Wednesday, November 25, 2015
Happy Thanksgiving!
Hi all!
Happy Thanksgiving! We hope you all have a fantastic day tomorrow!
I realized I haven't posted an update since Sierra's appointments with the specialists in Oakland.
The doctors came to the conclusion that she probably has a significant migraine disorder, that was triggered by the tumor and/or surgery. There are also some cognitive issues they're going to monitor, as well significant weakness in her right side, all triggered by the surgery or tumor. So, for now, the plan is going to monitor the tumor frequently, still. He's also started her on some different meds, and will monitor the headache frequency and strength for a couple months. She has another ultrasound on her kidney next week, and then a follow up appointment with the urologist, to monitor the lesion on her kidney. Hoping for it to be gone, or at the least, no growth. Her days have a roller coaster ride, most days are spent feeling well, so we're praying with all we have that these meds will help, and she can start to feel a bit normal again.
Anyway....hope everyone has a great thanksgiving. We are thankful to have you all a part of our lives and our journey.
Tuesday, November 10, 2015
Sierra update
Sierra had her MRI two weeks ago. Results showed no growth. No sinus infection, or anything like that, either. We were hoping for something as simple as a sinus infection...something that could be easily treated, and an explanation for continued symptoms. But there was nothing.
She met with the neurosurgeon from Oakland yesterday. While he's happy with no growth, he's not happy with the status of her health. So, he's sending her to new specialists, again, in Oakland, as soon as possible.
There is so much going on in our lives right now...most of it, difficult stuff. Our family as a whole could use some extra prayers. Prayers for Sierra's health, recovery for Ken from his surgery, financial stability from his job and getting back to work, health for the kids, and peace. We need peace and endurance.
Thanks for the continued prayers and support. They are sustaining us right now.
Friday, October 23, 2015
All over the place.
Where to start, where to start. It's after 1am, again, and my thoughts are all over the place. So this might be a little long and hard to follow.
This month has been a roller coaster ride, filled with more raw emotions than I care to count.
Sierra hasn't been feeling well for the past 3 weeks or so. She's made it to school on average twice per week. Next MRI is scheduled for Tuesday. Please join us in praying for unchanged results. And pray for her to start feeling better.
Ken had surgery on his hand this past Tuesday. Procedure went well, and he's recovering with no issues. Hopefully this will be the final thing needed for his hand, which he broke back in December.
For those wanting to order the shirts that Sierra designed, they are still available for purchase. Sales end on November 9th. Her Make A Wish is scheduled January 8th. Our biggest hope is that she feels well enough to enjoy it.
https://www.booster.com/sierras-make-a-wish?utm_source=fb_share_tablet
In our shirts.
This past Saturday, our community suffered a huge blow, as our friends Mark and Jeanne, and Jeanne's friend were killed in a car accident. Jeanne was the first person we met when started at our church. She sang a solo, and she sang it beautifully. That was 10 years ago. Jeanne and Mark leave behind four beautiful kids, all who suffered injuries, but are expected to be okay. Jeanne and I did a lot of photography together. Their little boy, Corbin, is good friends with Bryce. I've watched their two youngest each week since Emma, 6, was just a few months old. Mark....he reminds me of a big teddy bear. He worked for the police department and was a big guy. But one of the kindest, happy go lucky souls you could ever meet. The newspaper usually used either Mark's or my pictures for their shot of the day. He had a fantastic eye, and could take the best pictures using his GoPro. On Saturday, both of our pictures were shared. On Saturday night, the news station posted my picture, and just a few moments later, posted the picture of their accident. We didn't know at the time that it was them, and I pretty much skimmed over it without paying much attention. A little while later we received the phone call. Our entire community and church grieve for their loss.
There is a gofundme page for their kids, who will now be raised by family. I'm not one who usually promotes fundraisers....but these babies need all the help they can get.
https://www.gofundme.com/hounsellchildren
Saturday is the funeral. The last funeral I attended, was the funeral of my own child, in the same room, on the same platform. so I'm a bit anxious and feeling kind of raw. Please pray for everyone on that day.
On top of everything else, it's October. As everyone knows, October is Breast Cancer Awareness Month. And Domestic Violence Awareness Month. And it's also SIDS and Pregnancy and Infant Loss Awareness Month.
I didn't really do anything to bring much awareness this year, but I have been participating in a photo challenge for the month, called Capture Your Grief, where each day, you post a picture based on the topic of the day. I've been kind of posting them in random places, but figured I'd compile them all here in one place. Some topics have been very challenging. But has also been an open door to share bits and pieces of Arianna's life, or our grief that I hadn't shared before.
#captureyourgrief #whathealsyou
Day 1
sunrise.
Day 3
In Honor
Lighting candles on Pregnancy and Infant Loss Awareness Day in honor of those babies taken too soon. And Phoenix wanting to pray for the families...age 4.
Day 4.
Darkness and Light
Day 5
Empathy.
Some of the most empathetic people I've met, are those who have walked this journey with me. Those I've personally met, and those I've met on line or on the phone. Thankful for these beautiful women, the friendships that have grown from the darkness and pain
Books
These books have brought comfort to my heart, helped me help my kids, and at times, made me feel a bit more normal in my grief process.
Memory
Arianna' s Quilt is covered in memories, as it is made from each outfit she wore or blanket she used. I can remember her wearing each piece.
Wish list
I don't have a picture of an actual wish list, but the first thing that came to mind was at Christmas. Each year, we pick a random, anonymous little girl who would be Arianna's age, and we buy her Christmas Gifts from her wish list, in honor of Arianna.
Words
I know a lot of people are not Obama fans....but we appreciated the acknowledgement last year for Arianna's life and death, and the goals we'd like to see regarding resources for infant loss.
Day 11
Glow in the woods.
Wasn't sure what to share for this one, but this pic came to mind. Arianna' s shiny birthday balloons floating over the woods.
Day 21
Sacred Space
I don't really have a 'sacred' space, but I do find solace when I'm outdoors with nature and the beauty around us.
This month has been a roller coaster ride, filled with more raw emotions than I care to count.
Sierra hasn't been feeling well for the past 3 weeks or so. She's made it to school on average twice per week. Next MRI is scheduled for Tuesday. Please join us in praying for unchanged results. And pray for her to start feeling better.
Ken had surgery on his hand this past Tuesday. Procedure went well, and he's recovering with no issues. Hopefully this will be the final thing needed for his hand, which he broke back in December.
For those wanting to order the shirts that Sierra designed, they are still available for purchase. Sales end on November 9th. Her Make A Wish is scheduled January 8th. Our biggest hope is that she feels well enough to enjoy it.
https://www.booster.com/sierras-make-a-wish?utm_source=fb_share_tablet
In our shirts.
This past Saturday, our community suffered a huge blow, as our friends Mark and Jeanne, and Jeanne's friend were killed in a car accident. Jeanne was the first person we met when started at our church. She sang a solo, and she sang it beautifully. That was 10 years ago. Jeanne and Mark leave behind four beautiful kids, all who suffered injuries, but are expected to be okay. Jeanne and I did a lot of photography together. Their little boy, Corbin, is good friends with Bryce. I've watched their two youngest each week since Emma, 6, was just a few months old. Mark....he reminds me of a big teddy bear. He worked for the police department and was a big guy. But one of the kindest, happy go lucky souls you could ever meet. The newspaper usually used either Mark's or my pictures for their shot of the day. He had a fantastic eye, and could take the best pictures using his GoPro. On Saturday, both of our pictures were shared. On Saturday night, the news station posted my picture, and just a few moments later, posted the picture of their accident. We didn't know at the time that it was them, and I pretty much skimmed over it without paying much attention. A little while later we received the phone call. Our entire community and church grieve for their loss.
There is a gofundme page for their kids, who will now be raised by family. I'm not one who usually promotes fundraisers....but these babies need all the help they can get.
https://www.gofundme.com/hounsellchildren
Saturday is the funeral. The last funeral I attended, was the funeral of my own child, in the same room, on the same platform. so I'm a bit anxious and feeling kind of raw. Please pray for everyone on that day.
On top of everything else, it's October. As everyone knows, October is Breast Cancer Awareness Month. And Domestic Violence Awareness Month. And it's also SIDS and Pregnancy and Infant Loss Awareness Month.
I didn't really do anything to bring much awareness this year, but I have been participating in a photo challenge for the month, called Capture Your Grief, where each day, you post a picture based on the topic of the day. I've been kind of posting them in random places, but figured I'd compile them all here in one place. Some topics have been very challenging. But has also been an open door to share bits and pieces of Arianna's life, or our grief that I hadn't shared before.
#captureyourgrief #whathealsyou
Day 1
sunrise.
#captureyourgrief #whathealsyou
Day 2
Intentional
My classes started just a couple weeks after Sierra's surgery/cancer diagnoses, in the midst of all our appointments, hospital visits, sick days and major life changes. Was by far the hardest class I've ever taken....emotionally and time consuming. Almost quit a couple times. Thankful this part of it is over.
In Honor
Lighting candles on Pregnancy and Infant Loss Awareness Day in honor of those babies taken too soon. And Phoenix wanting to pray for the families...age 4.
Darkness and Light
Empathy.
Some of the most empathetic people I've met, are those who have walked this journey with me. Those I've personally met, and those I've met on line or on the phone. Thankful for these beautiful women, the friendships that have grown from the darkness and pain
Day 6Books
These books have brought comfort to my heart, helped me help my kids, and at times, made me feel a bit more normal in my grief process.
Day 7Memory
Arianna' s Quilt is covered in memories, as it is made from each outfit she wore or blanket she used. I can remember her wearing each piece.
#captureyourgrief #whathealsyou
Day 8Wish list
I don't have a picture of an actual wish list, but the first thing that came to mind was at Christmas. Each year, we pick a random, anonymous little girl who would be Arianna's age, and we buy her Christmas Gifts from her wish list, in honor of Arianna.
#captureyourgrief #whathealsyou
Day 9
Family
.
Day 10Words
I know a lot of people are not Obama fans....but we appreciated the acknowledgement last year for Arianna's life and death, and the goals we'd like to see regarding resources for infant loss.
Glow in the woods.
Wasn't sure what to share for this one, but this pic came to mind. Arianna' s shiny birthday balloons floating over the woods.
#captureyourgrief #whathealsyou
Day 12
Normalizing grief
Some things that have become a 'normal' part of our grief as a family.
Sometimes, making a spontaneous trip to the store to buy a helium filled balloon or balloons simply because one or more of the kids is missing her and wants to send a message. If it's an emotional month, we just resort to buying a whole helium tank.
Sending balloons to Heaven on her birthday or holidays.
Feeling comfort at the sight of a butterfly, which has become symbolic for us.
Watching my husband tearfully and very carefully make a beautiful lei to be released at sunset on April 5 of each year.
Getting art work with angels and stories of their sister from our little ones.
Speaking her name daily. Needing to share her story, her life, her death with whoever will listen.
Getting lectured by our kids when a random stranger asks how many kids we have, and we only say 6.
Grief groups and grief camps.
Occasionally, being completely over run with emotions, and not really having a reason why other than it being a moment of grief.
Shopping for a little girl who would be Arianna's age, simply because it doesn't feel right not to.
Being able to completely empathize with someone else who has lost a child, and very deep friendships being formed because of that bond.
Participating in the Wave Of Light and Walk to Remember each year.
Day 12
Normalizing grief
Some things that have become a 'normal' part of our grief as a family.
Sometimes, making a spontaneous trip to the store to buy a helium filled balloon or balloons simply because one or more of the kids is missing her and wants to send a message. If it's an emotional month, we just resort to buying a whole helium tank.
Sending balloons to Heaven on her birthday or holidays.
Feeling comfort at the sight of a butterfly, which has become symbolic for us.
Watching my husband tearfully and very carefully make a beautiful lei to be released at sunset on April 5 of each year.
Getting art work with angels and stories of their sister from our little ones.
Speaking her name daily. Needing to share her story, her life, her death with whoever will listen.
Getting lectured by our kids when a random stranger asks how many kids we have, and we only say 6.
Grief groups and grief camps.
Occasionally, being completely over run with emotions, and not really having a reason why other than it being a moment of grief.
Shopping for a little girl who would be Arianna's age, simply because it doesn't feel right not to.
Being able to completely empathize with someone else who has lost a child, and very deep friendships being formed because of that bond.
Participating in the Wave Of Light and Walk to Remember each year.
#captureyourgrief #whathealsyou
Day 13
Regrets and triggers
I think my top regret is not taking the time during Arianna' s life to take family pictures, or even pictures with all the kids together. For trusting that tomorrow would come and there would be time for that. Tomorrow stopped coming, and there are no family pictures with her actual body in it. Instead, we take pictures with someone holdi...ng her picture.
Triggers. Anything CPR related. I feel like my chest is being run over by a train at the sight of it happening, or even reading about it being done. I had been CPR certified for years...but there is something about performing it on your own child, and failing to save her that shakes you to your very core. Finally passed a class this year, after 6 years of having to walk out because I couldn't cope, but not without the panic, physical, psychological, emotional response that comes with it.
Day 13
Regrets and triggers
I think my top regret is not taking the time during Arianna' s life to take family pictures, or even pictures with all the kids together. For trusting that tomorrow would come and there would be time for that. Tomorrow stopped coming, and there are no family pictures with her actual body in it. Instead, we take pictures with someone holdi...ng her picture.
Triggers. Anything CPR related. I feel like my chest is being run over by a train at the sight of it happening, or even reading about it being done. I had been CPR certified for years...but there is something about performing it on your own child, and failing to save her that shakes you to your very core. Finally passed a class this year, after 6 years of having to walk out because I couldn't cope, but not without the panic, physical, psychological, emotional response that comes with it.
#captureyourgrief #whathealsyou
Day 15
Wave Of Light
Tonight will be our 7th year participating in the Wave Of Light, a world wide candle lighting event in honor of all babies or children (young or old) who have passed. (From 7-8 pm tonight if anyone wants to join us)
Day 15
Wave Of Light
Tonight will be our 7th year participating in the Wave Of Light, a world wide candle lighting event in honor of all babies or children (young or old) who have passed. (From 7-8 pm tonight if anyone wants to join us)
#captureyourgrief #whathealsyou
Day 16
Creative grief
Pic 1- SIDS ribbon melty beads.
Pic 2-bear that was made weighing as much as Arianna weighed, made by Tamberly Slagle...
Pic 3-her footprints on a Christmas Ornament
Pic 4-her footprints in a bracelet
Pic 5-picture pillow made by Tajaneh Jones
Pic 6-picture bracelet, also made by Tajaneh
Pic 7-painting done by Helen Fanning
Pic 8-memorial quilt made by Melissa Johnson
Pic 9-Ari bears, each made with an outfit and blanket that she used.
Day 16
Creative grief
Pic 1- SIDS ribbon melty beads.
Pic 2-bear that was made weighing as much as Arianna weighed, made by Tamberly Slagle...
Pic 3-her footprints on a Christmas Ornament
Pic 4-her footprints in a bracelet
Pic 5-picture pillow made by Tajaneh Jones
Pic 6-picture bracelet, also made by Tajaneh
Pic 7-painting done by Helen Fanning
Pic 8-memorial quilt made by Melissa Johnson
Pic 9-Ari bears, each made with an outfit and blanket that she used.
#captureyourgrief #whathealsyou
Day 17
Secondary Loss
7 years in, and we're still recognizing some of the secondary losses that comes with losing a child. When Arianna died, I couldn't wait to get through all the 'firsts', thinking it would be easier after. ...
She lived. Yet, she died at such a young age, so there is a lifetime of 'firsts' and a lifetime of secondary losses.
The big ones are obvious. The loss of birthdays, the loss of those exciting first steps, first Christmas, first day of school, first lost tooth, learning to ride her bike, prom, learning to drive, graduation, getting married, becoming a mommy.
Then there are the losses that our family feels and misses, that may not be recognizable to others. family camping, annual fishing derbies, watching sunsets or stargazing at night, family vacations and hikes, jumping in rain puddles, rolling in the leaves, baptisms, playing soccer, martial arts, being the Star Student, learning to kayak, and sometimes it's as simple as knowing there should be one more at the dinner table.
Day 17
Secondary Loss
7 years in, and we're still recognizing some of the secondary losses that comes with losing a child. When Arianna died, I couldn't wait to get through all the 'firsts', thinking it would be easier after. ...
She lived. Yet, she died at such a young age, so there is a lifetime of 'firsts' and a lifetime of secondary losses.
The big ones are obvious. The loss of birthdays, the loss of those exciting first steps, first Christmas, first day of school, first lost tooth, learning to ride her bike, prom, learning to drive, graduation, getting married, becoming a mommy.
Then there are the losses that our family feels and misses, that may not be recognizable to others. family camping, annual fishing derbies, watching sunsets or stargazing at night, family vacations and hikes, jumping in rain puddles, rolling in the leaves, baptisms, playing soccer, martial arts, being the Star Student, learning to kayak, and sometimes it's as simple as knowing there should be one more at the dinner table.
#captureyourgrief #whathealsyou
Day 18
Seasons or symbols
This is all I have for tonight.
Day 18
Seasons or symbols
This is all I have for tonight.
#captureyourgrief #whathealsyou
Day 20
Forgiveness
This one is hard for me, because it feels so personal and exposing. It took me a long time to realize that the one I needed to forgive was myself. I spent quite a few years filled with self hatred, guilt, shame, self destruction and insecurities and a crushing fear that I wasn't capable of keeping my babies alive. I felt like a failure not being a...ble to save her, for not being able to breathe life back into her body, for not being able to protect my other babies from the harsh reality of grief. It took a lot of work and energy to realize and accept that I did all I could. That I was capable of being a mom and keeping them alive. That Arianna knew she was loved, and nothing less. Pics taken from the book Mother of All Mothers.
Day 20
Forgiveness
This one is hard for me, because it feels so personal and exposing. It took me a long time to realize that the one I needed to forgive was myself. I spent quite a few years filled with self hatred, guilt, shame, self destruction and insecurities and a crushing fear that I wasn't capable of keeping my babies alive. I felt like a failure not being a...ble to save her, for not being able to breathe life back into her body, for not being able to protect my other babies from the harsh reality of grief. It took a lot of work and energy to realize and accept that I did all I could. That I was capable of being a mom and keeping them alive. That Arianna knew she was loved, and nothing less. Pics taken from the book Mother of All Mothers.
Day 21
Sacred Space
I don't really have a 'sacred' space, but I do find solace when I'm outdoors with nature and the beauty around us.
#captureyourgrief #whathealsyou
Day 22
Dreams About a week before Arianna was released from the hospital, I was in the NICU with her. I had just finished nursing her, and was holding her on my chest, as I started to drift into a very light and content sleep. All of a sudden, a feeling burned through my entire soul, with something telling me to 'hold onto that moment, that she wouldn't be here long'. A feeling like I've never had before. I felt like I was going crazy. I ...begged the doctors and nurses to check her, that something was wrong. They convinced me that she was fine. That she just needed a little more time to grow, and she'd be home soon. After sitting there sobbing for two hours, they told me it was time to put her back into her bed, and to go home and get some rest. I cried all the way home. Cried myself to sleep in Ken's arms. The next morning, I tried to put the thoughts of those feelings away, but continued to have an unsettled feeling. Tried to convince myself that I was just overly exhausted. The morning we found her not breathing, I realized it had been a few hours since she nursed, put my hand on her, and knew that she was already gone before we could even see her to confirm it.
Day 22
Dreams About a week before Arianna was released from the hospital, I was in the NICU with her. I had just finished nursing her, and was holding her on my chest, as I started to drift into a very light and content sleep. All of a sudden, a feeling burned through my entire soul, with something telling me to 'hold onto that moment, that she wouldn't be here long'. A feeling like I've never had before. I felt like I was going crazy. I ...begged the doctors and nurses to check her, that something was wrong. They convinced me that she was fine. That she just needed a little more time to grow, and she'd be home soon. After sitting there sobbing for two hours, they told me it was time to put her back into her bed, and to go home and get some rest. I cried all the way home. Cried myself to sleep in Ken's arms. The next morning, I tried to put the thoughts of those feelings away, but continued to have an unsettled feeling. Tried to convince myself that I was just overly exhausted. The morning we found her not breathing, I realized it had been a few hours since she nursed, put my hand on her, and knew that she was already gone before we could even see her to confirm it.
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