Eleven months

Almost a year ago I wrote this, a letter to Ted about his baby sister Lily. It was one of the hardest letters I ever had to write. I told him how sorry I was that we would not get to keep his sister. I told him if love were enough we would. One year later, 11 months without Lily, and the ache in my heart, more than for myself, is for Ted missing his little sister. 

It's just not supposed to be this way.

My sweet Ted,

In two weeks you will be 2 1/2 and in one month Lily will be one. One year old in Heaven. When I dreamed of having children, I dreamed of you being best friends with your siblings. All close in age, one right behind the other in school. I dreamed of you sharing a room and keeping each other up at night. I dreamed of you sneaking out of your room to look for presents on Christmas Eve. I dreamed of you smothering her with sweet kisses. I dreamed of her eagerly trying to keep up with you. I dreamed of you protecting her, looking out for her, always with her best interest in mind. I dreamed of you sharing your hopes, your wishes, and your dreams with your sister. 

I never dreamed of this.

I never dreamed of a world where I was so torn between Heaven and Earth. I never dreamed of world where I could delight in the sweet little boy you are becoming, and all the while have tears streaming down my face yearning for your sister. I never dreamed my most cherish picture of you and Lily would be of you holding a photograph of her. I never dreamed you would never get to hold her. I never dreamed you would have to rely on our memories to know your sister. I never dreamed of celebrating your sister's first birthday in a cemetery. 

Almost 18 months ago, all of these dreams shattered right before my eyes. In the blink of an eye, the world I never dreamed of became my reality. Ted, I am so sorry. I am so sorry that you do not have your sister here with you. I am so sorry that you never got to hold her. I am so sorry that I could not save her. And if love were enough, I could have. But I want you to know more than anything that if I could do it all over again I would in a heartbeat, and I wouldn't change a thing.

Because I also never dreamed Heaven could kiss Earth. I never dreamed I could feel such tremendous grace as I held a perfect soul in my arms. I never dreamed that my love for my children could be this intense. I never dreamed I could love your dad so much through this grief. I never dreamed that I would truly see Jesus in the face of my daughter and my son. I never dreamed that you would have your very own personal saint to pray for you in Heaven. I never dreamed that my heart could simultaneously beam with pride and be swallowed with heartache at the sound of you saying her name. I never dreamed I would have such a clear vision of Lily dancing in the Resurrection. 

I never knew that grieving so intensely is a sign of loving so immensely.

One year later and I have another song for you Ted. I listen to this song and I think of the story you will get to tell because Lily is your sister. You will get to tell a story where grace wins every time you choose life. You will get to tell your own story, that even though you may not remember it, a story of the day Heaven reached down and touched the earth and your sister changed us all. I pray every day that this moment will resonate in your soul and that it will carry you through every tough time you may face. 

I love you Ted and I am so sorry you do not get to grow up with your sister, at least not the way I ever dreamed.

Love, Mom

If I told you my story

You would hear Hope that wouldn't let go

And if I told you my story

You would hear Love that never gave up

And if I told you my story

You would hear LIfe, but it wasn't mine

If I should speak then let it be

Of the grace that is greater than all my sin

Of when justice was served and where mercy wins

Of the kindness of Jesus that draws me in

Oh to tell you my story is to tell of Him

This is my story, this is my song
"My Song"

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 months...it 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 months...it'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 anticipated...it 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 prayers...to 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.

Lily's Birth Story: Part II

The first part of Lily's birth story can be found here.

I remember when we first told our pastor about Lily's diagnosis, I told him that I only wanted one thing when Lily was born: I said I wanted her to be born naturally, and right around her due date, and with everyone I wanted there, and for her to be born alive. Yes, I know...one thing, right? He quickly stopped me and told me life doesn't work that way. He told me I needed to rearrange my prayer requests or I was going to be even more disappointed. I sunk into the chair with humility because I knew he was right.

Jason and I talked about it and from that day on we prayed every single day for peace. We asked God to give us peace with any decisions we had to make. We asked God that we would be at peace with when she was born, how she was born and who would be there. We prayed this prayer every single day up until the hours I began pushing. 

With Ted's birth experience, I can learn from it and decide with another child what I would or would not do the next time. Lily's experience is different because honestly, I pray every single day I do not get a "do-over". There are a million "what ifs" and "what could have beens" that creep in and I have to stop my mind from going there. I can't do this over. I can't say I wish it would have gone differently because her birth story is all I have.

As we got closer and closer to meeting Lily, my list of wishes started to grow again. But when it really got down to it, I only had one wish, one prayer: I needed my parents to be there. 

My mom arrived the Friday before my due date and my dad the day after my due date. I think he wanted to "be there for me", but not actually there when she was born. Lily clearly had other plans. When I say I needed my parents there, I really thought I just needed my mom. But in the moments after she was born; as I think back to everyone coming in to see her,my dad walked in the room to meet his first granddaughter, and I realized I needed my dad to be there more than anyone else.

I needed my dad to see her in person. I needed him to hold her, to memorize her. I needed him to see firsthand that she was worth it. My dad was so worried about me during my whole pregnancy, but holding Lily, by seeing how much I loved her and needed her, I think he realized her value and saw her undeniable worth. 

There was so much love that filled that room. It was full of sorrow and sadness, but more than anything there was so much love. 

Our priest ended up being out of town up until the day before Lily was born. Near the end of my pregnancy, my second wish was for our pastor to be there to meet and baptize Lily. (I have known him since I moved here. He gave me my first job, which led me to our awesome community. He married us, baptized Ted, and gave Jason his Sacraments when he joined the Church.) Again, Lily knew better than us and thankfully she was two weeks late so she could meet him. He was there, jet lagged from a trip to Hong Kong, to pray with us and give her a blessing. Since she was born sleeping, she wasn't baptized, but he blessed her, read a scripture, and told us how much he loved us.

My parents, sister, brother-in-law and kids, and a few friends were all there to hold her, to see her, to fall in love with her. They saw first hand that she wasn't a definition, she wasn't anencephaly...she was beautiful and perfectly made. 

My nephew couldn't get enough of her. He asked to hold her several times. As he held her, he just stared at her and cried. She stole his heart instantly. 

After everyone held her, kissed her and said goodbye, they left. I don't know how long they stayed...it doesn't really matter because there could never be "enough time" for them.

Then it was just Jason and me. We were beyond exhausted, but we just wanted to soak her up as much as we could. At first we thought the funeral home would come that night, but thankfully they didn't come until the next day. 

This was my favorite time...just Jason and I memorizing her every sweet detail. Her thighs were so chunky she already had rolls! She had the most amazing cheeks, maybe even squishier than her brother's! Her hands and feet were perfect. Her nose, like a button. We took turns holding her, kissing her, and telling her how much we love her. 

We took some pictures on my phone. I guess I can say now if I have one regret it's that we didn't take enough of these pictures. They are my absolute favorite. Just us and our perfect daughter. For these brief moments, we almost felt like normal "proud parents", not parents that were saying their hellos and goodbyes at the same time. But, I also know that even if I had taken a thousand more pictures, I would still say the same thing...there could never be enough pictures.

Jason and I were exhausted. Emotionally, physically, spiritually...all of it. I felt so guilty, but I needed some sleep. We laid her in the bassinet and got some rest. We woke up the next morning and spent the morning just loving her. Again, we memorized every little detail about her. I said earlier I wished I had taken more pictures, but honestly, none of the pictures even do her any justice. She was so beautiful. Our nurse, whom I will love forever, came in and "oohed" and "ahed" over Lily with us. She told me she had good, healthy, Irish thighs. She even cried with us. 

Then the director of the funeral home came to pick her up. My heart was racing...the moment I had been dreading for five and half months was actually right in front of me, staring me in the face. The moment that still takes my breath away and makes me well up with tears. The moment I had to hand my daughter over, knowing I would never hold her again in this life. I can assure you we prepared for a lot, but absolutely nothing prepares you for this moment. Jason and I prayed with her, we asked her to pray for us and for Ted, and we told her over and over again how much we love her and how sorry we were we couldn't save her. And then, my greatest fear became my reality...she left my arms in this life forever.

I am a different person now. I am now the mother of a saint. And as long as I live, my heart will be teetering back and forth, somewhere between Heaven and Earth. 

Happy birthday St. Leo

It truly is amazing to me when I look back and see how God was preparing me for Lily. Different moms who have all experienced the loss of a child have been interwoven in my life since I moved here. In the past five years I have attended the funeral of a 19 year old, a five year old, a one year old, and a young mother. 

I have been in awe of each of these mothers who have experienced these losses. I admired their strength, their courage, mostly their faith. From my eyes, they completely abandoned their selves to God. They put their families right in God's hands. They didn't understand, but they trusted. They believed. 

But there was one mom in particular that really tugged at my heart. I was and still am in complete awe of her. Her sweet son Leo prepared me for Lily before I even knew I needed to prepare. I had never met his mom, but to me, she was the kind of mother I aspired to be. 

I had just learned that I was pregnant again...excited and scared, nervous and full of joy to be doing it all over again. My dear friend shared in our Women's group about another mom from our church that knew already her child would not survive. Her child had anencephaly and his brain and skull had not formed properly. He was not expected to live for long, if he survived birth at all. I honestly think I gasped in disbelief that anyone would have to go through this. 

I have been Pro-Life my whole life, but that belief had never been tested. I observed from afar what it truly meant to respect the dignity of all life. 

My dear friend shared on her blog about the shower she hosted for Leo's mom. Again, I was in awe of this woman. How was she doing this? How would she get through pregnancy and labor knowing she did not get to keep her son? I was mesmerized by her strength and courage, all the time oblivious to what I was about to face.

This is the comment I posted on my friend's blog post, just six weeks before Lily's diagnosis:

"Such a beautiful testament of her courage and faith and of your servant hood. Thank you for sharing this. I'm in complete awe of a mother willing to love her child so selflessly. I know it's all of our goals, but we fall short so often. She is truly living up to self-sacrificing love. Continuing to pray for mom and baby."

Leo was born sleeping just a few weeks later. I didn't know him, but he forever left an imprint on my heart. Because of Leo, my doctor didn't have to be a "doctor" and explain what was happening, she could just hold my hand and let me cry. 

Shortly after Lily's diagnosis, I met Leo's mom for the first time. If you know me, you know I'm not much of a hugger, but the moment I met Leo's mom we hugged and both cried. She knew my aching heart better than anyone. She told me that the morning before she learned of Lily, she had a dream about Leo. It's been almost a year and she still says it was her only dream of him. She said Leo woke her up in her dream and told her she needs to pray for Lily. Just one month after she lost her sweet Leo, she offered to walk with us on this journey. That alone gave me hope, and I was able to start picking myself up from the despair. I am still in awe of this woman and I am eternally grateful for her "yes" to Leo and her "yes" to me. 

Today is Leo's feast day. I think of Leo and Lily every day, but especially today. I can see  them perfectly...dancing together, forever in the Resurrection. Happy feast day, sweet Leo, give your momma an extra kiss and whisper from Heaven today.

Heaven Meets Earth: Lily's Birth Story

I've tried several times to sit down and write this and I have a hard time of where to begin. So here it goes again...one. more. try.

When I think back to this day, I am of course flooded with emotions. 

After the initial shock of Lily's diagnosis and the anguish of it all set in, I remember two new fears emerging. The first was wondering how I would ever endure the next five months. The second was wondering how I would ever survive labor knowing I wouldn't get to keep my reward.

I now know the answer...it's all grace. A tremendous, overwhelming flood of grace that poured over me especially the last few days and weeks leading up to her birth. People often comment on how strong I am, but honestly, strength had nothing to do with it. It was all grace.

There is nothing to truly prepare you to say your hellos and goodbyes in the same day. We had time to process it all in the months leading up to her birth, but honestly, I don't think it matters. It's hard, it's painful, it makes you ache in ways you never knew possible. But more than all of that, you learn this...it is worth the difficulty,  worth all the pain, and all the sorrow. She is worth it.

What I want people to know more than anything is this...I've never felt the love and presence of God more than the day Lily was born.

The medical side of the story is this: I went in to be induced on November 11th, two weeks (and a day) passed our due date. They dilated me and gave me pitocin. The dilating worked, the pitocin didn't. They turned it off and gave me a break. A few hours later, my water broke on its  own and labor started on its own (yay!). I got an epidural because I needed it and it was still going to be awhile.

Around 6:00am on November 12th, we decided to start pushing. My sister and parents came in to see us and then went to the waiting room.

Jason and I asked for some time by ourselves. My dear friend Chris had given us a rosary his late wife had held and prayed often as she was dying of cancer. I know her immense love for children and I knew she was in Heaven praying for Lily. Jason and I prayed a rosary together. We asked God to let us see Jesus in Lily. We asked God to give us the grace to do this, to give us peace for whatever happened and that we would experience tremendous joy when we met Lily.

And we cried together. 

Our midwife and nurse came back in and we started pushing...for six hours.

I have often wondered how women get through hours and hours (and hours and hours) of pushing. And now I know...it honestly felt like minutes, not hours. If it was what Lily needed, I would have pushed for six more. I would have done anything for her. 

Lily had been head down and face down my entire pregnancy. As she was coming out they told me she was presenting face first and she was stuck. In my heart I knew she had already passed away. 

My midwife called another doctor for assistance. She was my advocate. She knew how much I did not want a csection and she knew how much I wanted to see Lily.

We tried pushing again and the doctor asked about using forceps. It pains me so much when I think back to this moment. I was terrified. I told Jason I didn't think she was alive anymore. We agreed to the forceps. As they were trying to get her out, I looked up and there was the Crucifix. He was right there with me with every push and every tear. I begged Jesus to let me see Lily. 

It still wasn't working. The doctor said we may need to do a csection. It was then that I completely lost it.

And again, I wept.

I laid back and just sobbed. Again, I told Jason I didn't think I could feel her anymore. 

And in that moment, I yelled. I yelled at God. I'm not ashamed to say that. When you have a relationship with your Creator you can yell at Him in those moments of your greatest despair. And this was that moment. I yelled at God and said I didn't want a csection. I begged him to spare me of more pain. I didn't want to go through all this, just to be cut open, especially when I knew in my heart she wasn't alive anymore.

Once again, my midwife was amazing. She fought for me. She went to find another doctor that she knew would be able to help. He had experience with this kind of birth. She never left my side.

Her shoulder was stuck on my pelvic bone, but he knew what to do. They upped my epidural and he pulled her out within a few minutes.

They put her hat on her and placed her on my chest.

I thought I had cried my hardest earlier, but I was wrong. This was the moment that I truly wept.

I sobbed and sobbed and tried to take her all in. I told her over and over again I was sorry. I  was sorry I couldn't save her, sorry I had put her through all that. I told her again and again how much I love her and I begged her forgiveness.

And then just like that, Heaven touched Earth. Jason and I were flooded with an abundance of grace. We just stared at her and examined what a beautiful daughter we made. 

She was perfect.

I didn't see anencephaly. I saw her squishy cheeks that melt my heart every time I close my eyes. I saw her hand wrapped perfectly around my finger. I saw her sweet chubby thighs that had two extra weeks to fatten up. I saw her long beautiful lashes. I saw her perfect feet. I saw my daughter, my own flesh and blood that I created, but couldn't save. 

I know that some of you reading this have an idea what that feels like. I can only imagine it's what Mary felt like when she saw her Son on the Cross. Helpless, full of more sorrow than you ever thought anyone could bear and here I was, experiencing it all for myself. But at the exact same moment you are flooded with so much joy because your daughter is finally in your arms.

I have never experienced the mystery of the Cross like this before. It was the single most amazing experience of my entire life. 

Perfectly made

 Those rolls...be still my heart.

My very favorite picture...I stare at this every day.

There is so much more to share from this day, but that's all I have...for now. To be continued...

Link to part II.

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...