He Takes My Heart With Him

A New Journey

We took our little boy home, tucked snugly in his car seat. I worried about him the whole way. Worried that it was bad for him to be in a semi-upright position. Worried that the car seat was too hard on his incision. Worried that we wouldn't be able to take care of him the right way. I was so glad to be going home, but scared. I had felt safe in the hospital. The nurses and the monitors and the doctors all doing their job of keeping Jack safe and healthy. Now, it was just us. And, even though he was our fourth child, I had never felt so inadequate. The car ride only took about ten minutes. I cried at least half of it.

Once at home, everything blessedly fell into place. Jack fit perfectly into our family and was such a good baby. He slept good and nursed great. He was happy and content and was waited on hand and foot by the people around him. His sisters ran to get his pacifier with every little squeak he made. His brother, after ignoring him for the first couple of days, would stand by the rocking chair and gently rub his head while he nursed. One of the first words our older son said, at 18 months old, was "Jack." Our family was complete and whole and happy. God had taken us through this experience and had blessed us with this gift, this precious life, our youngest son.

Two weeks later, we got another telephone call.

A nurse from the pediatric surgeon's office was on the phone. She told us the mass was not a saccrocogheal teratoma. The pathology report had come back and the mass had neural cells in it. This, combined with the path they had found that had connected the mass to Jack's spinal column, made it a myleomeningecele. What? I told her I didn't even know what that was. She explained that the spinal cord had not closed correctly and that a path had formed from the spinal cord to Jack's back. She spoke confidently and carelessly.

My head was spinning and I simply said, "Okay," into the phone. She asked if I had any questions and I told her no. I didn't even know what she was talking about; how could I have any questions?

I hung up and went downstairs to the computer. I typed in various spellings of myleomeningecele until I found it. Spina Bifida came up. I scanned through the search results, continuing to see spina bifida. Haltingly, I picked a site and began to read.

Spina bifida has varying degrees of severity. I read through the descriptions until I came to the word I was looking for. Myleomeningecele was the most severe form of spina bifida. My mind tried to understand this new information while my heart screamed "no." I ached and I hurt and I felt broken. My little Jack. My little guy upstairs had spina bifida? I stumbled through the rest of the article. Fluid on the brain, paralysis, bladder and bowel problems, possible mental delays.

I turned off the computer and found my way upstairs. I called my husband at work and he couldn't understand me as I tried to talk through my choking sobs. "Spina bifida. Jack has spina bifida." I gasped and clawed my way through it. The cries forced their way out of my chest and heaved their way through my body. I cried in a way that it felt it would never stop. My husband told me to wait and he would call the surgeon's office and find out exactly what was going on. He sounded worried and angry. He told me to wait and he would call me back.

So, I went to Jack's crib and looked down at him as he slept. And the sobs were now quieter, wracking their way out of my open mouth in gushes of air. I touched his face and I prayed. With open eyes and a wounded heart, I prayed. And I felt my Lord's arms around me, holding me, as I waited for the phone to ring.