Kindness Campaign
July 20, 2013 at 10:18 pm | Posted in Jake, life lessons, Love, Sawyer | 1 CommentTags: baby loss, child loss, death of a baby, hope, kindness, life after loss, Mattie Stepanek, Method Baby Products, new not so normal, peace, thoughts, ways to honor the memory of your child
At the age of three, Mattie Stepanek started to write poetry to cope with the death of his older brother. Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy. A few of his books are Heartsongs and Hope Through Heartsongs. Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.
Mattie’s mother, Jeni, continues to spread Mattie’s message of peace and hope. Her strength and courage is remarkable. In honor of Mattie’s birthday (July 17th) and death day (June 22nd), Jeni has held Peace and Kindness Campaigns. Above is a slideshow of flyers used for the Kindness Campaign this summer.
Speaking of kindness, a gigantic thank you to Sara, my cousin. She wrote to Method after reading my last post. Method’s customer service could not find any useable soap but they wrote back a really nice response. Thank you again Sara!
Scent of Sawyer
July 14, 2013 at 1:02 pm | Posted in Grief, life lessons, Sawyer, venting | 9 CommentsTags: 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 CommentsTags: 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.
Balloons
July 2, 2013 at 11:32 pm | Posted in after death?, Jake, life after loss, Love, Sawyer | 6 CommentsTags: baby loss, balloons, child loss, death of a baby, family, heaven?, new not so normal, thoughts, twins
Whenever our daughter is given a balloon she wants to let it go and send it to Jake and Sawyer. The balloons are not always just for Jake and Sawyer. She also sends them to Evan’s mom (Mom Mom), my grandfather (Grandpoppy) and other members of our family who have died. I think it started with the balloon launch at the end of the Walk to Remember. However, it has continued after birthday parties and school celebrations. She usually wants to come home with the balloon and stand in the driveway.
Next, she will find the perfect place to release the balloon so that it does not get caught in the trees. Sometimes, she will try to attach a note to the balloon. Other times, she will say a few words or give a few kisses to send with the balloon.
When she has finally determined that the conditions for the balloon release are as good as they are going to get, she lets it go.
We watch it for as long as we can. She asks me if I really think that they will get her balloon. I always say, “yes.”
Tonight at bedtime the twins were discussing the balloons that she sends. They debated the obstacles the balloon could encounter – tree branches, the wind, the lack of wind, etc. What would happen when the one balloon finally arrived? Would Jake or Sawyer hold it?
I chimed in that it did not really matter who held it. They could all look at the balloon and know that we are thinking about them.
Traveling with the Twins
June 30, 2013 at 9:38 pm | Posted in Grief, Jake, life after loss, Sawyer | 6 CommentsTags: 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.
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 CommentsTags: 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 CommentsTags: 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.
Right Where I am: 7 years, 9 months, 2 weeks and 3 years, 5 months and 2 weeks
June 8, 2013 at 12:44 am | Posted in life after loss, Love | 10 CommentsTags: child loss, death of a baby, grief, new not so normal, perspective, thoughts
I am, once again, joining still life with circles for right where I am. Angie started this project 2 years ago. She asked other bereaved parents to write about where they are in their grief, kind of like “a map on the road of grief.”
I am right here, 7 years, 9 months, 2 weeks since Jake died. This week I have been working in the office I returned to after my “maternity” leave with Jake. I remember walking down the halls looking for places I could duck into so that others walking by me would not see my tears. This week there were no tears. Seven years ago, I would start my sentences unsure that I could follow my own thoughts long enough to complete them. This week I know I can finish my conversations without being overtaken by missing my baby boy. The memories of Jake are safely tucked away as I continue to live my life. It is exhausting.
I am also 3 years, 5 months and 2 weeks since Sawyer died. His unknown cause of death does not preoccupy my every waking moment but I am haunted by the emptiness. My inability to protect yet another son from death still makes me want to scream (perhaps not as loudly as in year one or two). I try to stay present and not let my mind wander to the 3-year-old boy who I will never know. I do not always succeed.
I do not think of the miscarriage. There is no point.
I try to live, hope and take care of my living children. However, there is another part of me who wants to be with all of her children.
I am right here.
Last Day of Kindergarten
May 22, 2013 at 10:56 pm | Posted in Jake, Love, Sawyer, twins | 9 CommentsTags: child loss, death of a baby, hope, kindergarten, last day, life after loss, new not so normal, parenthood, perspective, thoughts
Today was the last day of kindergarten for the twins. They have both been telling me for the last several weeks, “Mama, we are ready to go to 1st grade.” I am so very happy watching them grow up. This is what I want. The twins are alive and growing. So, why am I sad?
I know that I am not supposed to “grow” Jake and Sawyer up. There is no point in mourning the 7-year-old and the 3-year-old who I will never know. Logically, I know this is true. However, somehow between the end of the year parties, musicals, recitals and tournaments my mind finds time to imagine the little boy who should be sitting in my lap watching his older siblings. And, then my mind wanders to the proud older brother who should be sitting next to me watching his younger brother and sister.
There is no 3-year-old sitting in my lap. No 7-year-old next to me. However, I am here in the land of the living. Evan and I are watching the twins grow while remembering Jake and Sawyer. Life is bittersweet. Miraculous and Miserable.
Ready or not . . .
Happy Mother’s Day??
May 14, 2013 at 10:14 pm | Posted in Cemetery, Grief, Jake, life after loss, Love, Sawyer | 3 CommentsTags: 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?
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