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.

Friday, August 14, 2015

Nine Months

"You can get so confused that you’ll start in to race
down long wiggled roads at a break-necking pace,
and grind on for miles across weirdish wild space, 
headed, I fear, toward a most useless place.
The Waiting Place…for people just waiting..." 
-Dr. Seuss

That's where we are right now. Just waiting. For what exactly? I'm not really sure. Mondays are really hard days for Jason and me. Often he comes home from work and just says he feels "Blah". I usually just accept it, but I recently asked him why he feels that way and he said it's because he feels like we are just stuck...waiting. Waiting for what? I'm not exactly sure.

Waiting to see if God will bless our family with another little soul? And then waiting to find out if we will get to keep that sweet soul?

Our OB appointments with Lily were often on Mondays, especially near the end of my pregnancy. The anticipation, the fear, the sorrow of each appointment will forever be etched in my brain. Most people awaken on Mondays ready for a fresh start, but for me, very often it's a painful reminder of this waiting place that I have been in for so long now.

Lily would be nine months old and now as we continue to wait, the world seems to be passing us by. All the little sweeties that Lily should be here playing with are starting to turn one. They are walking, scooting, talking, smiling, and laughing. And we are waiting, in this most useless place, missing out daughter more than we ever imagined.

But in these exact same moments, there is so much joy and blessing in our lives. We are surrounded by family and friends who constantly reach out if only to say "we are praying for you." Those words mean more to me than anything. It helps me feel connected when often times I feel so disconnected from everyone.

And even in this waiting place, we have the constant entertainment of sweet, and quite stubborn, two year old. Even in our waiting place, he is moving forward, refusing to stay a baby and growing up. This week we have been fighting naps and bedtime and trying to transition into a toddler bed. It's been exhausting, but so amazing to see him grow and change before our eyes. 

One night he was desperately trying to stall for bedtime and he started singing, out of nowhere he started singing to Lily. My heart almost burst with joy as my eyes were burning with tears.

My mom was also here for two weeks and it was so wonderful! She came for my sister's baby shower and to shower us - mostly Ted ;-) with so much love. She always takes such good care of us and Ted adores her. Every time he sees an airplane he says, "Airplane! Gamma?" I am so grateful for all the time I have had with my mom over this past year. I always feel safer when I am with her. There is just a peace that comes when my mom is here or we are in Iowa. No matter how old I get, I will never stop needing my mom. 

Sunday, August 9, 2015

Happy Feast Day Bradley

Happy feast day sweet Bradley. 

You left an imprint on my heart long before you ever left this worldYou taught me to pray unceasingly. You taught me to embrace every moment with my son. You taught me to live for the present. You taught me what courage looks like.

I still think about you every. single. day. I know you and Ted would have the best time playing trains and t-ball. My heart hurts so much that you and Ted do not get to make those memories together. Daily I think "how it should be". I think about you and Ted playing together and your little sisters chasing after you two, mesmerized by their big brothers. This is how it should be, but sadly, it's not how it is.

Instead Ted is missing his best friend and his sister. Instead, we spend time with your baby sister, who is a ball of joy and laughter and all I can think about is how Lily should be right next to her.  Instead, we are all painfully aware there are two sweet little souls missing from our lives. I look at her and I see your big blue eyes and remember your sweet little smirk. In the same way I look at Ted's squishy cheeks and I am reminded of Lily's kissable cheeks.

In my heart, I know that you and Lily are healed in Heaven. I know you are rejoicing, dancing in the Heavens and I know that you are together and smiling down on your sister and Ted. For that I am grateful, even though my heart aches for you and for Lily because I still want you here with us on Earth. 

We miss you so much and we think about you every day, especially on your feast day. Pray for us sweet Bradley...shower your mommy, daddy and sister with kisses from Heaven and please give Lily kisses from her mama. 

Tuesday, July 14, 2015

Eight Months

I haven't written in awhile. Sometimes I feel I've said all there is to say and that now I'm just on repeat.

I miss her like crazy.

My heart feels so shattered.

There are moments I can hardly breathe.

Days where all I do is cry. 

Eight months have passed since Lily was born sleeping. Over a year has passed since our world changed forever and I still feel these feelings every single day.

Sunday was eight months and it was a really hard day. I honestly think I cried for the majority of it. So much so that on Monday my eyes were still swollen. I thought that part of my grief would be passed by now. I didn't think I would have another day like the first ones that followed her diagnosis, but I guess I was wrong.

Grief really does come in waves...some waves are gentle with memories that almost lull you to sleep. Others waves ferociously crash into you without without any warning. These waves of grief hit you when you least expect it and almost swallow you whole and leave you gasping for breathe. 

That was my Sunday.

Jason and I decided we would go to the cemetery after Mass. We had not been since Lily's funeral. Her marker was just recently finished and I didn't have the heart to go any sooner (mostly in fear I wouldn't know where she was). 

So we started off Mass emotional, knowing we were going to visit Lily's grave afterwards. 

Then there was a baptism. 

I try so hard to be brave and strong, but baptisms are so hard for me. Baptisms are moments full of so much hope and promise for your child's future and we didn't get that. Every time I see a child baptized at Mass, I'm reminded of just one more moment I didn't get with my daughter.

Mix that with the anticipation of seeing her grave marker and knowing it's been eight months of missing my daughter...I'll just let you imagine the wreck I was at Mass. 

But at the same time, their is so much beauty in this grief. To me, there is so much beauty in knowing that I can lose it at Mass. Some may sit, stare, and wonder what the hell is wrong with me. But many, many families at our church know us and they know Lily's story. I'm not afraid to cry in front of any of them. In fact, I think it's important so they can better understand this journey I am on because it is far from over. 

In fact, it's just beginning.

There is nothing in the world that prepares you to see your child's name carved in stone. It's another ferocious wave of grief that knocks you down when you least expect it. Nothing to prepare you for the first time your 2 year old says, "Love you Lily" and your heart swells with pride and shatters simultaneously. And absolutely nothing truly prepares you for how much your heart still aches eight months later. 

Just the beginning of a lifetime spent missing you...each and every day Lily, we love you and miss you like crazy sweet girl.

"Grief never ends...but it changes. It's a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith...It is the price of love." ~ Author Unknown

Tuesday, June 9, 2015

Happy Feast Day Ethan

Ethan was larger than life. He almost had to be because he was a skinny kid. He fought cancer as a toddler and won. Cancer came back with avengance when he was graduating from high school. He had everything ahead of him. He was full of life, full of the Holy Spirit and not even the big "C" could knock it out of him.

As a community, we prayed with him. We begged God for healing. After a break from chemo, they learned his cancer was continuing to spread. It broke everyone's hearts. But for the rest of my life, I will never forget how Ethan faced this news. In his eyes one of two things would happen. One: God would perform a miracle and he would be healed on earth. Two: Ethan would be healed in Heaven. He told the whole world he was fine with both. He said either way he wins. I will never forget that. His faith at 18 is still to be admired. 

He came up with a bucket list and his friends and family helped him accomplish his wishes. He planned a "Going Away" party and asked everyone to celebrate with him. 

He planned his funeral, he turned 19, and then he went Heaven. I will never forget his funeral. Before this past year, I had never cried so much in my life. The moment that I have engraved in my memory forever was seeing his parents with their arms lifted in praise after they received the Eucharist. I was in complete awe of their faith as they were facing any parent's greatest sorrow. But they were rejoicing. Their hearts were aching for their son, but I saw their hearts rejoicing. 

It's a moment I go back to often, especially during this past year. As I look back now, it was a moment that was preparing me for Lily. I wanted to one day be a parent with that kind of faith. 

The song Ethan picked for his funeral, the one that his parents lifted their hands in praise to was "I Will Rise" by Chris Tomlin. It has reminded me of Ethan for the past five years. Several times on my way to my OB appointments with Lily it would come on the radio. I would always think of him and ask him to pray for Lily and pray for us. 

We also played this song at Lily's funeral. While my hands were not lifted in prayer for all to see, my heart was rejoicing and thanking God for the gift of my daughter

This morning I went for a bike ride as the sun was coming up. The sky was grey and it was a misty rain which never happens here, especially in June. Below the grey clouds, the sun was starting to pink through. This song, again, came on my iPod. I couldn't help but think this was a gift from above and I could envision Ethan and Lily dancing and celebrating on his feast and sprinkling a little rain on this desert.

Happy feast day Ethan...I hope you shower your family with some extra love from Heaven today.

And I hear the voice of many angels sing, 
"Worthy is the Lamb" 
And I hear the cry of every longing heart, 
"Worthy is the Lamb" 

Saturday, May 30, 2015

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.