March is Trisomy Awareness Month. Alas, I have been knowledgeable of Trisomy 18 for close to six years because of the birth of my grandniece Delainey Belle.
In August 2010 my niece shared with us, “My unborn daughter has been diagnosed with Trisomy 18…it is a fatal chromosomal defect…if she makes it to birth she will not live very long. I will be thankful for every moment with Delainey Belle!!!”
Trisomy was a foreign word to all of us, however, too soon did we come to know Trisomy 18 is a genetic chromosomal disorder which occurs in approximately one in every 3000 live births. Most of these babies die before birth and those who do make it to birth typically live only a few days. However, less than 10% of babies live at least one year. There was much sadness learning that my niece’s baby wasn’t expected to live more than one week.
Delainey Belle was born on November 15, 2010. It was a day of joy and celebration of her birth mixed with fear and sadness that she may not be with us for long. However, she came home from the hospital fourteen days after her birth and her days expanded into weeks and her weeks expanded into months.
This little girl couldn’t speak, but you felt her share her soul when she deeply stared into your eyes and felt her love when she reached her little fingers to your cheek to stroke it. Delainey Belle knew how to communicate and share her love.
Delainey’s parents, grandparents, extended family and friends were so thankful that Delainey Belle was a fighter. Her strength and defiance of dealing with her Trisomy 18 condition helped her beat the odds and statistics that were against her.
She was with us for only twenty-three months and one day as she passed on October 16, 2012. But in that short time she touched an extraordinary amount of lives and continues to bless many of us with the precious memories of our times together.
Delainey Belle has taught us the value of life and what is truly important to happiness. She was given love, devotion and commitment from her family and in return she gave us twenty-three joyful, priceless months of enriching our lives with her beautiful spirit.
If you have a loved one that you have lost, grab your laptop or pen and paper and start Keeping Your Memories of that loved one. It is a helpful therapy while you are grieving.
- What legacy did he/she leave?
- What special moments did you share with him/her?