Stories of Perseverance: Emily Carpenter
Mom to: Shiloh(7) & Judah(4)
Briefly describe your experience raising a child with down syndrome and the struggles that they have experienced during their life.
My experience raising a child with Down syndrome the last 7 years has been the most beautiful thing I have ever experienced. With anything beautiful in life, there can be hardship or refinement attached to it, and that is something that we have definitely experienced. Shiloh was born with three large holes in her heart requiring open heart surgery at just 5 months old. As a mother, this was by far the hardest thing I've ever had to endure. Can you imagine handing your tiny 5 month over for a 7-8 hour surgery on one of her major organs? Gut wrenching.
But God. God sustained her. And she is now 7 years old with one of the best heart repairs many of her cardiologists have seen. We've experienced quite a few challenges while raising a child with a disability, but so much more beauty. She is so strong, resilient, determined, and a true force to be reckoned with. She is worth it.
Who or what helped keep you grounded when you initially found out about the diagnosis? What about currently?
Jesus. Jesus has grounded us, provided for us, and sustained us. Being grounded in our faith has not only helped us to stay grounded, but has helped us be better parents for Shiloh and Judah.
How did you balance the needs of your family and yourself while still allowing room for coping with this diagnosis?
We found out about Shiloh's diagnosis when I was around 25 weeks pregnant. While this was a very stressful thing to experience during my first pregnancy, it was a true blessing. We were able to learn, cope and prepare before she entered the world.
What advice would you give to parents in a similar situation (or really any parent who is dealing with uncertain challenges)?
Breathe. Nothing in this life is an accident. Shiloh, and other individuals born with disabilities, are the people God created them to be. Embrace all that they are. Support them. Encourage them. Shout their worth. Their life has value and they have an incredible purpose. Let them shine their light!
What has this experience taught you about resilience?
Whew, everything! Shiloh has been through so much in her short 7 years of life, she is a true warrior and has taught me to never stop fighting - in whatever I am fighting for.
What is something you wish others understood about having a child with down syndrome?
That they are worthy of life. They are people just like you and me. They have feelings. They love to laugh and to be loved for who they are. They want to live life just like you and me. They are worthy.
Update on your kids:
Having a child with a disability has radically changed the trajectory of our family's life in a positive way. There are many bumps along the way, but we learn and grow through them - all of us. We have learned to truly slow down. To embrace the small, mundane, ordinary moments. We've learned to love life in an entirely different way. Her brother will grow up seeing her no different than himself. She helps myself and my husband to hold our children closer.
We thank God for both of our children every day, we don't see her as her disability. We see her as who God created her to be - Shiloh.
