We were scared, nervous and unsure about adding our sixth child to our family. In a time in our life where we were in major transition and stress this unexpected pregnancy that followed a miscarriage a few months earlier seemed like one more obstacle in the year that lay ahead. My husband and I took a few days to adjust, then our perspective shifted and we were grateful and excited to welcome a little one. We stated with some sarcasm that “this is our final baby” and embraced the gift. Weeks later at a routine sonogram we were given the news that our baby was very likely going to pass inutero, during birth or maybe at best hours to days after birth. In a gut wrenching blow our final baby was deemed “incompatible with life” a “fluke mistake of chromosomal division leading to three of the 18th chromosome”. We took a few days to grieve. The once feared baby was now one we were begging for.
It only took a few days of searching “living with t 18” to learn that children live. Families raise their trisomy 18 children with grace, unconditional love and passion. We were inspired and honored to love, raise and find care for our child. From that point on we never looked back. We created extensive care plans that helped us navigate the unfair care for t 18 in our state. We left the state when our baby was 6 weeks old. We flew to Omaha Nebraska where she had full heart repair and lived!!! Rose is now 18 months. She is our sweet, silly, beautiful girl who has taught us we are strong, God did not make her as a “fluke” and he has a mighty plan for her life.
Swimming, playing with her four brothers and dancing with her big teenager sister, Rose loves life and we love her!
Trisomy 18 is a part of her life and she has unique needs as compared to her siblings and “typical” peers. We find joy in tending to her needs. It is challenging sometimes and rewarding all the time! she is thriving!
For anyone curious if a life in which one can’t walk, talk, hear, needs breathing assistance at times and is tube fed can be a good life? A life worthy of living?
The answer is,
Life is beautiful for Rose and to be her mother is a true blessing. We are so grateful for our very special baby girl. We will always speak love and life, and always see the gift that she is!!
Written by Rose’s mom, Meri.
“’Trisomy 18.’ ‘Incompatible with life.’ I think back to the day those words shook my pregnant body to the core and crushed the deepest parts of my soul. I quickly went to Google searching for hope. Instead, I found none. I closed my web browser feeling worse than when I opened it. I didn’t understand how the baby so full of life within me could be THAT sick. I didn’t understand how she was so beautiful in her ultrasounds, yet the doctors would only tell me about how ‘scary’ she would look.