Keeping the household functioning

Every family of a child with leukemia needs massive assistance. It is important for families to recognize this early and learn not only to accept aid gracefully but also to ask for help when needed. As discussed earlier in the chapter, most family members, friends, neighbors, and church members want to help, but they need direction from the family on what is helpful but not intrusive.

In families where both parents are employed, decisions must be made about the jobs. It is better, if possible, to use all available sick leave and vacation days prior to deciding whether one parent needs to terminate employment. Parents need to be able to evaluate their financial situation and insurance availability. This requires time and clarity of thought, both in short supply in the weeks following diagnosis.

I was eight months pregnant when my 2-year-old son was diagnosed. I went on maternity leave, but we needed to make arrangements quickly with my husband's employer to allow him time off to care for Carl in the hospital after I had the baby Even worse, I knew that I would need to deliver by caesarian section. Carl's protocol required him to be in the hospital for one week, then home for one week from September through January. My husband worked out a schedule where he worked 70 hours the week that Carl was home, then was off work the week Carl was hospitalized. He then only needed to use ten hours of leave, and was able to stay at the hospital with Carl.

When Garrett got sick, I used up all of my vacation. At that time, our head of Human Resources called me in and informed me that I now had to take unpaid leave if I wanted to stay out of the office any longer. He then added that in order to continue my benefits, I had to pay "my share" of all benefits costs during this leave. This included insurance, retirement, and other contributions. The weekly outlay was not insignificant. I was dismayed to say the least.

Fortunately, our senior management and common sense prevailed. We came to an informal arrangement where I "made up" lost time by working weekends and extended days when Garrett was home and doing okay. When he was inpatient (most of the first year and the first three months of the second), I would stay with him in the hospital on the weekends (Friday night through Sunday evening) and on Tuesday night and all day Wednesday. This would give my wife a break from the hospital and let me spend time with my son.

It worked very well. Pam later calculated that I worked more hours in make-up than I missed for Garrett. The company came out ahead. Every situation is different and every solution will be different in these circumstances. There is only one constant: You will never ever regret the precious time you spent with your child.

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