30 weeks not pregnant

That's where I am right now. Counting the weeks and months of what should be. 

I have a 3 year old. 

But in a few weeks I should also have a two year old and a few weeks after that I should have a newborn. 

The world gives you permission to miss your newborn...for awhile at least. Not nearly as long as you really need, but still, most certainly a lot longer than they give you permission to miss a child you lose through miscarriage. 

Perhaps it's because someone, somewhere, somehow has decided my grief should be measured by how long my children were with me, but in my reality it's measured so much more by how long I am without them. 

I miss Lily with every ounce of my being. And I miss Clare too. Just as much. 

Some days it seems like more. Some days the pain of missing Clare is magnified so much more because of all the "things" I don't have. I don't have pictures or outfits or a memory of holding her that I can cling to. I don't have a huge trunk full of memories of Clare like I do with Lily. I have one tiny box with a handful of cards and one ultrasound picture.

Some will say this is a blessing. Because you can't miss what you never had, right? 

Then why do I miss this baby so much? Why did it feel just like losing Lily all over again? Why has my grief been multiplying over and over these past five months?

We've emptied our house of everything baby. I've given away clothes and toys, only holding on to a few sentimental items. The infant car seat has been stashed away and the crib has been lent to a friend. Because keeping baby items for 3 1/2 years seemed practical, but keeping baby items for 4 plus years seems foolish. Wishful thinking that I just don't have in me right now.

It's hard to truly believe that this is our reality. So many mornings I wake up hoping it's all been a dream and I wait for a second to see if I will hear the two sets of feet that should be running into our room and another set that should be kicking my ribs. But instead, I look down, and my belly is flat (or rather flabby), and just one set of feet run to greet me in the morning. 

It's only September and I am already dreading this holiday season. Desperately wishing for the holidays that should be. The Thanksgiving where I should be nesting and hoping for labor to set in. The Christmas that should be with two excited toddlers giggling in excitement for Christmas morning and a newborn who should be snuggled up in Christmas jammies. The Christmas card that should be sent out late because it would be a birth announcement too. The New Year's Eve with three kids in bed by 8:00 and a toast to my sweet husband for all this goodness that should be.

Everything that should be. And yet, every single day I still manage to find hope in what is, in this reality of life amidst loss where we find ourselves. Every single day, I beg and plead with God for all that seems impossible. I ask for faith that surpasses my understanding and can hope against hope. And I pray over and over and over, "Teach me Lord to pray with my whole heart, 'Jesus, I trust in You.'"

You are my sunshine

"You are my sunshine, my only sunshine.

You make me happy when skies are grey.

You'll never know dear how much I love you

Please don't take my sunshine away."

I started singing this song to Ted before he was even born and I have sang it to him almost every night since. So much that I could never shut his door anymore without him asking "Mama, Sunshine Song?" just. one. more. time.

I don't know who wrote this song or if there is meaning behind these sweet lyrics. I always thought it was a man serenading the love of his life, but after losing Lily I often wonder if the author of this song has a story more like mine.

Many people know in the loss community that a child after a loss is often referred to as their "rainbow baby". A rainbow is an effect of a storm. In fact, a rainbow cannot exist without a storm. When the storm is still on the horizon, sometimes you just may see a brilliant rainbow. 

"'Rainbow Babies' is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."

Understandable how it is a metaphor for loss. You never seem to feel like you are out of this storm of loss, but you learn there can be beauty a midst it. We are still waiting for our rainbow...some ray of light and beauty a midst this storm of missing Lily oh so very much. A rainbow can never replace her. She is irreplaceable, but it can provide some comfort during this endless storm of loss.

But what many people may not know is that any child you have before a loss is often referred to as your "sunshine" child/ren. They are the light before the storm. They are the warmth your heart needs when you feel cold, empty, and broken. They are that streak of God's light you see emerging through the dark storm clouds that seem to swallow you whole. Sometimes they are the only reason you ever get out of bed that day. They remind you there is hope when the despair leaves you gasping for breath. And they bring so much light to your heartbroken soul.

Ted is my sunshine...my only sunshine.

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 grief...it'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 away...it 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.

Day of Despair

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 were told their child was "incompatible with life". The day someone referred to their child as an "option" and not a person. The day they received the diagnosis that shattered their world as they once knew it.

Our D-Day was one year 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 one year 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. 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.

I 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 one year 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, one year ago. 

True despair. 

We drove home in silence. The only sounds were our tears and trying to catch our breathe. 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 friend 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. 

One year 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, 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 grace. The grace of God wins every time when you choose life. After the hardest year 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 my daughter. 

While it has been the hardest year of my life, 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 this past year 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 a year 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.

Five months

I pretty much summed up where I am at in my last post, so I won't delve into that too much. Life without Lily is hard, harder than I ever imagined. Lent was hard. It seems pointless and stupid to me...making a "sacrifice" of giving up chocolate or Facebook or something else that is so insignificant now? Dumb.

My parents did come to visit in March and it was wonderful to have them here. Ted and I have seen my family every month since October and it's been such a needed blessing. I have really needed to have that time with them. I think they need it too. I think they need to see that even though we are hurting, we are ok. We went to a few baseball games and took Ted to the zoo and really, just spent time together. Lily has brought my whole family closer and that is something I am truly grateful for.

Easter finally arrived after a really tough Holy Week. I cried. Every. Single. Day. I cried because I missed her. I cried because I feel so guilty that I can't pray. I cried because there are no more pictures. I cried because Ted says, "baby" and it's not his sister. I cried because she never opened her eyes or made a sound. I cried because Ted looks at her picture in our room and says, "bye bye baby". I cried because she was strong and dancing in my belly until she wasn't. I cried because I see toddlers with their baby siblings. I cried because Ted wanted to wear his "Brother of the Year" shirt two days in a row. I cried simply because I miss her. Every. Single. Day.

But friends, there is hope. Hope in the Resurrection. Hope in knowing that my beautiful daughter is dancing in the Resurrection. On Easter, I woke up a little bit refreshed, a little lighter...because He lives.

"Because He lives

I can face tomorrow

Because He lives 

Every fear is gone

I know He holds my life 

my future in His hands"

Because He lives...my daughter is dancing in Heaven. Amen.

Almost Perfect

It's the most wonderful time of the year! I love the Advent/Christmas season...usually. I love the way the Church looks with lights and decorations. I usually love picking out the perfect gifts for everyone I love. I usually love annual gatherings, galas and parties.

This year was obviously hard. I knew it would be. Christmas Eve was exactly six weeks since Lily was born sleeping. I knew it would be difficult, but I just didn't realize how difficult it would be.

I tried to care about Christmas presents, but honestly, I couldn't do it. I went to my obligatory parties, but wanted to leave within minutes. I decorated the house, but it didn't fill me with my usual Christmas cheer. 

We had a quiet Christmas Eve and I loved that. We went to Mass at our Church and I felt so much peace despite how much my heart was hurting. In the quiet moments of the Mass I can't help but think what it would be like to be wrestling Ted AND have a newborn. I hate that I don't know the answer to that. And I miss her.

The theme of Advent at our parish was "10,000 Reasons for Gratitude". Every family was supposed write three things they were grateful for everyday during Advent. By Christmas, there would be over 10,000 reasons throughout the parish.

We didn't do the best at keeping up with our list, but just seeing it on the fridge reminded me everyday how grateful I am. I am sad, angry and missing my daughter every single moment of every single day, but I am grateful that I get the chance to miss her. 

They played Matt Maher's version of "Hark the Herald Angels Sing" and there's one part that made my heart sing thinking of Lily:

"And the angels they sing,

And the Heavens they ring,

Won't you raise up your voice

To the Son of the King"

I've never heard this Christmas song quite like this before...I know with all my heart Lily was rejoicing in the Heavens. I know she is praying for me. How do I know? Because there is no other way to survive this type of loss. It's impossible to breathe in and out without the faith of knowing she is helping me through this.

We left for Iowa on Christmas Day. (FYI - it's a great day to travel with a toddler.) My family does Christmas BIG...so big we have to rent a hall to hold everyone. I love it. I love that it grows every year with new fiances and new babies. I love how loud and joyful my family is. I normally hate to miss it, but this year we did. I didn't want to be overwhelmed all at once and mostly, I just didn't want to be there if Lily wasn't with me. I guess I wanted both of us to miss her first Christmas.

I was so happy to be home though and so thankful for that big and loud and wonderful family. We had lots of gatherings...I would say small gatherings, but that's never possible with my family. ;)

The most special part of our trip was getting to celebrate Lily with everyone. I know every single one of them wishes they could have been with us when Lily was born and after. But it just wasn't possible. One of my cousins asked me if it would be okay to have a Mass said for Lily at the Church where I grew up. It was so special! There were nearly 50 family and friends who showed up for Lily's Mass. It meant so much to celebrate Lily with all of our family and friends in Iowa. 

We spent the rest of the week soaking up time with family and squeezed in a few visits with friends. Ted got to play with all of his little cousins and they were so excited to see "Ted from Arizona".

All in all, it was almost perfect...as close as perfect gets when you are missing your daughter. I don't think we will ever have a perfect Christmas again, but I'll take a few more "almost perfect" ones...