I sit on the floor with a dripping, wet washcloth in my hands. I pick it up and rub it all over her tiny, newborn face. She doesn't move an inch. I strip her down to a diaper. I rub the washcloth everywhere. Still nothing. I put my ears next to her mouth to make sure she is still breathing. I collapse in tears. If I don't figure out how to wake this baby, she is going to starve to death. A mother should be able to feed her child. If I cannot even feed her, how am I going to deal with anything else?
I have never felt more alone. My husband is still in shock. We have only been home with her for 24 hours. She refuses me every time I try to nurse her. She latches for a minute but then cries in frustration. My breasts begin to leak all over. It's been 6 hours since she has eaten anything. I will try one more time before I pump again. I put her in the bath. I wipe her down, but her eyes remain closed. I will have to lay her back down and pump.
I place the baby back in the bassinet and pour myself a giant glass of water. I turn on the pump and reach for my phone. There is a message on my Facebook. It starts, "Our kids typically sleep 21 hours a day the first week of their life and it is very normal for them to lose weight. It will get better. In the meantime, try the following tricks...." This is a message from another mom in the Down Syndrome community. Why hadn't my pediatrician mentioned this? He probably didn't know. I was starting to realize how much I would need to seek outside help.
A couple months later, I found myself with my now 9-week old daughter at our local Down Syndrome clinic. I asked the doctor if it was still possible for her to breastfeed. At the time, I was exclusively pumping. He said, "Our kids can take some time to get strong enough to latch, but it's entirely possible."
I began to notice a pattern. Everyone in the community kept referring to my daughter as one of their kids. I was recently at a retreat for mothers with children with Down syndrome. I walked down the hallway listening in on some of the breakout sessions. Every instructor used the same phrasing.
"Our kids can take more time to speak and that is why sign language can be a very useful tool."
"Our kids can benefit from a college savings loan too."
"Our kids are emotionally intelligent, and that is just as important as intellectual intelligence."
Meeting another person who belongs to this life creates an instant connection. We are all raising "our kids" in this world. We want to change it for them. We want to assist each other on this journey.
The feelings of isolation I had when my daughter was born quickly dissipated as I became acclimated with this community. Although my close friends and family could not relate to my new life, it didn't take long for me to realize that I had a new army holding me up. It was an entire army of advocates and they would do anything for my kid. They would teach me how to be courageous. They would teach me how to shout her worth.
My life has been enriched by these families. It is a gift to belong to something so special. Not everyone gets to experience the pure joy that our kids have brought into our world. Don’t feel sorry for us. Our kids have an army behind them, and we are the lucky few.
If you are part of the Down syndrome community in any way let us know in the comments below! We would love to hear from you, and your connection!
About the Author:
Shannon is Mom to two beautiful girls that have forever changed her life. Haley is an active kindergartner that keeps her on her toes and makes her laugh all day long. Sienna is her smiling baby girl who happens to have an extra copy of her 21st chromosome. When Sienna was born, they were completely unprepared for her Down syndrome diagnosis. The first years of her life have been full of learning and acceptance. Before Sienna entered their lives, Shannon suffered through four miscarriages and dealt with the challenges of Asherman’s syndrome. The past few years have taught her that you can’t plan your life. You can’t spend your life mourning how you thought it would turn out. You have to be grateful for what you’ve got. Shortly after Sienna was born, Haley came home from school and shared an expression her teacher had taught her. You get what you get and you don’t get upset. Shannon said, “Haley, that’s a great motto. Your teacher sounds smart.” Haley agreed and started to stroke her little sister’s cheek. She turned to her mom and said, “You get what you get and I love this baby we got.” At the time, Shannon was still pretty emotional and couldn’t believe that something so profound had come from her then 3 year old. Inspired by her wisdom came the inspiration for the blog, This Life We Got.
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