I wanted to share this bit of inspiration with you. I love this quote!
Source: Joy's Hope
I gave five stars to every one of these books
9 months ago
Friday, April 29, 2011
Wednesday, April 27, 2011
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.
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!
Monday, April 25, 2011
National Infertility Awareness Week
Today is the first day of Infertility Awareness Week April 24th-30th. Infertility in itself is such a huge grief. RESOLVE is the organization that is hosting this week. You can go to their website to find out more about National Infertility Awareness Week. Below is a little information from their website.....
It’s here -- National Infertility Awareness Week®!
Every year, we start the first day awaiting the big parade celebrating the courageous people who struggle with infertility. Oh, wait, there is no parade. But there has been tremendous “buzz” about NIAW this year; all of us at RESOLVE have felt the momentum building for many weeks.
The staff, volunteers, corporate sponsors, and members of our community have been working hard to make National Infertility Awareness Week a success. So, what does success look like?
With this year’s theme, “Bust a Myth,” our goal is to make the conversation between the infertility community and their friends and family much easier. If our collective efforts teach people that saying “just relax” is not going to cure infertility, then we’ve had success.
No matter how big or intimate your National Infertility Awareness Week recognition is, we appreciate your efforts!
Check in every day this week to the official web site, on our Facebook page, Twitter, and our Online Community for the latest on National Infertility Awareness Week. We will have a special wrap-up email on May 4 so please stay in touch!
Friday, April 22, 2011
The Sudden Unexplained Death in Childhood Program (SUDC)
I wanted to share another resource with you, it's The Sudden Unexplained Death in Childhood Program (SUDC). They are an international organization for those that have lost children over the age of 12 months to unexplained causes. This is what the SUDC website says about the history of their organization...
In 1999, a small group of parents affected by unexplained toddler death attended a presentation at the SIDS Alliance national convention in Atlanta, GA. The presentation by Dr Henry Krous was entitled "Post-Infancy SIDS- Is it on the rise?" Following the presentation, Dr Krous agreed to review the childrens' records of those families present to learn more about them. Over the following two years, more families who had experienced an unexplained childhood death were discovered and the beginning of the San Diego SUDC Research Project began
Laura Crandall, a Neurological Physical Therapist by training, and Chelsea Hilbert, an ER Social Worker by training brainstormed together to create the mission of The Sudden Unexplained Death In Childhood Program. A proposal was submitted to the CJ Foundation for SIDS to support this new program and it was granted. The CJ Foundation for SIDS is a U.S. national non-profit 501c-3 health organization meeting the needs of the SIDS community though funding SIDS research, support services and awareness programs.
In the fall of 2001, as part of the CJ Foundation, The SUDC program was created to be a centralized resource for Sudden Unexplained Death In Childhood providing information, support, advocacy and research. Each year, the SUDC Program provides more support services to more and more families. The program is entirely run by private donations to the CJ Foundation that are designated to SUDC.Their Mission Statement......
The Sudden Unexplained Death In Childhood Program (SUDC) was created in September 2001 within the CJ Foundation for SIDS. It is tasked with providing a centralized resource for information, support and advocacy. It serves families and professionals affected by the tragedy of SUDC, and promotes awareness of SUDC in communities.
Sudden Unexplained Death in Childhood (SUDC) is… the sudden and unexpected death of a child over the age of twelve months, which remains unexplained after a thorough case investigation is conducted. This must include: examination of the death scene, performance of a complete autopsy, and a review of the child and family’s medical history. SUDC is a diagnosis of exclusion - given when all known and possible causes of death have been ruled out.If you would like more information about the SUDC Program visit their website for events, research projects and their newsletter.
Wednesday, April 20, 2011
No Foot Too Small
I wanted to share this beautiful piece of jewelry made by Traci at Silverlime. This is one of my favorite quotes and it was printed on our daughters funeral program. If you'd like to have one made for you then click on the Silverlime picture on my sidebar and it will take you to Traci's website. You can have a necklace made with this quote or any that you'd like. I just love Traci's work!
Monday, April 18, 2011
Center for Loss in Multiple Birth (CLIMB)
I wanted to share another resource with you, CLIMB (Center for Loss in Multiple Birth). This is what their website says about their mission....
Welcome to the website of CLIMB, the Center for Loss in Multiple Birth, Inc. We are parents throughout the United States, Canada, Australia, New Zealand and beyond who have experienced the death of one or more, both or all of our twins or higher multiples at any time from conception through birth, infancy and childhood. We originated in 1987, when a mother whose twin son died very suddenly at birth believed that she was truly the only one – then began to search for "a few" others. Soon, she was hearing from families everywhere who were struggling to cope and heal from the devastating loss of their twin or twins, their triplet or triplets or other higher multiples, in a wide variety of circumstances – in sad contrast to the happy images of multiples portrayed in the media and elsewhere.
At a time when the number of multiple pregnancies has increased dramatically, our mission is and has always been to ensure that none of us who have found ourselves on the tragic side of the higher risks for twins and higher multiples needs to feel truly alone or like the only one, no matter what the loss or the circumstances. We do this by ensuring that bereaved multiple birth parents have the same opportunities other bereaved parents need and want: to read materials that relate to what we are going through – to talk to others who we know truly do understand – and to gain information that in some way relates to our loss and the challenges we are facing as people and as parents.
In the process, we’ve found that by speaking up about our experiences and their immediate and long-term impacts on us, it helps the public to learn the real extent of twin loss and higher multiple loss, and the importance of making all possible efforts toward prevention of them. It also helps relatives and friends, and caring others such as health care professionals, twins and multiples clubs and loss support groups learn how they can offer the most meaningful support.
We hope you will benefit from our site, and you are welcome to be in touch with us.
Check out CLIMB's website for additional support and information on multiple birth loss.
Friday, April 15, 2011
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.
Saturday, May 21, 2011
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
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
Thursday, April 14, 2011
Ramblings of a Grieving Mother
I saw this article written by Corinne O'Flynn on the Rowan Tree Foundation and loved it and wanted to share. It's raw and full of intense emotion and I'm sure so many of us can relate.
| Ramblings of a Grieving Mother |  |  |  |
| WRITTEN BY CORINNE O'FLYNN |
Do you know me? I used to be so cheerful, the proud owner of an easy smile. I was optimistic and upbeat; pointing out the silver lining behind each of the dark and looming clouds. I was walking across the bridge into motherhood, and felt full of dreams for this baby that was growing inside me, our baby, my baby.
Do you remember me? I used to love going out with my friends, chatting on the phone, hanging out doing nothing, dishing over the gossip columns. I was the one who laughed the hardest when we saw that show together. I was the one who would spend hours shopping with you to find that perfect dress for your special event.
I was the one. I was.
Do you remember me? I used to love going out with my friends, chatting on the phone, hanging out doing nothing, dishing over the gossip columns. I was the one who laughed the hardest when we saw that show together. I was the one who would spend hours shopping with you to find that perfect dress for your special event.
I was the one. I was.
Then my baby died and everything changed in that moment. When my baby died, that person I used to be died too. I just vanished into a cocoon of self preservation, learning how to survive the incredible pain. I didn't ask for this to happen, who could? I also had no idea I would lose so much of myself to this. Not unlike a butterfly whose metamorphosis happens while safely tucked away, I emerged completely changed. Unrecognizable.
When my baby died a part of me was torn away. My happiness went on hiatus; my optimism took the first train out of town. My smile disappeared. My soul became brittle and felt like it would just shatter if anything touched too forcefully. My skin tingled with a strange numbness as I walked around as this new person in this new life. I was a stranger, even to myself. Feeling weighted by a heavier outlook, I find myself in the mirror and do a double-take with these new eyes.
My husband and I are trying to reconnect. It is not divorce or separation that we are resisting; we are actually becoming acquainted to our new selves. There is so little to say, yet we have been through so much and it feels like everything has changed. We feel tighter and closer, but so hurt and broken that we can’t find the words.
My family asks where I went, and wonders when I will be coming back. My friends don't seem to recognize me in my new self. It is as though I fell into a magic sleep for a thousand years, and when I woke up everyone was speaking a different language. I feel like I have morphed into a square peg in a round-hole world; I just can't make myself fit into the same old places where I used to be so at ease.
My job has become difficult for me. I have lost focus, lost my drive. My ability to concentrate has been taken over by the part of my mind that commands me to grieve. Without a baby to care for, I am no longer eligible for maternity leave. I don’t have the luxury of wealth to stay home indefinitely, and so I am back to work shortly after my baby died with no idea what I am doing.
People are moving on in their lives, and new concerns are demanding their attention. They look back at me and wonder why I am “still” so sad. For me it is like time has stopped. Weeks and months later, it is as though my baby just died. I watch the clock to mark time that used to be measured by calendar. It has been exactly 24 hours since you died, exactly one week, two days, and three hours, exactly two weeks and five hours. I can’t help it. You died on a Saturday, and every Saturday marks an anniversary for me. I can’t imagine being ‘years’ away from your death.
I don't especially like this new me. At this time while my loss is still so new, it is all I can do to face the raw and unending pain. Nothing seems to make any sense. My entire awareness is wrapped around my empty belly, my empty arms, and the dreams for the child that will never be. The future feels dead for me.
I struggle with the people closest to me whose expectations of my coping skills are not being met. They express remorse that the old me has gone. They wish for me to snap out of it. They actually express anger that I am being such a drag. I can see so clearly that they simply don't understand, even so, it is hard not to be resentful when they don’t seem to care to.
They misread my reasons for declining those baby shower invitations, they don’t see that my reasons have nothing to do with my love for the mother-to-be and everything to do with my own survival. Even putting these thoughts into written word feels dramatic, self-centered, and overdone. But, it is so very real for me right now. Part of me is embarrassed that I feel this way, and part of me is furious that I have to explain it at all. The people who would require the explanation should already understand. I suppose their expectations are not the only ones being left unmet.
Everywhere I go I am surrounded by pregnant women whose confidence about their baby and their future is impenetrable. Their shopping carts are overloaded with baby things, and they chat happily about the names they are contemplating for their baby. She is hoping for a girl, that one really wants a boy. I contemplate screaming into their faces that the gender of their baby is the least of their concerns as I wonder if she will be like me; if hers will be the next baby to die.
My girlfriend told me today that she is pregnant. I want to be happy for her, but her news makes me feel like my heart has been torn out again. I swallow the rock in my throat and feel like I have been kicked in the stomach. I have constant anxiety that the mailbox will bring word of the surprise shower for her. Every time the phone rings I worry that they will mention our friend’s happy news. I think about what to say so I can appear normal when the baby conversations start up. I want to remind them that my baby died, but I also feel like I shouldn’t have to. I am afraid for my friend with my new perspective on pregnancy, petrified of offending her in her blissful state, but still unable to take part in all of the celebration and the joy.
I know it sounds truly insane; I actually feel like I have gone crazy. But there it is, and as much as I wish it were different, it is me.
Wednesday, April 13, 2011
10 Ways to Deal With Grief
I saw this great article on the Journey Through Grief website. It was written by Janelle Hertzler the author of Seasons of Solace. I wanted to share it with all of you.
Ten Tips for Handling Grief
Ten Tips for Handling Grief
How to deal with grief
Handling grief is certainly not easy, but I have listed 10 tips that I found helped me through my own grief journey.
1. Be honest with your feelings. Emotions change quickly and unexpectedly in grief. Denying your feelings will not help with the healing process. Sometimes you feel empty, sometimes you feel enraged. Being able to “read” your own emotional state, will help in handling grief.
2. Find positive ways to express your feelings. Cry as much as you need to. I personally found a variety of creative outlets helped me work through my grief. I spent time photographing images in nature that spoke to my emotions. Although I had never written poetry before, I discovered a healing process in it. Many people have found it helpful to start a blog about their grief experience.
3. Talk to a trusted friend. Someone who will just let you talk and not offer simplistic answers provides a very helpful way to work through your grief.
4. Read books on grief. Books I found most helpful were books about personal experience. A Grief Observed
is a classic that I really appreciated reading. However in grief, I know that even avid readers can have a difficult time focusing. This is one reason I decided to publish Seasons of Solace. It is a book of photos and short storytelling poems that speak to the grief experience.
is a classic that I really appreciated reading. However in grief, I know that even avid readers can have a difficult time focusing. This is one reason I decided to publish Seasons of Solace. It is a book of photos and short storytelling poems that speak to the grief experience.5. Know that it is okay to ask tough questions. The “Why” questions are a normal response to grief. Honor these questions. I followed the outline of the Psalms of Lament to write my own questions and anger.
6. Seek out a local Hospice or GriefShare program. These groups are made up of people who are experiencing similar emotions and difficulties.
7. Do something special to honor your loved one’s memory. After my aunt died of cancer, several of her sisters regularly walked in cancer awareness relays. For several years after my husband died, I would buy myself special Christmas and birthday gifts. This is not something I would have done for myself, but he would have if he were living. I also made memory books to commemorate his life. You could create an (link) on-line memorial. Some people set up foundations in memory of their loved one to raise awareness for a particular condition (i.e. an illness) or situation (i.e. drunk driving).
8. Find something to be grateful for each day. In The Joy of Appreciative Living
author Jackie Kelm tells about a gratitude study she performed. She found that people who wrote down three things they were grateful for each day were noticeably happier at the end of 30 days.
author Jackie Kelm tells about a gratitude study she performed. She found that people who wrote down three things they were grateful for each day were noticeably happier at the end of 30 days.9. Practice healthy lifestyle choices. Experience has told me that this is not always easy. The last thing you will feel like doing on some days is getting out of bed to exercise. But a walk in the outdoors or a yoga session may be just what your body needs to support your emotions in the healing journey.
10. Give yourself permission to not rush through grief. Know that grief often takes much longer than most people imagine. Take whatever time you need.
Monday, April 11, 2011
Friday, April 8, 2011
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....
Walk Distance: 3 miles
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Walk Distance: 5 miles
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Walk Distance: 3 miles
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Salt Lake City
May 14, 2011
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
Registration Time: 9:00 AM
Start Time: 10:00 AM
Chapter: Utah
Phone: (801) 746-5540
Tuesday, April 5, 2011
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!
Monday, April 4, 2011
The Midnight Orange
In case you have never seen these beautiful sculptures, I thought I'd spotlight The Midnight Orange. I first saw these on someone else's blog during a giveaway. I thought they were beautiful and hope someday to order one for myself. Check out her Etsy store and see her amazing art. Below are a few of my favorite pieces.
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