I held a precious baby girl in my arms. So perfect. So soft. My heart pumped love through my veins. A fierce, passionate love that would conquer the world for the baby that slept in my arms. Finally, I thought to myself, I understand God’s unconditional love for me, for there is nothing this child can or cannot do to make stop loving her.
However, it was the birth of my second daughter that shattered my understanding of love, for my new baby girl brought with her a diagnosis of Down syndrome.
And so I held a broken baby in my arms. Her face different, with some of the common physical characteristics of Down syndrome. My heart pumped fear, grief, and shame through my veins. Why God! I challenged Him, Why did you give me a broken baby? Why did you choose me? I have served you faithfully, and I said you could do with my life what you wanted, but this?
My baby also had a broken heart – an ASD and a VSD – and a rare form of jaundice. I felt lost. Lonely. I was the pastor’s wife shaking her fist at God and pleading with Him, “Why me!”
What did this diagnosis mean to our family? Would our life be covered with limitations? What about her big sister, what would it be like for her to have a disabled sibling? And what about all the dreams and hopes we had for our child? They were gone! All of them, part of a crushed dream replaced by questions of our future.
I knew I was supposed to love my baby regardless of her diagnosis. I knew I was supposed to love her unconditionally because I was her mother. I knew I was supposed to trust God and accept His gift, but I couldn’t. Immersed in my own grief and loss, love was nowhere to be found.
In those moments of self-pity, I secretly wished that my sick baby would die. Because her diagnosis was too much for me to handle, and because God surely knew I could never be the parent of a child with special needs.
After Nichole’s two week check-up, the doctor, concerned about Nichole’s coloring and swelling in her abdomen, sent us to the lab for extensive blood work. A few hours later, he called.
“I just got the results back from Nichole’s blood tests. It does appear that my suspicions were right and she has a very serious liver condition called “biliary atresia.” If it is not treated soon, it can be fatal. I have already contacted Mayo clinic and they are waiting for you.”
I struggled to hang up the phone. My hand shaking.
Oh dear Lord. I asked you to take my baby away, and now you are letting me have my way. My baby is going to die.
Guilt and Fear punched me on the face, knocking me down into a heap on the floor where I wailed.
I faced the dark hole I had been living in since Nichole’s birth. It was deep, murky, and tight. It had become a prison. Life happened around me, yet I was stuck. My tears had been so abundant I would soon be covered in my own grief. And it was my despair over what I saw as unfair that would cause me to drown, not my baby, and not her diagnosis. The unending tears blinded me.
In the hole, I stared at my ugly selfishness. Would I be able to stand before the Lord and answer to Him for the lack of love I had for Nichole? Could I live knowing I held back from loving my baby because she was not what I had expected, not what I wanted?
This selfishness was a reflection of my imperfect heart. Nichole, only 2 weeks old, was so beautiful, and she was perfect.
It wasn’t her that was broken, I was. So broken in fact, that I needed Nichole.
It had been easy to love my first born, my perfect child. She met all my expectations; she was everything I always wanted. Was my love really unconditional? Or was my love lacking understanding of what it truly means to love someone not for who they are, or what they do, but simply because of their being.
I pulled myself to my knees. I stretched out my arms to God and declared to Him, with every ounce of strength I had…
“I choose love Lord! I choose love! From this day on, with everything that is within me, I choose love!”
And God pulled me out of the hole and held me in His arms. Because He had chosen unconditional love for me too, His broken child.
A little girl with Down syndrome came to change my life and heart forever. I am madly in love with this girl, smitten, she has me wrapped around her crooked little finger. And she has taught me what it means to love – to really love – unconditionally.
Latest posts by Ellen Stumbo (see all)
- My Child Is a Person, Not Just An Inspiration - October 4, 2017
- Why Women’s Conferences Need to Consider Moms of Kids With Disabilities - September 20, 2017
- Siblings: So Full of Love - August 19, 2016