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?
Fourth of July & Faces of Loss
July 4, 2012 at 9:44 am | Posted in Grief, life after loss, Love, silver lining, why I write | 2 CommentsTags: 4th of July, child loss, death of a baby, Faces of Loss, hope, ways to honor the memory of your child
4th of July
Happy 4th of July!
Stevie Joy, was stillborn on May 8th, 2010, when Kristen Cook was 26 weeks pregnant. Her perfect pregnancy came crashing down in an instant the moment she heard those shocking little words: “there is no heartbeat.” Among the devastation the feeling of complete isolation and loneliness comes along with the death of your child. Kristen began to search the internet and quickly realized that she is not alone. Pregnancy and child loss does not discriminate it affects families of all walks of life. There are members of the club all over the world. As Kristen writes, “It’s not just something that happens to “other people,” it can happen to anyone. I realized there were so many other nice, normal people like me who had gone through the death of a child. And they were surviving. That realization gave me hope.”
Kristen took her hope and created a place for women to share their stories and faces. Faces of Loss, Faces of Hope brings awareness to the issue of pregnancy/infant loss. Kristen’s hope is that by “telling the world we are not afraid to show our faces and tell our stories, barriers will be broken down. Taboos will be broken, and lines of communication will be opened.”
I have shared our story. I wish none of us had to live in a world without our child/children. Thank you Kristen for helping us to know that we are not alone and that we can survive.
Rockstar Ronan & Rainbows
June 24, 2012 at 10:52 pm | Posted in Grief, life lessons, Love, silver lining | 3 CommentsTags: child loss, childhood cancer, death of a baby, hope, neuroblastoma, rainbows, Rockstar Ronan, ways to honor the memory of your child
In August of 2010, Ronan was diagnosed with Stage 4 Neuroblastoma cancer. He died on May 9, 2011 in his mother’s arms after an 8 month battle where “he never gave up until he was told it was time to let go.” Maya made her son a promise that she would continue to fight for him until cancer survival rates start to improve and eventually a cure is found. The Ronan Thompson Foundation was created.
Childhood cancer is the number 1 disease killer in children. Pediatric cancer only receives 3.8% of all cancer research funding. Maya is out there finding the doctors who will make the most difference in fighting childhood cancer. The Ronan Thompson Foundation is raising money to fund the research. Maya meets with and helps other families with children who have neuroblastoma. Maya has also created a list of things that we can all do to help and live like Rockstars.
I know that what I am writing here is a fraction of all that Maya and Ronan have done and continue to do to change the face of childhood cancer. However, I do know for certain that Maya and Ronan are changing the world for the better.
As always I am still searching for rainbows. Here is the one I found today. . .
Thank you to Glenda for suggesting I write about Rockstar Ronan. Thank you also to Jessica who mentioned Molly Bears. If you have any other organizations that you would like me to write about please let me know.
Cora’s Story & Compromise
June 22, 2012 at 2:02 pm | Posted in CHD, Grief, Love | 7 CommentsTags: child loss, congenital heart defect, cora's hopes and dreams, cora's story, death of a baby, hope, pulse ox, Sawyer, twins, ways to honor the memory of your child
Cora was a full term healthy baby girl born on November 30. The pregnancy, birth and delivery were all uneventful. Cora’s Apgars were both 9s. She died on December 6 while breastfeeding in her mother’s arms. After her death, Cora was diagnosed with a congenital heart defect (CHD).
Her mother, Kristine, created a non-profit which is spreading CHD research, resources and information in memory of Cora. CHD is actually the most common birth defect – it occurs in 1 out of 100 births. There is no cure but early detection is sometimes possible with a pulse ox screening. Screenings are a low-cost, noninvasive way to potentially detect CHD.
Cora’s mom is also advocating for every baby to receive a heart screening at birth. Cora might not physically be with us now but as her mom writes so eloquently, “Cora is saving lives now.”
Cora and Sawyer were born in the same month of the same year. They both died that year too. Sawyer’s preliminary reports also indicated an issue with his heart. We still do not know exactly what happened to Sawyer but I know that I wish he had received a heart screening at birth. Thank you Kristine for sharing Cora with the world. She is truly saving lives.
Compromise:
She really wanted to go swim in the pool. He really wanted to play pretend at home. After a lot of pleading, crying and whining they finally reached a happy compromise.
Miscarriage
May 28, 2012 at 10:28 pm | Posted in Grief, life after loss, normal?, pregnancy | 18 CommentsTags: bed rest, child loss, death of a baby, grief, hope, miscarriage, mom, perspective, post traumatic stress disorder, Sad
The doctor who told me that I was most likely having a miscarriage put me on bed rest for a few days. Bed rest for me equals time where my thoughts can take over any rational part of my brain and run wild. Bed rest means that I can not resort to my usual defense of keeping so busy that I do not have time to think.
I cried on the couch as I watched the twins play. I was so lucky that my mom was able to come to town. I told her that she did not need to come. I knew by the time I spoke to her that no amount of bed rest was going to help. She said she wanted to come anyway. I did not argue.
I thought writing about it in my last post would somehow help. I reread my post and it turns out that I did not actually write what happened. So here it is, I had a miscarriage.
I will be fine. I will continue to get up and live just as I have every day, week, month and now years since Jake and Sawyer have died.
Planning & Hoping
May 22, 2012 at 10:40 pm | Posted in Grief, life lessons | 20 CommentsTags: child loss, dark days, death of a baby, drugs & doctors, hope, infertility, life after loss, miscarriage, post traumatic stress disorder, unexplainable
Many doctors told me that I could not get pregnant again after Jake had died. We tried clomid, letrozole, IUIs and eventually IVFs. We went to several infertility specialists in town and then flew to New York to get yet another opinion. The doctor we ultimately had the twins with was so sure that I would not get pregnant that Evan and I nicknamed him Dr. Doom and Gloom.
We shocked ourselves and Dr. Doom when I had the twins. We went back to Dr. Doom when we were trying again. He again told us that we had little to no chance. Again, we surprised everyone when we had Sawyer.
Evan and I did not think it was possible to get pregnant on our own until a few months ago. I was late and thought to myself there is not a chance in the world I am pregnant without the assistance of lots of drugs and doctors. However, there it was . . . the 2 pink lines on the pregnancy test.
I showed Evan the pink lines. We both just stared at each other. We were happy. Very, very happy. In all honesty, I did not believe that it could really be true. After Jake and then Sawyer died there is always a part of me which expects the worst but I try to hope for the best. There are so many stories of people who get pregnant after years of infertility. I thought maybe just maybe this could be happening.
Until I started to bleed. Evan and I went to the OB. He confirmed that yes I was pregnant but I was most likely having a miscarriage. He asked if this baby was planned. I wanted to shout that we had not planned for this baby but then again we had not planned on burying 2 of our sons. Instead, Evan came up with the perfect answer, “We were not planning but hoping.”
Purple & Sparkly
May 12, 2012 at 10:14 am | Posted in Anniversaries, Grief, Love, silver lining | 10 CommentsTags: 5th birthday, cancer, child loss, death, favorite friends, hope, Jake, Maddie Sphor, Rockstar Ronan, Sad, Sawyer, unexplainable
Some time after Jake died one of my favorite friends and college roommate suggested that I read the blog The Sphors Are Multiplying. Years later and some time after Sawyer died another of my favorite friends suggested that I read another blog, Rockstar Ronan. At that time I could barely deal with our own sad story let alone read about the deaths of Maddie Sphor and Rockstar Ronan. I am not sure when but some time along the way I realized that I needed to see/read how other parents survive the deaths of their children. It helps me to read how they are continuing their lives while always remembering and honoring their children. I wish no parent had to live in a world without their child/children. This is not the reality and unfortunately the Club continues to add members.
Today would have been Ronan’s 5th birthday. I hate that he is not here to celebrate.
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