Wednesday, March 19, 2014

The Day that Changed Our Lives

This story was submitted to Share by Linda and Frank Manzella.

After 10 years of marriage, my husband and I finally felt ready to start a family.  Due to my husband’s job, we have been living overseas for quite some time now and have really enjoyed traveling and experiencing different cultures, just the two of us.  We don’t regret one bit waiting until we were ready to start a family. Of course, we’re the last of the Mohicans as all our friends have long since had kids.  

We were absolutely thrilled when we found out we were having a baby.  Being first time expectant parents, we also felt very cautious and superstitious about everything; it really was all such a miracle to us.  We didn’t tell our family and friends until I was five months pregnant.  My numbers came in high on a specific test, which meant there was a higher than normal risk of Down Syndrome or spina bifida. This was probably because of my age; I was 36.  We decided to have an amniocentesis done, even though we would have had the baby with or without Down Syndrome. We only wanted to prepare our family if something was wrong and also have time to educate ourselves the best we could if it came down to it.  Anyway, after the amnio, we heard the news from our doctor that our baby was genetically normal.  We were so relieved, and that’s when we finally felt comfortable to make the big announcement to our friends and family. We also found out we were having a baby girl. While we wanted it to be a surprise, our doctor slipped a few times during our appointment and said “she.” So, even though we found out when we weren’t expecting to, we felt so blessed. 

Our six month routine checkup started off like any other. The appointment was going great…we heard her heartbeat, her organs looked great, she was growing normally.  Then, the doctor was measuring her head for probably only a minute, but it felt like a lifetime.  He said our baby’s head was slightly larger than it should be at this point but not to worry, he wanted to check her brain. Then came the dreaded words that changed our lives….”this concerns me.”   We were told there was a severe amount of fluid build-up in her brain, and this condition is called hydrocephalus.  He wanted us to go for another ultrasound the next day with a colleague of his, and he definitely didn’t sugarcoat anything.  He prepared us for the worst….he said the fluid was pushing down on our baby’s brain, preventing it from developing.  He felt very sure that our baby would pass away before the nine month mark, and if she did survive the birth, she wouldn’t live more than a year.  He said she was “incompatible with life” and would be suffering.  We were completely devastated and experiencing the worst shock of our lives.  Our tears shed immediately, and we had to wait the whole day and night before we would see the other doctor to have the other test done.  It was the longest day and night of our lives as we awaited this appointment. 

At the appointment, yet another doctor was called in, and no words were spoken for quite some time. We knew it had to be the worst case scenario.  It was confirmed her condition was so severe that nothing could be done; she was not going to survive.  Even though we had found out she was normal genetically, developmental problems can occur anytime during pregnancy or even after birth.  Reading up on it, I found out hydrocephalus is even more common than Down Syndrome, though I never really knew much about it.  I had just finally posted a photo of myself at six months pregnant on facebook.  Little did I know that a week later, everything would change for the worst. 
I gave birth at six and a half months pregnant to our beautiful baby girl Ava Marie on October 20, 2013.  She didn’t survive.  She was absolutely adorable, and she looked just like my husband with her dark hair. She also his same nose and lips.  She was so perfect looking one would never know anything was wrong.  She weighed 2.2 pounds and looked so peaceful, which gave us a sense of peace through our devastating grief. 

We thank God that we were able to spend time with her, holding her, kissing her, adoring her, talking to her, crying our eyes out.  We took a bunch of photos and have her tiny hand/footprints that we are so thankful for. We have her ashes that we hold together every night.  Her due date (1/23) just passed, and it’s been particularly rough.  My husband and I are Catholic. We believe in God but haven’t attended mass in ages.  We try to live our lives by doing the right things; we donate, volunteer, pray often and are kind to others.  

When tragedy strikes, it really makes you question your beliefs.  Why would God allow something so heartbreaking and devastating to happen to us? We are the two most sensitive people we know. Why was our beautiful baby taken away so quickly?  It’s completely unfair and really made us feel angry at the world.  People left and right announce babies so early on in their pregnancy like it’s a done deal, while we were so cautious and this still happened.  It just really makes us feel so angry and so jipped.  

Being angry though is normal, but it is not always healthy.  The only logical way we can get through this is to believe she is our angel watching over us.  I’m trying not to be angry with God as there has to be a reason this happened.  If anyone asks us if we have any kids, we always say we had our beautiful daughter but she’s in heaven.  She mattered, she counted, so I can’t just say, “No, we don’t have any kids yet.” One day if we are blessed with healthy kids, they will know all about their big sister Ava.  

No parent should ever lose a child; it is the most devastating pain ever. It is a pain we will carry for the rest of our lives.  It’s so upsetting; it feels our life is standing still, yet everyone else around us is going on with their lives as if nothing happened.  I’m not sure if anyone else has experienced this, but our friends have been so distant, not even writing to check up on us.  How can they think that saying nothing is better than reaching out to us?  It makes no sense, and people really act strange when tragedy strikes.  No words anyone can say could ease our pain, but at least try to be there for us.  That’s also made me angry, but I’m trying to find peace with it. I remind myself that people have absolutely no clue what we’ve been through and what we will live with forever.  We still believe in God through all this, but we have been quite angry with him.  We know he had to have a good reason for taking her so soon, and we look forward to the day we can see her again in Heaven.  We miss her terribly. We only met her for a short time, but she had such an impact on our lives. We will remember the moments we spent with her forever.  There is not a day that goes by that we don’t think about Ava and mourn for her.  We wonder what she would have been like, sounded like, etc.  It is devastating that we will never know her, and she will never know us. It is so unfair and heartbreaking.  I’m crying as I write this.  People who haven’t gone through this will never know this kind of pain or loss, and I wouldn’t wish this on anyone.  Thank you for allowing us to share our story, it is a real privilege and we look forward to reading your stories as well……so many of you are an inspiration to us and give us hope.


Kim Frakowski said...

Thank you for sharing your Angel Baby Ava's story. Believe me, that took great courage and love. This could've been written by me, 17 years ago this coming August. No words that anyone say can take away your pain, you will always have pain but it does ease up. My Angel Baby Kalib sent us twin boys 13 years ago and they have always known that they have a big baby brother. Take all the time you need as you grieve, no one else can decide for you when you will start feeling better.

Linda Manzella said...

Thanks so much Kim for your kind words and support, I really appreciate it! I'm so sorry for your loss but so happy to hear you were blessed with twins! Keep staying strong!

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