what to do when reality bites

May 4, 2017 at 8:18 pm | Posted in Grief, silver lining | 4 Comments
Tags: , , , , , , ,

Here is my reality – I will never be able to bring Sawyer and Jake back to life.  I will never hold Sawyer again.

I will never hold Jake again.

I cannot change my reality but I can help others.   I will do anything and everything I can to prevent other children from dying too soon.  I do not want any other families to have to live in a world without their child/children.

This weekend what I will do to try to help is walk. Thank you to all those who supported our March of Dimes, March for Babies team this year and in past years. Thank you also to the hospital for matching funds.  We appreciate all of your kindness and generosity.   If you would like to support Jake’s Journey & Sawyer’s Strides please click this link.

 

 

Research & Rainbows

July 22, 2016 at 4:44 pm | Posted in Grief, Jake, Sawyer, silver lining | 2 Comments
Tags: , , , , , , ,

Evan and I have spent the past few days at the March of Dimes national conference. We met amazing people and other family teams from all over the country committed to the cause of healthy babies.  We heard doctors speak about the research that is being done to lower the alarming rate of infant mortality.

Every year 23,000 babies in the United States of America do not live to celebrate their first birthday due to prematurity alone (this number does not include still born babies or babies who die due to known or still unknown birth defects and genetic conditions).

Jake and Sawyer will forever be a statistic of infant mortality from the years 2005 and 2009. I cannot change those facts.

I can commit to doing whatever I can to help reduce those 23,000 deaths of babies born too soon. I do not want any other families to stand by/watch their child/children take their last breath.

In one discussion at the conference, the topic of “Rainbow Babies” – babies born to families after the prior death or stillborn birth of a child – came up. I am so thankful to the March of Dimes’ doctors, researchers and volunteers.  Without all of their hard work ours and many other families’ rainbow babies may not be here.

As I have written about before, the twins and I are always searching for rainbows.  We have not had a rainbow baby after Sawyer (he was a rainbow himself, of course), but perhaps our rainbow is a part of lots of other little babies we are helping through the March of Dimes.

Somewhere Over the Rainbow

The way I see it, if you want the rainbow, you gotta put up with the rain.  – Dolly Parton

A “rainbow baby” is a baby born following the death of your child.  Urban Dictionary defines a rainbow baby as the following:

“In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison.

The storm (pregnancy/child loss) has already happened and nothing can change that experience. Storm clouds might still be overhead as the family continues to cope with the loss, but something colorful and bright has emerged from the darkness and misery.”

After Jake died Evan and I both knew that we wanted to try to become parents again.  I mistakenly thought that after your child dies you should get some sort of “get a baby free pass”.  There was no pass for us.  When we did start trying again we found ourselves on the roller coaster of infertility.  We started with cycles of injectables.  We moved onto 6 rounds of IUI’s (think turkey baster if you are not familiar with this term).  Finally after 2 IVF cycles we were so very lucky to have our own rainbow babies in July of 2007.

In the fall of 2009 we once again had a rainbow baby.

Who knew another storm would come so soon?  I am trying to learn from the twins how to look for rainbows everywhere.  Some days it is harder than others to find any light through the darkness.  The twins are pretty good teachers because the other day I looked out of the office building where I was working and this is what I saw. . .

After a hurricane comes a rainbow – Katy Perry

 

 

the best bad news ever

March 14, 2016 at 11:49 pm | Posted in life, life lessons, silver lining | 5 Comments
Tags: , , , ,

About a month ago, we had a sewage problem at our house.  I will spare you the gross details but the result was that our downstairs bathroom needed to be ripped out.

This slideshow requires JavaScript.

It was determined that the problem was a pipe in our street.  The City of Atlanta workers came to repair the pipe.   It took a few days.  At the end of the first day I received a call from one of the workers.  He told me he had good news and bad news for me.  The good news was that they could fix the pipe!  I braced myself for the bad news. . .

He told me that when they were trying to determine the problem that one of the city trucks hit our mailbox.  I waited a moment.  Then I asked,  “Is there more bad news?” He said no, it was just the mailbox.  I smiled and happily thanked him for the best bad news ever!  My standards of what qualifies as bad news has greatly changed since 2005. While a ripped up bathroom and a broken mailbox are not ideal, if that is the worst news I will gladly take it.

September

October 6, 2014 at 10:58 pm | Posted in after death?, silver lining | 7 Comments
Tags: , , ,

September is childhood cancer awareness month.  I know that it is now October but I had ordered these Spicy Monkey Spirithoods last month.  These amazing hats were inspired by Maya Thompson’s son Ronan.  He wore a spirithood after he had lost his hair during chemotherapy.  At the age of 3 Ronan lost his battle to cancer.  Before he died, Maya promised him she would keep on fighting.  And, she has been waging war on childhood cancer ever since.

The company Spirithoods is donating 100% of profit from the SpicyMonkey to the The Ronan Thompson foundation to help in their fight against childhood cancer.  The spirithoods  have places to keep hands warm (so it is a hat and mittens!). There are also super secret pockets to hide things in.

I was not the only one in our house who was so excited when the box of Spirithoods finally arrived. . .

This slideshow requires JavaScript.

Spreading Awareness

October 6, 2013 at 9:14 pm | Posted in life, Love, silver lining, why I write | 9 Comments
Tags: , , , , , , , , ,

This past weekend, I walked in one day of the Atlanta 2-Day Walk for Breast Cancer and in the Atlanta Walk to Remember.

In addition to walking, Evan has been talking as well.  Last week he went to Capitol Hill with a group from the March of Dimes.  They spoke to members of Congress about the importance of newborn screening and funding prematurity studies.

This week, Evan spoke at the Atlanta Walk to Remember.  Below is his speech:

“Dad and Father”

I am the father of four children,
but I am “Dad” to only two kids.

Our six-year-old twins call me “Dad” or “Daddy”
– or sometimes other silly things, or things I won’t mention here.

Our first child, Jake, never left the hospital
and lived only 2 weeks.
He was born 14 weeks early
and with other ultimately unsolvable medical complications.

Our fourth child, Sawyer, was born happy and healthy
and came home with us.
But six weeks later, with no warning,
and for no reason that has yet been fully figured out,
his heart stopped working.

Neither Jake nor Sawyer ever got to call me anything.

My family and I grieve the deaths and loss of our boys,
as you all grieve the loss of your children and little loved-ones.

As their father, I grieve the loss of Jake and Sawyer’s childhoods,
the big moments that they were supposed to have but never will.
I grieve the loss of their chance to grow up, to flourish,
to become teenagers, young men, husbands and “Dads” themselves.
I grieve the lost ball games and trips and adventures we’ll never have.
I grieve all the missed hugs and high-fives.
I grieve even the cranky wake-ups and bedtime fits we know so well from our twins,
but never got to experience with Jake or Sawyer.

I grieve all the truly heart-warming bedtime snuggles
that will never happen with Jake or Sawyer.
Beyond all those missed tender moments,
I also grieve the loss of my belief that horrible things won’t happen to me or my loved ones.
I am all too aware now that they can happen to anyone – as they have happened to all of us.

It’s all I can do most of the time
to just hope nothing like losing Jake and Sawyer ever happens again.
As a father, I also grieve the loss of my once unshakable belief
that I could always protect my wife Lanie and all our children
from such terrible pain and anguish; that I can “fix” their problems;
that I can always make everything all better.

I know that I cannot make Jake or Sawyer all better or bring them back.
I’m not sure that grief is something a father can ever overcome.
Of course, I have learned that you do not overcome or get past grief.
You just go through it.
I hate that my family has to go through it too,
but thank heavens I have an incredible wife and wonderful kids
to travel along with me as I go down that path.

So I guess I will always grieve the loss of never being called “Dad” –
not even once – by Jake or Sawyer.

But that doesn’t mean I am not their father.
I am and always will be a proud father of all my kids,
no matter what they call me
or what they were never able to call me.

And, I am so very proud of Jake, Sawyer and the twins’ dad and father.

This slideshow requires JavaScript.

Tips for NICU Parents

January 12, 2013 at 10:52 pm | Posted in Grief, hospital, NICU, normal?, silver lining | 11 Comments
Tags: , , , , , ,

This past week I, along with 2 other mothers, spoke to a group of nurses as part of their bereavement training. The nurses all work at Northside, the hospital where we had all 4 of our children.

This is the 3rd time I have been on the parent panel as part of this course.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital and help the nurses to better understand the needs of the families.  I listened to the other women recount their bittersweet experiences. I spoke about mine.

Along with helping the nurses understand the parent’s perspective, we also spoke about ideas for families with babies in the NICU.  The other 2 mothers had several suggestions that Evan and I had not thought of while Jake was in the NICU.  No one knows ahead of time that they will be a NICU parent.  And, NICU parents do not usually have time to google suggestions for being a parent to a very premature baby.  However, I am going to share this list just in case you or someone you know finds themselves with a child in the NICU.

  1. Take pictures.  Use your phone, a disposable camera or whatever kind of camera is available to you.  I am so thankful that the nurses encouraged us to take pictures.
  2. Video tape.   If it is allowed make video tapes of your baby.  I wish Evan and I had video of Jake.
  3. Pen and journal.  Ask the nurses to write something down about your baby during their shift.
  4. Small stuffed animals.  Carry them around so they pick up your scent.  Place them in your babies’ isolette.
  5. Memory metal.  Use the metal to make a finger or foot print of your baby.
  6. Scrapbook.  The hospital gave us everything that touched Jake’s body.  Evan and I keep all of Jake’s things.  We have been working on a special cabinet to keep it all together but it would be great if we could put together a scrapbook as well.

Some hospitals have organizations to help and support NICU parents.  The group at Northside is called Parents Partnered for Preemies.  Do you have any other ideas to add to this list?

Jake's stuffed animals

Jake’s stuffed animals

Storms & Seasons Greetings

December 12, 2012 at 12:12 pm | Posted in Grief, life lessons, normal?, silver lining | 10 Comments
Tags: , , , , , , ,

storm

The dark days of December are always accompanied by holiday parties and cheer.  The people of planet earth should be celebrating and happy because as it has already been established not everyone lives on planet my baby died. Last weekend I was visiting planet earth when Evan and I attended his work holiday party.  For the most part we fit right in.  Three different people asked “how many children do you have?”  My response to 2 of them was “we have twins at home.”

I was speaking to a woman who I knew had lost a daughter.  I did not know how or if I would bring it up but then she asked the question.  I told her about all 4 of our children.  I told her about Jake and Sawyer.  She told me about her daughter who had died in 1999.

She shared with me that the month of her daughter’s death is still hard for her.  I am truly sad that it is difficult but her honesty helped me.  The 3 years since Sawyer died seem so long ago in some respects but in others it really does not.  There is no plan to get over or through grief.  It is a journey.  I know exactly when the storms began but I am not sure if they will ever end.

Remembering Miracles

November 16, 2012 at 10:02 am | Posted in Grief, life lessons, normal?, silver lining | 3 Comments
Tags: , , , , , , , , ,

Thank you Samantha Murphy for remembering Jake and Sawyer.  Samantha recently started writing, Remembering Miracles.  She writes to ” keep the memories alive of the children who are now walking as angels in Heaven.”  Her blog is “to honor them, and to share their stories, so that they will live on forever, and never be forgotten. But although they are no longer physically here, their spirits live on, and will never fade as they continue to fight for their cause. So come on. Join the fights. Join the remembrance. What have you got to lose?”

I am honored that she wrote about Sawyer.   Remember Sawyer.

And, she wrote about Jake.  Remember Jake.

Samantha you are so very kind, thoughtful and wise beyond your years.  Thank you again for not letting the memories fade.

100!

August 30, 2012 at 9:10 pm | Posted in life, Love, silver lining, Time | 10 Comments
Tags: , , , , , , , , , , ,

If things get better with age, then you are approaching magnificent. –Unknown

August is filled with happy and sad days for me but it always ends with the birthday of my amazing grandfather.  He is 100! today!! In my opinion he has not only approached magnificent but passed it by long ago.  I am so very lucky to have him in my life.

I submitted the birthday application to have the chance for Williard Scott to wish him a Happy Birthday on the Today Show.  Apparently there are a lot of centenarians these days and Williard Scott did not wish him a happy birthday.  So, I will . . .

HAPPY BIRTHDAY!!

Birthday Wishes

July 30, 2012 at 9:50 pm | Posted in Grief, life lessons, Love, silver lining, twins, why I write | 9 Comments
Tags: , , ,

Happy Birthday!

As I wrote last year on your 4th birthday I am so very thankful for you two.   I am sorry that I did not take you to see your brothers on your birthday.  I just could not this weekend.  I promise that I will very soon.  Then I will take you out for ice cream (thank you Daphne for the brilliant suggestion).

I wish that you had a chance to know your brothers.  I wish that I did not have to explain death to you at such an early age.  I wish that some of your first sentences did not include “don’t cry mama.”

I wish I could find a picture of you from your 3rd birthday.  I will confess to you now that we almost did not have a party for you that year.  After Sawyer died the thought of planning a party was so daunting.  We realized that you no matter how sad we were you 2 deserve happiness (and a birthday party).  We did plan it and if I remember correctly we sent out the invitation the week before.  You both had a great time.  I just wish that 2010 was not such a blur of grief.

I wish that I could have protected you from my dark days.  I wish that you will always know how much sunshine you both bring to me.

I wish that you will continue to look for rainbows where ever you both go and that I can go with you.  And hug you both tightly.  Love you both to the moon and back.

Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.