A Preemie Mom’s Story and a Reminder for National Pregnancy and Infant Loss Awareness Month

National Pregnancy and Infant Loss Awareness Month

Each year, October 15th is Pregnancy and Infant Loss Awareness Day, and in 1988, President Ronald Reagan declared October Pregnancy Loss and Infant Loss Awareness Month. This year, we’re honored to be reposting preemie mom Belinda’s story of loss and birth combined that was originally shared on the Graham’s Foundation blog. Belinda is one of Graham’s Foundation’s Preemie Parent Mentors and can be reached through the Graham’s Foundation website.

October used to be one of my favorite months – my favorite time of the year for so many reasons. But life has a way of changing our favorite things and not always for the better.

When I was younger, not much younger than I am now, I loved October because it meant fall. Where I live the leaves change into the most extraordinary colors and the smell in the air still makes me think about school and packing my book bag for the first day of class. It always felt like the beginning of something exciting. Maybe it was the anticipation of my favorite holiday. I love Halloween – for me, it’s like Christmas but better. There’s a certain magic to it but it’s the magic of creation instead of anticipation. I loved dressing up and trick-or-treating as a kid, and when I got older it was going to parties or answering the door to kids’ excited faces as they yelled “TRICK OR TREAT!”

I also loved October because it was so close to my birthday in November. As long and crazy as our winters are here, I love the arrival of the cold, the kickoff of the holidays and of course, FOOTBALL! Imagine how joyful my winter was when I learned in February of 2011 that I was pregnant – a very unexpected but still hoped for surprise. I also found out a short while later that I would be bringing fraternal twins into the world in November or more likely October, as my OB would tell me. How much happier could a girl be? I was once told I might never have children, and then I learned I was pregnant with twins during my favorite time of year and that they’d be born around my birthday! My head swam with the ideas of coordinating costumes.

It was so exciting. I couldn’t wait for them to come, to meet them, to hold them together. I felt so blessed, so lucky. I imagined the holidays with my family members oohing and aahhing over the twins, the pictures, and all the snuggling indoors during the colder months. I thought about how cool would it be it they were born on Halloween or on 11/02/11! That would be the BEST birthday present EVER!

Each passing month brought new things to learn about the twins and my anticipation built. I just couldn’t wait for them to be here! They were a part of me even before I took a pregnancy test at just five weeks. I knew they were rooted deeply in my core. I was overwhelmed, but I couldn’t imagine not having them both.

But like I said, life has a way of turning everything upside down. Tragedy struck on August 3, 2011, while I was cleaning the truck I was selling to get something more “mom”. I felt a pain. I called my OB who told me to stay home and come in the next morning. That morning was 27 weeks into my pregnancy – August 4 is a date that will forever remind me of how precious life is. There I was waiting to have another ultrasound and wondering what my babies would be like now since it had been two weeks since the last one. What antics would they have for me?

The ultrasound technician was very quiet before she said she was unable to locate my son’s heartbeat. I at first thought she was kidding, not like a funny joke but the kind that makes your heart stop. Like in just a second she would say, “Everything is ok – I actually hit a wrong button and your babies are fine.” And I knew it had to be a mistake because my son, Colton Matthew, was the bigger twin. He was so active, unlike his fraternal twin sister, Amelia Rose, who was having a bit of trouble and still needed extra monitoring. When the ultrasound tech left the room with the screen still on showing one full of life and the other not, I felt my heart shatter into a thousand pieces. And there was NOTHING I could do.

I PLEADED and I BEGGED my OB to intervene. My son was fine just the other day! I knew because I would listen to their heartbeats with a Doppler at work, or the ultrasound tech would let me sneak a peek. Being a nurse for eight years, I KNEW there had to be something that could be done. But he said even if there was it would be too risky with Amelia sharing the womb. And that was it. Those words marked the end of my son’s brief time with us, the last time we three – I had called us the ABCs – would be together on earth. I was grateful but dismayed to have been carrying him when he passed; I knew he was not alone, although the thought to this day makes me well up with tears. He was taken too soon.

Thirteen days later, Colt’s twin sister Amelia came into the world. It was a beautiful day, clouded by the sadness that her brother did not come with her.

It wasn’t until a year later that I learned that October was significant not just for fall and the leaves changing color, for Halloween and trick or treating. October is National Pregnancy and Infant Loss Awareness Month – a month for us to think about all the mothers, fathers, sisters, brothers, families, and friends who have had someone so precious taken from them much, much too soon. It is an important month, though one I wish was not significant for the loss of my baby or anyone’s baby. It’s an awareness month more people should know about. You never think that losing a baby or a child can ever happen to you, especially when you did everything right. Every day has been hard since that morning in August, but each day is met with hope that I will one day see my son again.

I was asked in September of 2012 to speak at a conference about what October and National Pregnancy and Infant Loss Awareness Month means to me. I prepared a speech, practiced it over and over but could never get through without breaking down. Nothing, no amount of preparation, can prepare a mother for something like that. I am grateful for the 27 weeks during which I was blessed to carry him and that Colt did not die alone, but I will never be the same again.

I know this is probably not the kind of blog anyone wants to read. I know this because when I tell the story of our twins, too many people – even family and friends – respond by telling me that no one wants to hear such a sad story. Of course I wish this was not our story.   I sometimes hold it back or lie and act as though they are both alive and thriving, which makes me feel they are. There are so many different ways I have either told or not told our story. I still haven’t figured out what story to tell.

As if losing a baby was not hard enough, his surviving twin had to spend time in the NICU before coming home. It was almost a month before I held her or heard her sweet cry. Every night I had to leave her in the care of strangers. I couldn’t hold her and rock her as most new mothers get to do. I couldn’t sleep near her. I missed out on all the things most first-time moms experience. It was awful and scary and traumatic. Amelia spent a total of 167 days in the NICU. Those strangers eventually became our friends and some became like family. Even with all that care, we were still told she might not make it to her first birthday. She turned three in August and is amazing.

Amelia IS a twin and she will always be a twin, and I will always be the mother of twins whether that makes anyone uncomfortable or not. I used to care about how our story made others feel but not anymore. I know her brother Colton has been looking out for her and is helping her get into enough mischief for me to feel like they are both still here. During one of many difficult times in the NICU, Amelia was thought to have gone into heart failure. A pediatric cardiologist discovered that Amelia had two Superior Vena Cava’s, and he said that was interesting because that was more common in patients with congenital heart disease, which Amelia does not have. I smiled at him through my tears and said, “It makes perfect sense to me. Her brother gave her a piece of his heart so she could live”.

I know death is something no one likes to talk about and even less when the story involves a child. I am trying to honor my son by sharing his story and looking for ways to stay positive while we live our lives without him.

If you have lost a baby or a child, please, try to find ways to smile. Please try to be kind to yourself and know there will be good days and really bad days. Know that no one will ever feel what you feel but there are others who have suffered similar losses and sometimes it really helps to talk with someone who can understand. You are NOT ALONE. And for those of you reading this who know someone who has lost a child, even if you can’t imagine or you don’t feel you can voice your feelings, please think about what you say and how it may be heard but don’t walk away from them. They feel isolated as it is and an awkward comfort is still something. I have had close friends who no longer speak to me and I am sure it is because they feel they can’t relate, which I get, but also because they can’t deal. That’s not fair. I can’t always “deal” but I still have to live with it. Don’t be someone who can’t deal – be there even if you say nothing. Just be there.

My thoughts and my heart go out to the parents and families and friends who have lost, today and every day. I am not very religious, but I believe in God. One of my friends passed this poem to me and now I am sharing it with you:

 

Mommy please don’t cry                                                                        

Cause I am in the arms of Jesus

And He sings me lullabies

 

Please try not to question God

Don’t think He is unkind

Don’t think He sent me to you

And then He changed His mind

 

You see, I am a special Child

And I am needed up above

I’m the special gift you gave Him

The product of your love

 

I’ll always be there with you

And watch the sky at night

Find the brightest star that’s gleaming

That’s my eyes shining bright

 

You’ll see me in the morning frost

That mists your windowpane

That’s me, in the summer showers

I’ll be dancing in the rain

 

When you feel a gentle breeze

From a gentle wind that blows

That’s me! I’ll be there

Planting a kiss upon your nose

 

When you see a child playing

And your heart feels a little tug

That’s me! I’ll be there

Giving your heart a hug

 

So, Mommy don’t you cry

I’m in the arms of Jesus

And He sings me lullabies

 

~Author Unknown

 

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