This past Sunday I reflected on where we were one year ago... that day might have been (officially?) the worst day of my life. After a stressful couple of days, we got Lucy's diagnosis of Trisomy 13 and very quickly learned that her condition was "not compatible with life" (even as she still lived and breathed before us). It slowly sank in that I could have lost her at any moment I was pregnant with her. I've said it before, and I'll say it again... I'm SO thankful God let me meet and know her.
Sunday was a rough, rough day for me emotionally. I had prepared & braced myself for Lucy's birthday last week but I had not thought a lot about the diagnosis day. And it hurt. I just kept thinking "I'm so sorry, Lucy. I'm so sorry there was nothing I could do."
I found an article yesterday that I want to share. It is written by Dr. Keith Barrington, a Neonatal Doctor who has some advice for doctors & medical staff handling these kinds of Trisomy 13 or 18 diagnoses. We were so thankful to have the care that we did... a doctor who prayed with us and provided comfort, nurses who cared for our little girl and smiled genuine (yet pained) smiles when they saw us. Those people made it clear that our daughter mattered. Many families with trisomy children have NOT gotten this kind of care and love from the medical professionals they have encountered, and it's disturbing to me. They have even had people refer to their baby as a "T-13" baby and not use the baby's name. I'm thankful for Dr. Barrington (who wrote this article, "Our children are not a diagnosis") and I think he delivers sound advice to other Neonatal doctors and caretakers.
These Trisomy babies are absolute blessings to their families, and I am here to say that I wouldn't trade my "T-13" baby for any other baby in the whole wide world. The love that Lucy has taught us is helping us to impact others.
Yesterday was of course an emotional day, too. Exactly one year ago, Lucy went to be with Jesus. Yet, I think back and remember that it was a surprisingly peaceful moment in my life. Time stood completely still, and the world was perfectly quiet.
We held her, we bathed her, we made her foot imprints and snuggled her "one last time" before we left the hospital. I remember looking at her body and thinking, "She's not there anymore. She's somewhere better." I'll never forget walking out of the hospital the morning that Lucy died into the sticky July heat. I felt like the air was closing in around us, suffocating us. We drove home during morning traffic. I saw the people on their way to grab coffee, or heading into work and thought, "For these people it's just another day." For me, everything looked different. Everything felt significantly different. The day was sunny, muggy, sweaty and hot. I suppose I will never forget how it felt. I feel the intense heat sometimes, and that day comes back to me clearly.
I found an article yesterday that I want to share. It is written by Dr. Keith Barrington, a Neonatal Doctor who has some advice for doctors & medical staff handling these kinds of Trisomy 13 or 18 diagnoses. We were so thankful to have the care that we did... a doctor who prayed with us and provided comfort, nurses who cared for our little girl and smiled genuine (yet pained) smiles when they saw us. Those people made it clear that our daughter mattered. Many families with trisomy children have NOT gotten this kind of care and love from the medical professionals they have encountered, and it's disturbing to me. They have even had people refer to their baby as a "T-13" baby and not use the baby's name. I'm thankful for Dr. Barrington (who wrote this article, "Our children are not a diagnosis") and I think he delivers sound advice to other Neonatal doctors and caretakers.
These Trisomy babies are absolute blessings to their families, and I am here to say that I wouldn't trade my "T-13" baby for any other baby in the whole wide world. The love that Lucy has taught us is helping us to impact others.
Yesterday was of course an emotional day, too. Exactly one year ago, Lucy went to be with Jesus. Yet, I think back and remember that it was a surprisingly peaceful moment in my life. Time stood completely still, and the world was perfectly quiet.
We held her, we bathed her, we made her foot imprints and snuggled her "one last time" before we left the hospital. I remember looking at her body and thinking, "She's not there anymore. She's somewhere better." I'll never forget walking out of the hospital the morning that Lucy died into the sticky July heat. I felt like the air was closing in around us, suffocating us. We drove home during morning traffic. I saw the people on their way to grab coffee, or heading into work and thought, "For these people it's just another day." For me, everything looked different. Everything felt significantly different. The day was sunny, muggy, sweaty and hot. I suppose I will never forget how it felt. I feel the intense heat sometimes, and that day comes back to me clearly.
There have been so many memories swirling around in my head lately and I've had a tough time expressing what I'm feeling. It seems like I have second- and third-guessed everything I have done. I know this is another piece of the grief process, and I'm just trying to heal like I need to. Thankful I have connected with other mothers who have been through this too, and I know it will continue to get easier.
2 comments:
Sending you love! You are amazing!
My heart aches reading this post. Our daughter was born on July 25th and went to heaven on the 26th. While you were grieving this day I was celebrating meeting our daughter. She was so strong when she was born, we thought we would have time with her. By the afternoon of the 25th we knew her time was limited. We had known for a few months that she had Trisomy 18, but we still didn't know what the story of her life would be. I relate to you being so grateful to meet your daughter, to learn so much from her life, and to be filled with sadness by your loss.
I know I will enjoy reading your blog. If you have any interest in hearing our story you can go to: www.ourjourneywitht18.blogspot.com
You're family will be in our prayers. Jenni
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