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.

Thursday, May 14, 2015

Here and There (Six Months)

Six months and Mother's Day...a double whammy. Everyone knows what joy a six month old baby brings. It's that magical age where they are no longer a newborn and their personality starts to shine. They smile and laugh and babble and coo. They scoot and crawl and explore their world around them and I have to miss all of it

Ted is so attached to Jason right now. All he wants is his daddy. He wants Jason to give him a bath, read him stories and hold him for bedtime prayers. I love how much he loves his dad, but it makes my arms ache all the more. If Lily were here, I would want and need him to be with his dad more. I would be grateful for that bond. But she's not here...and all it does is remind me that it shouldn't be this way

My arms ache for her. every. single. day. It doesn't matter what day of the week it is or if it's the 12th, 15th or 29th day of the month. I miss her every single day. I want her in my arms. I want to see her eyes, hear her voice, and watch her grow. I am missing every single moment that should be.

Someone asked me if Mother's Day was hard and my response was it was weird. Not particularly good or bad, just weird.

On Saturday, my dear friend's mom who lost her daughter years ago took me out for breakfast. It was such a joy to visit with her, to share Lily with her and hear about her precious Marie. It's been many years and she still gets emotional talking about her. Oddly, that gives me peace. I don't ever want to "get over" Lily. I don't ever want to stop missing her or longing for her. Knowing there is someone else who has made it through this grief is comforting and inspiring. I cherish these moments of sharing with other mothers who know our loss. 

On Sunday we went to Mass as we always do. We got there a little early and one by one three seasoned mothers, all who have lost a child, sat near us. I have known these women for 13 years and I have always been in awe of their faith. They are models for me in living this life as a Christian wife, mother, sister, and friend. When I think of what kind of family life I strive for, I look to them. When we first learned of Lily's diagnosis, each one of them sought me out to let me know they were praying for us. Since Lily was born sleeping, each one of them checks in with me regularly. They get it, they are living it, and they know it doesn't matter how much time passes. Just before Mass, one leaned over, grabbed my hand and simply said, "Here and there. That's where we are... somewhere between here and there. I have one up there too." 

The feeling that has been overwhelming me lately is how unworthy I feel to be counted among these amazing women, to join the club none of us ever wanted to join. I am so unworthy of being a mother of a saint and I am in complete awe that God would entrust Lily to me. I am honored to be her mother, to experience a love so intense, and to get glimpses of Heaven that before I only dreamed of seeing. 

I feel so out of place, like I don't belong or fit anywhere. So for now, I am here and there, just like she said. Cherishing every single sweet moment with Ted on Earth and longing for glimpses and moments with Lily in Heaven. One could never replace the other, so instead, I continue this walk I never imagined taking, with one foot on Earth and one foot in Heaven.

Happy six months, Lily girl...mommy misses you so much.

Monday, May 4, 2015

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 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 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. 

Friday, May 1, 2015


I started this blogging journey almost two years ago with Ted's birth story. I had always wanted a way to document our growing family and share with friends and family near and far. It has evolved and changed as we grow and change and especially when we received Lily's diagnosis. I have spent most of the past year writing about Lily with Ted mixed in. 

I am going to try and devote some more time to Ted so he doesn't feel left out when he looks back on this blog. ;)

Where do I even start? I remember thinking I knew a lot about babies and kids before I had any. I thought that all my years as a babysitter, camp counselor, and teacher would give me all the experience I needed. I thought I would be a pro after all those child development classes and early childhood classes.

I was wrong. Beyond wrong. There really is nothing to prepare you for parenthood, especially those first few weeks and months of utter exhaustion. It was hard to be so tired and sleep deprived, but that's just the physical part. 

The part I really wasn't prepared for was the emotional part. The part where you allow yourself to be your most vulnerable because you have to be. You don't have a choice. You have this sweet and perfect little soul who is depending on you for every single need. The need to be fed, held, changed, loved, and snuggled. 

I learned quickly with Ted all the gadgets and high tech baby stuff didn't matter. All he wanted was me. No swings, no bouncers, not even the Ergo...he just wanted me

And now at two years old, my sweet, silly, stubborn, and independent little boy still wants me. He loves to play and loves his toys and friends, but the moments that get me are when he wants me to read him the same book I've read a hundred times. I will start out with him sitting next to me, but it never seems to be close enough. He always wiggles his way up on my lap and rests his head on my chest. This is my moment of pure bliss and it happens every day.

He has a strong personality. He does everything in his own time and at his own pace. Some milestones he reached really early, others he seemed to take his time. As an infant he ate every fruit and vegetable under the sun, now on a good day, he won't even try them. He is independent, pushing a chair all over the house to climb into different cupboards. He loves feeding Charlie anything he doesn't want. 

He takes his time when he is trying something new. He loves to build and stack and then knock it all down. If he could have just one toy it would be a ball. He adores his friends, especially his sweet Lucy. He giggles with delight at the sound of her voice.

He says goodbye to all of his toys when we leave the house. He says "please" and "thank you" without being asked. He calls me, "Mah!" He loves his "choo-choos" and seeing "airpanes" outside. He loves "Melmo" and "George". 

He loves his daddy so much. He shouts with joy whenever he comes home. He loves building trains and playing ball with him. Most recently, he only wants "dada" to put him to bed and does everything he can to stay up with him longer.

And every night after we say our prayers and put him to bed, he looks over at his sister's picture and says, "bye bye baby". 

There is no parent book to prepare you for that.

We had so much fun celebrating Ted all weekend with baseball, the zoo and train park. 

I love you, my sweet Ted. You have changed my life forever. Thank you for fulfilling my heart's greatest desire. Thank you for making me a mom.