Wednesday, August 26, 2015

Grief is Like a Box of Chocolates

Ok friends, it's truth time here. Grief is hard. It's actually harder than I ever imagined it would be. Grief is alive, it changes daily, sometimes hourly and it looks different on each person. No two people grieve the same way and even harder to understand is that grief evolves sometimes minute by minute. I recently read this blog about grief and this sums up why it can be so difficult to navigate:

"Grief confuses me; it wants everything. It’s all over the place. It wants people to know and remember it, but it doesn’t want to be the center of attention all the time, but some of the time, but sometimes not at all. It wants to be reminded of the good things in life, it wants to be sad, it wants to be distracted. It wants to scream, it wants to be quiet, it wants lots of people around, it wants to be left alone. It doesn’t know what it wants."

This is the reality of grief. It's a living, breathing, ever-changing part of you that will never fully go away. That is the truth and that is what the world outside of your grief does not understand.

So this is my story, my journey with my grief. You may find it similar to your own story or something completely different and friend, that's okay. No two people will grieve the same.

When Jason and I were faced with our daughter's terminal diagnosis, my whole world stopped. Time stood still for several weeks, but even then, eventually the world moved forward and my husband and I were left to face this journey on our own.

We experienced anticipatory grief, which many families go through with a terminal prenatal diagnosis. It's starting the process of grief before your loved one passes and it has its own full range of emotions. For us, it looked like naming our daughter, buying outfits for Lily, knitting hats, taking family pictures, etc. It helped us get through each day leading up to her birth. We became hermits, only spending time with each other, and our son. We cried a lot, but somehow we still smiled and still made amazing memories with our daughter while we had the opportunity.

But here's what I didn't know about anticipatory's not really grieving. It's a lot different than actual grief. It's something all on it's own. Because even though you are anticipating your child's most likely fate, there is a part of you that holds on to hope (for a miracle, for a misdiagnosis, etc.) until the very last second. Even in the final moments I prayed they were wrong, I begged for her to be healed, and I hoped for my daughter's life.

It doesn't replace the grieving you will go through when your child passes doesn't even come close. That's what I didn't anticipate. I didn't anticipate to be in shock. I didn't anticipate to feel "normal" after she was born. I didn't anticipate to feel relief. And I didn't anticipate the guilt or anger that would wash over me months later.

After Lily was born, there was a sense of relief. That may sound awful. I was NOT relieved she was gone. I have missed her every single minute of every single day from the moment they took her from my arms. But I was relieved that the anticipation was over. I was no longer anticipating, waiting, and wondering what would be my daughter's fate. It was finally right in front of me.

Lily was born two weeks before Thanksgiving and while I was incredibly sad, the Holidays were a welcome distraction. I made it through Thanksgiving, Christmas, and New Year's thanks to my incredible husband, our precious son, and my amazing family in Iowa.

Maybe it was the pain meds and most likely I was still in shock, but I felt "okay". People would ask me how I was and that was my response..."I'm okay". Other loss mamas knew what that really meant. They knew it really meant I wasn't okay at all. They knew there really wasn't any word that could truly describe where I was in the first moments and weeks of my grief. But they knew to keep asking and eventually I would be able to share more than just an "okay". Those who don't get it just accept it and think you are okay because most likely, they desperately want you to be. So they went on believing I was okay, so much that I almost believed that I was too.

But then something happened after the holidays, about six weeks after Lily was born. Someone shared with me that the grief truly begins, "when the last casserole is dropped off." When the world goes back to normal and you are stuck saying, "Now what? Now what do I do? And what the Hell is normal anymore?!" That's what happened. The dinners stopped coming, people stopped asking, friends stopped checking in. My grief was really just beginning and everyone thought I was just "okay" and handling it all very well.

I remember being out with a few friends having a glass of wine and halfway through the night, grief knocked the wind right out of me. I remember sitting there, fighting back tears, and having difficulty taking a deep breath. I "left" the conversation and zoned out. All I could think was, I shouldn't be here. I should be home. I should be nursing my baby. I should be home and sleeping because she would be sleeping. I should be holding my newborn daughter.

I learned in an instant that grief doesn't care if you had plans with friends or if you are standing in line at the grocery store. It doesn't care that you put on make-up or had a date night planned. From that moment on I began to truly embrace and feel my grief and every emotion that comes with it. I realized in that moment, I was not the person I was before and right then and there I knew I would never be the same again.

I feel people around me...looking, staring, and waiting for me to get back to my old self. For awhile I thought it was possible. Now I know otherwise. It's like losing a limb. Do you wait to see if the arm will grow back or do you start to live life without it although constantly aware it's missing? I lost a part of me that can never be replaced. Now I have to spend the rest of my life learning how to live without my daughter. That's what my grief looks like.

But now, I embrace it. I don't want to forget. I don't want to "get better" or "get over it". This grief represents a love greater than anything I had ever known before Lily. This grief reminds me of what I long for and what I will spend the rest of my life looking towards and reaching for...Heaven with Lily. This grief reminds me every minute of every day that I held and love a pure and perfect soul with no blemish. I grieve so much because I love so much and I would never trade that for anything in the world.

"Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once. She is here, but part of her is elsewhere for eternity." ~ Author unknown.

~ ~ ~

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.

Tuesday, August 18, 2015

If They Only Knew

by Jessi Snapp

I carried my son during the warm months of spring into the heat of summer. It happened to be t-ball season for my oldest child and on the first day of practice, I found myself sitting next to a woman in the bleachers. She too was expecting a baby but was a few months further along. We sat next to each other and spoke only a few words as we both focused on watching our boys. We both wore stretchy summer maternity shorts and tight fitting t-shirts to show off our baby bumps. We were both married and had boys the same age and we both were expecting our second child, both of which were boys. To bystanders, we probably looked like friends.

As the season carried on and we learned that our son had a life-limiting condition, I had to watch this other woman carry her healthy baby boy and live out a blissful carefree pregnancy. Three times a week I had to sit in her presence and I was painfully reminded how very different our lives really were despite having so much in common.

During the warm spring months, the cottonwood trees start to fill the air with their seeds and it resembles falling snow. I would sit in the cottonwood-filled air as I watched my five-year-old play. I would soak in the beauty of the world around me as I tried to keep myself together during some of the most trying times of my life. I sat just a few feet away from this other woman, who was a painful reminder of what I wanted and could not have.

The end of the season drew near and one day the other woman was nowhere to be found. She had delivered her baby. Her beautiful, healthy baby boy. The following week she came back and sat on the field as she held her newborn son. She sat and cuddled him in the cottonwood-filled air as everyone "oohed" and "ahhed" over her new baby. It was a beautiful sight, but a heartbreaking one for me...the pregnant mom sitting on the other side of the field, inwardly praying for a single moment like that.

The reality is, I didn't want her life. I didn't want her baby. I wanted that moment. I wanted it with my baby. I wanted to sit in the warm spring air and hold my baby ever so tightly. I wanted him to feel the warmth of the sun and my love as people "oohed" and "ahhed" at how beautiful he was. I wanted to tell them, "Doctors didn't think he would make it... but look at him! He's beating the odds! We are grateful for this time." I accepted that his life would be limited, but I prayed and hoped that I could make precious memories with him like the one the other woman had with her baby boy.

I sat and dreamt of that moment and what it might be like to venture out with my son
who would require oxygen and a feeding tube. I hoped for just one, somewhat normal moment with him in my arms. A moment that other mothers typically don't realize the beauty of.

Throughout my pregnancy, I was surrounded by expectant mothers who seemingly failed to realize how blessed they were. Like the mother who sat across from me and complained about her pregnancy and how resentful she was because of the weight she gained. Or the expectant mother I overheard at the park telling another woman, "Thank God you aren't pregnant... It's hell!" It seemed that all around me there were expectant mothers who were all expecting healthy babies and failing to see how truly lucky they were. Though I am sure I was hypersensitive to it, I felt like an outsider looking in, constantly shaking my head and thinking, "if they only knew."

If they only knew how lucky they were not to have the impending doom of losing a baby lurking over them. If they only knew how sleepless nights because of a crying baby are so much more peaceful than sleepless nights caused by complete and utter emptiness. If they only knew that losing those ten extra pounds pales in comparison to losing a massive piece of your heart. A piece you will never get back.

If only they knew how a single moment could mean so much to someone like me. If only they knew how desperately I wanted things to be different. If only they knew what it was like to plan a birth and a funeral simultaneously. Maybe then, they could see the blessings in the mundane moments. The moments I dreamt about and never had. The ones that now make my knees collapse and cause countless tears to fall. The ones that I would have done anything for.

The moments that are now just a figment of my imagination.
~ ~ ~

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.
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