Our Mission

Come find out what our mission as a non-profit organization is.

Our Story

Read the story of the sweet baby boy that inspired the foundation of this non-profit organization.

Packages

Learn more about what each donated package contains and the reason why it is included.

How To Help

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Donate

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Thursday, October 30, 2014

Guest Post: Cindy

Today we are lucky enough to have Cindy with us Guest Posting from Strollin' to Fight SIDS - she is an amazing person who was willing to share with us all her story. Please take a moment to read this post, visit her site,  and feel free to leave comments in response on our Facebook page

In October of 2011 my family received an unexpected surprise: A positive pregnancy test. Our youngest daughter was only
10 months old, and as a full time working mom of two girls under 5 years old, I was not sure about how to handle this news. As the months went by, we learned that I was expecting our third daughter. By the time she was born, on June 21, 2012, we were determined to accept the chaos that three children under 5 would bring. The second she arrived, we were in love. Anneliese Marie Reher was the picture of health, weighing in at 7 pounds 5 oz, and 18.5 inches long.

Before Anneliese was even born, I felt a deep, nagging fear of Sudden Infant Death Syndrome. As a seasoned mom, I should have felt more confident in the survival of my third child, not less so. Before she was even born, I remember perusing the internet as if I could “find” the way to avoid SIDS. After her birth, I still felt this fear, but I pushed it aside. I had always been one to follow all the Safe Sleep guidelines, almost obsessively so, and I continued to do so with Anneliese. Anneliese’s crib was always bare and boring: completely empty except for our bundle of joy. No blankets, no bumpers, no stuffed animals. Anneliese had started to roll from back to front, and front to back, and so we had stopped swaddling, in case she rolled in the night, so she would be able to right herself. Although she was rolling, it was not consistent, and the rolling episodes were few and far between. She was exclusively breastfed, current on vaccinations, the room was kept cool, and she slept with a pacifier. I am a stickler for the rules.

Before she died, I remember one day in particular. I was talking to my dear friend on the phone about how my parents were pressuring my husband and I to consider a permanent end to our fertility: a vasectomy. I was telling her how I had prayed about this, and that I felt it was wrong. I then told her that I was terrified of SIDS with Anneliese, and that I couldn’t consider anything permanent until she reached 1 year of age. I told my friend that I knew I could never replace her, but that I would want the chance to have another if she died. I was that fearful of SIDS. Now, looking back on it, I think God was preparing me for what was to come.

On October 27, 2012, I breastfed Anneliese in the morning, and then headed to the local Kid’s consignment sale to purchase early Christmas gifts for the girls. While I was gone, my husband tried to get Anneliese to sleep in the swing in the living room, where she often napped due to her reflux, as the swing allowed her to sleep elevated. But she would not sleep there, and was very agitated that day, so my husband put her in her crib in our room, on her back to sleep, for her afternoon nap. When I got home after the sale, I was exhausted. Unbeknownst to me at that time, I was already feeling ill and exhausted from the effects of yet diagnosed postpartum thyroid inflammation, and thyroid cancer. I fell asleep on the sofa, and later awoke to wonder why Anneliese had not awoken ready for a feeding. I went into our room, and the nightmare that I saw that day will replay in my mind forever and ever. Our sweet Anneliese was gone. During her nap, she had rolled from her back, to her stomach, with her head to the side, and departed this world, into the loving arms of Jesus.

My pediatrician had always told us not to worry when babies start rolling from stomach to back; that there was nothing that you could do to prevent them from rolling and that by that time their neck strength was such that everything should be ok. Even though we followed all the safe sleep rules, my husband and I could not stop Anneliese from rolling into an “unsafe” sleep position herself. The day she died was the first and last time that she rolled during a nap. How is anyone to prevent their baby from rolling? How many times, as babies, did my older daughters do the same, and yet they never died?

Soon after her death, a friend who I had not seen for 16 years saw my post on Facebook about Anneliese. She came to me, and told me that she had had a dream, that she was meant to help me start a SIDS charity walk in the Seattle area, and that we would call it Strollin’ to Fight SIDS. She told me that she felt lead by God to be there for me, and to help make it happen. Initially, I have to admit, that I was skeptical that we could make it happen. In addition to planning a major event, I also had received the news that I had papillary thyroid carcinoma. The most miraculous thing is that Anneliese’s
very birth saved my life. Not only did she save me spiritually, by drawing me closer to my faith, and the knowledge that I would see her again, but she saved my physical body too. Her “unplanned” June birth set off inflammation within my thyroid gland, which allowed the cancer to be found. If I had not given birth, my cancer would never have been discovered. Less than 1 month after her birth, I was at Swedish hospital for surgery, and in January of 2013 I had chemotherapy, which required that I be isolated from my two living daughters for over a week.


Not only did I battle cancer, and win while grieving the loss of Anneliese, but my friend and I made our dream a reality. The first annual Strollin’ to Fight SIDS took place June 2013, and we are scheduled for our third annual event June 2015! We have raised over $22,000 dollars for SIDS research via The CJ Foundation for SIDS through our events. We also hold various small online fundraisers on our Facebook page throughout the year for The CJ Foundation for SIDS, as well as Dr. Hannah Kinney’s SIDS research at Boston Children’s Hospital.

As a medical professional and a mother of a child lost to SIDS, I am passionate about supporting research into Sudden Infant Death Syndrome. Something must be medically wrong for our babies to die. Safe sleep was simply not enough to save my daughter. Although we will always miss her sweet smiles, and bubbly personality, it comforts us a bit to know that we are doing what we can to try to stop SIDS from affecting other families ever again.

Find us online at: www.strollintofightsids.org

Sunday, October 26, 2014

Guest Post: Yanet

Today we are lucky enough to have Yanet with us Guest Posting from the Tuts for Tre - she is an amazing person who was willing to share with us all her story. Please take a moment to read her post, visit her site, and feel free to leave comments in response on our Facebook page

Hello, I am Baby Tre's Mommy. Baby Tre passed away Nov. 13, 2012 after fighting to survive before he was even born. He was diagnosed with Hydrocephalus around 27 weeks via ultrasound during my pregnancy. Baby Tre was born at 35 weeks and was later diagnosed legally blind (Morning Glory Syndrome), was put on a 23 hour feeding tube, Epilepsy, West Syndrome, Scoliosis, Moebius Syndrome (inability to smile, show any facial expressions). He passed away at home in my arms on Hospice. He was 14 months old.

In his honor I started Tüts for Tre. We make Tutus for Princess who fight to survive and Princesses in Heaven for FREE. We have mailed a few around the world including England, Africa, New Zealand & Canada.


If you are interested in receiving one send us a message on Tüts for Tre and request to get required info. We would love to make a Princess or a Grieving Mother SMILE!! 

Tuts for Tre on Facebook:

To learn about Baby Tre:


If you would like to guest post with us this month it isn't too late, please send us a message via our Contact Us page.

Saturday, October 25, 2014

Capture Your Grief - Days 24 & 25

Day 24: Forgiveness

When I think about forgiveness and my grief journey the person who I need to forgive most is myself.  In the past I used to resent people who made comments that were hurtful but I no longer let those comments bother me.  There are still times when I feel guilty about my son's death.  I know in my heart that nothing I would have done differently that night would have kept him alive but it is hard to come to terms with the fact that my perfectly healthy newborn went to sleep and never woke up and nobody can tell us WHY.  I'll never forget being interviewed by a detective in the hospital and him starting off with....So, your a nurse.....In my mind I wanted to scream, YES I'm a nurse, and YES my son was in bed with me and YES he passed away.  Gage had been in bed with me, he was where I usually slept and I was where my husband usually slept a good arms length apart.  I hold onto a lot of guilt since cosleeping is thought to be one of the risk factors for SIDS.  I have coslept with each of my children while breastfeeding and know 110% that this did not play a role in Gage's death, but having someone throw it in my face was difficult.  I try to move past these thoughts and feelings but they still eat at me often. #captureyourgrief #whathealsyourheart

Day 25: Mother Earth
I didn't plant a tree or seeds today but have several times in the past.  We planted a tree in our back yard shortly after Gage passed and keep it surrounded by flowers.  Every time I look at them I am reminded of my sweet boy.  We have enjoyed keeping up the tree and flowers as a family.  I received a packet of Forget-Me-Not seeds in a card from my aunt after Gage passed.  This is one reason I chose to incorporate a packet of Forget-Me-Not seeds in each of the kits that we donate through our non-profit organization in Gage's memory.  I like to think that other families can plant these seeds and have something beautiful to look at while they remember their sweet babies gone too soon. 
#captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Friday, October 24, 2014

Captue Your Grief - Day 23: Inspiration

Day 23: Inspiration

Gage inspired me to start our non-profit organization with the hopes of helping other families who experience the loss of their infant(s).  I don't wake up each day excited that I get to make these kits for others because I truly wish there was no reason for them.  I wouldn't wish this type of loss/tragedy on my worst enemy.  I wake up each day and hope to be the best me I can be for that day.  I wake up excited to have a relationship with God and know that Gage is in His care.  I wake up thankful each day knowing that one day my time will come and I'm no longer afraid of that day. I welcome the day I get to see my little boy again.



Day 23Day 23: INSPIRATION. Have your children inspired you in your life? Maybe it is someone you found because of your children that has inspired you. Share about who or what you draw your inspiration from. Living an inspired life is one of the greatest things you could ever do. Waking up feeling excited about my day is something that I never imagined would happen after our son died, but it did. I know today’s subject will not resonate with some people as the thought of waking up feeling inspired to be alive is one of the last things you are feeling. So if you feel you cannot take part today, maybe just have a look at what others are saying. It is my hope that this post might inspire some feelings in your own heart to start searching for some inspiration for your own life. 
Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Tuesday, October 21, 2014

Guest Post: Maura & Sam

Today we are lucky enough to have Maura & Sam with us Guest Posting from Charlie's Kids - they are an amazing coupe who were willing to share with us all their story. Please take a moment to read this post, visit their site,  and feel free to leave comments in response on our Facebook page

When my husband, Sam, and I found out we were pregnant with our first son we were over the moon.  We couldn’t wait to share our pregnancy news with friends and family, and excitedly prepared for his arrival.  We read all the baby books, had half a dozen showers and spent copious amounts of time making sure his nursery was just perfect.
On April 6, 2010, we finally got to meet our sweet baby boy.  He was born a perfect, healthy bundle at 7 lbs. 11 oz.  We named him Charlie Paul.
My love for him grew deeper and stronger each time I held him, nursed him and sang to him.  I could stare for hours into those beautiful, trusting eyes.
We imagined Charlie’s life, and made plans.  We looked forward to zoo visits, baseball games and his first day of kindergarten.  But our dreams were cut short.  Three short weeks after welcoming our Charlie, he died, a victim of Sudden Infant Death Syndrome(SIDS) and an unsafe sleep environment.
Like most new moms, I picked out a cute, new outfit each day, changed a bunch of diapers, and tried desperately to remember all the words to the nursery rhymes and songs that brought me joy in my childhood.  I nursed him and rocked him, and worked hard to make sure my baby was happy, healthy and had a full belly.  I did everything, except sleep, and after three weeks complete exhaustion took over.
Sam, the ever-doting daddy, held Charlie that night so I could catch a few hours of uninterrupted sleep.  Tired, he laid on the couch with Charlie, the perfect picture of sleep-deprived father and son.  It wasn’t unusual; we so often see this photo on Facebook — baby asleep on dad’s chest, dad sound asleep too.  Sam woke up, Charlie didn’t.
We now know: this sleepy snuggle is actually dangerous for our babies.  Co-sleeping and tummy sleeping are two of the leading risk factors for SIDS, and this includes those innocent naps on the couch or accidentally falling asleep after nursing in the night. So, when trying to calm a newborn at 2 a.m., or sneaking a few extra zzz’s during the day, think of our Charlie. We want you to know that your baby is safest on his or her back, alone in the crib. This has become one of our life missions.
There is nothing that can take our pain away, but trying to prevent other families from living this same nightmare offers some sense of purpose as we move forward in our grief.
With that goal in mind, on April 6, 2011 – Charlie’s first birthday – Charlie’s Kids Foundation was established.  Our mission was clear: to raise awareness and support of SIDS by educating families, providing resources for new parents and promoting dialogue about SIDS and safe sleep practices.
In just a few short years we have been able to see long term dreams become a real working reality.  With our unique backgrounds – me, a kindergarten teacher with a Masters in Reading, and Sam, a pediatric cardiologist with a passion for advocacy –  we knew when we started our foundation that we wanted to use children’s books to spread the safe sleep message.
Today we could not be more proud of our very own Charlie’s Kids bedtime book, Sleep Baby Safe and Snug, written by pediatrician Dr. John Hutton.  Based on the American Academy of Pediatrics’ Safe Sleep Recommendations, we know this little book is having a huge impact, as it is being heard, remembered and read over and over again by parents and caregivers to their little ones.
Sleep Baby Safe and Snug provides the safe sleep message in the context of a beautifully written and illustrated children’s story.  Because books are often part of the traditional bedtime routine, this book provides safe sleep instructions and reminders right before the child is placed in their sleeping environment.
With this small but mighty book we have partnered with organizations across the country helping to spread this most important safe sleep message.
And, in doing so, Charlie continues to be a big part of our family and everyday lives. We talk about him. We include him in our family pictures. His name is on our Christmas card. We always tell people we have three children. Through Charlie’s Kids, we believe Charlie is becoming a part of families across the country too. We know his too short life is making a big difference.
While their family is forever altered, Maura and Sam made Charlie a big brother upon the arrival of Owen Daniel in June 2011. They welcomed their third child, Annie Elizabeth, July 2013. They can’t wait to tell their children how their big brother has changed so many lives for the better.
Sleep Baby Safe and Snug is now available at select retailers in Cincinnati: The Blue Manatee, The Villager and Joseph Beth Booksellers.  It is also available online at Amazon.com.  If you are a member of a community organization, hospital or health department, please contact us at charlieskids.org for more details and special pricing.
Charlie's Kids Website:
Charlie's Kids on Facebook: 

If you would like to guest post with us this month it isn't too late, please send us a message via our Contact Us page.

Saturday, October 18, 2014

Capture Your Grief - Day 18: Gratitude

Today I am most grateful for my kids. I am grateful that they are here to keep me going. It has been hard to watch what they have gone through at such young ages but I'm also grateful to see how resilient they are. They are the reason I got out of bed each morning after Gage died. I am grateful for everything they teach me. I learn from them each and every day. I'm most grateful for their innocence and how willing they are to show me how much they love me......I never get tired of their hugs and kisses! #captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Wednesday, October 15, 2014

Capture Your Grief - Day 15: Community

I read a post today about pregnancy and infant loss Remembrance Day and how it's a day most don't know about until they experience a loss themselves. This is true in my case. I'm glad for all of the people I have met and crossed paths with along this journey. I have received so much support from strangers. I hope that I have also provided support to others along the way. Tonight we lit candles for Gage and all the other angels who returned home too soon. #captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Tuesday, October 14, 2014

Capture Your Grief: Days 12-14

Day 12: Music
There are several pieces of music that I listen to that remind me of Gage. "Homesick" by MercyMe was played at his funeral and the words accurately describe how I feel.  I recently heard the song "Dancing In The Sky" and it has become one of my new favorites.

Day 13: Season
I associate winter with Gage.  All of my memories happened in February 2012.  He was born and died all in the same week.

Day 14: Dark/Light
Looking back I can say there have been both dark and light moments since Gage's passing.  There is so much tragedy/trauma that we experienced during this time.  I will never forget watching as the paramedics worked on my 3 day old son or seeing my older children hide behind the couch as Gage was rushed out of the house and to the hospital.  I will never forget watching as my baby was buried into the ground.  I will never forget the weeks and months that followed his death and the struggle we had as we tried to get back to our normal lives.  I will never forget the hundreds of questions that I am asked by three brothers who don't understand why their baby had to die.  I never experienced death or suffering as a child.  One of the hardest things is knowing what my three older children have experienced at such a young age and trying to help them deal with it as best as I know how.

Our son Lane is the light that has come into our lives since we lost Gage.  It was difficult not to worry throughout his entire pregnancy and especially when we first brought him home.  He has brought so much joy and happiness into our family.  I love to watch my boys interact and be so protective over him.  I feel like he has shown us how to truly smile again.  He has not and won't ever replace Gage but I also know that he wouldn't be with us if we hadn't lost Gage.  I am glad that we chose not to live the rest of our lives in fear and had faith that we wouldn't experience the same tragedy all over again. There will always be some darkness but I can honestly say there is a light of hope.  I now try to live my life remembering Gage and longing for the day that I will see him again. #captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Join the Wave of Light..

Join the Wave of Light tomorrow! Don't forget tomorrow is October 15th - Pregnancy & Infant Loss Remembrance Day. We invite everyone, wherever you live, to join us in lighting a candle at 7 PM to help remember all of our Angels. Help us by sharing this image:


Friday, October 10, 2014

Capture Your Grief Day 10 - Support


I have always felt support during my grief journey.  I immediately blamed myself after Gage's death. He was sleeping with me and I was the one who found him but was unable to save him. I hate reliving that Saturday morning. My husband was and continues to be my greatest support.  Our relationship has been strained but definitely strengthened throughout this journey. I can understand how so many relationships are broken after such a loss, a loss no one should have to endure.  My husband has supported my want/need to start GAGE and share our story even though it may not have been important to his grief journey. I wouldn't be where I am today without him.

We have always been lucky to have great support from family and friends. We have changed since losing our son but have always felt accepted. The comments that are sometimes hurtful are usually said from people trying to provide comfort but  don't know the words to say.  I have been told on multiple occasions that it is probably easier to deal with the loss of our newborn in comparison to an older child because I didn't get to see much of Gage's personality or make many memories with him. I'm to a point that I can hear comments like this and not scream at the person but in my mind I'm thinking that those moments were robbed from me. I won't get to hear his laugh, his first word, see his first steps and every other milestone/memory that we could have made if he were here longer.  I often feel sorry for that person who makes those comments because I don't think many people understand what this journey is like until you are living it yourself. #captureyourgrief #whathealsyourheart


Day 10: SUPPORT. Have you felt supported in your grief journey? If so, where did that support come from. Was it from who you expected? Were you surprised by the support or lack of support you received. How would you suggest people could support those grieving, better? If you feel disappointed that your loved ones are not supporting you in the way you need, have a think about why that is. Sometimes when we stop to think about ‘why’ instead of just focusing on the negative emotions of disappointment that we feel, we discover reasons why those people cannot or could not support us. It could be that our story brings up painful memories for them. They could actually just be really insensitive or maybe there is more to it and they just had no idea how to help you and the fear of upsetting you even more was too great. Have you communicated your needs to that person? So many people, when asked that question say, no. Sometimes it is because they didn’t know what they needed at the time or it is because we subconsciously believe that our friends and family should know exactly what to do, when really, they cannot read our minds. Share thoughts about support and maybe send out some love to the rest of your community members as well.
Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Thursday, October 9, 2014

Capture Your Grief Day 9 - In Memory

We created our non-profit organization God's Angels Gone Early in memory of our son Gage.  I have felt great comfort in making kits and donating them to local facilities in Gage's memory.  The kits we donate contain a homemade blanket, outfit, homemade hat/headband, journal, "remember" magnet and a packet of Forget-Me-Not seeds.  All of these items brought me comfort shortly after we lost Gage.  I am grateful to all of the people who donate items, money and their time to help make this organization a reality.

I have been given a few pieces of jewelry that help me remember Gage.  I am so grateful for these gifts.  I was given a matching necklace and bracelet from my aunt that was made from rose petals from Gage's funeral flowers.  My husband also had a necklace made for me which helps me to remember Gage. #captureyourgrief #whathealsyourheart



Day 9: IN MEMORY. There is such a deep-rooted yearning that we feel when our beloved children die. This yearning hurts but it also inspires us to get creative to do something in memory of our children. Have you done anything in memory of your child? Maybe it is something your created for them. A tattoo or a piece of jewelry. Did you create a garden? Maybe you created an organization or a charity benefit. Maybe you took up a new practice. A new hobby. Writing, painting, dancing, reading. Share away.
Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Wednesday, October 8, 2014

Capture Your Grief Day 8 - Resource


We began receiving resources immediately....while we were sitting in the hospital with Gage.  The Glendale Fire Department was in the hospital at the same time for another family who lost a son to SIDS the same morning and provided my mother with a lot of resources to be given to us at a later time.  Shortly after we received a gift from a local organization Sewing For Babies.  The package we received contained various items that helped me and still help me remember Gage.  We have a great circle of family and friends who have always been there to support us on this journey.  I am grateful to the people who are always willing to listen even though they may not fully understand.  I am grateful to the people who speak to me about Gage and still include him as one of my children.  A part of my healing process is to share my story with others and speak openly about my son and I am always grateful to those who help me in that process. #captureyourgrief #whathealsyourheart
Gift from Sewing For Babies

Day 8: RESOURCE. When we become bereaved, in the beginning, many of us look outwards for help. We set out in the night with a blanket and a lantern in search of others like us. Along the road we usually find someone or something and it is with that discovery that we can walk this road with understanding company we watch the sun begin to rise over our worlds again. Share some resources that have aided you in your healing journey. It may be a website, charity, organization, a person/teacher/therapist/new friend etc. Whatever it is, share what is so wonderful about that resource and how it has helped you. Please feel welcome to share links so that others can benefit.
Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Guest Post: Andrea

Today we are lucky enough to have Andrea with us Guest Posting from the Ellise Brown Foundation: Bows for Ellie - she is an amazing person who was willing to share with us all her story. Please take a moment to read her post, visit their site, and feel free to leave comments in response on our Facebook page

Merry Christmas 2011, The Brown Family is expecting! Wow, we were so excited. Noah was going to be a big brother. Noah went around telling everyone I am going to be a big brother with a big ole smile on his face. Pete and Andrea Brown could not have been more excited to make the family complete with the magical number 4.  Andrea is always so nauseous when pregnant and was ready to hit that second trimester to get over the feeling and to find out if they would be having two boys or one of each.  Right before Easter 2012 they found out they were expecting a little girl. Everything looked well with baby, except Andrea’s cervix was thinning to fast. So the docs put her on bed rest at the end of May and we had ultrasounds every week to check. Ellise “Ellie” Helene Brown made it to the c-section date of August 24th.  Ellie weighed in at 7 lbs 3 ozs and 19.5 inches long. Big brother was so in love and so were mom and dad.

Things went so smooth with Ellie as a baby. She slept through the night  (big brother did not do that until he was 4, yes 4!), ate like a champ, and was growing like a weed. Christmas 2012 came around and we were so excited! We had a new bike for Noah and a baby cabbage patch doll for Ellie. Pete and Andrea were both teachers so they were also excited to have two weeks off to spend with the kids. Ellie loved Christmas. She was such a good baby and would sit and just smile until someone opened a gift and started crinkling the paper. She would scream at them. We couldn’t believe it! She smiled all the time, but that paper scared her. If they had only known that would be the last video they had of her.

New Years was here and we had lots of family plans. However, Andrea’s brother Brad went sledding and had a “little” accident.  So Brad’s two boys, Evan and Ethan, were spending the day with Pete, Andrea, Noah and Ellie. This would be the last time all the boys were together to play with her. She loved to watch them. That night they Skyped with Pete’s parents who were in Michigan and Pete and Andrea’s first day back to work after Christmas break was spent with Andrea’s dad and the next day with Andrea’s mom. Ellie had her fill and her last “stop” was on January 9, 2013.

Pete and Andrea dropped Ellie off at her babysitters. Andrea’s mom watched Ellie and Noah 3 days a week and they went to a family friend who babysat out of her home 2 days a week. We could not have asked for a better babysitter, she loved our kids as her own.  The kids always went for a walk to see the farm animals. On the way Ellie fell asleep in her car seat. When they got back, Ellie was still sleeping so she left her in the car seat and sat her back in the “nap room”. She checked on her a few times and the last time she checked, Ellie was unresponsive.  Ellie never woke up; she had gone to be with the Lord.  Two days later the sheriff tearfully reported to the Brown’s “we have no idea why your daughter died and so her death will be classified as Sudden Infant Death Syndrome (SIDS).”  This is the answer one gets when there are no answers…there would be no closure.

Ellie was Andrea’s “bow diva.” Everywhere Ellie went Andrea had a bow in her hair to match the outfit. We had a drawer dedicated to bows. Andrea loved them and so did Ellie, she never bothered them. Through our grieving, we decided we wanted to start a foundation in her name. Our mission was to educate families on SIDS, raise awareness, provide funding for research on SIDS, and to cover funeral costs of families who lose an infant. To raise money, Andrea wanted to make bows and sell them. Yes bows! In March 2013, they began the Ellise Brown Foundation with funding from Bows for Ellie.  They knew bows would not provide all the funding for all they wanted to do. In the midst of starting the foundation, they found a run/walk that supported SIDS and it was in our neighborhood, Tyler’s Run.  Andrea and Pete were excited and wanted to volunteer. To their disappointment, the family running the event was retiring from the run and asked if they wanted to take it over. WOW! Two months into the grieving process, can we really take on this fundraiser event and make it work?!?!  The Brown Family was on board! We can do it and let Ellie be our motivation.  Instead of crying, lets make bows! Instead of sitting here thinking about what ifs, let’s send sponsor letters! And our sadness and grief was channeled to making the first annual Ellie and Tyler’s 4 Miler a successful event! And successful it was!  We were able to donate to Whitewater Park Kids Program, Cribs for Kids Program in Cincinnati, Cradle Cincinnati, Charlie’s Kids, provide funds for a families loss of an infant, and last but not least Margaret Mary Health.

Margaret Mary Health is where Ellie was born and was also the place she was pronounced dead.  We wanted to focus a great effort at the local community hospital on SIDS and ways to promote safe sleep. We met with the head of the OB department, Debbie Gloyd, and she was up for any change we wanted to make to efforts to promote safe sleep practices.  She said “If we are going to preach it, we are going to do it”. In less than a year, Margaret Mary Health is a blanketless hospital and committed to the use of sleep sacks. Every mother upon discharge is now provided with a swaddle sleepsack to use with a newborn and a size small sleepsack to use as the baby gets older so there are no blankets are in the crib.  Each mother also receives a Charlie’s Kids Sleep Baby Safe and Snug book with safe sleep practices on it, and if a baby girl they receive an Ellie Bow.  And our last step was to provide cribs so parents do not co-sleep with their infant. As such, we stared a Cribs for Kids Program at Margaret Mary Heatlh.   Through the grace of God, baby Ellie is leaving her mark and having a wonderful impact on this world.


The Brown families next step is to convince the local Cincinnati hospitals “walk the walk” and to jump on board with “blanketless” nurseries.

Ellise Brown Foundation: Bows for Ellie can be found on Facebook at

If you would like to guest post with us this month it isn't too late, please send us a message via our Contact Us page.

Tuesday, October 7, 2014

Capture Your Grief: Day 7 - Sacred Place

My sacred place would be my home.  We have so many reminders of Gage spread throughout our home.  We have pictures/wall hangings that allow us to remember the short time we had together.  We planted "Gage's tree" shortly after he died and have enjoyed watching it grow and planting flowers nearby, this is one of my favorite spots in our yard. #captureyourgrief #whathealsyourheart

One of my favorite signs my sister had made for me - "Because someone we love is in Heaven, there is a little bit of Heaven in our home"

Day 7: SACRED PLACE. Do you have a special place that you visit to “be” with your children? A place that you feel connected to? Maybe it is their grave, or a beautiful garden, beach or forest. What does this place mean to you? Why that place? If you haven’t got a sacred place that you visit to remember your children, maybe have a think about finding a beautiful place that you can visit to remember them. It is never too late to do this. Having a sacred space for you to visit to just be, is wonderful for your soul. It gives you some time out to just allow yourself to calm your heart and reconnect with the love that you have for your children.
Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Capture Your Grief: Day 5 and 6

Day 5: Journal

I began keeping a journal shortly after losing Gage.  Journaling was very therapeutic for me.  My journal was a place I could write anything and everything down.  Gage and the circumstances surrounding his death consumed my entire life and I didn't always feel like I had someone I could talk to.  I am glad that we are able to provide journals in each one of the kits that we donate to families who suffer the loss of a child.

Day 6: Books

I read Heaven Is For Real shortly after Gage died.  Once I started reading I couldn't lay the book down until I had completed it.  The book comforted me and I felt even more hopeful and confident about where my baby was.  I even read the version written for children to my other kids.  I looked for ways to make them understand death at such a young age but found it difficult.  It is hard enough to have to deal with death as adults but I hate that my other kids have suffered such a great loss at such a young age.  I'm glad that they still speak about Gage often but wish I could have helped them understand earlier.  Does anyone know of any good books about death geared toward small children? #captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html






Saturday, October 4, 2014

Capture Your Grief: Day 4 - Now

Today I am a different person than I was prior to the death of my child. How could I not be? I take each day as it comes.  I hate the fact that we had to bury our baby but know that it was part of God's plan for us.  One of my biggest struggles immediately after we lost Gage was not knowing why.  It was hard for me to come to terms with the fact that my "perfectly healthy" baby was found lifeless.  That is what I hate about SIDS....there is no answer....nothing to make me understand and have a little closure.  I do believe I carried Gage for 9 months and experienced 3 days here on earth with him before he returned home for a purpose.  I look forward to the day that I will see him again and my questions will be answered. 

I still struggle even two and a half years later.  I have good days and bad.  I try to keep busy with life.  I feel as though happiness is forced....it's hard to not feel guilty for being happy even though it sounds crazy.  I still cry but have gotten better at hiding it.  I feel like I always need to be in control and try to find new hobbies/goals to accomplish this.  My priorities are different.  A huge part of my life now is to keep Gage's memory alive and to help others who suffer similar losses.  #captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Friday, October 3, 2014

Capture Your Grief: Day 3 - Before

I suffered two early miscarriages prior to Gage's death.  I was extremely sad after each loss but can't compare those feelings with the emotions I felt and still feel everyday after losing Gage.  I feel like a part of me died the day I woke to find my 3 day old son lifeless. 

Before Gage I had my whole life planned out.  I always wanted to be married at a young age, finish college, and have multiple children. I was married at 18 and graduated from Nursing School 8 months pregnant with my first child.  I was happy and full of life. I truly thought that my life would play out exactly as I had planned.  I enjoyed my career as a nurse. I enjoyed my growing family. I looked forward to things.....time with family/friends, vacations, hobbies. I never thought I would lose a child, especially to SIDS.

I became a different person the day Gage died. There are parts of that person I wish I could get back.  I would never go back to that life.  Although Gage only lived 3 short days he made an impact that will last in our lives forever.  I can't imagine my life without him. #captureyourgrief #whathealsyourheart

Capture Your Grief is a mindful healing project for anyone who is grieving the death of a baby or child of any age or gestation. If you are not grieving the death of a child but a loved one and would like to raise awareness for the bereaved parents community, we welcome you to take part as well to help us spread the word about our community. For more information visit CarlyMarie Project Heal at  http://carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html

Thursday, October 2, 2014

Guest Post: Guy

Today we are lucky enough to have Guy with us Guest Posting from The Baby Butterfly Foundation - he is an amazing person who was willing to share with us all his story. Please take a moment to read his post, visit their site,  and feel free to leave comments in response on our Facebook page

Breathe In…Breathe Out…

Breathe in.  Breathe out.

As my world was collapsing all around me, I almost forgot how to do that.  As my baby girl was receiving her angel wings two rooms away in the ER, breathing became so difficult and foreign.  I couldn't find the air.

Breathe in.  Breathe out.

Two years and six months seems an eternity ago.  It's strange, but this loss is such a contradiction in time.  To think of all the kisses and hugs...the smells...the laughter and the crying...they are almost a distant memory that I struggle to hold on to.  Yet, thinking of the call...the tears...the agony...the shattering of my heart into a million million pieces...that happened just yesterday, didn't it?

Breathe in.  Breathe out.

How have we made it this far?  How did we start The Baby Butterfly Foundation for SIDS Outreach in Mia's honor?  How is it that I can share our story with so many families in the loss community?  How do I find the strength and remember to breathe?  In Him.

"He comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us.  For the more we suffer for Christ, the more God will shower us with His comfort through Christ.  Even when we are weighed down with troubles, it is for your comfort and salvation.  For when we ourselves are comforted, we will certainly comfort you.  Then you can patiently endure the same things we suffer.  We are confident that as you share in our sufferings, you will also share in the comfort God gives."
- 2 Corinthians  1:4-7

When I was asked to write a piece for God's Angels Gone Early, I didn't think twice or hesitate.  Of course I accepted the offer.  That's one of the ways I share my suffering...so that I may find some comfort.  And that I, in turn, may comfort someone else in their suffering. 

I'm not going to recount the story of the day Mia died.  If you'd like to read about it, please, by all means.  You can find it on my blog, holyghostbumps.com.  And I pray that it strengthens you.  What I am going to do, however, is try to give you hope.  If you're new to the child loss fraternity/sorority, hang on.  It doesn't necessarily get easier.  It just gets more bearable.  You remember to breathe in and breathe out...to put one foot in front of the other to string along a walk.  I haven't found the ability to run in happiness and peace again just yet.  But I'm confident that one day I will.  My faith in Christ assures me of that.

If you've been on this grief-journey for awhile, you probably have more tricks of the trade to get you by.  And what could I, a relative newcomer, have to offer?  How about a kind word and a prayer?  If your faith has been shaken by your loss, as my wife's was, I would encourage you to hang on as well.  Our Spring is coming. 

I can say beyond a shadow of a doubt that He knows where you are when you find yourself in the dark.  As I’ve told my wife so many times during those first months, call on His name.  When you can say nothing else, call on the name of Jesus.  It took a couple years, but she's not mad at Him anymore.  She has found her faith again.  Make no mistake, everything's not honky-dory.  But He's working on it.

The bottom line is this...it's hard.  It's an extremely difficult thing to bear losing your baby.  But you're not alone.  Never alone.  You have others who are experiencing the same thing.  You have family and friends (though they often say the wrong things, bless their hearts).  And you ALWAYS have Christ.

I realize that you may not believe in Him anymore, or you may never have experienced what it's like to have a personal and intimate relationship with Christ.  But I make no apologies for my faith.  It's what has carried me through all the darkness and pain.  It's what enables me to lead my wife and children.  It's what allows me to relive that fateful day each and every time I reach out to another family that loses a child to SIDS.  It's what will enable me to see Mia again.  And what a glorious day that will be!

Until then, I'll keep breathing in.  And breathing out.


The Baby Butterfly Foundation Website:
The Baby Butterfly Foundation on Facebook:

If you would like to guest post with us this month it isn't too late, please send us a message via our Contact Us page.