICU.   I was lucky enough to help with this special project.

One of Evan’s mother’s paintings is now on a wall of the newly decorated consult room.  On another wall there is painting by an artist who is the great-aunt of other parents who also used the room when their little girl, Lily, died.  Her parents helped with this special project too.

image

This is still a room that I hope none of you have to enter.  I know that realistically there are people who will be in that room holding their precious baby for perhaps the first and last time.  I wish that one day all babies will go home with their parents but until that day I am glad that there is now a warm comforting room where families can spend whatever time they have together.

Evan and I are truly honored by the dedication of this room and that this will be part of Jake and Sawyer’s legacy.

image

Fabulous Friday

June 26, 2015 at 4:44 pm | Posted in life after loss, Love | 3 Comments
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I am trying to stick to my spring resolution of looking for happiness.  It is not always easy but I did not have to look very far today because when I went to write this post this is what I saw on WordPress:

hurray

How fantastic is it that the Supreme Court ruled today to legalize gay marriage nationwide?! And it is great that WordPress is helping to celebrate the good news.

Other, more local, happy moments I found are the following:

  •  I am always joking that I wish I could wrap the twins up in bubble wrap to protect them from the world.  Well, the other weekend they wrapped themselves up. . .

Bubble Wrap

 

  • Did you know that there are shirts with built-in chest protectors?  I learned about them this week.  The twins went to baseball camp and came home asking for shirts to protect their hearts.  How could I not get them?

Heart Protectors

Hope that you all have a fabulous weekend!

our kids

May 20, 2015 at 10:18 pm | Posted in life after loss, Love | 3 Comments
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Over the years one of the twins has drawn different versions of our family portrait.  This is her latest creation that she drew a few weekends ago at the March of Dimes’ March for Babies.

March of Dimes 2015 - art

Her imagination of what Jake and Sawyer would look like makes me happy and so does she and her twin brother.

 

 

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