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.
Right Where I am: 6 years, 9 months, 2 weeks and 2 years, 5 months and 2 weeks
June 10, 2012 at 5:52 pm | Posted in Grief, life lessons, Love, normal? | 11 CommentsTags: child loss, dark days, death of a baby, grief, Jake, post traumatic stress disorder, Sawyer, twins
I am joining still life with circles for right where I am. Angie started this project last year. She asked other bereaved parents to write about where they were in their grief.
Am I 6 years, 9 months, 2 weeks from the last time I held Jake? Or, 2 years, 5 months and 2 weeks from the last time I saw Sawyer alive? (or I suppose it could even be the 2 or so months since the miscarriage). To be honest, I do not know where I am except right here.
I no longer cry every day. However, there is not a day which goes by that I do not think of them. Now I am answering bittersweet questions and telling their brother and sister about them.
My arms no longer constantly ache to hold them. However, the moments when they do ache are still so sharp and real. I hug their siblings just a bit tighter.
I can now talk about Jake and Sawyer without the lump in my throat threatening to choke me. However, the sadness and lost dreams are still there. Now they are part of me.
Just like the early days of this journey of grief I take it all one day at a time. I breathe. I put one foot in front of the other. I stay really busy. I try to be the best mother, wife, daughter, sister, friend and person that I can be. I do not always succeed. Sometimes I cry and the days are dark. I try to hope. I look for rainbows. I love and miss my 2 little boys. I live.
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.
Thank you!
April 28, 2012 at 8:06 pm | Posted in Grief, Love, silver lining, why I write | 4 CommentsTags: acting, baby loss, death of a child, gratitude, hope, March of Dimes, premature birth, SUIDS
2 words today:
THANK YOU!!
I Heart the March of Dimes
April 18, 2012 at 6:18 pm | Posted in Grief, life lessons, Love, parents | 2 CommentsTags: child loss, gratitude, hope, Jake, March of Dimes, Sawyer, tragedy, unexplainable
As I mentioned in my last post, our family supports the March of Dimes. We have walked every year since Jake died. Our team was named Jake’s Journey. After Sawyer died we renamed it to Jake’s Journey & Sawyer’s Strides. This year we are excited because the March of Dimes contacted us to let us know our donations are being matched by the hospital where all 4 of our children were born.
The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. I believe that the March of Dimes is making a difference and saving babies.
I cannot do anything to bring back Jake or Sawyer but maybe just maybe I can help spare other parents the heartbreak of having to live in world without their child/children.
Thank you to all those who supported our team this year and in past years. Thank you also to the hospital for matching funds. We appreciate all of your kindness and generosity. If you would like to support Jake’s Journey & Sawyer’s Strides please click this link.
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.
Where are Sawyer & Jake? (part 2)
February 26, 2012 at 9:16 pm | Posted in after death?, Death, Grief, life lessons, Love, normal? | 5 CommentsTags: child loss, family, life after loss, new not so normal, perspective, unexplainable
In this post I wrote that I believe Jake and Sawyer are in our hearts. I also believe they are close by. I do not have any proof. It is just a feeling (and a hope). Maybe at times it is more than a feeling.
Last year, in the last few days of Evan’s mother’s life she (Shelley) spoke about people in the room. She was at home. Family, friends and hospice were with her. A few times Shelley mentioned that there was a woman behind her and a little boy on the bench at the end of her bed.
When she was 17, Shelley took care of her sick mother. Shelley cared for her until she died 2 years later. Shelley was 19 at the time. Over 40 years later, Shelley spoke about a woman behind her bed. I believe that woman was her mother.
Evan’s sister asked questions about the woman and the boy. Shelley said that the boy seemed like he was around 6. At the time of Shelley’s death Jake would have been 5 1/2. I like to think that the boy was Jake.
“It is the secret of the world that all things subsist and do not die, but only retire a little from sight and afterwards return again. Nothing is dead; men feign themselves dead, and endure mock funerals and mournful obituaries, and there they stand looking out of the window, sound and well, in some new strange disguise.” – – Ralph Waldo Emerson
It is all part of my new normal. The reality I live in now does not include Jake and Sawyer’s physical presence but they are always nearby. They send me signs – like when I see a praying mantis on the window of my parent’s 8th floor condo or a ladybug in the middle of winter. I will look for their signs while I wait to hold Jake and Sawyer again. As an extremely wise bereaved mom wrote, “a lifetime is an impossibly long time to wait to hold my child again.”
Things could always be worse. . .
February 18, 2012 at 9:16 am | Posted in emergency room, Grief, life after loss, Love, mourning, venting | 6 CommentsTags: dark days, family, life after loss, new not so normal, perspective, post traumatic stress disorder
The other night I was talking to one of my favorite friends and she asked how everyone at my house was feeling. I thought about it and cautiously answered, “Everyone is doing pretty well.” And, I truly thought all was well, until 5 am the next morning. I woke up to Evan asking me to go get some ice packs. He had a bloody nose that would not stop. I won’t go into the gory details but he was a mess.
This had happened once before a few weeks after Sawyer died. Evan had come home from work and after a few hours he could still not stop the bloody nose. He shocked me by asking me to call 911. He was taken to the ER in an ambulance. The bloody nose eventually stopped.
After Jake died I had this realization that anyone and everyone close to me could slip away at an instant. Life had a new kind of uncertainty. I even flipped out when our dog, Buddy, had to be sedated for a dental cleaning. My very same favorite friend talked me down off the ledge as we waited at the vet.
Life seems so fragile. Maybe it was fragile before Jake and Sawyer died but I was oblivious. After Evan’s first visit to the ER it was not hard for me to imagine the worst happening. Only a few weeks before we had buried Sawyer. Nothing is guaranteed.
After yesterday’s visit to the ER I found myself trying not to let my mind go to the worst places. As I drove Evan from doctor to doctor I took deep breaths. I reminded myself of what my grandfather always says when asked how he is feeling, “I could be better but things could always be worse.”
The doctors told us that based on Evan’s blood pressure we were very lucky that it was a bloody nose because there were far worse alternatives. My mind had already played and replayed the worst of the alternatives. Now I will do my best to focus on the present. Unfortunately, Evan and I both know all too well that things could always be worse. He will get better.
Evan holding Sawyer
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A Mourning Mom 