Wednesday, June 18, 2014

The Sorrows of Mary

My intentions of starting this blog was just to document the happenings of our family. Never did I dream of anything like this happening to us, so I never thought of this blog going in any other direction. It has always been mostly for me and for Jason.

This is still mostly for us, but it also seems to be more than that now. My hopes are that no one else ever has to search for "anencephaly blogs", but if they do, I hope they appreciate our honesty, our willingness to be open and to be vulnerable. I hope they learn that every single emotion is normal. There is no right way to do this. I have found hope in other people's stories and I hope that I can do the same for someone else.

But, there are times I feel utterly hopeless. There are moments where my grief turns to anger and all I want to do is cry and scream. That's when the "why's" take over and I know how dangerous those "why's" can be.

Why is this happening to us? Why me and not them? Why does the person who never wanted a child get a healthy one? Why does this happen to someone who desires a large family? Why, when I have waited so long to have children, would this happen to me? Why would God allow this to happen to me?

And the answer is so simple and I hate it. Why? It doesn't matter why, so why keep asking? If I knew the reason for the why's, would it change anything? Would it take away the aching in my heart? Would it take away my longing to keep Lily here? Would it make me feel any better? No, because the answer to any of those questions doesn't make any of this go away. 

When my sorrow and grief turns to anger it takes over. In those moments of feeling completely helpless and weak, I beg God to take Lily now. I beg him to not make me bear this for the next 4 months and beyond. Just as I start to feel so much guilt for even thinking this, I then start to panic because I fear my wish is coming true. I worry that I haven't felt her move in awhile. I am full of grief thinking I am losing her now.

But then something truly amazing happens. Lily reassures her mom that for now everything is okay. She lets me know that she is strong and that she is still with me and I am truly grateful. She will spend the next hour rolling, kicking and punching me. When Ted is sitting on my lap and reading a story, she likes to let us know she is with us too. I can't wait for her kicks to be strong enough for Ted to feel. I can't wait to tell him all about his sister Lily and how every single time he sat with me, she would start kicking.

Jason and I started praying and meditating on the Seven Sorrows of Mary (There are lots of websites with the sorrows, but we liked this one best). I am not one to pray devotions. I know, I know...what kind of Catholic am I? ;) A friend recommended it to me and Jason and I wanted to do something. We've obviously been praying, but it's nice to have some type of focus when you pray. So, we are starting with these seven sorrows. 

The first sorrow is The Holy Prophecy of Simeon.

The Blessed Virgin, filled with joy, presented her only son in the temple. How her heart must have broken to hear the prophetic words of Simeon as he foretold the suffering of the Savior and His mother.

For the first time in my life, I felt like I had a glimpse into Mary's life and suffering. During this prayer time, Jason and I relived the day we learned of Lily's condition. We relived that moment when we learned that we have to live the next five months knowing that our greatest fear will come true. I am sure Mary felt the joy and pride of presenting her beloved child, just like we felt the joy and anticipation of seeing our child in the ultrasound. And all in a single moment time stands still and you learn that every dream you have for that sweet little soul has been shattered.

I often think of Mary's "yes". Would she still have said yes if she knew what her Son would go through? I like to think so, although I will never know for sure. All I know is that my yes to life has not changed. As painful as this is and I hope and pray we don't ever have to endure it again, I would still say yes to life. With absolute certainty I would say yes to Lily's life again and again. 

Despite our suffering, we still find joy in each and every day. We had a wonderful Father's Day celebrating Jason with pizza and watching Ted at the Splash Pad.

Wednesday, June 11, 2014

A soul is a soul

20 weeks. Such a great milestone in pregnancy. I remember the joy and accomplishment I felt when I was 20 weeks pregnant with Ted. Halfway there! Halfway to meeting our baby! I was stocking up on cloth diapers, looking into Bradley birth classes and "Pinteresting" the heck out of nursery ideas.

Now here we are...20 weeks along with Lily. I still feel the accomplishment of pregnancy, but my joy is replaced with anxiousness and tears. We are half way there...half way to meeting our daughter and most likely, half way to letting her go

I can get through the day by day. Ted is a great distracter. :) But when I think about the day to come, tears immediately roll down my face. I am overcome with the sorrow. I feel so weak and broken. How are we ever going to do this? How am I going to get through labor? I remember in our birth class for Ted, the instructor reminding us that every contraction means we are that much closer to meeting our baby. I told myself and Jason told me over and over (and over and over and over for 45 hours) until we met Ted

It has such a different meaning to me now. Each one contraction seeing our sweet girl...and most likely saying goodbye to her

Many people might wonder why go through this? Why put ourselves through the next 20 weeks knowing our daughter's most likely fate? Some have said how brave and courageous we are to go on. But the truth is...Jason and I made this choice well before I even became pregnant. We made this decision when we took a vow before God and 250 witnesses that we would lovingly accept children. All children. Any child. No matter what.

It's not hard for me to choose her life. It's not hard for me to choose to love her. It's hard to think about letting go of her. But, would it make it any easier to let go of her now? If anything I think it would be more pain, more sorrow, more grief.

What parent wouldn't want five more months with their child? What parent wouldn't hold on to every last ounce of hope for a miracle? 

Our little Lily, despite her diagnosis, is strong. She lets me know every day that she is a fighter. I started to really feel Ted around 19 weeks. Every night when I would lay down to sleep the somersaults would begin. I loved every second of it. Lily is no different. If anything, she has an even stronger will. I feel her move and kick all day long at 20 weeks. At 20 weeks, her kicks are so strong Jason can feel her. We are beyond thankful for that gift...a gift we would have missed if we did not choose her life.

I couldn't imagine giving that up for anything in the world. She is ours forever even though she will only be with us here a short time. 

I am terrified when I think ahead to her birth. I'm afraid of how hard labor will be. I'm afraid she won't be born alive. I'm afraid she will and I will have to let her go. When these thoughts roll through my head and I get overwhelmed with the fear, the anxiety, the pain, I think about her sweet kicks. I remember the midwife telling me that her heartbeat is so strong. Our precious girl reminds me with her kicks, with her heartbeat to be strong. 

So we put everything in God's hands. The labor. The birth. Our sweet daughter. We put it all in God's hands and pray for the peace to accept whatever He gives us. I can do all things through Him. I've never clinged to those words more...

Today we went to the zoo for a picnic breakfast and the Splash Pad. 
My sweet Lily, you kicked like crazy as your brother played in the water.

21 Weeks with Lily Frances

Saturday, June 7, 2014

Grace, not strength

Up until one week ago, I naively believed I could never have a miscarriage. Not because I thought I had extra favor with God or anything. I believed that God knew I wasn't "strong enough" to handle it. That I was too weak and I would never be able to learn, grow or get passed something like this. How foolish was I? Like anyone would ever say, sure I'm strong enough to handle a tragedy like that...bring it on.

I've watched many friends suffer the loss of a child admiring their strength to carry through. Admiring their faith to still have complete trust and ability to surrender to God. They seemed so strong and brave. I would look at them and say, I have no idea how they are able to survive this...I would crumble. I would give up. 

I am sure if anyone had asked them in the moment if they felt strong, they would probably say they had never felt more weak, more broken, more vulnerable. When I first found out about Lily's condition, once I stopped sobbing and was able to say anything; my very first prayer was: God, please don't make me do this. Please just take her now. Don't make me endure the next five months knowing I am going to lose my daughter. 

Does that sound like the prayer of a strong woman? 

Now that I am in it, I realize my friends were not relying on strength. I don't think you could ever say any person is strong enough to handle something like this. I don't think anyone is built with the strength one would need to endure something like this. Nor do I believe in the old adage, "God only gives you what you can handle." (I apologize if this offends anyone who has said it to me, but I call BS on that sentiment right now.)

It's not strength, it's grace. I am broken-hearted. I am weak. I am not capable of carrying this cross. I don't think anyone is. But, I know now how my friends who have experienced similar loss have's grace. 

I did not think I would survive the first day after learning of Lily's condition. But, I did. Not by my own doing, but by the prayers, love and support of others. We have made it through an unimaginable week by the grace of God. As much as I feel alone right now, I know with all my heart my God is carrying us through this. I made it through with the smiles, giggles and snuggles of a sweet little boy. I made it through with the love of my amazing husband who tells me he loves me all day long and reminds me through his tears, we can do this. 

And then there is this sweet boy. Despite our heartache and sorrow, he brings us so much joy. If for no one else, we move forward, so that we can tell Ted all about all the things he got to do with his sweet sister Lily while she is with us. This week she got to go to the Library, the Splash pad and out for breakfast. These are the moments we will hang on to and pray they will carry us through.

Tuesday, June 3, 2014

A name for our sweet girl

First off, thank you, thank you, thank you for all of your prayers. Jason and I are so humbled by the outpouring of love and prayers we have received. We can feel your prayers and are coasting on the grace. 

When Ted was born, it took us almost 24 hours to name him. All the names we had thought of prior just didn't fit. We didn't share any name ideas with anyone. It was just between Jason and I until we decided to tell the world. 

Obviously, our circumstances have changed. We had not planned on even finding out if the baby was a boy or a girl, but now that we know that we only have the next few precious months we wanted to find out. Several people have also asked if we have named her so they can pray for her by name.

After receiving our baby girl's diagnosis I went home and made the terrible mistake of looking at medical websites the next day. I really just wanted to learn exactly what this meant. The doctor said a lot and I was in a daze and in shock and didn't really hear it all. I wanted to know what exactly was happening. I wanted to know if there were pregnancy symptoms that I was missing. I wanted to know if there was a possibility of a misdiagnosis. 

I found some of what I was looking for, but also saw some images that terrified me. If you are reading this and going through the same/similar situation I urge you to not read medical websites. They will tell you the science, but give you no peace or hope. They instilled a fear in me to even see our baby girl and this broke my heart a million times over. I was terrified and begging God to just take her now so I wouldn't have to see her like that.

On Sunday, I tried taking a nap while Ted was napping and couldn't. I decided to look up some support blogs. Real women and real families who have been through this. Their stories and pictures gave me some hope. They offered some great advice to help prepare me. They had beautiful pictures of their little angels and the precious time they had together.

Jason and I talked about several different names. We had decided on "Frances/Francis" before we knew any of this. Frances for the Saints, the Pope and my grandma who passed away a few years ago. We thought of some names that mean "Heaven", but they just were not right. My daughter, no matter her defect is a pure and beautiful child of God. I want her name to represent that. I wanted to give her a name that will remind Jason and I every time we say it that she is beautiful. We decided on Lily, which means purity and beauty. 

We pray that every day until the day we meet her we can say her name and be reminded of how beautiful she will be no matter what. 

My sweet Lily Frances, Mommy loves you so much. 

A beautiful picture from a dear friend who lost her sweet son to cancer.

Monday, June 2, 2014

Love may cost us dearly

I'm not even quite sure where to begin with this post...

I'll start by telling you how excited I was for last week. One dear friend was getting ready to have a baby and another dear friend was getting married. This didn't make it that different of a week for us. It seems like any given week I know several people who are getting ready to have babies or a wedding. We are surrounded by a large and beautiful Catholic community and weddings and babies just come naturally with that package.

But these two...these two were on my heart all week for a different reason. Joy in suffering. I had been thinking about it all week, even thinking about how I could blog about it. Something held me back...laziness, maybe God? 

My friend having the baby lost her 1 year old son to cancer almost a year ago. It broke our hearts in a way we never imagined. It was awful to see our friends suffer like that. But then the news came that they were expecting again and I remember thinking...God is so good

My friend getting married lost his wife to cancer almost two years ago. This also broke my heart in a way I never could imagine. I remember going to the vigil and prayer service and seeing my friend put his head in his hands and weep for his wife. But then he reconnected with someone, who also happens to be one of my closest friends. I remember thinking again...God is so good.

I thought God's timing was so amazing that these two friends who had suffered so much were going to be experiencing new life in the same week. My friend's sweet baby girl was born on Thursday and my friends' wedding was on Saturday. When I got the news that the baby was here I couldn't stop the tears of joy. I texted some girlfriends the news and said...God is so good.

Then Friday came. We had our 18 week routine ultrasound. Routine ultrasound.

And just like that our lives were changed forever...

It seemed to start out normal. The baby was moving around and the tech was chasing the baby trying to get a good picture. She seemed to be doing the normal, routine measurements and checks. The baby's heartbeat was good. She said the baby's head was down and she couldn't get a good picture. She went to show the physician the pictures.

I am a glass half-full kind of person. My husband, a bit of a worrier, often has a glass half-empty perception. He immediately felt something was wrong when the physician came in. She said she needed to discuss something with us. 

Jason, my brave husband asked if there was something wrong. I would never be strong enough to ask because I would never want to hear the answer. She said there was something wrong.

She said a lot of words I wasn't really following. All I could think about was seeing that sweet little beating heart. She showed us a picture of the baby's head and started typing...


And I gasped and said, Oh no...I could hardly breathe.

She typed the rest of the word...


I had just recently learned this word because a woman from my church just experienced the same thing.

Without even looking at Jason, his head was buried in his hands, I asked her to tell us if it was a boy or a girl. She moved the doppler around and finally...


Instead of tears of joy, it was sobs of sorrow. God had finally given me a baby girl that my heart has always longed for, but I don't get to keep her.

For those of you that do not know, Anencephaly is a neural tubal defect where the baby is missing part of its brain and skull. Our baby will not survive outside of the womb. She is very much alive inside of me, but once she is born she will most likely only live a few hours.

My greatest fear has always been not being able to get pregnant.
My second greatest fear was having a miscarriage. 

I quickly learned that neither of these things were my greatest fear. ANENCEPHALY is my greatest fear. It's like knowing you are going to have a miscarriage every day for five months.

We drove home in silence, tears, disbelief. I have never felt such heartache as this.

My heart has ached for every friend or stranger that has suffered losing a child. I've had friends lose babies through miscarriage, illness, pre-term labor. I have a dear friend who cannot have children and my heart aches for all of them. 

I never thought I would be counted among these brave women. I never thought I would join their club.

I asked Jason if he understood what was happening. He said yes, but he didn't know why it was happening to us. I think it's a question that will haunt us the rest of our lives.

I laid down on our bed and Jason laid next to me. We couldn't really talk, we just laid there and cried. Jason went to go get Ted and I just stayed there laying by myself.

In that time alone, I wept. I begged God to not make me go through this. I didn't want to tell anyone because that meant it was really happening

I finally mustered up the strength to call my mom and sister. They were the only two I knew I could talk to. Through their tears they said all the right things. They joined me in mourning, they comforted me and told me I was stronger than I felt. 

I texted some close friends because I knew I couldn't call them all. But I knew I needed to tell them. I needed their prayers. I have never felt more alone and more loved all at the same time.

The weird thing is that when your world stops, everyone else's keeps going. We still had my friends' wedding rehearsal to attend that day. I thought about calling her and telling her I couldn't do the reading or go to the rehearsal. But then I remembered all the suffering that her soon-to-be husband went through and I knew that we had to go. I could hear God say to me, remember that there is joy in suffering. 

Jason went with me because neither of us wanted to be alone. We tried our best to feel and act normal, but it was so difficult. It took every ounce of strength not to break down when I walked into the church. Somehow, by the grace of God, we made it through.

Their wedding was beautiful. Those words, joy in suffering and God is so good just kept swirling through my mind. I've never cried so much at a wedding.

Their second reading was the same one Jason and I had at our wedding just over two years ago:

Romans 12:1-13

I urge you therefore, brothers, by the mercies of God, to offer your bodies as a living sacrifice, holy and pleasing to God, your spiritual worship. Do not conform yourselves to this age but be transformed by the renewal of your mind, that you may discern what is the will of God, what is good and pleasing and perfect.

For by the grace given to me I tell everyone among you not to think of himself more highly than one ought to think, but to think soberly, each according to the measure of faith that God has apportioned.

For as in one body we have many parts, and all the parts do not have the same function, so we, though many, are one body in Christ and individually parts of one another. Since we have gifts that differ according to the grace given to us, let us exercise them: if prophecy, in proportion to the faith; if ministry, in ministering; if one is a teacher, in teaching; if one exhorts, in exhortation; if one contributes, in generosity; if one is over others, with diligence; if one does acts of mercy, with cheerfulness.

Let love be sincere; hate what is evil, hold on to what is good; love one another with mutual affection; anticipate one another in showing honor. Do not grow slack in zeal, be fervent in spirit, serve the Lord. Rejoice in hope, endure in affliction, persevere in prayer. Contribute to the needs of the holy ones, exercise hospitality.

After two years of marriage, our vows took on a whole new meaning. For better or for worse; in sickness and in health...

I couldn't get past the first verse...
"to offer your bodies as a living sacrifice, holy and pleasing to God." My heart ached. I was begging God to take this away from me and then I heard this. I still don't know how I will be able to do it, but this is how God is calling me to offer my body as a living sacrifice, holy and pleasing to God. I am my baby's life support. I will never understand why God is asking this of me, but He is.

This is the worst thing I could ever imagine, but I know there are still people who experience worse. My dear friend lost her first-born son. Another friend went into preterm labor. She had no notice, no time to prepare and accept her fate. 

I have the joy, smiles and laughter of a sweet, silly 13 month old boy that I know will carry Jason and I through this. I know that as difficult as this will be, our marriage and family will be strengthened. I never knew that my heart could break, but also grow in so much love at the same time. I know this child's life is precious and she will remind me every day to cherish every second with her brother.

I say this now and it may sound like I have it all figured out. The truth is I don't have a clue how I will actually do this. I know I cannot do it alone and I cannot do it without prayer. I ask you for prayers and for the intercession of all the sweet souls that were taken from their mothers too soon.

Bradley, Leo, Stella, Ethan, Oliver, Celeste, Marie Therese, Kolbe, Veronica,Teresa...
please pray for us and our sweet girl.

A little glimpse of the joy that comes after suffering: 

 A beautiful girl with a big brother in Heaven.

 A new covenant

And this sweet boy...
he knows exactly what his mama needs, whether a kiss, a giggle or a snuggle