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

Saturday, March 18, 2017

T18 Awareness Day 2017





It's Trisomy 18 Awareness Day! March is Trisomy Awareness Month and 3/18 - for 3 copies of chromosome 18 - is  for Trisomy 18 Awareness. In addition to the posts  "18 Things You Should Know about Trisomy 18" and "Why Trisomy Awareness Matters" from the last two T18 Awareness Days, this year I wanted to add ways to support families you may know or meet who are living with trisomy 18. 


3 Ways to Support Families Living with Trisomy 18:

1. Reach out. Check in. Call. Text. Visit (except during cold and flu season 😷). Caring for a loved one with a medically fragile condition such as trisomy 18 can be stressful and isolating.  Encouraging words and gestures are very appreciated.

2. Donate to organizations that support the trisomy 18 community such as SOFT (www.trisomy.org). SOFT is a tremendous resource for information about trisomy 18 and what to expect when caring for a child with trisomy 18. SOFT hosts an annual conference for families affected by trisomy which is the largest rare trisomy gathering worldwide. My family attended the conference in 2014, and we were fortunate to meet with families from this supportive community in person after having met online. We look forward to attending again in the future.

3. Support funding for Medicaid and oppose legislation that cuts Medicaid. Medicaid provides primary or secondary healthcare for people with disabilities, including trisomy 18. Cuts to Medicaid hurt many individuals and families, especially those with disabilities and medically fragile conditions.

Thank you for learning more about and supporting the T18 community!



Friday, March 18, 2016

Why Trisomy Awareness Matters




March is Trisomy Awareness Month, and today, 3/18, is Trisomy 18 awareness day. 

Trisomy 18, also called Edwards syndrome, is a chromosomal abnormality. 
A "trisomy" means that the baby has an extra chromosome in some or all of the body's cells. In the case of trisomy 18, the baby has three copies of chromosome 18. This can cause many of the baby's organs to develop in an abnormal way which leads to various health complications.  Trisomy 18 is the second most common type of trisomy syndrome, after trisomy 21 (Down syndrome). About 1 in every 5,000 babies is born with trisomy 18. As of now there is no cure for trisomy 18. Treatment for trisomy 18 consists of supportive medical care to provide the child with the best quality of life possible.
Since there is no cure and no way to prevent trisomy 18 from occurring, why do we seek to increase awareness? As a trisomy parent, I want to share three reasons why trisomy awareness matters.

First, awareness is important to show that we are not alone. Wherever you are as a trisomy parent or family member, someone else is walking that same path. Trisomy 18 is an overwhelming and little known diagnosis, and it is easy to feel isolated. Most of us do not know anyone else with this diagnosis when we receive it. Where do we turn for advice when even our doctors and nurses have seen only a handful of cases, if any? With increased awareness, we can find and turn to a community of people who have been there and who are there. My experience in having a child with trisomy 18 changed dramatically once I found the trisomy community. I was able to connect both in person and online with fellow trisomy parents and trisomy kids.  I found hope, understanding, and resources that bettered my daughter's life and my own. 

The second reason trisomy awareness matters is to increase medical support of the babies, children, and adults who are living with trisomy 18 as well as of the expectant mothers carrying a child with trisomy 18. Life expectancy for babies and children with trisomy 18 is low, with approximately 10% surviving to their first birthday. Because of this, interventions to extend life and improve chances at life such as cardiac surgery, may not be considered or offered. However, with increased knowledge and awareness, a case can be made to a surgeon or physician based on the experiences of other families in this situation. Alone, we struggle to be heard, but together, we have a voice. 

Finally, by raising awareness of trisomy, we can increase understanding of what it is like to live with a medically fragile child, such as those with trisomy 18.  I had no idea what having a medically fragile child really meant until my daughter was born with trisomy 18. There are the many doctor and therapy appointments, the increased worries about even a simple cold, the exhaustion from increased care needs, and the added strain of living with the unknown. However, even with these added difficulties, trisomy families are grateful for the time we have. We rejoice in little things and celebrate every hard earned milestone achieved. We strive to give our child and our entire family a life as full as possible in spite of our limitations. 

Awareness brings community and hope. Awareness brings better medical support. Awareness brings understanding. Thank you for reading this and for increasing awareness. 

For more information about trisomy 18 and for support, see the links below. 



Facebook Groups- these are closed groups that accept parents of a child affected by trisomy:
Rare Trisomy Parents
Trisomy Families
Trisomy Angel Parents 




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.