The doctor pocked and prodded Nichole. His forehead scrunched, and through the stethoscope he listened intently at Nichole’s belly. He examined the color of her skin and double-checked the daily blood results piled on his desk. Nichole was only 2 weeks old, and her file was already thicker than anyone else in our family.

“I want to do a blood check. “ He finally said.

“She has had her blood checked every day for 2 weeks!” I complained.

“I know, but those blood tests are only checking for 2 billirubin levels, and although the regular one is going down, the other one is not. I want to do a full liver scan and a CBC test”

“Okay.”

“And I want you to get them done now. I will put a rush on them so we can have the results as soon as possible.”

He noticed the mist in my eyes.

“I don’t want to alarm you, but I can tell there is something wrong with your baby and we are not going to wait and see what happens.”

I liked Dr. Schrodt. I liked him enough to skip the pediatrician and stick with our family doctor. When he walked into the office minutes before, he had  a smile on his face. “She has Down syndrome, just like your good friend’s daughter. Well lucky darn!” Somehow, that comment made me laugh. Now, however, his words were making me cry.

Nichole slept through the needle piercing her skin, sucking blood from her body. I couldn’t watch. I held her tight and looked away, fighting back more tears. Before we left the lab, I made sure that both, Dr. Schrodt and Dr. Chandra, the pediatric cardiologist, would get these new blood counts.

Once we were home, I paced around our dining room table staring at the shaggy green carpet with worry. I was making myself sick. I finally picked up the phone and called the pediatric cardiologist, who acted as a regular pediatrician for all of his cardiac patients as well. I was transferred to his head nurse.

“Ummm, hello” I wasn’t sure what to say. “I just got back from my baby’s 2 week appointment with our general doctor. He seems concerned about my daughter’s billirubin levels.”

“What is your daughter’s name?” She asked impatiently.

“Nichole Stumbo”

There was a pause, then nurse Lynette spoke.

“I have her file right here and she is fine.”

“Could you please double check, our doctor seems concerned about one of the levels.”

“Look honey” she said with what felt like annoyance, “Your baby is fine, I can see that her billirubin levels are coming down. Some moms don’t understand this is normal.”

“Our doctor is concerned. He said that there are 2 levels, and that one of them is not going down as it should. Could you please have doctor Chandra look at those blood tests? And you should also be getting some other blood results soon.” I realized I was not angry at her tone, at the fact that she was patronizing me, or not listening. I was pleading with her. I was begging.

“Sure, I will have him check those.” She said, almost like an afterthought.

“I will call back in a couple of hours.” I said.

I hung up the phone, feeling so small. I had given power to the woman over the phone to make me feel insignificant, to make me feel foolish. I hated those feelings. I didn’t know how to be an advocate for my own child. The child that for the last 2 weeks, I had wished was not mine…or die.

Later that afternoon, while Ellie and Nichole took a nap, the phone rang.

“Hi Ellen, this is Dr, Schrodt”

He never calls. His nurses call.

“Oh, hi” I mumbled.

“I just got the results back from Nichole’s blood tests. It does appear that my suspicions were right and she has a condition called “biliary atresia.” This is very serious. I have already contacted Mayo clinic.”

“Ummm, what does she have?” I was mumbling, my head spinning, not sure I was processing things.

“Biliary atresia”

“What is that? I asked

“It is a very serious liver condition that needs to be treated. If it is not treated soon, this can be fatal.”

“Ummm, give me a second. “ My thought process was scattered, I could not think straight. “Let me write this down” There was a stack of mail on the dining room table, and I used it to jot things down.

“Listen, call your husband and make arrangements to leave tonight, on the mean time, call me if you need anything, I will have word to get you on hold and I will talk to you right away.”

“Thanks, I appreciate that.”

Breathe Ellen.

“How long do you think we will be there?” I asked

“I don’t know” he said, “But I would plan on at least a week.”

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 the green plush carpet. And in a heap, on the floor, 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 what 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. I had been consumed with what Nichole’s diagnosis would mean to me. I was bitter over the loss of my dreams and expectations. I had not stopped to think what the diagnosis would mean to Nichole. Not beyond questioning if she would always live with us, what any medical conditions would come our way, or if she would marry. Even then, those concerns were about me.

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.

I don’t make mistakes.

I was broken, so broken in fact, that I needed Nichole.

She is my own. Will you love her too?

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 love for me too, His broken child.

***

It is Down syndrome awareness month, so I am sharing our story of finding out our daughter had Down syndrome and the first few weeks of her life. If you missed my last post, make sure you read: A parent’s unconditional love, or more than I can handle?

If you just joined in, make sure to read the first post introducing you to this journey: The road less traveled.

Next post: Finding Hope.