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.

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.