On September 30, 2009 my newest niece, Ella Pearl, was born.
Ella was born with a chromosomal defect called Trisomy 18. Only about 5% of babies with Trisomy 18 make it to a live birth. Ella has several heart defects, trouble breathing on her own and a few other challenges associated with this syndrome. Trisomy 18 babies do not have a long life expectancy.
Last week I was thrilled to be able to travel to meet Ella, along with the rest of my siblings and parents. I hope that our visit offered some comfort and support to my brother and his wife during this challenging and exhausting time.
On Wednesday we all met at the Children's Hospital and were brought into a special room to meet and hold Ella. There were two nurses, a hospital pastor, a special photographer, both sets of grandparents, Jason and Megan, and Me, Allyson, Angela and John. My two other nieces and nephew were also in and out of the roomThe room was crowded, but quiet. After we'd all had a chance to hold Ella, my brother gave Ella a father's blessing. It was the sweetest thing I've ever heard.
We left around 12:30pm and Ella was taken off her heart medication and was not expected to live very long. Jason and Megan have kept faithful vigil at the hospital to be with their sweet little girl who will celebrate her 2 week birthday tomorrow.
At times like this I am grateful to know about God's plan for me and for all his children here on Earth. I know that because of Jason and Megan's marriage and sealing in God's holy temple, their family, every member, including Ella, will be together forever.
6 comments:
That was a very touching tribute Afton. My mom has been keeping me updated on Ella's condition. It's so so sad, but like you said, in a hopeful kind of way. I wasn't sure what to do, so I think I'll send Jason and Megan a card just to let them know we're thinking about them.
My heart aches whenever I see someone go through something such as this. How special that must have been. What a sweet name, Ella Pearl. Makes me want to treasure every moment I have with my kids. What a blessing to have the reassurance that your family will be able to be with her again someday.
Your post brought a tear to my eye. Megan and Jason have a amazing family and are amazingly wonderful people. Ella is beautiful.
Thanks Gwen. I passed on your thoughts to Jason and Megan when I was there. I know they will appreciate the card.
Such a young sweet life,... my heart goes out to your family Afton.
Jason and Megan must be extra special to get an extra special baby like Ella.
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