Prior to having a child one of my big concerns was how to care for a baby or child while being sick and needing a tune up. After Kay was born this was even more of a concern as I realized how much work was involved in caring for a baby. After catching the flu and becoming sicker than I have ever been in my life I now know exactly what it is life to mother while CF sick. I thought I would share my experiences on mothering while ill.
When my sickness progressed from feeling bad to having fevers, shaking violently, feeling completely fatigued to the point that going down the hall (in our small home) was too much effort I was terrified that I would not be able to care for Kaylee. But I was her mother, that was my job and I was going to whatever I could to care for her. I popped asprin and did my best at being a somewhat happy engaging mother. I closed us in her baby-proofed nursery so that I could lay and watch her knowing she would be safe no matter what she got into. I put her in her jumperoo and watched from the couch clapping and pretending to be excited with each jump. This seemed to work well...for a little while.
I then found myself laying in bed with a baby crawling all over me. The baby did not have a diaper because I couldn't muster up the energy to go to the dryer and get her clean diapers. I called my mom sobbing. At that point I realized that mothering while ill is not always possible. For the next two weeks whenever my husband went to work either my mom, dad, or sister would come to my house. I slept mostly, but even when I had the energy to be in the room with them I found that I could only lay on the couch and watch. I distinctly remember the feeling of helplessness when my sister was over and Kaylee crawled out of the room down the hall. My sister jumped up and went to get her and I was laying on the couch realizing that if my sister wasn't here there was no way I would have been able to get Kaylee. My energy was non-existent.
The hardest part of trying to be a mother while sick was giving up my precious baby time. Knowing that Kaylee will likely be my only baby I have always been selfish with her (just ask my family). I want to spend every minute with her and hate sharing her with others for too long. Giving up an entire two weeks of my baby's life felt like torture. I found myself feeling cheated out of my daughters 8th month of life since I was sick to some degree for all of it. I felt like a bad mother in that besides nursing her and sleeping with her I was hardly present and when I was I was not myself. I have to say that during this week co-sleeping was what saved me. I was able to spend at least 13 hours a day snuggled to my baby, breathing her in, holding her close so even though I missed her with every fiber of my being during the day I was able to reconnect at night.
The emotional toll of mothering while ill far outweighs the physical toll, but I have now learned that sometimes it is okay to say, "I can't do it." CFers are strong people and we often try to power through since being sick is something we do well, but being sick and being in charge of another human being can be a herculean task and sometimes it is okay to let go and ask for help. I had family step in and care for Kaylee and friends delivered food. I have no idea how I would have survived the flu without them. And of course, my husband was a hero getting home from work at 2am only to wake with Kaylee at 6:30am. They say it takes a village and a village is exactly what a CF mama needs at times!