Traveling Through Grief

February 21, 2012

Today I have the pleasure of sharing another guest post with you.  Dana, the mom of Caroline from the Our Beautiful Butterflies post, shares with us her experience through the 7 states of grief.  Dana has her own blog over at Please check it out!

Traveling Through Grief

I am reminded every day that my daughter is a miracle. Everyday I am reminded of all that we have been through in these past 23 months. Everyday I am reminded of the journey that I have taken over these past months to travel through grief and see the miracle in my presence.

I believe that many special needs parents go through the 7 stages of grief. Unfortunately, I don’t believe that we all talk about it or like to admit it. My journey through grief started when I was 9 weeks pregnant and a cystic hygroma was detected, doom and gloom prognosis was given, an amnio was denied by us, and a healthy baby girl with TS blessed and changed our lives forever.

Shock is exactly how I would explain that sunny April day in 2010. It was just a random ultrasound because of some cramping I had been experiencing. I took my 14 month old daughter with me to the appointment. I phoned my husband and told him I would bring him a soda when I was done with the appointment. He was having an awful day at work and I thought the soda would brighten his day. At the appointment my 14 month old waited patiently as the tech explained what she saw. Honestly, I don’t even remember the diagnosis of a cystic hygroma. I just remember them telling me something was seriously wrong and that I needed to do the 1st trimester screening in two weeks. That whole appointment is so etched in my brain, but yet so foggy. I took my ultrasound picture, got my husband a soda, and tried my best to hold it all together as I met my husband. Needless to say, this was one of the hardest days of our 9 years of marriage. When you are pregnant, you never expect that you will be that minority of parents who get life changing news, yet here we were. We were shocked and so emotionally drained.


The following day I received my Baby Beats heartbeat monitor that I had ordered the week before. Receiving that monitor was like a knife in my heart. Instead of listening to my baby grow, I felt like I would be listening to see if my baby had stopped growing. The following two weeks were just so hard. I found forums that had a positive vibe, but there were still so many unknowns that nothing really helped to ease the pain. I felt like I was being punished for wanting to peak at my baby via the ultrasound. I know it is not rational, but I thought that if I would have waited until the 20 week ultrasound, there would not have been bad news and my baby would have been perfect. I know that sounds silly.

To say I was not angry would be a lie. I had suffered a miscarriage before the birth of my first daughter, so I understood the grief that is felt after losing a pregnancy. I was so angry that I had such a high probability of going through something similar, but also so much harder and difficult to bear. I had been told that I had a 90% chance of having a miscarriage before 24 weeks. The “why me” was running through my head daily.

Looking back I would say I was depressed. I had a hard time being around other pregnant friends. My friends had very close due dates and one was actually due on the same day as me. I constantly wondered how November would look. I thought about how seeing friends’ babies would be a reminder of us not having our baby. I tried my best to not let these feelings be known. I would make things seem better than what they were. Who wants to be around a depressed person?  I became an expert at hiding my emotions and sugar coating feelings.

At 19 weeks I was scheduled to have an amnio. Before the amnio, the perinatologist did a scan of our daughter’s neck and discovered that the cystic hygroma had resolved. We were overjoyed and decided to decline the amnio. At 24 weeks her heart echo came back great with no seen heart abnormalities. On the way home from the appointment, I stopped and purchased my little fighter her very first outfit. Yes, I have another little girl and plenty of clothes, but this outfit represented the hope and faith I had about making it to November and delivering a healthy baby girl. I finally felt hopeful.

I wish I could say that my mind never went to the “what-if’s”, but it did. I tried to prepare the best I could, but I don’t think one can really prepare for something you have no clue how to handle.

November 11th, 2010 came and so did a beautiful baby girl. Soon after birth she was diagnosed with Turner Syndrome. She had the classic puffy hands and feet, along with upturned toe nails and tiny, narrow fingernails. When the head NICU doctor walked in to give us the news, my heart broke all over again. I didn’t know much about TS at the moment, but I did know that my daughter would not be able to conceive children of her own. Realizing she would be infertile was just a hard pill to swallow. After a night of searching, I became more educated on TS. I knew we had a long road to travel, but I was thankful to God for allowing us to be her parents. At that moment I decided to be hopeful. How can you not be hopeful when you realize that your daughter is the 2% that make it to term.

Although I am so hopeful, there have been moments where the grief seeps back in and I ask “why Caroline?” Letting the grief come back does not help, but I think it is a normal part of the process. During these past 15 months, I have found a wonderful support group with ladies who have daughters with TS. Finding a support group has been crucial to helping me accept some of the TS issues Caroline has and finding hope by listening to the moms of older TS girls. It is an amazing feeling to find a place where people just understand what you are going through and offer support and comfort.

Traveling through the grief process was hard, but I am so thankful to God for showing us something that has kept my daughter healthy. If I would have had just the standard 20 week ultrasound, my daughter’s cystic hygroma would not have been discovered. Since there is not enough awareness on TS, I wonder if anyone would have caught her TS at birth? Thankfully I don’t have to wonder. Although difficult, I am happy for the grief because it led to an early Turner Syndrome diagnosis. Early diagnosis is key for girls with TS.

I found “Welcome to Holland" while I was pregnant with Caroline. The essay was written in 1987 by
Emily Perl Kingsley, about having a child with a disability. The piece is given by many organizations to new parents of children with special-needs.

“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......”

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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  1. Wonderful story and so helpful for others! You never can quite imagine where life will take you...and this story is so honest and positive at the same time - about a topic that can be very emotional and negative at times! Thanks for sharing a piece of your lives with the rest of us!


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