Keep Calm and Parent On

By Bethany Conkel

After I lost my son and the initial overwhelming grief lessened, I was left with so many questions and thoughts. I repeatedly asked myself, “What now?” Most people encouraged me to “move on” and “let go,” explaining that it was not healthy to linger in the emotions of what had happened. Although I wanted to move forward and let go of the sadness, I did not want to leave my son behind. It felt like if I moved on or let go, his memory would die. And, to be honest, I did not want the memory of my son to end. I wanted to continue to parent my child. After all, just because he was gone did not mean that I stopped being his parent.

So the questions continued…how do you raise a child whose life on earth was brief? Why would you bother creating a legacy for a baby, especially one that has passed away? How do you parent a child who is no longer in your arms?

Maybe you have felt the same. Maybe you have asked similar questions and received advice similar to what I received. Sadly, there are no parenting books or how-to manuals on how to raise a child who has passed.  No go-to pamphlets on how to create a legacy for the baby you lost.

So what are the answers? How do you approach being a parent to your sweet baby?

Well, I think the answer is going to be a little different for each person. No two of us are alike in our grief and healing, but we are all still parents. I think the answer truly lies in how we approach our child’s memory on a day-to-day basis. The answer is in the little things that we do to honor and remember our baby. It may also be in the tangible ways that we help others. Each of our parenting styles will be unique, and thus the things we do will be different. 

One of my favorite ways to parent my son is by talking about him. I love letting other people, even complete strangers, know that he existed. I am always eager to share a memory of him and weave it into conversation. I talk about our experience frequently, very freely, and with great love. During holidays or special occasions with family and friends, I will often try to find some small way to incorporate my son into the event, even if it is in a way that only I can recognize. I also love sharing pictures of my boy – they fill our house, are in my Bible, on my phone, and frequent my Facebook page. For me, doing these things has allowed me to feel like I am continuing to parent him. 

I also do my best to take the things that I have learned from my journey and share them with other mothers and fathers who are currently walking this hard road. I love giving resources and ideas to others who are still carrying a baby whose life will be short. I find it a privilege to walk alongside another mother or father and offer encouragement or advice. I’m honored when someone opens up to me about their experience and I can listen to their heart. For me, I find that I can raise my son through the things I do to help others. I have found that through public speaking and educating others about my son’s condition, and the fact that he was an organ donor, I am able to create a legacy for my boy.

Please realize that these things do not always come easily. Sometimes it is downright painful. There are times that I just want to be alone in my thoughts and feelings; times that I get choked up as I talk about my son or recount parts of our story. There are also some memories that I have treasured in my heart and have decided never to share with others. I have found at times I am frustrated that I am educating others rather than educating my son directly. And have found it is hard to balance spending time with my living child and investing in my child who has passed.  I have been both praised and criticized for my approach. I have left people scratching their heads in wonderment, but for me, this is all part of my parenting journey. This is how I move forward, rather than move on.

As I stated before, each of us has a unique parenting style, and will do things differently when it comes to keeping our little one’s memory alive. My way is not the only way. So, what do you do to keep your child’s memory a live? How do you continue to parent? Are there special things you have done to create a lasting legacy for your baby? It doesn't matter if you have done something big or small, we would LOVE for you to share. Please join in the conversation by leaving a comment below.

If this is a new concept for you, I would like to challenge you do something today in honor of your baby. It can be as simple as saying his or her name out loud in conversation, or telling a complete stranger about your child. Maybe you will show a special picture to a trusted friend. You might do a random act of kindness in your child’s name. It may be donating school supplies to a child in need.  Or, you might start an entire foundation in honor of your little one. Whatever it is that you decide to do, please share it with us. Comment below and tell us how you have taken the first step in continuing to parent your child.

Please know whatever you do, big or small, public or private, you are an amazing parent to your child. 

This week my encouragement to you is this: Keep calm and parent on! 

~ ~ ~

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 Stillbirthday.com and serves with Sufficient Grace Ministries

Call Me if You Need Anything

by Joanna

After Asia's death, we notified everyone with one large mass email, as we just couldn't bear the thought of all those phone calls and the retelling of the details over and over again. Most people responded with a quick line or two via email. I'll freely admit that this seemed a little odd to me, as it was completely impersonal and I would have thought that condolences were extended via phone call, flowers or cards sent to the home, but perhaps since we sent out an email, they also thought an email response was sufficient. There were some who didn't even respond to the email and there were some whose only acknowledgement of the news was to "Like" a bereavement photo I posted on Facebook.

In our original email, we included a list of things to say/not say to a grieving parent, as I thought it might be helpful to our friends/family who were concerned about what to say to us. One of the points on the list was that horrid statement "Call me if you need anything". Our email asked that our friends please NOT use this statement - it would be highly unlikely that we would be reaching out to anyone in our deepest and darkest days, following the death of yet another child. We asked that if people wanted to help, to take the initiative and come up with something that might be helpful to us and simply do it, or give us the option of saying "Ok" or "No, thanks". I had hoped that maybe someone would offer to take Sophie to the park, drop off a meal, check on us, or something along those lines, as I was incapacitated post surgery and debilitated with grief.

Many of the reply emails, however, ended with this exact wording. It really left me wondering if people had read our email in its entirety. I couldn't understand why the burden was on us to make requests of people - I felt that I had just made a request regarding this statement and no one accommodated my request, so why would I make another request? I was fairly certain that any requests I made would fall on deaf ears, once again.

In the days after Asia's death, I couldn't think of food, or showering, or taking Sophie out of the house or anything for that matter. To be perfectly honest, I think Freddie and I lay on the couch crying most of the first 3 days (before he had to go back to work) or distracting ourselves by watching crappy TV. We ate frozen pizza for the first few days round the clock, and if it wasn't for Sophie's food schedule, we probably would not have eaten at all. I had really hoped that our closest and dearest friends/family would step up and take care of us in some manner.

A psychologist I see at the Pain Clinic told me that people are busy with their own lives and that sometimes it's like swimming against the current - you have to literally throw in a lifeline and make them come ashore to get them out of their current. I understand the analogy, but honestly, I was the one who needed a lifeline, and I was in no condition to be reaching out to anyone else.

~ ~ ~

Joanna is a stay-at-home mom who has just entered her 4th decade. She is lucky enough to be married to her best friend, Freddie, since 2007. Five years ago, she had to stop working outside the home at a job she really enjoyed due to the chronic pain that has been with her for over a decade. Joanna and Freddie are parents to five children, yet only one living child: 

- Sammy, whose miscarriage at 11 weeks has forever changed their lives, 

- Sophie, a rambunctious 2.5 year old who fills their lives with light and love,

- Asia, who was carried with love despite her diagnosis of Alobar Holoprosencephaly and Trisomy 13, and never took a breath outside the womb,

- Teeny, who was here one minute and gone the next, and

- Tiny, who joined Teeny the following month.

Joanna carries all of her children daily in her heart and relies heavily on her Catholic faith to make it through each day. Joanna struggles with missing her children, her chronic pain and continuing on the journey to provide Sophie a sibling. You can follow her journey on her blog, A Painted Life. 

The Diagnosis

by Kayla Schacht

The emotions a positive pregnancy test can bring a couple can vary from extreme happiness to complete fear. When we got our positive test, it was somewhere in the middle, a mixture of shock and joy. We had suffered an early miscarriage at 6 weeks the month before and, even though we were trying for a baby, we didn't expect it to happen so soon. We were so nervous to tell anyone due to our previous loss but couldn't contain our joy to share the news of our newest Bean that we announced our pregnancy on Christmas. Even though we were only a few days passed the six week mark we felt "safe."

Everything was going amazing and I was enjoying all the small things pregnancy can bring, even the morning sickness because it meant our Bean was still with us. My midwife asked that we come in for an anatomy scan around 12 weeks to just to "check things out" and since I have preterm labor issues to make sure my cervix was handling it all ok.

On February 4th, 2014 we scheduled our scan and we were so excited to see our baby. We went in full of excitement! We brought our two youngest girls with us, ages one and two, and even though they really didn't understand, we were so excited to share that with them. Having 4 girls before our newest bundle we were pretty used to how ultrasounds went and were sitting there joking about if our baby was a boy or girl -- with me not being far enough along we knew we wouldn't know yet but it was fun to imagine -- and just sitting in awe of our Bean. We thought everything was fine until the ultrasound tech stopped and started really looking at our Bean and said that she would like to call my midwife in to have her look at something, if we didn't mind waiting. As a "veteran" mommy I knew this wasn't right, the ultrasound was not going the way I knew it should, and I started to panic. I looked at my husband for reassurance that it was nothing and that they were mistaken and he kept telling me he was sure it was fine and that he loved me.

It seemed like days for my midwife to finally come into my room and examine our Bean for herself. When she finished, she sat down with us to say she was concerned with the amount of fluid on the back of the baby's neck and that it was thicker then normal. She couldn't tell us anything more since she wasn't trained in diagnosing and told us we needed to see a specialist. She did explain to us that the fluid could be a sign of nothing or could be a sign of some chromosome abnormality. I remember sitting in the office feeling my head spin and the feeling of complete helplessness fill my body. There was no way this was happening to MY baby. I did everything right. I quit smoking, ate healthy, took my vitamins and even took all the meds the doctors had prescribed to help my cervix strengthen. They sent us home with nothing but our ultrasound pictures and Google. My husband instantly started searching the internet for anything about our Bean's issue. He read article after article and found stuff from it being an extreme thing to it being nothing. We were waiting on my midwife to call back to let us know when they could get me into the specialist to get more of an idea of what was wrong.

We finally got the call and they told us they were a month out, but my husband knowing me like he does knew there was no way I could emotionally handle waiting that long so he called every doctor in our state begging them to fit me in sooner. Well his persistency paid off and we were scheduled for a week later. That week was the longest week of my life. Wanting answers so badly but also dreading knowing. At the time my husband was working nights and so I had so much time to myself to think about all the options and what we would have to overcome as a couple and family. I shed many tears through this week. I couldn't sleep. Eating was a huge chore because I was always nauseous due to stress. The night before our appointment we sat in bed and thought of what was to come. We decided then no matter what our Beans diagnosis was, we would give our child life.

The next morning I couldn't even see straight. I got my two older girls up and ready for school while trying not to break down completely as we did not want them to know something might be wrong. We got them off to school and started the 20 minute drive to the office I will now hate more then anywhere on this earth. I wanted to scream at my husband to drive slower, to turn around and take me home. But I sat quietly in the passenger seat staring straight ahead begging God to spare me the heartache I knew in my heart was in my near future. We got back into the room they were going do the ultrasound in and I remember everything so vividly; the smell of the wipes they used to sterilize everything with, how cold the room was, the sound of my two younger playing so quietly, the feeling of my husbands strong hand holding mine and the sound of the door opening as the lady who was going do the test came in. We sat there trying to enjoy our ultrasound of our Bean and asked the ultrasound lady if she could tell us what we were having. We knew something was wrong when she told us she couldn't because the baby's organs were on the outside of our child's body. I started shaking not knowing if this was something they could fix or why this happened. She did a few more scans at different angels and then told us the doctor would be in to talk to us. My husband sat and held me as I finally completely broke down knowing my life would never be the same, that I was forever changed. The doctor came in and sat down and put more jelly on my stomach and started to do the scan again and pointed out what was going on with our baby. We saw that the baby's organs were exposed, there was something wrong with the baby's legs and one wasn't developing at the same pace as the other and looked clubbed, the spine was incredibly crooked and from what the doctor could see the umbilical cord was extremely small. I started begging for him to check to see what the sex of this little baby was, he looked and we were having another girl!

My precious little girl.

The doctor then gave us the grim diagnosis of Limb Body Wall Complex. This was such a foreign thing to us and we had no idea what this even was, the doctor explained due to organs being exposed in such a major way there was nothing we could do for our princess. We asked a few more questions about what was to come and then the options for our angel’s future and it was then I knew I would never bring home this little baby who I hardly know, who I hadn't even felt move yet home. I suddenly felt so protective of my child as termination came up and refused and snapped at the doctor and told him I would never murder my child. He looked at my sympathetically and apologized. The next 20 minutes while my husband kept asking questions and figured out our next steps were I went into complete shock and everything was blurry. I started whipping off the jelly stuff off my belly and sat up and kept going over the words the doctor had stated "incompatible with life". How could my princess not be compatible? I loved her so much and I was questioning God's love for me and my child. The doctor left and I got off the table and started walking out, leaving my husband to get the kids and follow me out to the car.

Stepping out into the sun I knew at that moment I was going to start the hardest journey of my life: our journey of carrying to term with a fatal diagnosis.

~ ~ ~

Kayla Schacht is a writer from Utah. She is married to her knight in shinning armor, Bryce, and they have 5 beautiful girls. Her youngest princess lives in the clouds after living for 48 minutes after birth, all which were in her daddy's arms. Elly Jae was diagnosed with a fatal birth defect at 13 weeks gestation. She spent 31 weeks and 5 days safely in her Mommy's womb where she was cherished every second. Elly Jae has changed not only her parents and sisters lives but lives of complete strangers. Find her on Facebook, at Prayers for Little Elly Jae.

The Path You Never Wanted to Travel

by Alex Hopper

This path you're on: Where you've just been told your sweet baby will not live after birth. The baby you've prayed for, hoped for, prepared for, and waited so patiently for, has just been given a death sentence. This path, though it is narrow, it has been walked before. Many parents before you have found themselves dropped onto this dark and treacherous path. With no warning the bright and beautiful road that leads to a happy, healthy baby has become a dirt path that seems to lead into a deep dark pit.

How could this happen?

How could everything change in a second?

And most importantly, How can you go on from here?

I know it seems impossible. It seems that it would be impossible to keep on living, hoping, and carrying your child. And though you know the ending, that your sweet child will not live in this world, you choose to do the impossible. You make the brave and terrifying choice to carry your child at all costs. To give them the best life possible, if only the womb. And I am here to tell you that it is possible. It will be the hardest thing you've ever done; at least it was for me. It was a daily challenge to stay strong and positive for my child. To keep on living when it seems as though your life is over. But I am here to tell you, IT IS WORTH IT. It is worth every terrifying doctor’s visit, every sleepless night, and all the doubt.

And not only is it worth it.

It is amazing.

It is an amazing privilege to carry your child. A privilege denied to many, and squandered by even more. And as you do the impossible you will learn to fit a lifetime of love into a few short months. You will learn to love in a way that you never thought possible. To give so much of yourself, and yet to still feel so fulfilled, because this is truly a sacrificial love. And though you may not meet your child alive, or they may only live for minutes, they are still your child. You are their mother. You are their father. You are a parent meeting their baby for the first time, and it is beautiful. There will be pain, deep agonizing pain that can only come from saying hello and goodbye to your baby in the same moment. There will be sadness; sadness that will break your heart into a million pieces. And though your heart may be shattered, there will still be love. An overshadowing, unbreakable love, a love that makes it all worth it. A love so strong, that all the fear and heartache has become worth it. And in the end this long dark path has led you to your baby.

Your baby was worth it.

They will always be worth it.

~ ~ ~

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. 

Dear Beautiful Mother: A Letter From One Carry to Birth Mama, to Another (and one for Daddies, too!)

by Heather Kimble

Dear Beautiful Mother,

I am sorry that you are going through this. My heart breaks for you. I know the pain all too well. I wish there was something that I could or say to take your pain away or even just lessen it a little. Please know you are not alone, even though it probably feels that way right now. You are a brave, selfless, loving, and strong Mother. You chose life in the midst of darkness and maybe even against the recommendation of others. You chose to enjoy and spend all the time that you have with your precious baby. You refused to allow anyone to take that away from you.

But inside I know you are broken, devastated, confused, and scared. I know you are in so much pain that your heart physically aches. You cry yourself to sleep. You are so angry at times that you just need to scream at the top of your lungs. Nothing else matters to you right now except for your baby. You tell and ask yourself, This can’t be happening to me, It wasn't supposed to be like this, Why will my baby die but hers get to live, What did I do to deserve this, Why me, Why my baby,” and so many more questions and thoughts. I wish I could tell you that you will get answers and understand, but, even though you may get some, most will go unanswered. Understand that you are not to blame; you did, and are doing, everything in love for your baby.

You will come to feel aged well beyond your years. You will not know what to do or what to say next. There is absolutely nothing wrong with that. Please know that it is ok to break down. It is ok to have all of these emotions. You are living every parent’s worst nightmare.

I wish I could tell you that it will be ok, but I can’t. I can tell you that you will get through this and you will be forever changed. Take everything second by second, then minute by minute, then hour by hour, then day by day. Allow yourself to grieve and feel all of your emotions. Don’t rush yourself, there is no time limit. This grief is part of your “new normal.” Don’t allow others to rush you or tell you are doing it the wrong way. Surround yourself with people who love and support you. Distance yourself from those who don’t.

I am sorry those around you are telling you it will all be ok. They share stories of miracles and compare carrying your baby to term with their friend’s miscarriage. They tell you that the doctors may be wrong because of some “a friend of a friend” story. I am sorry some of your friends and family are avoiding you like you are contagious. I am sorry for all the horrible comments people are saying to you, Will you try again, At least you’re young and can have more, Can you have more, At least you didn’t have much time to get too attached, and so many more. Some mean well but just do not understand. You want this baby. You are attached to this baby. You love this baby.

You enjoy every precious moment with your baby. Make memories (like seeing Santa Claus, vacation, etc.) eat food that you love (like strawberries, steak, etc.) and that kids usually love (chicken nuggets, mac n’ cheese, etc.). Sing, talk, and read to your baby. Do all the things you are able and want to do with your baby. It does not matter how small or big, how inexpensive or extravagant. The only thing that matters is that you enjoy the time and do what feels right and what is important to you.

When your baby is born (passed away or alive) spend all the time you need with your baby. Hold, read, sing, talk, and just be in those moments with your baby. Take lots of pictures with and of your baby (even if you choose not to look at them). Bring a special blanket, outfit, stuffed animal, or whatever you want for your baby.

It does not matter what others think.

Communicate with your husband/partner. Each of you will probably be grieving differently from one another. Spend time together as a family. Go on dates, listen to one another’s thoughts and feeling, cry together, and just hold each other.

Take care of you. I know it is hard to even think about that right now, but it is so important. You need emotional, physical, and mental breaks from everything around you. Listen to music, enjoy a cup of tea, read a book, enjoy quiet time alone, take an extra long warm shower or bath, paint your nails, whatever it is that you enjoy.

Oh sweet beautiful Mother, I wish I had the words to truly tell you how sorry I am. It hurts, and while the pain will not always be so raw, it will always be there. A piece of your heart will always be missing. Know that you are not betraying your precious baby by living your life and moving forward, because you will always have their memory and the love you have for them in your heart.

I have you my prayers and thoughts, Matthew 5:4.

You are a beautiful Mother.

Love Always,

Heather

~ ~ ~ 

Dear Dads,

I wanted to write you a letter now that you are a father who is living with a baby that has received a fatal diagnosis. This could be the hardest thing a person has to deal with. Not only do you know that the end result is nothing that you want, you are stuck being unable to hold or comfort your baby. The good news is that your wife is carrying to term. This may seem silly to you as a guy, but these moments are the only time you will have to spend with your baby. Cherish these moments.

Another thing that is possibly even more important is to support your wife and her decision. Even if you don’t understand her choice, support it. She is going through as much anguish, if not more anguish, than you are and she needs you more now than ever. This decision matters to her and she needs you to be there to hold her up when she is weak. The time ahead is going to be very hard to struggle through.

You are travelling down a path that you already know the ending to, and there is no changing that. You have to go down this path together. If you are not united, you will not make it.

Don’t lose sight of the fact that this is your chance to make the most of your time with your baby. Try and enjoy all the things that you can. Make every moment you can special while you have a chance. If you don’t make the most of it, you will regret it. This is your chance to make as many memories as you can.

In God’s Love, 

Jason Kimble

~ ~ ~

Heather Kimble lives in the Philadelphia area. She is married to her best friend, Jason and is mommy to Hannah Sue Kimble. Hannah is her only child. Heather carried Hannah after receiving a fatal diagnosis and was told to terminate. Heather was told to terminate based on the serious risk to her own personal health. She doesn't believe in termination and chose to carry Hannah with love. Hannah passed away and was born sleeping on December 23rd, 2013. Heather and Jason treasure every moment they had with Hannah during pregnancy and after delivery. Hannah has inspired a nonprofit started by her parents to help others and to help break the silence by sharing their journey of baby loss. Visit her blog, Hannah's Heart and Love, and follow her page on Facebook.