Monday, November 30, 2015

12 DOC: Welcome & Carrying to Birth


The third annual 12 Days of Christmas begins tomorrow <3.

My hope is that you’ll find comfort in knowing you are not alone, support from other families who are also walking this path, and healing by learning ways to include your beautiful baby in your holiday.

Please remember to be extra gentle with yourself as you face the holidays without your baby. Only do what feels right to you and nothing more. It’s your baby who died, your grief, and only YOU can decide how to heal. It’s perfectly acceptable to “skip” the holidays and simply survive, to throw yourself into creating new traditions, or anything in between (it may change from hour to hour). You know in your heart what you need to do; trust yourself. 

If you would like to connect with other baby/childloss families for this series, please join our private group.

Each day, for the next twelve days, we’ll be sharing a post from a loss family. She will share how she's handled the holidays since the loss of their baby. We will also have ideas for ways you can honor your baby this Christmas, special giveaways, and ideas for how to survive.

Together, we will remember our beautiful children and find hope and healing during this very hard time of year.

See you tomorrow!
~ ~ ~

 **The following section is specifically for families who are currently carrying a baby 
who has been diagnosed with a fatal condition** 

Since All That Love Can Do was created to help families who continue pregnancy after a fatal diagnosis,  it's important to me to share some ideas for making the most of your time during the holidays.

It was four years ago that I was carrying our son, Samuel, who had been very recently diagnosed with a randomly-occurring and fatal condition called PUV. I was trying to keep it together as all my hopes and dreams for our son were slipping through my fingers. I gathered up all of my courage and did my best to make the most of his only Christmas with us. It was a very challenging time for us. We took it one day at a time and that’s what I always recommend for anyone facing the loss of their baby. (Sometimes, it’s just one moment at a time.) You can read our story here.

Please know how deeply sorry I am that you have to face the loss of your loved and wanted baby. I know how hard it is. I know how emotional it is. I know how much it hurts. But I also know you can do this. You have this time to make the most of, and every day your baby is alive is another chance to fill them up with your love. Remind yourself this is the one chance you have to make it special. Give yourself breaks to cry and release your feelings, then try again when you’re ready. Protect your heart by only surrounding yourself with those people who are supportive and encouraging. Do what you feel you’d like to do and nothing more.

Depending on how far along you are, and your baby’s condition, baby may be able to hear, taste, and see, despite being tucked inside. You can still do some of the things you wanted to do in the future with baby, just in a different way than you had planned.

Here are some ways to make your baby’s Christmas a special one:

Read a special Christmas story to baby
Watch a holiday movie as a family (baby can listen along)
Make Christmas cookies and enjoy a few with baby
Listen to Christmas music
Go to a Christmas concert
Donate toys in your baby’s name
Visit family and friends and let them talk to baby
Decorate the tree together and tell baby all about it
Drive around to look at Christmas lights and tell baby all about it
Buy yourself some warm holiday slippers (when mama’s comfy, mama’s relaxed and so is baby)
Light some holiday scented candles
Buy baby a special stocking and/or ornament
Have a 3D ultrasound done and use the images as your holiday card
Begin a journal of your time together and write a letter to your baby

These are just some of the ways you can make the most of your time at Christmas. Do what feels right to you and know that you are a brave and beautiful mama, and you are doing an amazing thing.

If you would like to get support from other mother’s who have carried their babies with a fatal condition, you can join our private online support group*. There is no need to face this alone.

My greatest hope is that you will be able to make some very special memories with your baby to last you a lifetime.

with Samuel in my heart, 

RaeAnne

*Every person who asks to join the group will be sent an private message on FB. Please note: it may go to your “other” inbox. You will only be added to the group once you respond to the email. For the protection of the privacy of the group members, only mothers who continue pregnancy after a fatal diagnosis will be approved to join.

Wednesday, November 25, 2015

Dear Cyrus

By Alex Hopper

Dear Cyrus,

Today marks 2 years since I’ve seen your sweet face. Two years that we’ve been separated by time and space. To say that I miss you is understatement. You are missing from me. And yet somehow you are a part of me. You are in every breath I take. You are in every thought. Your soul has been intertwined with mine. Your existence forever a part of mine.


And though you aren’t here physically. I still see you. I see you in shining sun. I see you in the colors painted across the sky. I see you in your dad’s smile. I see you in the feathers that fall to the ground. I see you in stars. I see you in the mirror. I see you in my own eyes.

And although I can’t touch you, I still feel you. I feel your presence in the dark of the night. I feel your love when I am all alone. And oh how I feel your absence. I’ll never used to the absence of you. I’ll never get used to me without you.

Then there’s the love. The love I feel for you. Just as there’s no way to explain the pain of missing you, there’s no way to explain the joy of loving you. No collection or arrangement of words can accurately describe. It is a love that exists in every cell of my body. It is a love that continues to grow, a love that cannot be contained. And I won’t contain it. I’ll love you today and I’ll love you everyday until I am with you again.

Love, 

Mommy

~ ~ ~

Alex Hopper is a writer in North Carolina. She is married to her beloved, Trent, and mommy to her angel, Cyrus. Cyrus was diagnosis with a fatal birth defect in the womb at 12 weeks. He was carried with love until he was born at 33 weeks on November 25, 2013. He lived for 1 hour and 9 minutes. His life was short, but his legacy lives on.

Tuesday, November 24, 2015

To Give Thanks

by Megan Coker

I am so broken. I am the most broken I have ever been.

On Thanksgiving this year, I should be celebrating five full months of watching my
beautiful baby girl grow. I should be photographing her progress since June,
dressing her up in a gown with a turkey sewn on, and passing on the wine so I may
focus on losing the baby weight I would want to be rid of so badly.

Instead, I will be celebrating five full months of knowing she is at peace and healthy
in Heaven. I will drive to the mountain to photograph the snow on the ground and
wait for my Momma to send me a picture of her grave. My husband will have duty,
and I will welcome any wine that may find my glass. Do I really wish to lose the last
bit of weight she gave me?

Oh God, I am broken over all of this.

I find myself asking constantly: what can I do to find thankfulness in this? How is life
good? Where is the beauty in my pain? Please, joy, reveal yourself.
It is hard for me to smile and nod and wave and quietly be the woman I am
supposed to be this holiday. It is hard for me to accept my life this year. It is grief
that swallows my heart and anger that consumes my brain.

Question. What is there to be grateful for?

It is so hard a puzzle to piece together. For one to make a connection and keep
choosing that connection of thankfulness in mourning- it is a feat near impossible. If
you are grieving, don’t let anyone make you feel like it should be easy to find it and
choose it. Don’t let anyone make you feel like you are less than if you cannot, if you
will not. You can’t be forced to feel what you don’t or forced to not feel what you do.
I need to feel hope. I will, personally, seek appreciation. My heart craves it.

But how will I find it? Shall I reference Confucius? Aristotle? Shall I go back to my
philosophical learning of what it means to be a human being and to be happy?
Where is my self-realization? Is it an answer found in theory or in practice? Can
someone tell it to me? No. I must discover it for myself for it to be true.

I did not anticipate having such a hard time with this. I don’t know why, because for
all of my (few) adult years, I have been prone to the Winter SAD. I have always had
to fight off depression and actively work to be “in the spirit” during the holidays. I
love Thanksgiving and Christmas, but the time during which they fall is usually a
season during which I am naturally down.

I guess this year it all has snuck up on me so quickly. I’ve been so preoccupied with
just surviving I didn’t think about surviving through first holidays too. “I’ll cross that
bridge when I get there” has been my attitude about most things not directly in front
of me since Eden’s diagnosis. If it is not the battle I face today, it is not my biggest
concern (Is that the right way, Lord? Each day has enough worry of it’s own?).

But here it is…the battle facing me this week. A day I’ve always celebrated the
thanks I give year-round for all my blessings, now the first Thanksgiving I’ll live
through in the without. What should have been my daughter’s first Thanksgiving,
now another opportunity to straighten her belongings on the mantle and just miss
her.

What is there?

This is a little of what I’ve found. Perhaps it will help you find your answers too.


Answer. That I have her to miss. My love for her. This ache. Motherhood. I gave her
all I could, praying for her very best chance. I am a mother. I am a mother. I. Am. A.
Mother. 

Have you had to give your child back? Have you had to make the hard choices? Are
you carrying a baby you’ll have to say goodbye to? Your only child? Your first child?
Your second? Your fifth? You? You are a mother. You are a mother. Know that.
Believe that with every ounce of your soul. Angela Miller would tell you in her book,
“you’re the best damn mother”. Repeat it often: “Best damn mother. Best damn
mother.” And our babies made us that. And isn’t that all we need to utter a hoarse
thanks between our screams of anguish?

Answer. Marriage. The tested and true kind. The kind that has walked through a
trial. The kind that has seen the “for worse” at the same time as the “for better”.
Marriage with a man meeting me where I am every day, whether it be in my valley
or on my peak. Marriage with a bereaved father, the only man who can possibly
understand how I lost I am without this particular human, the human we made
together. A man that will never ask me to be quiet with this pain, a man that will
never ask me to stifle it or forget. To spend my life with him, to still have him when
we have lost our most precious... that is grace. That is some mercy to be thankful for.


Answer. A picture of us together. I held this child. She was in my arms. Oh, how they
ache for the weight of her, the warmth of her plump skin between them. But yes,
they are blessed for even having touched her. And, look I have proof! Her head
propped up by my left shoulder. Her curls captured perfectly, her chubby cheeks
and button nose. The lines of her lips matching the shape of mine. One simple
picture of my child, enough… But alas, I have more than one. Thanks upon thanks.



Answer. The smell of her. That I may breathe it in when I open a box of her
belongings. That I now know the value of a precious breath, that I know the value of
the ones she fought so hard to take. Gratefulness for the most basic; a gift of
breathing and breathing deeply.

Answer. Community. A group of women I wish I never met, but I am so grateful to
have met. Women just like me. Women missing their own babies. I know in my heart
the names of children I will only meet when I finally see my own girl face to face. I
can’t wait to kiss those children and thank them for sharing their amazing parents
with me. I get to have fellowship here in the meantime. What a sacred gift... I find
myself overwhelmed.

Answer. I am still here. I am alive. I can still see, taste, smell, hear, and feel. I can
experience this pain. Isn’t this the most human experience… grief, that is? Isn’t it
sacred? Oh, how good it is to know, to be changed by this. To be handed the worst
condition the world has to offer and live through it. To seek hope, to find healing,
and to hide under the covers when you cannot. To realize the most important things
in your life, to finally begin to cherish them like you never have before… That is
simply good.

I miss her. Lord, I miss her. My love for her grows and with it my empty ache.
And yet, life is still beautiful. I sit and look at all I have been given, even in this. I am
still being smiled upon.

I cannot bring myself to be thankful for her death. I will probably never be genuinely
grateful that she is not here with me. But I can, somehow, find goodness, grace, and
mercy in this pain. Here is my broken Hallelujah.

Thanks, for Eden.
Thanks, for Ryan.
Thanks, for memories.
Thanks, for senses.
Thanks, for family.
Thanks, for old friends.
Thanks, for new friends.
Thanks, for fellowship.
Thanks, for love.
Thanks, for pain.
Thanks, for breath.
Thanks, for brokenness.
Thanks, for this life.
Thanks, thanks, thanks.

Whether you find immense gratitude or just a quiet moment of peace, my family is
wishing you all a gentle Thanksgiving Day.

~ ~ ~

Megan Coker carried Eden Olivia to birth in June 2015 after receiving a diagnosis of a severe Congenital Diaphragmatic Hernia in the Bilateral form. Eden lived for 40 minutes. Megan is Ryan’s wife and together they follow his Army career. She has found a way to honor Eden’s short life in capturing the beautiful moments of others through starting her photography business, Eden’s Garden Images. Each day has its new challenges for both Megan and Ryan but they are learning to lean on each other through it and work steadily on strengthening their marriage. Megan finds healing through writing about Eden and remembering their beautiful time together

Wednesday, November 18, 2015

Preparing Siblings

by Jessi Snapp

I spent a lot of time during my pregnancy trying to figure out where my living child would fall into all of this. I struggled with how much and how little to share. We chose not to blanket the truth from him. I knew that he needed to know and it was my job to prepare him for what was ahead. As much as I hated it, I had to do it because I wanted my son to be a part of his brother's short life. As well as understand why it was important to make the most of our time with him.

But how do you prepare a child to lose someone they love too? There really is no right answer to this question. But here are some suggestions and tips on how to prepare siblings the best you can. Ultimately, it is your choice and everyone will go about it differently. I can only share from my educational background and personal experience.

-Wait until the diagnosis is official. There is no need to cause undue anxiety/fear. It might be the best option to wait until you receive the official diagnosis or at least know the likely outcome if you do not have an "official diagnosis." Give yourself time to process first. This will allow you to better answer questions that may arise when you break the news to your child.

- Be honest. This doesn't mean you have to give every single little detail, but it is best to tell the truth. This prevents them from being blindsided later. It also allows them to be a part of their sibling’s journey and to make memories with them. It can help them to have a better understanding of what is going to happen.

-Don't bombard. Be cautious not to bombard young children with information that they cannot understand. You know your child better than anyone. Go with your gut as to how much is too much. A fatal/life limiting diagnosis is overwhelming for the entire family. Give them what they need to know and allow them to ask questions if they have any.

- Choose your words wisely. Children, especially very young, internalize a lot of things. When we use words like "sick" or "ill" they can become frightened that they might die if they become sick. So, if you are using the word "sick" to explain your baby's diagnosis, it is a good idea to explain that most of the time when someone is sick - they get better. Sickness does not equate death. We personally never used the words "sick" or "ill" since my son was 5 at the time. We were able to explain things in a little more detail. Also, know it okay to use words like "death" and "dying," as morbid as it may seem - it is our reality. These words will probably evoke a lot of conversation, but these conversations are important if you want to prepare your child.

-It is not their fault. This is a given but one that needs to be said. Because children do internalize things, it is important to express that this is not their fault. And it isn't yours either.

-Mom will be okay. Children may worry about mom since she is the one carrying baby. For instance, my son often worried that I might meet the same fate as his baby brother. Reassure your children that you are safe and will be okay if in fact there is no danger posed to you. Even if they don't express concern - it is worth mentioning.

-Make memories. Just as we want to make memories with our babies, we should allow our children to do the same. My son loved to tell his brother jokes, feel him kick, read him books, and sing songs. Let children be involved in picking outfits or a special item for their sibling. We took our son to build-a-bear and created a special heartbeat bear for his brother. He brought it to the hospital the day his brother was born and it is now a very special memento that he cherishes.

-Decide if they will meet. I have heard stories from mothers who were apprehensive about letting their children meet their sibling. Especially if they were expecting severe anomalies. I will admit I was one of those mothers. I was actually more worried about my son holding his deceased brother than him seeing his brothers anomalies. But I knew I wanted them to meet no matter the outcome. This decision is yours and yours alone (and your child's if you choose to let them decide). I think it is important to share that I would have regretted not letting my boys meet, even though my son had already passed when they did. No matter the age of your child, it is okay to let them meet their sibling. But again, there is no right or wrong choice here - you decide what is best for your family. Prepare your child accordingly by talking about what they can expect. Know that it is okay to change your mind last minute.

-Take Photos. I don't have many photos of my boys together. But I cherish the ones I do have. My son cherishes the pictures of him and his brother too. Take photos during pregnancy and after birth of your children together. This may be your only opportunity to capture all of your children together. This will provide your other children to have photos to keep later on.
-It's okay to cry in front of your children. While we aim to shelter our children from life's storms, it's okay to show emotions. We can't always be strong and it is healthy to let our children see us cry from time to time. I can recall a few times where we all cried together as a family. It brought us closer together and it also showed my child that he could share his emotions with us.

-Take time to talk. The initial conversation will be hard and overwhelming for most. After this conversation be sure to check in with your child and see how he or she is feeling and if they have any unanswered questions. Make yourself available so they can come to you when they have any questions or anxieties about the situation.

-Every child is different. This means that all children will not handle this the same way. Some may be more distraught and others more matter of fact. This is okay and completely normal. Your children will handle it their way so it is important not to take their reaction personally. All we can do is love them through it.

-Children grieve too. Anticipatory grief affects us as well as our children. Anticipatory grief is a normal reaction that can be experienced by children when there is fear or knowledge that their sibling is not going to survive. Children will grieve with the family, even before the loss actually occurs. Allow room for their anticipatory grief along with yours. Validate their feelings and let them know they aren't alone. Don't be surprised if your child acts out.

-Read books. This is one of the most beneficial ways to help your child process. Reading books about sibling loss can help prepare them for what is yet to come. It also creates bonding time and opportunities to talk about feelings. Take advantage of books. They can explain things that we may struggle to. It may seem incredibly out of place to read books about loss before your baby is even born, but it can help to prepare your children what to expect. Reading these books can be a very emotional experience for you as well as your child. Read these books as often as your child wants.

Here is a recommended book list for children:

* "We Were Gonna Have a Baby, but We Had an Angel Instead" by Pat Schwiebert. A story of a boy expecting to have a baby sibling, but the sibling passes away. Gentle and simple enough for young children.
* “Something Happened: A book for children and parents who have experienced pregnancy loss” by Cathy Blanford.
* “The Invisible String” by Patrice Karst. This book isn't about pregnancy or loss at all, but rather the love that connects a family together. This was a great way to explain to a child that even when a person isn't with us they live in our heart because we love them.
* “Thumpy's Story: A Story of Love and Grief Shared” by Nancy C. Dodge. This book is about death of a sibling and the different ways grief is experienced as told by Thumpy the bunny. Personally, this was my favorite because it is incredibly honest and real. It not only talks about loss but grief also. I would recommend this book for children 5+.
* Water Bugs and Dragonflies: Explaining death to young children" by Doris Stickney. This is a beautiful story that explains death and what lies after in a gentle way. Perfect for preschoolers and above.
* If you are a person of faith and believe in heaven, “God Gave Us Heaven” by Lisa Tawn Bergren is a good option.

Every journey and every child is different. There is more than one way to go about preparing children and lot of that will be based on the age of your children and your family’s beliefs and values. Just know that the decisions you make about how much or how little you prepare your children are the right decisions for your family. You have your child's best interest at heart. The most important thing in all of this is love. Just love your children through this the best you can.

~ ~ ~
Jessi Snapp resides in Indiana where she is pursuing her master’s degree in social work. She is married to her wonderful husband, Karl, and she is a mother to one living child and three in Heaven. After enduring two losses to miscarriage, Jessi became pregnant with her son Silas Edison who was diagnosed with Trisomy 18 at 20 weeks gestation. Silas was born and passed on August 20, 2014. Though his life was brief, he is loved for a lifetime. In Silas’ memory, Jessi turned his nursery into an art studio where she creates custom memorial art for other babies gone too soon. You can find her heart-centered work at LuminousLightStudio and on Facebook. She is also the newest contributor for Still Standing Magazine.

Thursday, November 12, 2015

Happy Birthday, Lily

by Kellie Soper


The words are not coming very easy right now. I have so much to share, but I honestly don't even know where to begin. I've been sitting here staring at this computer for hours and I just don't have the words. So one year later, I'm sharing what was read at Lily's funeral. The first part a dear friend shared with me when I was pregnant with Lily. The second part I wrote about what loving Lily means to me.

Happy birthday beautiful girl. I love and miss you more than you will ever know. Shower us with love and kisses today. I love you Lily girl.


To Love a Person - Adapted from Kathleen Dean Moore

What does it mean to love a person? 

To love - a person - means at least this:


One. To want to be near her, physically.


Number two. To want to know everything about her - her story, her moods, what she looks like by moonlight.


Number three. To rejoice in the fact of her.


Number four. To fear her loss, and grieve for her inquiries.


Five. To protect her - fiercely, mindlessly, futilely, and maybe tragically, but to be helpless to do otherwise.


Six. To be transformed in her presence - lifted, lighter on your feet, transparent, open to everything beautiful and new.


Number seven. To want to be joined with her, taken in by her, lost in her.


Number eight. To want the best for her.


Number nine. Desperately.

Loving isn’t just a state of being, it’s a way of acting in the world. Love isn’t a sort of bliss, it’s a kind of work, sometimes hard, spirit-testing work. To love a person is to accept the responsibility to act lovingly toward her, to make her needs my own needs. Responsibility grows from love. It’s the natural shape of caring.


Number ten.
To love a person is to accept moral responsibility for her well-being.

What does it mean to love Lily?
It means everything on this list and so much more.


It means knowing that labor will hurt and you go through with it anyway even though you don't get to keep your reward.

It means knowing that your heart will be broken for the rest of your life, but holding her for even five minutes makes up for it.

It means watching her lift her big brother off your belly with her amazingly strong kicks.

It means you will be filled with awe, wonder and sorrow as you watch your belly dance before you go to sleep every night.

It means you might not get any sleep at night because Lily wants to dance all night long and that's totally okay with you.

It means you never knew you could love someone so much before you even meet them.

It means your heart will be so full when you see her with her brother's chipmunk cheeks.

It means if you had to...you would do it all over again because those brief minutes held more love than a whole lifetime does for some.

It means you didn't know it was possible for your heart to grow in so much love for your husband through honoring your daughter.

It means memorizing every single sweet and perfect detail so you can meet her in your dreams.

It means you will fight and defend her right to life until your very last breath.

It means that you mourn for your son who doesn't have his best friend to grow up with, but also rejoice in knowing the special connection he will have with her in Heaven.


And most importantly, it means you will never be the same person again, for we are the mother and father of a saint, and we walk with one foot on earth and one foot in Heaven, until we meet our beautiful girl again.
~ ~ ~

Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have two beautiful children, one on earth and one sweet, perfect soul in Heaven. Ted is a wild, silly, and rambunctious toddler. Their sweet Lily Frances was born sleeping on November 12, 2014. They learned at their 18 week ultrasound that Lily had a fatal neural tubal defect the doctors said was "incompatible with life." Kellie and Jason both knew Lily was not a "decision", but their precious daughter and they believe her life was of value, no matter what. She carried Lily with love for 42 weeks and 2 days. They miss her every single day, but are grateful for the honor and privilege of being her parents. You can read more about their family on Kellie's blog, Life and Love.
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