One Day at a Time
August 18, 2013 at 10:22 pm | Posted in Grief, Jake, life after loss, Love | 3 CommentsTags: baby loss, birthday, dark days, death of a baby, hope, Jake, life after loss, new not so normal, perspective, thoughts
Thank you so much for the thoughts and prayers for us and Jake on his birthday.
We are continuing to ride on the August roller coaster of happy and sad days. This weekend had a happy day. Evan‘s birthday. I remember in 2005, Jake was a few days old and I was still in the hospital. The only thing Evan got for his birthday that year was a shower. Life is no longer minute to minute like it was in 2005. However, even today if I think too much about Jake’s birth day and death day, it seems like August is so very dark.
I remind myself not to imagine the 8-year-old Jake. There is no point in grieving over the little boy who never was but somehow I can not stop myself at times. I catch my mind as it wanders to what color his eyes would have been. . .
I remind myself to take it day by day.
Jake
August 14, 2013 at 12:14 am | Posted in Grief, Jake, life lessons, Love | 13 CommentsTags: baby loss, birthday, child loss, death of a baby, Jake, life after loss, new not so normal, parenthood, premature birth, thoughts
Dear Jake,
Today you would/should have been 8. You are not. I am still so very thankful that I got to meet you. I just wish we could have kept you for longer. Below are the words that your dad wrote to you 8 years ago. They are just as true today.
We love you Jake.
You are our sunshine.
You are such a courageous and strong fighter, and we are so proud of you.
Jake, you are a miracle, and we thank you for choosing us to be your parents.
You are so wise for someone so young and so small. You knew when you had to come into this world Jake, and you knew when you had to leave us to be in a better place.
You are and were the perfect son for us.
Jake, please know that we felt all the love you gave to us during your time here.
We are sad that we could only spend such a short time with you, but we are so glad and thankful for every minute of it.
It is amazing how we could come to love you so immediately and so completely even though we were just getting to know each other.
Then again, we feel like we have known you all of our lives, and you will be in our hearts forever and beyond.
Jake, we also know that you are at peace and that you are being watched over by all of our loved ones who also watch over all of us from above.
Thank you, Jake.
Thank you for coming to us.
Thank you for choosing us.
Thank you for loving us and letting us love you with all of our hearts.
We’ll see you every night playing up with the moon and the stars.
I miss you every. single. day. Some days are harder than others. I love you.
Back to School Blur
August 8, 2013 at 9:18 pm | Posted in Jake, Love, Sawyer, twins | 9 CommentsTags: 1st grade, after death?, back to school, child loss, death of a baby, life after loss, love, new not so normal, parenthood, perspective, reality, thoughts, time
It just does not seem that long ago that I could fit both the twins in a laundry basket. How is it possible that they are now in 1st grade! ? Time is so tricky and now these 2 would never fit in a laundry basket:
It is what is supposed to happen, they should grow up. I know all too well that it is a parent’s worst nightmare when their child/children are no longer growing. As I wrote here, I am still trying not to “grow” up Jake and Sawyer in my mind. I know that there is no point of grieving over every stage and milestone that they will never reach. Some days it works better than others.
August, Already?
August 6, 2013 at 8:42 pm | Posted in Grief, Jake, Love, Sawyer | 5 CommentsTags: 1st grade, back to school, child loss, death of a baby, gratitude, grief, life after loss, new not so normal, perspective, thoughts
It is August again. This month is filled with happy days and harder days. Lots of family birthdays and anniversaries are in August as well as Jake’s birth and death days. This year there will be one less happy day. I had always looked forward to my grandfather‘s birthday at the end of the month. I knew he would not live forever but I still miss him.
I will take August like I do every day – day by day. I have made it through many Augusts without Jake and I will make it through this one as well.
“You don’t get over it, you just get through it. You don’t get by it, because you can’t get around it. It doesn’t ‘get better’; it just gets different. Everyday… Grief puts on a new face….”
― Wendy Feireisen
This year is also filled with getting ready to go back to school. The twins start 1st grade this week! We already had the Open House to meet their teachers. I did not even (outwardly) flinch when another parent asked if we had already been to the upper campus with our older child. I did not choke back tears when she said, “Oh, that is right you do not have older children.” I bit my lip and did not say a thing although she is one of the few parents at the twins’ elementary school who know that Jake (and Sawyer) ever existed.
“They’d crossed over to that continent where grieving parents lived. It looked the same as the rest of the world, but wasn’t. Colors bled pale. Music was just notes. Books no longer transported or comforted, not fully. Never again. Food was nutrition, little more. Breaths were sighs. And they knew something the rest didn’t. They knew how lucky the rest of the world was.”
― Louise Penny
I know that I am lucky too. I am lucky to be Jake, the twins and Sawyer’s mom.
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 CommentsTags: baby loss, bittersweet, child loss, death of a baby, gratitude, happy birthday, Jewish customs, King and Queen of July, life after loss, new not so normal, parenthood, perspective, twins, yahrzeit
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.
Hearts
July 26, 2013 at 9:56 am | Posted in Grief, normal?, Sawyer, twins | 6 CommentsTags: child loss, death of a baby, hope, life after loss, new not so normal, unexplainable
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.
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.
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.
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