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Without hesitation Dr. Duffner declared the good news: “The baby is fine, Jill. She is a carrier, but her enzyme levels are near normal.” Before she could say another word, I interrupted and asked, “Are you sure? Are you sure she’s going to be okay?” As Dr. Duffner continued to reassure me, I started sobbing. After I hung up the phone I walked back toward the cabana where Hunter and my mother were sitting.

I was overjoyed and thankful about the news, but despair and sorrow unfortunately crept in and covered my heart. Why Hunter? Why our only son?

I didn’t want the kids to see me crying, so I quickly pulled myself together before rejoining the family. Confused and overcome by the intense pain and joy of the moment, I was silent when I first sat back down. My mother knew I didn’t want to say anything in front of Hunter. I didn’t want him to feel bad, so I knelt beside him, wrapped him in my arms, and just held him. It was bittersweet. I was so thankful the baby (who turned out to be Camryn) was going to be okay, that she was just a carrier. But at the same time, my heart was crushed all over again for Hunter.

One of my greatest challenges was making time for all three kids. I made every effort to spend as much time as possible with my daughters, but Hunter’s needs often required immediate attention, so inevitably I spent more time with him. I struggled with guilt and fervently prayed that God would help me to balance my time and energy. Even though I did the best I could, it was very hard and emotionally draining.

At least once a month I tried to set aside a special day for each child. We named our special days “Mommy & Erin Day,” “Mommy & Hunter Day,” and “Mommy & Camryn Day.” When it was Mommy & Erin Day, Erin got to choose what we did from start to finish. If she wanted to go to the movies, we went to the movies. If she wanted to go to the playground, we went to the playground. It was her time with Mommy to do whatever her heart desired.

Depending on what was easiest for Hunter, my mother would either take the other two kids to her house, or she would watch them at ours. We did whatever we had to so that each child’s special day was loaded with fun. I looked forward to those days so much. Yet in spite of our efforts to bring some sort of normalcy into our children’s lives, their lives were far from normal.

We tried to include the girls in Hunter’s daily activities and therapies so they understood how to work all his machines and pumps. As a result, many times Erin and Camryn would pretend their baby dolls had Krabbe disease. As apprehensive as I was about letting them use Hunter’s supplies for play, I couldn’t help but encourage them. There was something beautiful, though painful, in watching my daughters mimic what I struggled to do every day.

Their babies were tube-fed and suctioned, just like Hunter, so they needed feeding bags, syringes, and suction machines. I’d tape the end of the feeding bags to their babies’ bellies so they could pretend like they were really giving them food. Rather than using formula, as we did with Hunter, the girls filled their dolls’ bags with water.

They had watched us enough to know exactly what to do with everything, including the oxygen. Although positioning the nasal cannula inside the dolls’ little plastic noses and around their ears was a challenge, we managed. I also let the girls attach oxygen tubing to empty tanks. And while the tanks weren’t that heavy, watching little Camryn strap one over her shoulder and lug it around was humorous and heartwarming.

The girls had hours of fun with their Krabbe babies. I didn’t want to interrupt their playtime, so I’d watch them from a distance and listen.

“What’s your baby’s name?” Erin would ask her sister.

“Her name is Courtney,” Camryn would respond joyfully, “and she’s very sick because she has Krabbe disease.”

“Oh, my daughter has Krabbe, too,” Erin would reply. “When was Courtney diagnosed?”

“Well, we found out that she was sick a couple of weeks ago. What about you?”

“My baby had Krabbe when she was born,” Erin would