The End of the School Year & Everything in Between

May 20, 2014 at 10:00 pm | Posted in Grief, Jake, life lessons, normal?, Sawyer, twins | 4 Comments
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This Friday is the last day of school for the twins!  It does not seem that long ago that they started 1st grade.  I try to enjoy the moments with the twins.  Moments I know that I will never have with Jake or Sawyer.  The Mother’s Day teas, the musical performances, the recitals, field days and the end of school year parties.  However, I find myself in a panic this time of year.  There is so much happening – all at the exact same time.

“Did I forget to dress them in the right color for their musical?”

“Did we remember to bring in the teacher appreciation card?”

“Did we make the teacher appreciation card?”

“How did we forget her glasses again this morning?”

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I feel guilty about not enjoying ever single moment (all the ones that I will miss with Jake and Sawyer).  I want the twins to be healthy, happy and grow up.

This week I looked around at some of the other parents – I saw the dazed looks on their faces.  They are all in this end of the school year craziness too.  I am not sure they are enjoying all of this end of the school year madness either.  I want to appreciate all the moments I have with the twins.   I think I will  have to expand my definition of appreciation to include the happy, the sad, the chaotic and everything in between.

quote - keep-calm-school-is-almost-over




Hope and Hair

March 28, 2014 at 4:58 pm | Posted in Love, normal? | 11 Comments
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As of today one of the twins and I have officially donated enough hair to Pantene Beautiful Lengths to make one wig for a cancer patient.  It takes 6 donations to make a wig (I have donated 4 times and she cut her hair today for her 2nd donation!).

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Hope that you all have a great weekend.


February 14, 2014 at 10:54 pm | Posted in Death, Grief, life after loss, normal?, Sawyer, twins | 5 Comments
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“Everything is Awesome” has replaced “Let it Go” and “Do You Want to Build a Snowman“at our house.  The snow and ice are gone.  We were really lucky and never lost power.  However, we did follow the advice of the robocall from our mayor and stay home.   The twins watched I am not sure how many hours of television but I know it was a lot.  It does not bother me the way I thought it would (before being a parent when I had all these big ideas about what kind of parent I would be. . .).  Originally, I was going to be one of those parents that did not let their kids watch too much TV but Sawyer’s death quickly changed that.  It seemed much better for the twins to watch Elmo than to watch their mom crying endlessly.  So, on went the TV.

We did make it out of the house yesterday for some sledding.

Today it was almost 60 degrees in Atlanta.   Everything melted, we turned off the TV and went outside.

Happy Valentines Day from our house to yours!

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I’m Scared (repost from my amazing cousin’s blog)

February 4, 2014 at 6:42 pm | Posted in Grief, life lessons, Love, normal? | 5 Comments
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I would like to introduce you all to my amazing younger cousin. She is my hero.

plugging along

This is my life. It’s all that I know. Friends have said they think I’m so brave for just living my life, when I’m just living my life the best I can… just as they are.

The truth is I’m scared.

When I initially decided to start a blog, I intended to make it humorous by discussing the more amusing aspects of my life than the dark ones, but sometimes all I see is darkness. I can’t take a single step without being scared that I will tumble and smash my teeth into the floor. I sometimes feel like I’m spiraling downhill with no end in sight.

I have FSH Muscular Dystrophy, and I’m just scared.

“Courage is being scared to death, but saddling up anyway.”

 John Wayne

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Control & Clean Clothes

September 26, 2013 at 9:53 am | Posted in life lessons, Love, normal?, venting | 6 Comments
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I wish life could be a bit more like laundry.  You put the dirty clothes in the washing machine, add detergent and wait.  After the clothes are clean put them into the dryer.  Wait.  Fold.

Okay, it is not always so seamless.  I have turned a few white loads pink.   I will also confess that I have washed more than one diaper.  It is pretty messy.  However, after shaking out the clothes and repeating the wash and dry cycles everything was once again clean.

Before 2005 there were plenty of situations out of my control but Jake’s diagnosis put them all into perspective for me.  I did what I thought were the right steps.  I gave birth to Jake at 26 weeks anyway.  He lived for 2 weeks but I could not do a thing to prevent his death.

At the time I thought that I could protect any potential future children if they were not premature.  I could be in control if I could just keep them out of the NICU.  Sawyer’s death let me know loud and clear that I was wrong about that too.

Lately, life seems more out of control than I would like.  I just need to realize that is all part of life and hold on.

I think I will go switch the laundry into the dryer.


The King & Queen of July’s Birthday (with a side of bittersweet)

July 30, 2013 at 10:08 pm | Posted in Grief, Jake, normal?, twins | 4 Comments
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A few years ago (not long after they learned to speak) the twins announced that they are the King and Queen of July.  It is after all, their birthday month and we (me and Evan) should never forget to plan accordingly.  The twins did have a fun birthday.  I can not say that they were overjoyed the whole month.  I distinctly remember being told I was “making it the worst July ever” on a few occasions after I asked them to clean up their toys, brush their teeth or take a bath. . .

I am forever grateful for our amazing twins.  I am so lucky that I am their mom and getting the chance to raise them.  Happy, happy birthday to the King and Queen of July!

The bittersweet part of the twins’ birthday was that this year Jake’s yahrzeit fell on the same day.  A Yahrzeit is the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar.  We lit a Yahrzeit candle.  We said the mourner’s kaddish.  I tried my best not to think about the almost 8-year-old big brother who should have been running around the birthday party.  I am so very lucky to be Jake’s mom too.


July 26, 2013 at 9:56 am | Posted in Grief, normal?, Sawyer, twins | 6 Comments
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This week the twins had their check up with the pediatric cardiologist.  They were both rock stars during the EKG.   They both have innocent heart murmurs but otherwise, everything is fine.   Their hearts are normal.  We will continue regular activity and come back for our next check up.

These are the results that I want to hear.  I want both the twins to be healthy and happy.  I try so hard to stifle voice that wants to scream, “But, Sawyer was healthy and happy too, until he wasn’t and then he was dead!!”  I know that I cannot wrap the twins up in bubble wrap.

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The fact that we still do not know why Sawyer died is something I do not let myself think about very often.  I have to tuck it away so that it does not consume me.  However, during the twin’s cardiologist appointment we need to talk about it.  The doctor asked me if there were any updates from the Mayo clinic.  No, no updates.  We still know that Sawyer had a coarctation of his aorta but it was not narrow enough to cause his death.

I know that there is a very good chance that we will never know the cause of Sawyer’s death.  I have accepted this fact but I still do not like it at all.

Where is Sawyer

Father’s Day

June 16, 2013 at 9:14 am | Posted in Grief, Jake, life after loss, Love, normal?, Sawyer | 7 Comments
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Several years ago I adapted this poem (A Mother’s Day Wish From Heaven) by  Jody Seilheimer, for Father’s Day.  This year I came across another (more accurate, I think) poem for a bereaved father.  It was sent to Kelly Farley, creator of a Grieving Dad’s Project, from Grief haven.

Dear Mr. Hallmark ….. One More Time

Hello there Mr. Hallmark man,

I wrote to you in May

To ask that words of love be shared

With my mom on Mother’s Day.

Just as there is no card for Mom

To let her know I care,

There is no card for my dad, too,

And I have so much to share.

It’s very hard for my loving dad

To know that I’m okay.

To protect me was his job, he feels,

So he thinks he failed some way.

Although I had to leave this world,

While still considered young,

There is no way he ever failed—

There’s no more he could have done.

My dad he tends to question

Those things he cannot see.

I always send him little signs

To say, “Hey, Dad, it’s me!”

I hear him crying in the car,

The shower hides his tears.

He feels he has to be so strong

For those he holds so dear.

My dad he often gets so mad

At what became of me.

He wants so much to understand,

He says, “How could this be?”

I somehow need to let him know,

Though impossible it seems—

For him to live and laugh again

Will fulfill so many dreams.

The card I need to send right now

To a dad as great as mine,

Will thank him for the love he gave

Throughout my brief lifetime.

He’s still the one that I call Dad,

Our bond’s forever strong,

‘Cuz even though he can’t see me,

Our love lives on and on.

Please help me find a way

To tell my dad that when

It comes his time to leave the earth

I’ll be waiting there for him.

And also, Mr. Hallmark man,

Please help him to believe,

That nothing will ever change the fact

That my dad he’ll always be.

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Hasta Luego House and Hair

June 2, 2013 at 11:48 am | Posted in Grief, life after loss, Love, normal? | 6 Comments
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“How would this do: and they all settled down and lived together
happily ever after?’
‘It will do well, if it ever comes to that,’ said Frodo.
‘Ah!’ said Sam. ‘And where will they live? That’s what I often wonder.”
― J.R.R. Tolkien, The Fellowship of the Ring

I wrote about our old house in this post.  We had been renting it since we moved in 2007.  It was not the plan to rent it all this time but as my grandfather used to say “people make plans and G-d laughs.”  And, there was the real estate market crashing. . .

Last week we sold the house.  Before the closing I went in to walk around.  I stood in what was supposed to be Jake’s room.  The once baby blue walls are now whitish.  The room was empty.   No tears filled my eyes as I entered.  Jake was not there.  I did not really think that he would be – I know that he is with me where ever I go.  The address does not matter.

Completely unrelated (except for the fact that it also happened last week), I donated my hair for the 4th time to Pantene’s Beautiful Lengths.  So far, “Pantene has donated 24,000 free real-hair wigs” to cancer patients throughout the country.  It takes 6 donations to make 1 wig.  So, I have officially donated 2/3 of 1 wig.

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The Other Side

April 26, 2013 at 7:44 am | Posted in after death?, Grief, Jake, Love, normal?, Sawyer | 4 Comments
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One day a young Buddhist on his journey home came to the banks of a wide river. Staring hopelessly at the great obstacle in front of him, he pondered for hours on just how to cross such a wide barrier.

Just as he was about to give up his pursuit to continue his journey, he saw a great teacher on the other side of the river. The young Buddhist yells over to the teacher, “Oh wise one, can you tell me how to get to the other side of this river”?

The teacher ponders for a moment looks up and down the river and yells back, “My son, you are on the other side”.

I have been and might always be on a journey to find the cause of Sawyer’s death.  I have wanted to be in a place where all of my children are living.  Not stuck between my two worlds.

I cannot do anything to bring back Jake or Sawyer.  I am here.  On the other side.  However,  maybe just maybe I can help spare other parents the heartbreak of having to live in a world without their child/children.  So, as we have done every year since Jake died, our family will walk in the March of Dimes, March for Babies this Saturday.

Thank you to all those who supported our team this year and in past years.    We appreciate all of your amazing kindness and generosity.   If you would like to support Jake’s Journey & Sawyer’s Strides please click this link.

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