Monday, May 30, 2016

Day of Despair

by Kellie Soper

Some call it their "D-Day". The day they learned of their child's fate. The day they learned that every hope and dream they had for their child was shattered. The day they may have been told their child was "incompatible with life".Or the day someone referred to their child as an "option" and no longer a person. The day they received the diagnosis that shattered their world as they once knew it.

Our D-Day was two years ago. At times it feels like yesterday, but mostly it feels like an eternity since that day. I honestly can barely remember what life was like before that day two years ago. 

But I can remember very clearly every single moment of that day. Every insignificant detail, every feeling that I felt.

It started out as a great day. My son Ted had been sick all week and he was finally feeling better. Our dear friends' daughter was just born the day before. Our other dear friends were getting married the next day. Sandwiched in between was our "routine" anatomy scan. I was so excited to see our baby again. I had no feelings, no intuitions that anything was wrong. In fact, I felt wonderful...on top of my world just before it crumbled below me.

Jason had the afternoon off so we were going to have a late lunch date after. On the way to our appointment, we were trying to decide where we wanted to eat and talking about how much fun our friends' wedding would be the next day. We were in much need of a date night.

thought our "routine" anatomy scan was going normal. I couldn't remember the "order" of Ted's ultrasound to know if this was the same or not. It didn't phase me at all that we hadn't seen our child's profile. We saw ten perfect fingers and ten perfect toes. Two lungs and two kidneys. And we saw our baby's heart...four chambers, beating perfectly and beating strong. In a few minutes, I would learn for the first time that a perfect and strong beating heart wouldn't be enough.

Then the doctor came in and shared with us a word that I barely knew and immediately became my greatest fear realized. I learned what the word anencephaly would mean for my family. I learned that every hope and dream I had for my child was stolen from me.

And then I learned the real meaning of despair. It's the complete loss or absence of hope. 

That's where I was two years ago...completely hopeless, utter despair. I thought I knew heartache before. I thought I knew what it was like to lose someone you loved. Really, I didn't know at all...not until this moment, two years ago. 

True despair. 

We drove home in silence. The only sounds were our tears and trying to catch our breath. We laid on our bed together and just cried. I told Jason I was so sorry this was happening to him. It made him cry even more. 

After awhile he left to call his parents and pick up Ted at our friends' house. I can only imagine how hard it was for him to go pick him up and tell our friends by himself. 

I just laid there sobbing and praying. Over and over, I begged God to not make me do this. I begged Him and begged Him to take her then. I didn't think I could endure the next five months. 

Two years later and I can't even begin to explain to you the guilt I carry for ever thinking that, let alone screaming it out loud. But that's where despair leads you. That's what the absence of hope looks like. 

Even after her birth, even after the day I held her for the last time, even after my last kiss on her cheek and seeing her in this life forever...even after all of those moments, I can honestly say, nothing compares to the despair of her diagnosis.

It was the worst day of my life. 

I cried every single day for weeks. 

Slowly, somehow, by the grace of God and prayers, every day, little by little, I was able to pick myself up a little bit. We talked to our priest. We met with another family who had faced the same diagnosis and survived. We had unbelievable support from family and friends. We learned the very definition of community.

As the months passed, the despair still lingered, but it was overpowered by graceThe grace of God wins every time when you choose life. After the hardest two years of my life, I believe that whole-heartedly. It was never strength, it was always grace.

Grace reminded me that my daughter was a precious gift no matter what. She deserved every chance of life possible. She is not a definition, she is not an option, she is not despair. She is a person. She is my daughter. 

While these past two years have been harder than I imagined, I have no regrets and I would not change anything. I would have given anything to save her, but I would never trade her for another. She is unrepeatable and irreplaceable. She is my precious daughter.

I have learned more and grown more in these past two years than all my years combined. I have learned some hard lessons about how people close to you deal with your grief. I have learned that my family is more amazing than I ever dreamed they could be. I have learned that the world keeps moving despite your constant pain. I have learned my husband is the most compassionate and sensitive man I have ever known and my love for him today far exceeds the day we were married. I have learned how cruel this world really is and I am grateful Lily does not have to experience it. I have learned to never take a single day for granted. I wake up every single morning thanking God for another day with my family all the while longing for glimpses of Lily. 

More than anything else, I have learned that Lily is worth every second of heartache I will face for the rest of my life. I love that she is my daughter. 

Holding her in my arms helped me let go of the despair. Kissing her cheeks filled my heart with so much love it could burst. Memorizing her perfect hands and feet carries me through each day. Remembering how much love and peace filled the room when she was born makes it all worth it.

I am not the same person I was two years ago, I'm not even close. But the truth is, I don't want to be that person again because that would mean I missed out on experiencing a love that was so perfect and so pure. All she knew was love. I would have missed out on knowing Lily and loving Lily and that alone is worth a life time of heartache.

~ ~ ~

Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have three beautiful children, one on earth and two sweet, perfect souls 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. Their youngest daughter is Clare Therese. She met her big sister in heaven after a few precious months on earth with her family. You can read more about their family on Kellie's blog, Life and Love.

Thursday, May 26, 2016

Hyrum's Story, by his Mama

A Life Well Lived, By Ashley Wiltbank

​I've heard many people say that the year they lost their child was the worst year of their lives. I refuse to make that true for me. 2016 has already been the best year of my life. A year I'll remember forever. It's the year I got to witness and hold a miracle. A gift directly from God. Proof that He is real, and that He loves me. In 2016, He gave me Hyrum.

Technically, our journey with Hyrum started in 2015. On December 7, 2015, when we were referred it a perinatalogist, after my OB saw fluid on our baby's brain and bright spots on his heart. Maybe I was oblivious or na├»ve, either way, we were not at all expecting the tech to turn to us and say that she "saw what your OB saw, and I see a lot of other issues too". She then went on to list nearly every major organ system and the problems she saw in each one. I don't think I really processed what it meant until after several hours of more testing, when the genetic counselor told us that our baby would most likely be stillborn, and that if he wasn't, the odds of him making it to his first birthday were less than 8%. She said if she were me, she would terminate the pregnancy.

Luckily, when we met the MFMS, he was much more positive. He didn't bring up termination, and although the prognosis for our sweet unborn baby was still grim, he encouraged us to make the most of our time with our son. We were introduced to a perinatal palliative care nurse, Berdette. She told us that our son's life was going to be brief, but that it was still within our power to make his life wonderful.

A friend brought us this picture by the artist Simon Dewey, not long after we got the diagnosis. We knew that Hyrum's place in our family had meaning and that God had a plan for him. And we knew most of all, as our daughter said, "Jesus is going to take care of our baby!" The title of the painting is "In His Constant Care". It brought us so much comfort.
It was undeniable that God was sending us a valiant, noble little spirit! We'd tossed around the idea of naming him Hyrum, and after finding out that it means "noble", "whiteness", "borrowed" and "my brother is exalted", we decided that that would be the perfect name for our kids to call their brother!

Some days during my pregnancy were SO hard. I was so discouraged, and so sad. But I'm so grateful that most of the days were actually pretty good! In taking Berdette's words to heart, we tried to make the most of our time with our son. Every day I got to wake up and feel him kicking felt like a gift from Heaven. We took time to get to know him. Our other three kids loved to feel him kick them! We would sing to him every night,
"Godspeed little man, sweet dreams little man, oh my love will fly to you each night on angel's wings, Godspeed, sweet dreams".  

I felt more confident, more loved when Hyrum was alive inside of me. I felt so honored to get to carry this beautiful little soul and have him literally be a part of me. I just knew he was so pure. Too pure for this earth. Strong impressions told me before I ever even saw him that he accepted this body and this short life, that his heart is not set on the vain things of this world. He's pure and perfect enough to serve his purpose without having to be physically with us.

I tried so hard to listen to the things I knew Hyrum was trying to teach me. I've never had such a sure knowledge of a loving Heavenly Father. I've never had such love for the people around me. I've never been more motivated to be a good person. I've never been so grateful to see the sunrise, sunset, blue sky, rainy days, cold days, bright days and dark days. I wanted to spend as much happy time as I could with my kids. I wanted Hyrum to hear his siblings and hear our happy voices and know he was part of a family who loved each other and loved him.

Some days I failed miserably. Some days fear and stress consumed me. But my noble little Hyrum motivated me to press forward. I wanted to make his life beautiful.

We felt like every person we met while I was pregnant with Hyrum, from our doctor to our photographer to the random stranger who paid for my prenatal vitamins at Safeway one day, was intricately placed in our path. I never knew such amazing, compassionate people existed, willing to do such grand acts of service for complete strangers. My husband made the comment that if Hyrum had lived, these would be the types of people he would associate with and bring into our lives. And even though his time was short, he still brought them to us!

I'd given birth three times before, and each birth experience was beautiful in its own way, but nothing could compare to the overwhelming feelings of love, peace and the presence of Heaven in the room when Hyrum was born. He didn't cry or move for several minutes after he came out, but I knew him immediately, and I loved him immediately. The second I saw his face was the first time on this journey that I ever experienced denial. I thought to myself, "They said something was going to be wrong with him. Lethally wrong. You can't hand me a baby this perfect and tell me he's not going to live!" He was perfect!
Sadly, my denial met reality just 3 1/2 hours later. Hyrum waited patiently for everyone to go home, then passed peacefully in my arms.

We were given everything we had hoped for his life. We were able to give him a name and a blessing. He was welcomed and loved by his siblings. His grandparents, aunts, uncles and cousins all came to meet him. We swaddled him and snuggled him and sang to him. He got a birthday cake and we got lots of pictures. But he continues to give us so much more than we ever could've imagined!

Everything that I felt when I was pregnant with Hyrum has come back ten fold now that he's passed on. I want to be a better person, and I'm throwing myself out of my comfort zone to try to be a person worthy to call herself Hyrum's mom. Every little thing reminds me of him and how I want to do everything I can to get back to him. I want to be a better mom, better wife, better friend. I want to be closer to God, and in doing so, I grow closer to Hyrum. I look for people's souls now. Not their mortal vessels. I know that's what Hyrum would do. That's what he's taught me to do. I want to share God's love, because that's what Hyrum did for me.

Just like when I was pregnant, some days I fail miserably. At times, he pain and the emptiness is more unbearable than I ever could have imagined. The dark days are darker, but the bright days are brighter, and even though it's been less than two months, there have been days that have been completely bright, with no darkness in sight.

Some people live their whole lives not knowing their purpose, without living for anyone else. Hyrum did that with three hours. He has shown me that life, and what you do with your life MATTERS! You don't have to make millions or cure cancer, sometimes the simplest things, the simplest beings change the world around them. We've had so many people tell us about how Hyrum has changed them too. I know that that is part of his purpose. As much as I sometimes want to have him to myself, I know he was meant to be shared and to touch others.

D&C 18:15 says, "And if it so be that you should labor all your days...and bring, save it be one soul unto me, how great shall be your joy with him in the kingdom of my Father!"

I know Hyrum is there! His life was short but he lived it for us, and especially for me. He labored through his short life to bring others to God. I know his joy is great and that he's waiting for me to do my part to meet him there. Hyrum has shown me my purpose. He's taught me that I can have everything I've ever wanted out of my life, and that the things I truly want are not the things of this world. I'm not perfect, but I'm progressing and the thought of holding Hyrum again someday pushes me every day.

I've just begun to open up a world and a part of myself that I never knew existed. I wish I could've learned these things another way, but I'm forever honored that Hyrum is the one who was willing to come teach me.

Godspeed Little Man! Sweet Dreams Little Man!

Tuesday, May 24, 2016

7 Things I Wish I'd Known

“Your son will not be able to survive outside the womb.”  Those are words that I will never forget.  The day my entire life changed.  Knowing your child can’t survive, and each day could be your child’s last.  Your dreams and wishes turn from watching them grow up to just wanting to see them breath, to cry just one time.
What I wouldn’t have given for a list of what to do. I looked, but people don’t tell you what to do after a fetal fatal diagnoses.  They don’t give advice, most people don’t even know what to say.  These are the top 7 things I wish someone would have told me soon after my son’s fetal fatal diagnosis.

  1. No matter what choice you make, it is the right one.  That feeling of not knowing what to do, and how to handle things, that’s okay.  Make your choices out of love, as a mother or father.  You know it’s the best choice because you are doing it out love.  Let your love guide you, and then all your choices will be correct.

  1. Guard your relationships (marriage, significant other).  Grief is hard, and people grieve very differently (see below) that is not uncommon to rip relationships apart.  Remember to take care of you and your spouse.  Lean on each other, and understand that the anger is not towards him/her but towards your new reality.  A reality that no parent wants to find themselves in.

  1. We all grieve differently.  Way, way differently.  While I wanted to barely drag myself out of bed (and some days it was my 2 year old making me get out of bed), my husband wanted to go back to work as soon as possible.  While I cried over everything, he would just say, it’s going to be okay.  It didn’t mean he loved our son any less, just simply that he grieved differently.  It was very hard some days to deal with the way he grieved.  I wanted to yell often at him, why do you not love our son as much as me?  Why do you not care?  I knew though, I knew that he did care.   He did love him just as much as me.  He just grieves differently.  He grieves with distractions, and I grieve with giving myself alone time and being able to talk it out.

  1. Make as many memories as you can, while your child is still here.  Just because you won’t be able to take your child to the zoo when they come into this world, doesn’t mean you shouldn’t now. Make those memories now.  I took my son to as many basketball games as possible.  He loved them, he would jump up and down and go nuts every time.  That is a memory that I can always cherish.

  1. Take as many pictures as possible!  I know a lot of women hate to have their picture taken, especially when they are pregnant.  Take a moment and remove how you feel about your body and remember the love you are carrying.  The sweet child you are carrying.  You can even just capture your belly at places you would like to make memories with your child.  

  1. It is okay to be scared.  It is totally normal to be scared of letting the ones closes to you out of your sight.  Those worse case scenarios going through your mind.  That is your fear and reality trying to sort out this new reality your life has entered.

  1. You are NEVER actually ready. There were days that I thought I was ready, I was doing everything I could to prepare myself for the day my son would come into this world.  I knew he may come into this world alive with very short time or already passed.  I did everything I could to prepare for that day, but I wasn’t ready.  I couldn’t have prepared for that day, and that is okay.  I was not prepared to say good bye.  I was not prepared to walk out empty handed, and that was okay.  I just took it moment by moment.
When your reality becomes something that you were not prepared for, it becomes hard for you to function.  The basic functions of life become priority, and your brain tells you the rest isn’t important.  I wish I could remember every second I had with him, but the memories come in waves.  Sometimes the sadder memories engulf me, but as time passes the beautiful memories surface more often to bring joy to my heart. No amount of preparation would have gotten me ready for the day I had to say goodbye, but with a little guidance and a lot of support, that painfully joyful day was manageable.
~ ~ ~

Dana Thompson is the founder and photographer for The Angelfish Project, a blogger at To Carry Love and a middle school teacher. Dana is the wife to Roderick and they have three children: Elexander, who is four, Tristan, who has been with the Lord since February 14, 2014, and Adalynn, their 1year old. Dana loves playing with her children, watching Roderick coach football games, photography, teaching, and cooking.

Monday, May 16, 2016

Thoughts on Carrying to Birth, from a Couple Who's Been There

So there I was, a grown woman, curled up in the fetal position on the cold kitchen floor, screaming out while clutching my ever growing belly. 

My ever growing baby.  

Begging, pleading, demanding to be heard. By God? Maybe. 

I felt warm arms wrap around me, it was my husband huddling up behind me to hold me through it. 

There were many of these outbursts. Completely uncontrollable. Sometimes it felt like a complete dream (nightmare). I would wake up and for a split second, have to remind myself what was happening. 

Nighttime was the toughest for me though. I have a hard time explaining why, but it all would sort of flood my mind at the end of the day. It was a lot to process. Plus, that's when Gianna was most active. 

I would be lying if I said that right before every ultrasound post-diagnosis I didn't have a fleeting feeling of 'maybe she will be ok this time.' From a logical standpoint it sounds ridiculous, I know that. But it's our child, so logic is out the window. Heart trumps logic when it comes to our baby. After a thorough check by the perinatologist, once again we are reminded that no, she is not ok. In fact, it felt like every time we were hit with worse news than before. Every ultrasound discovered yet another reason for her to not make it. 

It's a struggle, this journey you're taking. It won't always be beautiful. Sometimes it'll be real, raw, and heavy. Some days you will feel broken down, unable to simply get out of bed (that's ok). It's all so very confusing. Do you start grieving after diagnosis or after he or she dies? How can you make the most of your time, while starting to grieve their impending death? I don't have answers for you, all I can do is share our experience. 

We stayed in bed for the first week after diagnosis. We got up to eat and that was it, sometimes we didn't even do that. Thankfully my lovely mother came almost daily just to help clean and cook, that was so crucial for us, especially because she didn't expect anything out of us. She came in, helped (sometimes without even being seen), and left. It was like she knew exactly what we needed each day, to be left alone, or to be supported. 

We read to Gianna every night. We sang songs with her. We said special prayers. We made incredible memories that will last a lifetime. 

Gianna's first baseball game
When I look back on my carry to birth journey, I have no regrets. None. 

There are things I wish I did, memories during our short time together that I wish we had made, but no regrets. Therein lies the problem, what would ever be 'enough'? How many more memories would ever leave me feeling completely satisfied? 

Well, a lifetime. Me passing before her. 

We've all said it a thousand times, but I'll say it again, your child is still worthy regardless of diagnosis. Your child is still the same beautiful child you started with. We love them the same through diagnosis and beyond because their illness/disorder doesn't define our love for our child, inside or outside of the womb. 

Life will never be like it was before, ever. I was talking to my husband about this and he said it's odd, because even though life has completely changed, we've had many times since where we've felt more alive than ever. We feel it's our duty to live for our child that couldn't stay long here on Earth. It's not easy and some days your grief will get in the way of you 'living to your fullest'. You'll learn to live with it in your own way. If someone says 'just give it time' don't count on time. It's ok to feel that pain, in fact, it's necessary. 

People will come in and out of your life after losing your baby. You'll learn who will stay in forever, and who maybe shouldn't have been there in the first place. It's not about people that are "with you" or "against you", but about those that understand or at least respect what you feel, not just now, but also in the future. Our appreciation for those that fit this mold is overwhelming as its that support that has continued to help carry us through. Feel free to involve them in whatever small things you do for remembering your angel. You may be surprised to find that your loved ones will not only feel appreciated to be involved in something so special to you. 

Life will change again and again. Grief will change again and again. What you need in grief will always be evolving. Going through the loss of our baby made us realize what's really important. There are a lot of previous stresses or dramas that honestly, just aren't that serious to us anymore. It opened our eyes to what really matters in life. My hope is that you find what and who your heart needs (or can't handle) on this lifelong grief journey. It's a learning process that will ebb and flow with just one constant; your undying, unwavering love for your child.

~ ~ ~

Steve and Christine have been together for 11 years. They are what some might call 'soul mates' and have experienced almost everything imaginable together, including losing their first beloved child, Gianna Marie. They've gone on to have a surviving son, Romeo, and include both of their children in their daily lives.

Sunday, May 1, 2016

A Gift for Mother's Day

by Bethany Conkel

I was not expecting to find myself in the card aisle at our local grocery store. I was just trying to kill a little time and ended up there by mistake. It’s not an area of the store I tend to frequent. 

As I walked through, Mother’s Day cards seemed to jump off the rack. 

I briefly glanced at a card with characters from Disney’s 101 Dalmatians on it. A cute love note to mom was written in a clever ditty.  In that moment, I couldn’t help but wonder what type of card my son would have given me this year. Would it have been handmade with brightly colored scribbles or store bought with his favorite cartoon character printed on the card? Would he have given me a flower planted clumsily in a pot, or would he have helped to make breakfast-in-bed for me? 

It’s been 3-1/2 years since my son was born and passed all on the same day. Although it has been several years, I still wonder sometimes what he would have been like and what life my life would look like with him in it. What would my Mother’s Day turn out to be like with a 3-1/2-year-old little boy running around?

As I walked out of the aisle, I felt sad that I will never get a card from my son. I will never get to cherish a special Mother’s Day gift from him. As I continued to work my way through the store, I realized something. Although I will never get a physical gift from my son, he has still given me a gift. MANY GIFTS, in fact. 

The first gift my son gave me was the gift of motherhood. My sweet boy was my firstborn and made me a mother. Although the time I had to mother him in my arms was short, I still get to mother his memory daily! I will be forever thankful to him for making me a mother. 

My son also gave me the gift of empathy. Before saying hello and goodbye to my son, I never understood the loss of a baby. I had met a few bereaved mothers, and honestly never understood why the pain lingered, even years later. Now I know. Now I understand. Now I am able to connect with bereaved mothers, support them, and empathize with their feelings. 

My son gave me the gift of knowledge. Before receiving a terminal diagnosis for my son, I never knew families even faced such things. I had never heard of anencephaly, trisomy 18 or 13, limb body wall complex, or Potter’s syndrome. I did not know things like perinatal hospice, bereavement doulas, or neonatal organ donation even existed. Although learning about these things has been difficult, receiving the gift of knowledge about this world has changed my outlook on life and allowed me to help others in new ways. 

My son gave me the gift of friendship. I cannot even count the number of people I have met, connections I have made, and friendships I have forged because of my son. Some friendships are so deep that I feel like I gained extended family members.  I have met some truly incredible people, and my life has been enriched in so many ways because of them. Had it not been for my son, I never would have met these amazing individuals. 

My son has taught me that life is both fragile and precious, and it should be embraced -- a lesson that I very much view as a gift.  

Although my son isn’t here to give me a special hand-crafted bobble to place on my desk, or a beautifully colored picture to hang on my refrigerator, he continues to bless my heart and give to me in so many ways. His life has helped shape who I currently am as a person and continues to influence who I will become. This Mother’s Day, I am going to be thankful for the many gifts my son has given me. 

If you are a bereaved mother, I hope this Mother’s Day will be gentle for you. I encourage you to look for some special gifts that your little one has given you. I hope you are able to find something amazing. 
~ ~ ~
Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through and serves with Sufficient Grace Ministries.
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