Thursday, September 24, 2015

Ten (and a half) months

There is a part of me that wants to be brutally honest, but there is another part of me that wants to hold back because I fear it will not be well received. Everyone seems to have their own ideas and advice about how I should handle my grief and it seems the ones with the biggest opinions are the ones who have never lived in my shoes (or even tried to imagine being in them). I have learned some pretty hard truths about how grief makes people uncomfortable. But your discomfort in merely observing my grief is nothing compared to actually living it. So for all the people who truly need to read this, I hold nothing back. I share my joys, my sorrows...I share my heart.

10 1/2 may seem so insignificant to some people. It's not really a big milestone with anyone's babies. Maybe your child started crawling, stood up, or even started walking by 10 1/2 months. 10 1/2's not even worthy of a well visit or a page in your baby book.

But to me, 10 1/2 months means Lily has been in Heaven longer than she was with me. I have now lived without her longer than I got to live with her. And so much more than I ever crushes me.

A few weeks ago I awoke on Sunday morning sweating and shaking from a dream. In my dream, Lily was there. It was just after her funeral and Jason and I both realized we could have one more chance to see her. We would have one more chance to kiss her and to hold her. One more chance...I can't even begin to tell you how much I want that one more chance. Ten and half months later...if I got it, I don't think I would ever let go.

But I didn't get it. I didn't get to hold her. I didn't get to kiss her or tell her how much I love her. I didn't even get to see her. I didn't get just one more time...not even in my dream

I went to sit on the couch, trying to calm my nerves, trying not to shout out in my anger and despair of that moment. When Jason woke up he could tell I was shaken. I could barely get the words out before I crumbled in his lap and started wailing.

Somehow I got myself up to shower, but continued my sobs and ugly cries there. I pulled myself together enough to get to Mass, but I knew it would be a fragile day.

The whole Church was singing "How Great is Our God" and it's usually one of my very favorites. But on this morning, in that very moment, I couldn't sing those words. In that very fragile moment it all felt like a lie. My lips trembling and my voice shaking, I could hardly breathe. Big, giant, fat tears filled my eyes and once again, I wept.

I wept because I didn't even get to keep her in my dream. The one place where our wishes can come true and all at once all the wishes/prayers that didn't come true came crashing and thrashing into me like a wave I didn't see coming. My heart was so full of anger. 

All of those wishes and have time with Lily alive, to go into labor naturally, for a smooth delivery, to not have to stay in the hospital without my daughter, for our dispute with insurance to be settled (still not), to be able to conceive again without trying (still not), for just one picture of Ted holding Lily, for any amount of time with my daughter, for no regrets. 

I didn't get any of those wishes, so I thought maybe, just maybe I could have some sweet moments with my daughter in my dreams. But I couldn't get to her.

And for the first time on this journey, in this new life I now live, I was truly angry at God. For the first time I couldn't sing how great He is. He couldn't even give me one dream.

The anger and bitterness quickly leads me down the road to despair. And friends, I know what despair looks and feels like and I despise those feelings of hopelessness. I hate having any feelings of anger or despair in relationship to Lily. It should go without saying, but I will say it anyway, I am not angry with Lily

She is perfect and pure. She is everything that is good in me. She is the greatest accomplishment of my life. She is the one thing I know with absolute certainty that I did right. She is the reason I choose to forgive those who don't want to understand or ignore my grief. She is the reason I get out of bed every single day. She is the reason I would do it all over, again and again, in a heartbeat. 

She is the reason I will spend the rest of my life striving towards Heaven. Because friends, in Heaven she will no longer be beyond my reach or just in my dreams...she will be in my arms. Knowing that with all my heart, leads me out of the despair and my Hope is restored. And once again I find myself grateful for my God who shows me mercy that never ceases and infinite grace upon grace as I walk this long and winding road of my grief.

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.