October: Pregnancy and Infant Loss Awareness Month

October is officially the month to raise awareness for pregnancy and infant loss.  

In 1988 October was declared Pregnancy and Infant Loss Awareness Month in the United States with a Presidential Proclamation from Ronald Reagan (see below for a short history of the month). This month is dedicated throughout the world to raising awareness of infant and pregnancy loss and to honouring and remembering babies and infants who died due to miscarriage, stillbirth, neonatal death, SIDS and all infant deaths.  {from Stillbirth Alliance}

You can read more about how this month was dedicated for Infant and Pregnancy Loss here.  Tomorrow is October 15th and there are many candle light vigils, walks and other events to honor our precious babies.  There will be a worldwide candle lighting event on Saturday October 15th...

We invite you all to join us in seeking worldwide recognition for the Month of October as Pregnancy and Infant Loss Awareness Month and October 15th as Pregnancy and Infant Loss Remembrance Day which is intended to promote the Wave of Light Celebration

 (7-8 pm in every time zone, light a candle to honor all babies who have died.)

Below are a few links to other events you might be interested in......

Infant Loss Awareness Events in the UK

Stillbirth and Neonatal Support Through SANDS (Australia)

October Activities and Walks (US)

MRW Live, Laugh, Breathe

Today I'm excited to share a guest post with you written by Kendra from MRW Live, Laugh, Breathe a blog dedicated to her daughter Makenzie Rye Webster.  Her story is so beautiful and painful.  Get your tissues ready.  Kendra also hosts these amazing service events in honor of Makenzie.  This year it will be held on the 22nd of July and it sounds like it will be a concert fundraiser.  Check out Kendra's blog for up to date information.  


Guest Post by Kendra.......

July 18th 2009 at 2:10 am
Makenzie Rye Webster was born.
This tiny 6lb 19 1/2 inch. beautiful girl.
As soon as they placed her on my stomach her eyes popped open.
Her arms stretched out and she was here.
She never cried.
She was just happy to be alive.
Everything was perfect.
She did amazing the first 2 months of life.
During that time we went swimming, took a road trip to bear lake, took a road trip to the cabin down south, lots of walks, lots of shopping trips, lots of restaurants, lots of parks, lots of sun, lots of smiles, lots of friends, lots of family, lots of pictures lots of loves, lots of visitors.
She was our pride and joy. Life happily revolved around her. She completed our family and made it a dream come true.

At 2 months Makenzie started to breathe a little funny. She was making a squeaking noise and acting like she was working a little harder to breathe. Her pediatrician kept assuring us it was normal and that she would grow out of it. By the first part of October she started having spells where she would lose her breath and be gasping for air. After the second time she did this we rushed her to the children's hospital. We ended up spending the night and checked out the next day with no answers. They couldn't find anything wrong. As the next couple weeks went by it was almost daily that we were calling her pediatrician saying she isn't getting better and is almost getting worse. During this time she also started eating less and less. She didn't seem hungry. I was nursing until the beginning of Oct. when she completely quit. At the time we didn't know why but found out later it was because she didn't have any strength to suck but a bottle was easier for her.

The first week of November she seemed really bad so we took her to her pediatrician who said she didn't look right and referred us to an ENT (ear nose throat)doctor at Primary Children's Hospital. After we meet with the ENT he decided to try surgery for what he thought was laryngomalacia. They cut away a flap of skin in her throat and hoped it was the cause of her difficulty breathing and eating. After surgery we stayed at PCMC for 2 nights before we were able to go home. After we got home our little girl seemed to keep getting worse. She wasn't eating hardly anything and was only wanting her Mom. She would only lay in one position and would cry if you held her any other way. Her doctors assured us it was just because she is having trouble after surgery and that she should be fine soon.

On November 17th my mom was babysitting her while I went to work. I got a call half way through the day from my sister, who was with them, telling me Makenzie kept turning shades of grayish blue. She was worried about her and said she thinks I should take her to the doctor. I left work and took Makenzie to the ER at IMC. I decided if I went to a hospital like that and she really needed to be admitted they would take us by ambulance and she would be seen sooner. AND. That's exactly what happened. They hooked her up to the pulse ox. and her oxygen levels were in the 70's when they should be no lower than 90. They put oxygen in her nose and rushed her in an ambulance to PCMC. Ryan (DAD) meet us there. They admitted her to the 3rd floor for testing. Her weight had dropped to 8 lbs. At her 2 month apt she was 9 lbs. She was extremely dehydrated and malnourished.

For the next 2 days they ran hundreds of tests. We were hardly ever in her room because we were going from one xray, to one mri, to another test. They had to keep turning her oxygen up because she kept dropping. On November 19th a team of specialists came into Makenzies room. By this point she was having so much trouble breathing she was laying on her side and arching her back so much her little head was touching her back. She was trying to get air anyway she could. As I stood next to my little girl that day trying to catch words I could understand in that doctor lingo being thrown around I felt alone. I was scared. This whole time I kept thinking she would be fine, there is just some medicine she needs to get put on and everything will be okay. That day was the first day I was completely unsure.

Within minutes the neurologist order for Makenzie to be transported to the PICU and intubated. Everything was thrown in her crib, I grabbed my bag and we were off. Down to the second floor. We were greeted by Ryan (who raced up there as fast as he could) and a team of doctors and nurses ready to help Makenzie. They asked Ryan and I to go out of the room while they intubated her. We sat out in the hall trying to digest everything that just happened. We were scared. In a matter of minutes we had to mature enough to understand our daughter was in the hospital, intubated and not sure whats wrong with her. We are young and this shouldn't have happened to our family. We haven't lived yet, we haven't showed our little girl the world yet.

After we went back in the room we were amazed at the difference in Makenzie. We were with her every second of the day the past few months. It was hard for us to really see how much she was struggling to breath until we saw her breathing with ease. We both broke down. It was so beautiful yet so horrible. We held her little tummy that was so small her skin was just hanging there. We kissed her millions of times and rubbed her little arms and legs.

The next few days were filled with tests... tests... more tests... and introduced to the wonderful new world of CPT and cough assist. Since she had this breathing tube in, she was unable to move around her secretions like the rest of us. When you cant move around secretions they build up and your lungs start to collapse. Every 3 hours were these treatments and every 3 hours Makenzie hated life.

It was on November 21st that after many test we were told Makenzie has whats called Spinal Muscular Atrophy = SMA.
They had to send in a blood test to confirm but all other test pointed to SMA.
We were devastated.
We were told right up front there are different forms of SMA and she may not have the more sever case and could live a fairly normal life. We understood no matter what type she had she most likely would never walk, run, dance, sit up... SMA is a degenerative disease which would mean at some point -whether it be at 1 year or 20 years she would lose everything and become paralyzed. Her brain however- would always be perfect. SMA doesn't effect the brain so she would have the brain of any other one her age. We did research. We talked to other families with SMA. We prepared ourselves for life with SMA. In order for us to do this financially we put our house up for sale, Ryans truck, We listed most all of our things online to sell, I even told my boss I wasn't going to come back to work and to find a replacement. At the time we felt we were given this new life and although its not like we imagined and dreamed we were going to take life by the horns and run with it. We realized our dreams have changed and as long as we have each other nothing else matters.

November 30th 2009. Makenzie was scheduled to be extubated. They thought we could take the breathing tube out and make it the first step in getting our girl home. That morning was amazing. Kenzie and I kept counting down the hours and minutes until she was tubeless. Anticipating being able to hold her whenever I want and spin in circles with her, kiss her lips! As they extubated her she became distressed. Her levels started dropping. The doctors kept saying she just needed to calm down and take a breath. I was pretty much laying in the crib with her. I was holding her face and stroking her arms. I kept telling her to just breath and that she is okay. I tried to reassure her that she is doing a good job and that I'm here. She wouldn't stop looking at me. Her eyes will forever be in my mind. She was struggling, hurting and I wasn't helping. She was scared. I kept asking if they could do something for her. What felt like hours but only minutes passed when they said she isn't ready and that they needed to intubate her. They rushed me out of the room and began putting that damn tube back down her throat.

Makenzie tried. She was trying so hard that day. She wanted to breath, she wanted to be held without tubes. She worked harder than anyone could have worked but her body just couldn't do it. I am so unbelievably proud of her. I am so honored to have a daughter who is so strong. After they let me come back in I just kept telling her how amazing she is. I kept kissing her and telling her that I was proud of her.

December 1st- SMA blood results came back- NEGATIVE.
Happy, sad, scared, relief, frustrated, concerned, unsure, angry- were just a few emotions that day. No SMA but we didn't know what that meant- better or worse.
Her team of specialists took a step back that night- they went through all of their paperwork and her tests and said they would be back the next day with somewhere to go.

December 2nd. Makenzie was schedule for a test. They did an xray of her chest. They watched her diaphragm. It worked perfect while the machine was on, but as soon as they turned it off, her diaphragm didn't move. Its paralyzed.

December 2nd. 2 amazing doctors sat me down. They told me those words.
Spinal Muscular Atrophy with Respiratory Distress = SMARD.
Its similar to SMA but different which is why the test came back negative. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It effects their breathing first (paralyzed diaphragm) and then moves to the rest of her body. Its a very new disease. Only being tested in the US within the last 6 months. Before that it was only tested in England. There is no research being done solely on SMARD. They know almost nothing about it. They know what gene it comes from, they know both parents are carriers. Every child is different and since its so new and so little people with SMARD they don't know exactly what she would or wouldn't be able to do in the future. What they do know is that she would need to be trached and on a ventilator 24/7 for the rest of her life. She would need 24 hr care which would mean a home nurse. At that moment she is at the best she would ever be. She wouldn't learn to walk, crawl, sit, run, sing, dance. She would slowly be deteriorating right before our eyes. They refer to this disease as the Lou Gehrig disease in infants.
We were given a few horrible, unimaginable- no parent should have to decide options.
- leave Makenzie in the hospital on life support until her body gives up on its own
- trach and vent her. bring her home and slowly watch her go. she most likely would be completely paralyzed before age 1.
- take her off life support and let her go.

immediately i said i don't care what i have to do, give up and learn i will be bringing my daughter home and taking care of her. i didn't want to hear anything else. i only wanted her. i didn't care if she could walk or talk i would not love her any less. she would be here and that's all that mattered. ryan had a different plan in mind. for the first time through this whole ordeal we were not on the same page. he sat me down and said- we will do whatever is best for makenzie. she has to decide. if she isn't ready to go, than we will trach and vent her and take her home. we will dedicate our life to her and never look back. but. if she is ready to go, we have to. she has completed her journey in life.
this is her life.

over the next few days our world was completely turned inside out. most everything is a blur. we loved on makenzie every second. we told her stories and we talked to her. every morning i would come to her bed- give her kisses and ask what she wanted.
after a few days- in the middle of a cpt/cough assist- my answer came. i looked into my daughters eyes and felt like she was talking to me. she told me she was done. she said she completed her journey, she did what she was suppose to do and she was ready to be free.
i couldn't tell anyone for a few more days. i finally told ryan. he said he already knew. she told him right after we found out she had SMARD. we wouldn't tell family or friends or even the doctors. we weren't ready to face our reality. we wanted to give her everything we could while she was still here. we read her books, i told her all the stories i planned on telling her when she got older, we played, we smiled, we laughed, we sang, we loved each other unconditionally. we decided we would take her off life support on December 13th at 7:00 pm. A few days before we talked to her doctor and asked if Makenzie could be a donor. We told a few family members and one friend. We asked for no visitors the Saturday before and no visitors that Sunday morning. We asked Ryans parents and my Mom to come to the hospital on Sunday at 5. Be with her for a few hours and be with us while she went.

December 12th we gave Makenzie her first Christmas. We had a tree, we played Christmas music, we gave her a present and we wrote her a letter. We held her all night.

December 13th- minutes after our parents came in the room Makenzie started to make a funny noise. I asked Ryan to get the nurse who rushed in. She ran back out and started yelling at the doctors that her breathing tube was out. A team of 20ish doctors and nurses came running. The on call doctor looked at me and said- are you ready? Her tube was already out.
I tried to take a breath and said okay.
I held my little girl. I squeezed her tight. Ryan held us both. We kept telling her that we were there. We told her we love her. We promised we would be with her again.
and then- our world, our life, our reason, our future... took her last breath.
Makenzie Rye Webster born July 18th 2009 at 2:10 am went back to heaven on December 13th 2009 at 5:25 pm.

She is our life- She is everything we are. Everyday is a struggle. We miss her beyond words. We ache for her daily. Our arms are heavy without her in them. We vowed to keep her alive. She did so much good in this world. She changed so many lives and she continues to do so with her story. There is so much more- so many more things that happened in the hospital but these are the main points.
I never left her side. I lived at PCMC from November 17 - December 13. I never left. I ate, slept and showered there. I wouldn't leave her side. I was able to hold her very little. They had to restrict her movement so anytime I could hold her was very short and I couldn't move. It didn't matter though- those were the greatest moments of my life.
She is our world. She is our future. She is our everything and we will live for her for the rest of our lives.

We have decided every year for her birthday we will give back. Last year we had the 1st annual MRW Live, Laugh, Breathe Event.  We had a huge carnival complete with entertainment, a killer silent auction, DJ, games, boutique, food and loads of activities.  It was amazing. Hundreds of people came and we raised well over $15,000 for the Gwendolyn Strong Foundation to support SMA research.

I started going around to different groups talking about SMA/SMARD and encouraging others to give to the Gwendolyn Strong Foundation. I have been doing that more for the awarness. To help others understand what this is and get that ugly name out there.

A beautiful group of girls decorated a tree for the festival of trees in Makenzies name. They were able to raise $800 for the hospital Makenzie spent the last month of her life at.

I started the Kenzie Baby Legs project early last year.  I collect socks to make into leggings or already made baby leggings to donate to Primary Childrens Medical Center. We collected over 1500 pairs last year and took them to the hospital on Makenzies Angel Day.

I have a million different ideas. More projects coming. I want others to know Makenzie. Know the amazing spirit she is and I that she was so good. I want to give more good so that one day I can be half the person my daughter is and maybe she will be proud of what I have done.

You will have to check out what we will be doing this year!!! 

Keep July 22 open :)

Thank you so much Kendra for sharing Makenzie with us!  I am sure she is so proud of her mom and the amazing things you do to honor her life!

Running With Angels

I wanted to let everyone know about a great event coming this May on the 21st.  It's the Running With Angels 5k Run/Walk.  They are raising money for Angel Watch, a non-profit program that helps support bereaved families that have received a life-threatening or life-limiting diagnosis for their unborn child.  It's a wonderful cause and I know that so many families and hearts have been touched by this program.  This event is hosted by Pam Hansen, the author of Running With Angels.  It is a beautiful book written by a woman that suffered the loss of 2 of her children and how she overcame her despair and grief through running.

So if you are in the Salt Lake City area around May 21st, be sure to come out and run!

Saturday, May 21, 2011
Race begins at 8 am

Thanksgiving Point Gardens
Lehi, Utah

Registration Fee

• $20 through May 7th 
• $15 children under 14 through May 7th 
• $30 for all ages thereafter until slots are full
• $10 per bib “In Honor or Memory of” a friend or loved one

Packet Pickup

Runners are encouraged to pick up their packets on Friday, May 20, 4-7 p.m. at Utah Valley Regional Medical Center, Northwest Plaza, Clark Auditorium, located at 1134 North 500 West in Provo. You can also pick up your packet near the starting line on race day beginning at 6:30 a.m.

Chance to Win a Guaranteed St. George Marathon Entry

Share your inspirational story for a chance to win a guaranteed St George Marathon entry. Please email your story to Dennis Morganson.

About the Race

This run is inspired and hosted by author and inspirational speaker Pam Hansen. Read about Pam’s amazing story of turning personal tragedy into triumph in the book Running with Angels.

Come enjoy a run/walk through the beautiful gardens at Thanksgiving Point. Start/Finish line will be in the parking lot near the Children’s Garden entrance. Registration includes T-shirt, water bottle, food and drinks at the finish, and giveaways. Although times will be recorded and posted, medals will be given only for 1st, 2nd, and 3rd place overall. All participants over the age of two should be registered and wearing a bib number. Strollers are allowed.

For more information call: (801) 357-7600

March of Dimes March for Babies

I just wanted to remind everyone about the great even that the March of Dimes puts on every year.  It's the March of Dimes March for Babies.  The money raised goes toward a great cause!  Here is what the March of Dimes website says about their walk.....

Why We Walk

When you walk in March for Babies, you give hope to the more than half a million babies born too soon each year. The money you raise supports programs in your community that help moms have healthy, full-term pregnancies. And it funds research to find answers to the problems that threaten our babies. We’ve been walking since 1970 and have raised an incredible $2 billion to benefit all babies.

What to Expect

This year, more than 7 million people will join their family, friends and colleagues in 900 communities across the nation. Our volunteers and staff will encourage and support you in your efforts to raise awareness and funds. No matter if this is your first year or your 25th, you can expect the event to be fun, compelling and rewarding.

Want to find an event in your area you just need to click on your state.

For those of you in Utah I've listed the locations below....

Weber-Davis County
May 7, 2011

Layton Commons Park

437 N. Wasatch Dr.

Layton, UT 84041 

Walk Distance: 3 miles
Registration Time:  9:00 AM
Start Time: 10:00 AM
Chapter:  Utah
Phone:   (801) 746-5540 

Logan March for Babies
May 21, 2011

Willow Park

419 West 700 South

Logan, UT 84321 

Walk Distance: 5 miles
Registration Time:  9:00 AM
Start Time: 10:00 AM
Chapter:  Utah
Phone:   (801) 746-5540 

Utah County March for Babies
April 30, 2011

Canyon View Park

1.5 Miles Up Provo Canyon

Provo, UT 84601 

Walk Distance: 3 miles
Registration Time:  9:00 AM
Start Time: 10:00 AM
Chapter:  Utah
Phone:   (801) 746-5540 

Salt Lake City
May 14, 2011

This Is The Place Heritage Park

2601 East Sunnyside Ave.

Salt Lake City, UT 84108 

Walk Distance: 3 miles
Registration Time:  9:00 AM
Start Time: 10:00 AM
Chapter:  Utah
Phone:   (801) 746-5540 

Raising Money for Sufficient Grace Ministries

I'm sure you all know Holly from Caring for Carleigh.  If you don't, you can check out her spotlight on Honoring Our Angels.  Holly has a goal to raise $2000 to go toward Sufficient Grace Ministries.  She has blogged all about it if you want to read more about why.  She is currently accepting donation items to auction off to meet that goal.  The auction will take place on April 6-8th on her Caring for Carleigh facebook page.  You won't want to miss it.  If you have anything to donate for the auction or if you'd like to make a monetary donation you can do that from Holly's blog.

Here's a little bit of information about Sufficient Grace Ministries taken from their website so you can know the great cause that the donations will be going towards....

Sufficient Grace Ministries for Women, a 501 (c ) 3 non-profit, non-denominational Christian organization, was founded in 2004 by Kelly Gerken with the purpose of reaching out to women and families to offer comfort, encouragement and hope. The Dreams of You division of this ministry was created specifically to provide comfort to women and families who have lost a baby through miscarriage, stillbirth, or infant death. 

Kelly has experienced the loss of twin daughters (Faith and Grace) at 26 weeks and the loss of an infant son, (Thomas)who died shortly after birth from Potter's Syndrome. From her own family's journey of grief and healing, Kelly has created the Dreams of You Memory Book and other beautiful support materials to help families form a precious memory for their babies who leave this earth too soon. 

You can read more about Kelly's story of Faith, Grace and Thomas from the Sufficient Grace Ministries website and click on Our Story.

Below are some the the gifts that they offer bereaved parents.

Dreams of You Memory Book By Kelly Gerken

The Dreams of You Memory Book was created for mothers and families who have lost a baby. This book comes in an 8 by 11 ½ inch hardcover, antique leather bound-look binder format so it is easy to add or change the book to match a parent's unique beliefs, tastes, and wishes. It includes places for parents to journal the dreams they had for their baby, their journey of loss and healing, letters to baby, pages to record the baby's statistics, memorial service, baptism, footprints, mementos, etc. Also included are inspirational poems and comforting scripture from the Bible, as well as the author's personal story of loss, grief, hope and healing.

Comfort Bear

These beautiful, cream-colored, soft fleece Comfort Bears were created by Kathy Rutter in 2005 for grieving mothers to have something to hold to ease the ache of empty arms. Kathy created each one with a grandmother's love and prayers. After a valiant battle with cancer, Kathy went home to heaven in October of 2006. Today her legacy continues as the Helping Hands Ministry gathers to sew the bears, sending a grandmother's love and prayers along with each one.

Baby Gowns

We now offer beautiful satin burial gowns for the precious babies who leave this earth too soon. Sizes range from a baby 12 inches to a full-term newborn size. The back of the gowns are open for easy dressing and the sleeves and bonnets gather with a tie to help ensure the perfect fit. The gowns are also excellent to have at the hospital for precious photograph keepsakes of baby and family.

Be sure to check out Holly's Blog and support her goal.  Make sure to stop by Sufficient Grace Ministries website and blog and see all the beautiful things they offer!

Random Acts of Kindness Week

Happy Valentines Day!  I hope you all get a bit spoiled and feel loved!  I also wanted to point out that this week is Random Acts of Kindness Week, February 14-20th.  What better way to honor your sweet angel then to do an act of kindness on their behalf.  Do you remember the Service Cards?  

Feel free to print them, share them, and spread the word.  At the end of the week I'd love to share stories that you send me about all you have done to spread love and kindness throughout the world.  What a fantastic way to love others!!!

Check out the website The Random Acts of Kindness Foundation.  They have lots of great ideas and stories that can help inspire you and your friends and family to share the love.  Remember your acts of kindness do not need to be huge.  Small things make a big difference in lives and can change hearts.  Just to know someone cares means the world.  Take their Extreme Kindness Challenge.

Christmas Box Angel Candlelight Ceremony on December 6th

On December 6th around the world Children's Day is celebrated.  It also is the day of the Christmas Box Angel Candlelight Ceremony.  The Christmas Box a bestselling book and movie was written by Richard Paul Evans.  Below is information taken directly from Richard Paul Evan's website about the Angel Monuments and how December 6th became a day to honor our angels.

Picture is from www.richardpaulevans.com

Angel in Salt Lake City, UT

Angel in South Bend, IN

The Christmas Box Angel Statue was introduced to the world in the book The Christmas Box, a worldwide bestseller and hit television movie by author Richard Paul Evans. In the book, a woman mourns the loss of her child at the base of an angel monument. Though the story is mostly fiction, the angel monument once existed but is speculated to have been destroyed. The new angel statue was commissioned by Richard Paul Evans, in response to reports that grieving parents were seeking out the angel as a place to grieve and heal. The monument was dedicated on December 6, 1994-corresponding with the date of the child’s death in The Christmas Box

(Coincidentally, Dec. 6th is celebrated in many parts of the world as Children’s Day). At the request of Sexton Paul Byron and Salt Lake City Mayor Deedee Corradini, Salt Lake City donated the land on which the monument stands. The sculpture is the creation of a father and son from Salt Lake City, Utah, Ortho and Jared Fairbanks, and modeled according to the description in Evans’ book. The face of the angel is that of Evans’ second daughter, Allyson-Danica. If you look closely you can find on the angel’s right wing (west) the word “hope.”

Flowers, sent from around the world, adorn the base of the monument year round, accompanying notes left by parents for their “little angels.” On December 6th of each year (7 p.m. MST) a candlelight healing ceremony is held at the base of the Christmas Box Angel monument. After a few remarks, a moment of silence, and the lullaby of a children’s choir, the attendees are invited to leave a white flower at the base of the angel statue. The public is welcome.

In addition to the angel in the Salt Lake City cemetery, there are Christmas Box Angels in more than 25 other areas erected by great people just like you. Furthermore, there are nearly 100 in the works, and at least a dozen of these have dedication dates. To retrieve the complete list and get directions to the angel statue sites, click here.

Angel in Binghamton, NY

For more information about the Angel Statues and how you can have one placed in your area click here.

Angel Tree

A wonderful article written by the Salt Lake Tribune about an amazing service provided by an angel mom Heidi in honor or her daughter Jocelyn.  

Angel tree helps grieving family through holidays

Read the article here.
Find out more about the Festival of Trees here.

December 12th

December 12th is the worldwide candle lighting for those that have suffered the loss of a child.  

This event is sponsored by The Compassionate Friends.  

To find a location near your click on the link here.  Check back often as new locations are being added daily.  Would you like to host a candle lighting event?  Is so click here.

This information about the Worldwide Candle Lighting Event was taken from the Compassionate Friends site. Either click on the link or read below.

Excitement has been building as the fourteenth Worldwide Candle Lighting December 12, 2010 approaches. The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor the memory of children in a way that transcends all ethnic, cultural, religious, and political boundaries.

Now believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

The Worldwide Candle Lighting started in the United States in 1997 as a small Internet observance but has since swelled in numbers as word has spread throughout the world of the remembrance.

In 2009, information was submitted to TCF's national website on services in 15 countries outside the United States. In total, we received nearly 530 services. TCF has been joined in recent years by chapters of several organizations including MISS, MADD, Parents of Murdered Children, SIDS Network, Gilda's Club, and BPUSA and services were held in all 50 states plus Washington D.C. and Puerto Rico. There is no way to know how many hundreds of additional services were held in the U.S. and around the world without the information being to us.

The Compassionate Friends and allied organizations were joined in 2009 by local bereavement groups, churches, funeral homes, hospitals, hospices, children's gardens, schools, cemeteries, and community centers. Services have ranged in size from just a few people to nearly a thousand.

You are also invited to post a message in the Remembrance Book which will be available during the event at TCF's national website. Last year in that short one day span, thousands of messages were received and posted from every U.S. state and Washington D.C., every territory, as well as dozens of other countries, some in foreign languages.  You are welcome to view last year's Remembrance Book below.

2009 WCL Remembrance Book

Here in the United States, publicity about the event is widespread, being featured over the years in Dear Abby, Annie's Mailbox, Ann Landers column, Parade Magazine, Guideposts magazine, and literally hundreds of U.S. newspapers, dozens of television stations, and numerous websites and hundreds of personal blogs. Information on the Worldwide Candle Lighting and planned memorial candle lighting services (of which we are advised) is posted on TCF's national website every year as the event nears.

If no Worldwide Candle Lighting service was held near you in 2009, please feel free to plan one open to the public this year. You are welcome to use TCF's "Suggestions to Help Plan a Memorial Service in Conjunction with The Compassionate Friends Worldwide Candle Lighting©" to help in planning the service. All allied bereavement organizations, churches, funeral homes, hospices and formal and informal bereavement groups are invited to join in the remembrance. Don't forget to return to this site later this year before the Worldwide Candle Lighting and submit the event information form so TCF can list your service with the many hundreds held in the United States and around the world. The Worldwide Candle Lighting gives bereaved families everywhere the opportunity to remember their child . . . that their light may always shine! 

Time and Grief

I really enjoyed this article that was featured in the Grief Watch newsletter and thought I'd share.

he Newsletter

FROM THE DIRECTOR OF GRIEF WATCH By Pat Schwiebert, R.N. What does time have to do with grief? Everything. Just consider how, in “normal life,” our lives are run by the clock and the calendar. Some of us have a clock in every room so we can keep close track of the time. Few of us have the courage to live without wearing a watch because we’re afraid we might be late for something. Time is precious to us. We live in a society that reminds us that every moment counts, and some of us are masters at cramming as much activity as possible into every moment. And when we are grieving our experience still has much to do about time. Time stands still. When we are grieving we may feel like the rest of the world is going on as usual while our life has stopped. Just last week, after my friend died, I passed a neighbor watering his lawn. He seemed totally unaffected by, and most likely unaware of Sarah’s death. How could that be? He only lives a block away. Didn’t he feel the same shift in the universe that I felt when she died? Doesn’t he realize someone really special is missing? Time’s up. Most people will allow us about a one month grace period where we are permitted to talk about our loss and even to cry openly. During this time our friends will probably seem to be attentive to our needs. But when the month is up they may be thinking, if not actually telling us, that it’s time to move on, and that we need to get over “it”. They want us to get back to normal. We may be surprised how many of our friends (and relatives too) will become uncomfortable with our need to dwell on our sorrow. They may not appreciate that it takes time to readjust our life to the loss. Maybe what they are really saying is, “Time’s up for me to be able to be present to you in your grieving time.” Because of this we may need to redefine what is normal for us, and choosing some new best friends—friends who are willing and able to walk along side us on our personal journey of grief, and who will allow us to determine when our “time’s up”. Doing Time. Grief may make us feel imprisoned in our own version of hell. We won’t like who we are. We won’t like it that our loved one has gone. We won’t like it that our friends can’t make us feel better. We just want out of here, and we’re not sure we want to do the work that grief requires in order to be set free from this bondage. Some of us will remain in this uncomfortable place for a short time while others of us may feel like we have been given a longer sentence. Wasting time. Though in real life I pride myself in being a master at multitasking, in the land of grief I’m much less sure of myself. I find it hard to make decisions because, in my new situation, I don’t trust myself to make the right choice. I want someone else to be responsible if something goes wrong. Sometimes my wasting time is about not having the energy to get started. I am physically exhausted and my body refuses to make an effort to reclaim my former self. And I admit, quite frankly, that I’m not sure I even care enough about anything to make the effort. What’s the use, since it seems like everything I love sooner or later gets taken away from me. Looking back in time. When we grieve we spend most of our time, at least at first, looking back. It seems safer that way. That’s where our missing loved ones are. If we were to look forward, that would mean we would have to imagine our lives without those we have lost. And that’s what we aren’t ready to accept--not yet. So we spend a lot of time thinking how we should have been able to prevent their dying, or wondering if we used our time with them well, as we remember the good times, bad times, silly and sad times. We think we have to keep those memories in front of us, or surely we will forget those whom we have lost. First times. It is natural for us to gauge our life after a loss as we anticipate and then go through the first times --first day, the first week, the first month, the first time we venture out in public, the first time we went back to school, or church, or work, the first summer, the first Christmas, the first vacation, the first time we laughed. These first times are like benchmarks, notches in our belt that prove we are surviving when you weren’t sure we wanted to, or didn’t know we could. Dinnertime. There’s an empty chair at the table. There’s the conversation that seems to be just noise, having little to do with the absent one about whom we are all thinking but not daring to speak. We still prepare more food than we now need because we haven’t yet figured out how to cook for one less person. Sometimes the food seems to have no taste, and is not able to do what we want it to do--to fill that huge hole within us. Time out. Sometimes what we need to do is to take a time out from our regular activities to reflect on what has happened to our personal world, as we knew it before our great loss. To do so is not to run away from life but simply to realize that to act as if nothing has happened doesn’t work. This loss is too big to allow us to pretend that it hasn’t had a big impact on us. It’s in the quiet time, when we shut off our thinking, and empty out the chatter in our head that the healing begins. Others will have to be okay with our need to bow out for a while. Remember that during grief our job is to take care of ourselves, not to take care of our friends. When it’s time to re-enter a normal routine, it’s our choice what we will reinstate and what we decide to lay aside. Loss tends to redefine our priorities. What used to be important may not be as important now. And that’s not necessarily a bad thing. Time heals what reason cannot. In the end, time will change things. The intensity we experience when grief is new, where we can see nothing but our loss, and where every moment is filled with thoughts of the one who died will gradually diminish and become softer. Time forces the big picture of life back into our vision whether we like it or not. This happens in our lives all the time. Remember how when we first fell in love with someone, we were totally preoccupied with only that other person, until gradually a more balanced existence was restored. Or when we did (what we thought was) some terrible thing and we were sure everybody would never let us forget it, we came to find out a few months down the road that most people had forgotten the incident. In the months (maybe years) following a loss, life will eventually start to re-emerge, and life on this planet will once again seem possible. This will not happen because we come to understand the death more clearly but because, with the passage of time, the unanswered questions will become easier to live with. Time will not remove grief entirely. The scars of our grief will remain and we may find ourselves ambushed by a fresh wave of grief at any time. But needing to know the answers to the “why” questions won’t seem quite so important as it once was. Time is a gift that we have taken for granted. We’ve been given our lives one moment at a time. This is good. Peace to you. Pat Schwiebert - Director, Grief Watch

A Walk to Remember

This Saturday, October 16th from 1-3 pm Share of Utah is hosting a remembrance walk. This will be held at Larkin Sunset Lawn on 2350 E. 1300S. Salt Lake City, UT

Share is a non-profit organization that offers support groups for those that have experienced pregnancy and infant loss.

Check out their website for more information about Share.

Check out their Facebook page as well. You can also join their event through Facebook here.

October 15th

October 15th is Pregnancy and Infant Loss Remembrance Day. This day is to promote The Wave of Light Celebration. From 7-8 pm in every time zone light a candle in honor of all babies that have died.