Celebrating Lily

Today is a hard day to remember, even more so then the day Lily was born. One year ago, I got my last glimpse of Lily in this life. We prepared for a lot, but I assure you, absolutely nothing can prepare you for when the casket closes and you know will never dress your beautiful girl in any more outfits. You will never get to braid her hair or teach her to play softball. You will never see her become a woman, a bride, a mother. Every dream you had for child closes with the casket. 

I'm trying so hard to keep hold of the peace I felt on her birthday. So I share with you her beautiful birthday. It was such a special day and through it all, I felt so much peace from my baby girl.

Loving Lily is the greatest accomplishment of my life. I'm never one to brag on myself, but giving Lily life is the only thing I've ever done that I know with 100% of my heart I did it right. But now here I am one year later and I can't stop the selfish thoughts. I want her here. I want to protest the over the top, extravagant first birthdays. I want to dress her in something simple and sweet. I want to hold her and kiss her and reminisce about all the beautiful moments and milestones she should have made it through this past year. I miss her, and not because it's her birthday. I miss her because it's every. single. day. Every single day for the past year, that I have had to figure out how to live this life without her. I haven't figured it out yet and I honestly don't think I ever will. 

I thank God every day for the gift she is to my life. Deep grief is a sign of deep love. I will spend the rest of my days missing her and longing to hold her, but this one day of the year, her first birthday, I set aside the ache in my heart and I celebrated my perfect and precious girl. 

Because she is the greatest gift of my life. 

The night before her birthday we went to decorate her grave. Ted picked out balloons for her and a stuffed animal. He kept saying, "Happy Birthday Lily!" Some of the decorations my friends had left the week before were still there and it made me smile.

I woke up the morning of her birthday feeling so much peace and I was so grateful. I haven't felt peace like that since she was in my arms one year ago. I know it was Lily. I know she wanted me to enjoy her birthday. 

We went to Mass that was offered for Lily. My sister, brother-in-law, and friends came to celebrate with us. It was so wonderful to start our day surrounded by people who were praying for us. 

Then it was Jason, Ted, and me off on a family day. We celebrated with donuts and then spent a wonderful morning at the zoo. We did all the fun stuff. We fed the giraffes and went for a camel ride. We went on the train and pet the sting rays. Ted really loves seeing all the animals. Feeding the giraffes was definitely a highlight of our day!

We came home to flowers, treats and gifts. My dear friend Nellie took pictures at Lily's funeral. She gave me a book full of pictures I had not seen. I didn't cry all day until I saw this book. Words cannot even describe what it was like to have new pictures of Lily. It is truly a priceless gift. My cousin Emily always makes a personalized ABC book for 1st birthdays and she made one for Lily too! We are so grateful for the outpouring of love, prayers, and thoughtful gifts. It helped make her day so special.

Jason and I went out to dinner just the two of us. We shared our memories of Lily's birth. We toasted our daughter and our family. My love for him is more than I ever imagined. He is the most sensitive and loving husband and father. It breaks my heart he has to miss his daughter at all.

Jason has also been working on a project for Lily (me) and it is finally complete! He's been working for months to build this beautiful trunk! I've been wanting something to house all of Lily's memories. I kept showing Jason trunks I wanted to buy and then he told me he wanted to make it. More love went into making this piece of furniture than anything money could ever buy. I am so grateful for his commitment to our family and his immense love for his daughter. Isn't it just beautiful?!

We ended Lily's birthday with pumpkin ice cream with Ted. Again, the day was filled with so much peace and so much love for our sweet girl. We miss you so much Lily girl and we would have given anything to celebrate this day with you. Thank you for showering us with your love and peace. We felt it baby girl...all day long. 

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.

Saint Lily Frances

Heaven gained a very precious saint yesterday.

Our sweet and perfect Lily Frances was born sleeping yesterday. She weighed 8 lbs 2 oz and inherited her brother's squishy cheeks.

Love and joy...that's all I felt when I saw her. Tremendous love and joy. We didn't see anencephaly, we saw our beautiful daughter and she stole our hearts forever. 

I will share more as I can, but for right now I just want the world to know, she is perfection.

I will never be the same, she has changed me forever and for that I am beyond grateful. 

My sweet and perfect Lily Frances, please pray for your mommy, daddy and big brother Ted. 

We love you and miss you so much.

Day 6

It's the sixth day of our Novena for Lily and while there are many, many thoughts and emotions swirling through my mind and heart right now, there is one feeling that has overwhelmed me...

Peace.

Never, in a million years, or even 20 weeks ago would I believe you if you told me in the days leading up to my daughter's birth and most likely, her passing, I would feel such a strong sense of peace.

I know with all of my heart it is from all of your heartfelt prayers. 

Thank you. Thank you. Thank you. 

There are moments it still doesn't feel real or even possible that we could say our hellos and goodbyes in the same breath. 

Yesterday, Lily woke me up at 4:00am dancing away like she always does. But this time, she didn't stop and I couldn't go back to sleep. She danced, and kicked and flipped and my stomach was bouncing around like a bag of popcorn.

It's unimaginable that she won't be that strong when she's born. 

So our prayers continue and we continue to ask for peace as we prepare to meet our precious Lily and for all the days after. 

We pray that we can be fully present in the joy of her birth because she truly is a gift.

She is our gift.

And my sweet Ted...he seems to know just what I need right now too. ;-)

39 weeks with my dancing girl

Perfect peace

35 weeks...

There are days where this all feels like a cruel joke. Lily flips and turns and literally shakes my whole being with how strong she is. How is it possible that in six weeks or less that will all go away? 

This morning Ted was sitting on my lap drinking his milk and Lily was going crazy jumping around! She was actually lifting Ted up! How can she be so strong inside of me and most likely not survive more than a few hours outside of me? 

We've known of Lily's diagnosis for 16 weeks now and honestly, it still doesn't seem real. 

Around 32-33 weeks, I finally started showing. I was so heartbroken by my small belly, desperately wishing she would grow as she should, but now people comment and ask questions and I wish I could be more invisible again.

Ted and I were at the grocery store today and the lady in the checkout asked me how much longer..."Six weeks," I say.

"Wow! You are tiny!" Immediately tears start to sting my eyes. I'm not tiny, my baby is. 

Or it's someone asking about the age difference between Ted and Lily..."18 months," I say.

"Wow! You are going to have your hands full!" Tears sting my eyes again. But I'm not going to have my hands full. 

I would give anything to have my hands full.

Nesting when you have a fatal diagnosis looks a lot different. 

With Ted, I was busy cleaning out our house, decorating his room, organizing all the bins of toys, clothes, diapers, installing a car seat, etc. I exercised every day, spent time with friends, full of the "pregnancy glow" I had longed for forever. 

With Lily, I am just praying I've thought of every single way to preserve every single moment we have with her. 

We almost have all of our "To-Dos" completed. It brings a mixture of peace, sorrow and still disbelief.

Our To-Do's:
1. Contact Now I Lay Me Down to Sleep
2. Hand/Foot molds and ornament provided by String of Pearls
3. A few hand-made outfits from two of the sweetest Etsy shops (Pearly Pea and Sew Delighted Boutique)
4. Build-a-Bear with Lily's heartbeat for Ted
5. Banner with her name for pictures and Ted's room
6. Scheduled family pictures
7. A crocheted blanket made by one of my dearest friends
8. A prayer shawl my aunt sent me made by women from her school
9. Knit (many) beanies to go with her sweet outfits
10. Get Ted a "big brother" t-shirt

Amidst all of these To-Do's, I am constantly praying I won't have any regrets. 

Jason and I have been praying for peace throughout all this and for the most part, we have felt it. We keep asking God that we will be at peace with when she is born, how she is born, who is there, how long we get with her. 

My mind keeps wanting to be more specific with my prayers, but I know the most important thing is for Jason and I to feel God's peace and know that no matter what, she is perfect and she will come to us in His own perfect way.

35 weeks with Lily