Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Monday, November 30, 2015

Five Years

Five years ago you were born with a long list of anomalies and diagnoses. We waited for you, prepared for you, worried for you, cried for you, prayed for you, hoped for you, and loved you for your first 37 weeks. When you were finally born, all we could see was YOU, our beautiful daughter. All of those scary words fell away when we saw your face. Julia Grace, we are so glad you were born. Your life was and is a gift to us and to many others. We love and miss you. Happy 5th birthday. Sending you all of our love. 


Friday, October 16, 2015

Capture Your Grief Day 15


Wave of Light for International Pregnancy and Infant Loss Awareness Day

In honor of Julia and the many, many other precious ones gone too soon, we participated in this year's Wave of Light. All around the world at 7 PM candles were lit. As 7 PM arrived in each time zone, the wave of light moved forward. What a beautiful image. 


Monday, October 12, 2015

Capture Your Grief Day 12

Normalizing Grief

I never could have imagined living with this kind of grief before I was forced to. I didn't know what an "angelversary" was or realize that there can be so many triggers. I still struggle with telling new friends about Julia. Thinking about Julia, though, comes very easily and naturally to me. When taking family photos I am always very aware that she is not with us. Often, we make room for her with a photo or a butterfly or a stuffed bear or even just by leaving an empty space for her. She is loved and missed. 


Capture Your Grief Day 11

Glow in the Woods

This post is about recognizing the person/group/organization that helped me on my journey. I must list my fellow trisomy families. Most of these families I met through online groups. Last summer I was able to meet many families in person at the SOFT (Support Organization for Trisomy) Conference. 
There is an instant connection and sense of community between the trisomy families. The other families share their wisdom and experience. We share our fears and our joys. We celebrate together and mourn together. I'm very thankful for this group!

Some of the families at the SOFT annual picnic and balloon release. 


Capture Your Grief Day 9

Family


Here is our family today. Look closely. You can see Julia in Cohen's eyes and hair. She's in Isaac's smile and Sydney's face. And, of course, we all carry her in our hearts. 


Wednesday, October 7, 2015

Capture Your Grief Day 7

Memory

I remember how precious Sydney and Isaac were with Julia. The tone in their voices, the gentleness in their movements, and the love on their faces made clear how they felt about their sister. She felt the same way about them. She would look around when she heard their voices specifically. She would smile at them more readily than at anyone else. Their love for each other was/is so honest, simple, and pure. I cherish it. 





Tuesday, October 6, 2015

Capture Your Grief Day 5

Empathy


My dear friend, lifeline, and fellow trisomy mom. Knowing you are not alone is so powerful. Patricia entered my life with her darling Isabella soon after Julia passed away and she has been a constant for me ever since that winter day in February. Although many miles now separate us, we hold our friendship as a treasured gift from our daughters. 

Friday, October 2, 2015

Capture Your Grief Day 2

Intention 

In honor of Julia, I intend to be more open and vulnerable about Julia's life and this journey with new friends and with new communities of people. 
I met a new friend at another friend's birthday dinner recently and somehow knew I should tell her about Julia. As soon as I did, she shared with me that a couple of months before she had a son born still. This is still new for her and she is learning how to live with this new reality. She is a strong, smart, amazing person who I am now blessed to call my friend. Julia's life keeps giving...

Thursday, October 1, 2015

Capture Your Grief Day 1

Sunrise...


Sunrise
Duck, NC 
August 2015

I spent many many hours thinking about Julia on the beaches of the Outer Banks over the last five years. I planned for her, carried her, prayed for her, cried for her, hoped for her, loved her, gave thanks for her, grieved for her, missed her, remembered her. I search for seashells and think of her. I write her name in the sand. I see butterflies and dolphins and rainbows on the beach and think of her. I see her in the faces of her siblings. We all carry her with us. 



Wednesday, March 18, 2015

Trisomy 18 Awareness Day 2015: 18 Things You Should Know



March 18 is Trisomy 18 Awareness Day. In recognition of this day each year, I share a list I compiled of "18 things I think everyone should know about Trisomy 18".

1. Trisomy 18 is also known as Edwards Syndrome.

2. The incidence of trisomy 18 is approximately 1 in 5000 live births. This does not include babies who were miscarried early or born still.

3. There are three types of trisomy 18: full, mosaic, and partial. In full T18, every cell contains a third copy of chromosome 18. In mosaic T18, only some of the cells contain an extra 18th chromosome. In partial T18, only a part of an extra chromosome 18 is present instead of the entire chromosome.

4. Having a child with trisomy 18 occurs more often in older mothers but can also happen to younger mothers.

5. Trisomy 18 is diagnosed in utero by chorionic villus sampling and amniocentesis, both of which are invasive tests and carry a small risk of miscarriage. Blood tests (Harmony, MaterniT21, Panorama) are also available to test for trisomy 18 as early as 9 weeks. These blood tests should be followed by CVS or amniocentesis if a positive result is received.

6. 99% of families with a child living with trisomy 18 describe them as happy!

7. 90% of babies with trisomy 18 have a heart defect. More and more babies and kids with T18 are successfully undergoing heart surgery!

8. Girls with T18 are more likely to survive than boys with T18, but there are some strong survivors out there -- both boys and girls!

9. Some babies and children with T18 can eat orally but most require a feeding tube. Some are fed both ways.

10. Every child with T18 is unique as T18 can affect the body in many different ways.

11. Babies and children with trisomy 18 have beautiful smiles!

12. The oldest living person with trisomy 18 currently (that I can find) is in her thirties!

13. Babies and children with T18 experience significant physical and cognitive disabilities but can learn new skills and interact with others.

14. Approximately 10% of babies born with T18 will reach their first birthday.

15. All babies and children with T18 are special.

16. Parenting a child with T18 is challenging in many ways, but it is also full of unique blessings.

17. Babies and children with T18 are adored by their siblings.

18. Life is a precious gift, including life with T18.

Our Julia was diagnosed with T18 on her second day of life.  We are very blessed to have had 382 very special days together. We miss her every single day and are honored to be her family forever.

Tuesday, March 17, 2015

A Rare Gift




This is a gift that leaves me speechless. My friend, L, created this portrait of Julia from one of my favorite photographs. L drew this portrait using colored pencils which is just amazing! I love it so much.