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Scent of Sawyer

July 14, 2013 at 1:02 pm | Posted in Grief, life lessons, Sawyer, venting | 9 Comments
Tags: baby loss, death of a baby, gratitude, life after loss, Method Baby Products, new not so normal, Sad, Sawyer, scent, thoughts

One of the lessons that Jake and Sawyer have taught me is not to sweat the small stuff. In the grand scheme of things there is so much stuff that just does not matter in the end.

This post, however, is about small stuff. Method has discontinued their line of babies and kids products. I know that there is most likely a business reason why the line did not make it. However, I just wish they could bring the product line back. We have used their products (body wash, shampoo, lotion, laundry detergent and dryer sheets). We used a particular scent — rice milk and mallow — with Sawyer. We all loved the smell, and appreciated that they were natural products with nothing to harm Sawyer’s (or any of our) skin.

The smell of the products reminds me of Sawyer. So, after he died, we continued to use the products. The frequent and sweet reminder of him in the smell of our clothes or at the twins’ bath time is, in a way, comforting. Now the product line has been discontinued, and it is hard to find the products anywhere. I am sure that at some point, we won’t be able to find them at all anymore.

One more small bit of Sawyer that will no longer be in our lives. Yes, it is a small thing. But it is one more small thing I wish I could change.

And, a giant thank you to Evan for finding me some of the last of the bottles on eBay!

Perfect

July 8, 2013 at 10:44 pm | Posted in Grief, Jake, life lessons, Love | 5 Comments
Tags: child loss, death of a baby, Down syndrome, gratitude, hope, life after loss, new not so normal, perspective, thoughts, trisomy 21

In May of 2005, Evan and I had the nuchal screening of our first child. We were told that there was a 1 in 5 chance that our baby had trisomy 21, Down Syndrome. Friends told us their tales of false positives with the nuchal screening but after a follow-up test it turned out that we were the 1. The day that we got the results Evan had an awful migraine. He went to bed. I cried on the couch with our dogs.

I knew that I would continue the pregnancy. Evan was not so sure because he needed to know more about Down Syndrome. He questioned his ability to parent a child with disabilities.

We recently watched Perfect. Have you seen it? It is a segment on ESPN’s show E:60 about a father and his down syndrome daughter. Heath White, a successful runner and businessman, wanted perfection. Down Syndrome was not part of his plan. However, his daughter Paisley changed his mind and heart. He wanted to tell his story to the world. He became an advocate for Down Syndrome children. Heath decided to run with Paisley. He pushed her in a stroller for a total of 321 miles. The number is significant because Down Syndrome is an extra (a 3rd) copy of the 21st chromosome.

Heath White spoke about grieving once he found out Paisley’s diagnosis. Evan and I also grieved that day in May, 2005. Although, looking back now it was just a preview of all the tears to come. Perhaps all parents of Down Syndrome children grieve the loss of the “perfect” life they hoped for their child. However, Heath learned from Paisley the true meaning of “perfection”.

We never had the chance to raise our Down Syndrome child.

Traveling with the Twins

June 30, 2013 at 9:38 pm | Posted in Grief, Jake, life after loss, Sawyer | 6 Comments
Tags: child loss, death of a baby, grief, hope, life after loss, new not so normal, perspective, signs, thoughts, travel

Most of this month we have been away. The first few weeks were work trips mixed with family and friends. The last part of the month we were away for fun. I used to travel all the time. It is hard to travel with small children but if I am honest with myself there is another reason I like to stick close to home.

I do not like to be away from the cemetery. I know that Jake and Sawyer are not really there but I still feel a need to go there. If nothing else to make sure that all is ok. I no longer go to the cemetery every day but I do not like the idea that I am not able to visit. I felt better about being away for so long because I knew that others would be there to check on them.

The trips were all good. There were some meltdowns and a taxi ride where not one but BOTH of the twins got sick. The taxi driver pulled over each time and we paid for him to get his car cleaned. . . However, we had fun. It was good to see family and friends.

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I have written here and here that I do not know where exactly Jake and Sawyer are, except that they are in our hearts. No matter where we travel they come with us. There were times that the twins collected stones to bring to Jake and Sawyer. And, there were little signs that I like to believe Jake and Sawyer sent to us.

Family Medical Leave Act

June 18, 2013 at 4:44 pm | Posted in after death?, Grief, Jake, life after loss, Love, Sawyer | 4 Comments
Tags: child loss, death of a baby, Family Medical Leave Act (FMLA), life after loss, new not so normal, Parental Bereavement Act (Farley-Kluger Initiative), post traumatic stress disorder, thoughts

According to the US Department of Labor the Family Medical Leave Act of 1993 (FMLA):

“Entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Eligible employees are entitled to (among other things):

Twelve work weeks of leave in a 12-month period for:
- the birth of a child and to care for the newborn child within one year of birth;
- the placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement;
- to care for the employee’s spouse, child, or parent who has a serious health condition;
- a serious health condition that makes the employee unable to perform the essential functions of his or her job

The problem is once the family member dies there are often little or no benefits. When Jake died I had a c-section and could not return to work for 6 weeks. The ironic thing was that after he died all I wanted to do was go back to work because being on maternity leave with no baby was beyond awful for me. Evan’s work was extremely understanding and kind. He ended up missing about a month of work – the 2 weeks Jake was alive and then the 2 weeks after his death.

When Sawyer suddenly died Evan again missed 2 weeks of work. Again, we were very fortunate that his work was so understanding. I know that is not always the case. Dealing with the death of your child and the stress of an employer not giving you time off is too much for anyone.

Bereaved father, Kelly Farley, is taking action to fix this issue. He has created the Parental Bereavement Act (Farley-Kluger Initiative). It is a petition to modify the existing Family Medical Leave Act. The objective of Petition is the following:

“Modify existing FMLA to expand coverage and existing benefits to employees that have experienced the death of a child.”

If you would like to support this modification of the FMLA please click this link to sign the e-petition. I have already signed it!

Father’s Day

June 16, 2013 at 9:14 am | Posted in Grief, Jake, life after loss, Love, normal?, Sawyer | 7 Comments
Tags: child loss, death of a baby, father's day, Grieving Dad's Project, new not so normal, parenthood, perspective, thoughts

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? | 7 Comments
Tags: child loss, death of a baby, hope, Jake, life after loss, new not so normal, perspective, post traumatic stress disorder

“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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Happy Anniversary Evan!

May 28, 2013 at 9:58 pm | Posted in Anniversaries, Grief, life after loss, Love | 9 Comments
Tags: 10 year anniversary, child loss, death of a baby, family, hope, life after loss

Most of the anniversaries I write about are not really anniversaries at all. They are really Deathiversaries.

This past week Evan and I celebrated our 10th wedding anniversary.

In 10 years we have had 4 miraculous children. We have buried our oldest and our youngest sons. I am afraid to count how many other funerals we have attended.

The divorce statistics after the death of a child are debatable. Some say it is a very high number, others disagree. I am not sure which to believe and I do not think it matters. It is bittersweet. All marriages have difficult and stressful times (I think).

Our lives are not the “happily ever after” that I had imagined but

Happy Mother’s Day??

May 14, 2013 at 10:14 pm | Posted in Cemetery, Grief, Jake, life after loss, Love, Sawyer | 3 Comments
Tags: miscarriage, motherhood, new not so normal, premature birth, thoughts, twins, unexplainable, ways to honor the memory of your child

As I have already written, Mother’s Day is not my favorite day. I try to focus on the 4 positive pregnancy tests and the 4 live births. I also try not dwell on the 2 emergency c- sections, the NICU, the miscarriage and the 2 deaths. The truth is that all of these events have made me a mother.

I have gone to the cemetery the last seven Mother’s Days. I know that some people consider this morbid. For me it is my way of taking care of my children who are not physically with me. It gives my aching arms something to do (even if it is clipping grass and cleaning headstones). It brings me some peace.

This year I noticed something different. There was a sign at the entrance to the cemetery:

Maybe the cemetery has a new marketing person. Or, maybe I have missed the sign in past years. Either way, it just seems odd to have a Mother’s Day cook out at the cemetery. And, what would one do with a t-shirt from the cemetery?

Missing you on Mother’s Day

May 12, 2013 at 9:14 am | Posted in Grief, Jake, Love, Sawyer | 8 Comments
Tags: child loss, gratitude, grief, life after loss, mother's day, new not so normal, thoughts

Dear Jake and Sawyer,
There is not a day that I do not think of you both. I know that you are both miracles. I was lucky enough to hold you both even for just a moment. I am thankful for the time that I spent with you. I just wish there were more moments. My arms ache to hold you.

I miss you every day. Some days are just harder. Mother’s Day is one of those days. Although the logical part of me knows that this is just a hallmark holiday. The original creator, Anna Jarvis, herself was even disappointed by how commercialized the day had become.

May 5th was International Bereaved Mother’s Day. I have to confess I try not to think about these days. It is not too hard to do in May. Especially now that your brother and sister are in kindergarten. The end of the year seems to bring extra activities that make it even easier to forget about the date.

I love you both to the moon and back. I will look for you in my dreams.

I know that this day is hard for so many. There are the other mothers in the club whose arms will also ache to hold their children. There are others who are missing their mothers and grandmothers. I send hope and hugs to you all.