Life

Trisomy 18. The Word That Changed Her Life

lavander on ellen

Lavender”s Story from her Mom

~~Trisomy 18. The word that changed my life. The word that meant nothing to me just a week ago.

It was 4th of July weekend and everyone around me was celebrating. This call that I was dreading finally came. When I heard the words “Are you sitting down?”, I knew what was to come. The phone was pressed against my ear and I could hear her saying this word, but everything around me was blurry, and my body went numb. How did I get here? Just four days earlier I was at my 12 week ultrasound with my husband and daughter. We were laughing in the waiting room and planning our celebratory lunch after seeing our beautiful baby. During the ultrasound as we gushed over how cute our baby was, and took bets on the gender, the ultrasound tech was silent. She left the room and a doctor came in to tell us that “something wasn’t quite right” and “it wasn’t anything we did”. They listed a number of disorders that my baby may possibly have; and I researched every single one. For four days I didn’t leave my couch. I read article after article and cried until there weren’t any tears left. As much as I wanted to believe everything would be okay, a Mother knows when something doesn’t feel right.

Now, I am on this dreaded call that I’ve been waiting for. She went on to tell me the list of things my baby would be; or wouldn’t be. “Children with Trisomy 18 have defects of the heart, lungs, and kidneys. They often have cleft palates, low birth weight, clubbed feet, clenched fists, severe developmental delays. They do not speak, walk, eat, or smile”. Stab, after stab, after stab. This was all so painful, but the final blow echoed in my ears and knocked the wind out of me.

“Most of these babies will pass away in the second or third trimester. If they do make it to delivery they will pass away at, or soon after birth. The babies that do live have a 90% chance of passing away before their first birthday”.

I don’t remember another word after that. Just pain. Emotional, mental, physical, paralyzing pain. How is my precious baby dying before he/she is even living? This baby that we’ve been waiting for. This baby that my husband and I planned for, and celebrated with everyone we love. This is cruel. I screamed and cried. I think I screamed so loud for so long that no one could even hear me anymore.

I made a decision to allow myself to feel every emotion I wanted to feel; and most importantly to enjoy every single moment of this pregnancy, and not allow anyone to steal my joy. I waited for my husband and daughter to fall asleep and I sobbed in the middle of my living room and told God “You can use me. I will be her voice. I will stand up for life and loving beyond any earthly time limits. I will be a teacher for those who aren’t informed. I trust You”.

I spent my pregnancy smiling, crying, laughing, screaming, praying, photographing, blogging, researching, and documenting every single moment. It was a beautiful journey.

On December 27th 2016, a queen was born. Weighing 4 pounds and 7 ounces, with a head full of dark hair, the most beautiful pink pouty lips, deep brown eyes, velvet skin, and a beating heart. Today my daughter is two months and two days old, and she is absolutely compatible with life. She is the most beautiful baby I have ever laid my eyes on. She loves a warm bath and being pampered. She snorts when she sleeps. She has hundreds of nicknames. She is so strong. She loves cuddling in her sisters arms, and the sound of her Daddy’s voice magically soothes her to sleep. She is my best friend. She is so loved; not because she was a “miracle” but because she’s my daughter, and there isn’t a diagnosis that could change that.

It took me 8 months to publicly share my daughters diagnosis. There is no cure for Trisomy 18. There is nothing I can do to heal her. I have no control over the length of her life, or if she’ll be able to see, hear, smile, walk, or even breathe tomorrow. But, what I can do is protect her. I can fight for her. I can love her harder and deeper than anyone has ever been before.

This blog will not be a place for debate on choosing life, or soliciting medical advice, or any concerns for her care. This will be a place for my healing. A place for me to share the joy of life with a child that has special needs. I will share her pictures and videos, and rejoice in every second we have with her until Jesus calls her home. This blog will be about my journey of choosing life, and above all, Loving Lavender.

*March is Trisomy Awareness Month. Please wear a blue ribbon in support of my daughter, Lavender, all of the other beautiful children fighting, and for the precious lives that have already been lost*~~

 

lavander on ellen

 

Lavander is also featured on Nation of Ellen DeGeneres

ellennation-45665-the-best-ellens-birthday-present-eve2

titled as The Best Ellens Birthday Present Ever and got 7k+ views , 200+ votes in just one hour.

You can vote here

Contact & Credits: Loving Lavender / Facebook

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