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.
Life
March 24, 2013 at 12:14 am | Posted in Grief, life lessons, Love, normal? | 4 CommentsTags: child loss, life after loss, new not so normal, perspective, quotes, thoughts
Rancic, Relationships and Reality
March 2, 2013 at 11:28 pm | Posted in Grief, life lessons | 7 CommentsTags: child loss, death of a baby, Giuliana Rancic, Jake, marriage, parenthood, Sawyer, thoughts
In a recent interview Giuliana Rancic told US Weekly “We’re husband and wife, but we’re also best friends, and it’s funny because a lot of people, when they have kids, they put the baby first, and the marriage second.” Giuliana and her husband Bill went through infertility treatments for years. She battled breast cancer. In 2012 they had their son, Edward, with the help of a surrogate.
The Rancics have had a tough road to parenthood. I do not judge other parents and their decisions. I believe the balance of marriage and parenthood is difficult. I understand both sides of the debate which Giuliana’s comments created but I have a confession.
The night that Jake died and the night that Sawyer died I bargained with G-d. I pleaded that it should be me and not them. I offered to trade my life for theirs. I also offered Evan’s life. I would have switched places with my children without hesitation or any consideration of our marriage. I think that Evan would have as well.
The pleading and bargaining did not work. Evan and I are still here. Sawyer and Jake are not.
Silent and Stuck
February 18, 2013 at 10:30 pm | Posted in Anniversaries, Grief, Jake, life lessons, Sawyer, why I write | 13 CommentsTags: child loss, dark days, death of a baby, holidays are hard, life after loss, moving forward, new not so normal, perspective
Sawyer was born right before Thanksgiving and died Christmas night. So, since he died the holidays have been especially hard. If I am honest with myself the holidays have been excruciatingly difficult since Jake died. Pretty much November, December and most of August (the anniversaries of Jake’s birth and death) are not my favorite times of year.
Life is a roller coaster. I definitely got that message. On a roller coaster there are usually some ups after the downs. However, this year after the anniversary of Sawyer’s death there was no up. My grandfather died. My cousin’s partner lost her battle to breast cancer. Funeral. Shiva. Unveiling. Family drama.
Evan is fine now but had a few health issues that once again shook me to my core. I have been stuck. There might not be an up in sight but I have to keep moving forward.
Dinner Conversations & Divorce
January 30, 2013 at 10:52 pm | Posted in after death?, Grief, life lessons, normal? | 7 CommentsTags: after death?, child loss, death, death of a baby, divorce, grandparents, Jake, new not so normal, perspective, Sawyer, twins, unexplainable
At dinner the other night the twins started to discuss the fact that some of their classmates live with only one of their parents. Evan and I tried to explain that sometimes parents do not always live in the same house. This did not get us very far.
The twins responded in unison, “Why???”
“Why would a child’s parents not live in the same house.”
Good question. Okay, I tried another angle.
I responded, “You know that daddy’s parents did not live in the same house? Remember we visit Mom Mom and Pop Pop’s house and Grandmom and Grandpop’s house?”
Quizzical looks from both of them let me know that they were processing this information. After a moment, he looked at me and said, “Well now that Mom Mom is dead does she live with Grandpop?”
Evan and I looked at each other. Neither of us had a response to give to our son. Luckily, his sister answered. “No silly! Mom Mom lives with Sawyer, Jake and Grandpoppy!”
Maybe
January 24, 2013 at 11:48 pm | Posted in after death?, Grief, life lessons, normal? | 5 CommentsTags: baby loss, Buddha, child loss, death of a baby, grief, hope, life after loss, new not so normal, perspective, Sawyer, twins, unexplainable
Maybe (Taoist story)
There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. “Such bad luck,” they said sympathetically.
“Maybe,” the farmer replied. The next morning the horse returned, bringing with it 3 other wild horses. “How wonderful,” the neighbors exclaimed.
“Maybe,” replied the old man. The next day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune. “Maybe,” answered the farmer. The day after, military officials came to the village to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out. “Maybe,” said the farmer.
After Sawyer died, one of Evan’s friends came over to see us. Those days were such a blur that I do not remember his exact words but I will try to give you the basic gist. He explained that sometimes things happen and we do not see or understand why at the time. We may never understand why but the fact that Sawyer died could influence someone or something in the future.
I, of course, responded that I will never understand why.
He went on to say that some events need to be looked at in different ways.
I again responded that I have examined and reexamined every angle of Sawyer’s death and could not find anything except for earth shattering pain, emptiness and never ending darkness.
However, he continued to make his point in a way that I could actually accept. He gave the example that when the twins grow up that their experience of Sawyer dying could impact them beyond my initial thoughts of how they would grow up without their baby brother. They could be perhaps go on to discover a cure for whatever caused Sawyer’s death. In that moment I grasped the fact that something good could possibly result from Sawyer dying. Maybe, just maybe.
The Circle of Life
January 2, 2013 at 4:44 pm | Posted in Grief, life lessons, Love, mourning | 14 CommentsTags: centenarians, child loss, grandparents, grief, holidays, hospice, life after loss, new not so normal
I always knew that I would outlive my grandfather. It is the way that life is supposed to go. I made peace with my feelings about death in 2005. After Jake died, defying the circle of life, I quickly came to terms with my own mortality. I am not going to do anything to speed it up but I know I will die one day. And, I knew the day would come when my grandfather would die. No one lives forever.
He died yesterday. I know that he was 100 and lived a (mostly) beautiful life but the last part of it was so excruciatingly painful for him. I would have given anything to spare him the suffering he endured.
I am so very lucky that I was able to spend so much time with him. The twins got to know him. I believe they will have memories of their wonderful great grandfather.
I am hoping and praying that he is now resting in peace with my grandmother. And maybe, just maybe he will meet and play with his other 2 great grandchildren .
No words
December 18, 2012 at 11:44 pm | Posted in Grief, life lessons, Love, mourning | 6 CommentsTags: child loss, dark days, family, Gandhi, Newtown, post traumatic stress disorder, tragedy, unexplainable
Every morning since Friday I have woken up hoping that the senseless deaths in Newtown were a horrific nightmare. After Jake’s and Sawyer’s deaths I had similar experiences. The moments before I was fully awake everything seemed alright in the world. And then an instant later it shattered. Reality. And, the world seems as if it is forever broken.
There are so many families left behind. New members of the club. Filled with endless questions. Why? How? Guns? G-d? There are no answers that will bring them back. The 20 children will never grow up. The families will be missing pieces for eternity.
I so wish I had the right words but since I do not, I will again borrow wisdom from Gandhi.
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