Home is where the heart is. . .
September 30, 2012 at 11:02 pm | Posted in after death?, Cemetery, Grief, normal? | 7 CommentsTags: child loss, dark days, death of a baby, Jake, new not so normal, parenthood, Sawyer, thoughts, twins, unexplainable
I think that is how the saying goes. . .but what if your heart has been smashed into a thousand pieces? Where is your home then? I want my home to include all of my children. Jake never left the hospital. Sawyer did live in our home but not for long enough.
Our next door neighbors are selling their house. There has been a lot of talk about what people want in a house. A garage. A basement. X number of bedrooms and bathrooms. The top of my list is actually none of those options. My biggest concern is how far the house is from the cemetery where Jake and Sawyer are buried. We currently live 15 minutes away.
I was speaking to another mom at baseball practice and she mentioned that her neighborhood is at the edge of the cemetery. My mind filled with thoughts of what it would be like to be able to walk over to see Jake and Sawyer. Would I go more often? Would I ever go anywhere without going to the cemetery first? It is so hard to drive by it and not stop.
Today we went and picked out 4 mini pumpkins. One for each of the twins. One for Jake. One for Sawyer. I was thinking that I would bring them to the cemetery as I have done in past years. The twins had another idea. They insisted on bringing the pumpkins to Jake and Sawyer’s room. Jake never had a room in our current house. He was born and died 2 years before we moved into our house. Sawyer did have a room. It was the room next to the twins’ room. And, that is where they brought the 2 mini pumpkins.
Our Giving Tree
September 18, 2012 at 10:18 pm | Posted in after death?, Grief, Love, normal? | 9 CommentsTags: motherhood, new not so normal, parenthood, ways to honor the memory of your child
The winter after Jake died one of my favorite friend’s mother had a tree planted at a local park in his memory.
Sadly, my friend’s mom died the next year. I had a tree planted next to Jake’s tree in her memory. The two trees were planted near a small pond. In 2009, it rained so much that her tree did not make it. I was in the process of trying to relocate both trees away from the water when Sawyer was born. And then before I knew it he had died.
So I bought 2 trees. A tree to replace my friend’s mom’s tree. And, a tree in memory of Sawyer. All 3 trees are now away from the pond and at the edge of a playground. The first summer after Sawyer died it was really hot. I would go by as often as I could to water the trees. It made me feel like I could take care of something for Sawyer and Jake. All 3 trees made it through the summer but Sawyer’s always seems to be struggling.
I took the twins to the playground last week. I always check on the trees when we are there. The twins often help me.
As Sawyer’s sister “helped” with the tree she happened to pull off a small branch. She asked if she could bring it home to take care of it. I responded, “sure, why not.” When we got home it was bath time. She asked if she could take the branch into the bathtub and wash it. Once again I answered, “sure, why not.”
After the bath she wanted to make pajamas and a blanket for the branch. And, she did.
Boys (& Girls) of Summer
September 10, 2012 at 12:04 am | Posted in after death?, Grief, life after loss, normal? | 6 CommentsTags: baseball, death of a baby, fathers, Jake, life after loss, lucky, new not so normal, thoughts, trisomy 21, twins
When Evan and I were told it was 100% certain that Jake had trisomy 21 (Down Syndrome), 1 million thoughts raced through my mind. I doubt I can adequately articulate my exact thoughts and feelings at that moment. However, when we were “by accident” told that Jake was a boy I remember very clearly the precise thought which entered my mind first. The realization that Evan might not be able to play little league with our son was the thought which resonated first (and loudest) in my brain.
Jake was born 14 weeks early and only lived for 14 days. He did not ever leave the NICU. He never played little league. His little brother and little sister did join a team this year. They played in their first little league game over the weekend.
The team shirts were randomly given out right before the game. I have always thought that Jake’s lucky number was 14. So, maybe just maybe he was there today too.
7 years minus 1 day & I still miss you
August 26, 2012 at 9:14 pm | Posted in after death?, Grief, hydrops, Time | 15 CommentsTags: anniversaries, child loss, dark days, death of a baby, hydrops fetalis, Jake, new not so normal, parenting, quotes, thoughts
It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. Rose Kennedy
Dear Jake,
Tomorrow it will be 7 years since your Dad and I held you. I am still not sure how anyone got me to leave the NICU that Friday night. I have nothing really new to tell you. It is another day without you. Tomorrow will come and you will officially be gone for 7 years. The numbers do not matter. I will miss you forever. Love you always. I will look for you in my dreams.
Thank you Jake
August 12, 2012 at 9:52 pm | Posted in after death?, Grief, twins, why I write | 12 CommentsTags: child loss, dark days, death of a baby, gratitude, hope, Jake, Jewish customs, quotes, Sawyer, twins
“If there ever comes a day when we can’t be together
keep me in your heart, I’ll stay there forever.”
Winnie the Pooh, A. A. Milne
Dear Jake,
It was 7 years ago today when I was admitted to the hospital. The doctors said there was no other option. You were not ready for this world. I suppose the world was not ready for you. Your dad and I were terrified when the doctor told us my contractions were 3 minutes apart. I could not believe at 26 weeks it could possibly be real. I did truly believe you would live. You held on for 2 more days before we actually got to meet you.
I still cannot understand how it is 7 years later. I do not need a calendar to tell me the time of year. My tears are much closer to the surface. The lump in my throat is back. My irritation and impatience have also risen just below my skin. My nerves are so raw. I wish to lock myself away so that I do not snap. I already have apologized to your daddy. If only just for a few moments I could be with you and your littlest brother. I know that it is not possible. However, this time of year I frequently seem to find myself back on the island of denial.
Your Yahrzeit was this weekend. (The Yahrzeit falls annually on the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar.) Your dad and I lit a Yahrzeit candle for you.
You have 2 new cousins! Welcome to the world Eli and Owen!! I wish you could meet them. You probably already know this but your sister asked if she could have one of the babies. She desperately wants a baby brother. She talks about you and Sawyer almost every day. This morning she brought me two blankets she found for each of you. She is so sweet and thoughtful. I am trying my best to keep it together.
Thank you for chosing us as your parents. Thank you for the time you were able to spend with us. Thank you for sending us your baby brother and sister. They are shielding us from all the rain.
I miss you so much. I love you to the moon and back baby boy. I will look for you in my dreams.
It is complicated
August 8, 2012 at 9:26 pm | Posted in after death?, Grief, life after loss, Love, normal? | 10 CommentsTags: child loss, death, grief, hope, Jake, quotes, Sawyer, twins
It is complicated to explain. Or maybe it is not. The twins are doing and will continue to do things that Jake and Sawyer never did and never will. This is a fact. A bittersweet part of our lives.
There will be no first days and no last days. And nothing in between. Sometimes I play the pointless “What if” game. What if there were more time with Jake and with Sawyer?
I just read True Compass: A Memoir by Ted Kennedy. He included a letter his father Joseph Kennedy Sr. wrote to a friend whose son had just died:
Dear Jack,
There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. Nor is it any easier the second time than it was the first.And yet I cannot share your grief, because no one could share mine. When one of your children goes out of your life, you think of what he might have done with a few more years and you wonder what you are going to do with the rest of yours.
You never really accept it; you just go through the motions. Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something–something that he did not have time enough to do. And, perhaps, that is the reason for it all. I hope so.
Sincerely, Joe
I hope so too.
Avery’s Bucket List
July 10, 2012 at 5:40 pm | Posted in after death?, life after loss, Love, normal? | 2 CommentsTags: Avery's Bucket List, child loss, death of a baby, hope, parenthood, Spinal Muscular Atrophy, ways to honor the memory of your child
“Be kind, for everyone you meet is fighting a hard battle.” Plato
I recently stumbled upon Avery’s Bucket List. It is a blog by Avery’s parents. Avery was diagnosed with Spinal Muscular Atrophy. Her parents decided to create a bucket list for Avery and spread the word about SMA.
According to FightSMA.org, SMA is a genetic disorder which ” refers to a group of diseases which affect the motor neurons of the spinal cord and brain stem. These critically important cells are responsible for supplying electrical and chemical messages to muscle cells. Without the proper input from the motor neurons, muscle cells can not function properly. The muscle cells will, therefore, become much smaller (atrophy) and will produce symptoms of muscle weakness.”
Throwing the first pitch at a baseball game, have a bad hair day and party like a rockstar are just a few of the items Avery crossed off her bucket list before she died. Avery’s parents have continued her bucket list. Every day she is continuing to raise awareness and funding for a cure for SMA.
What is on your bucket list?
Help
May 2, 2012 at 10:18 pm | Posted in after death?, Grief, life after loss, life lessons, normal?, twins | 23 CommentsTags: child loss, death of a baby, hope, Jake, new not so normal, quotes, Sawyer, siblings
Aibileen, from The Help, whispers this quote in Mae Mobley’s ear every day so she will understand that she is special. Are there words which I can whisper into my toddlers’ ears that will help them understand about their brothers?
The other day I was driving the twins and listening to their conversation. They were discussing one of their friend’s new baby sister. The conversation went something like this:
“We have babies too.”
“Our babies are not growing.”
“They are flowers.”
“Flowers grow. So, our babies are growing.”
“Mama, what kind of flowers are Jake and Sawyer?”
A long silence from me. I finally come up with, “want to go to the new playground?”
Time Traveler
March 26, 2012 at 10:44 pm | Posted in after death?, Cemetery, Grief, normal? | 6 CommentsTags: dark days, new not so normal, post traumatic stress disorder, Sawyer, unexplainable
I wish I could go back to this moment:
I sometimes do feel like I should be able to beam myself back to the fall of 2009. If I could just hold Sawyer one more moment. Kiss his sweet cheeks. Perhaps all the allergy medicine I have been taking has made me loopy. Or, maybe it is because I just finished the Time Traveler’s Wife. I pray every night that Sawyer will visit me in my dreams. He has not in quite a while. I wake up every morning knowing that I am still here in 2012 and this is our reality:
Running with the Rosebuds
March 20, 2012 at 10:48 pm | Posted in after death?, life after loss, Love, normal?, twins | 7 CommentsTags: Charlie, child loss, cystic fibrosis, hope, life after loss, perspective
Last weekend the twins ran in a race to support Cystic Fibrosis. One of my brother’s best friends, Charlie, had CF. Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system of about 30,000 individuals in the United States, and 70,000 people worldwide. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical care have enhanced and extended the lives of children and adults with CF. Many people with the disease can expect now to live into their 30s, 40s and beyond.
Charlie’s parents were told that he would not live to be a teenager. He beat the odds and he did live past his teens, twenties and into his thirties. Charlie was an amazing person who inspired all who were lucky enough to know him. I hope that Jake and Sawyer have somehow been able to meet Charlie.
Both Evan and his sister have been diagnosed with lung diseases which CF research could potentially one day help.
Click here to see the twins race warm up.
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