The Decision to Work or Stay Home

    The decision to work or stay home can be a very difficult one for any parent after the birth of a baby.  It becomes even more difficult when you have a child that requires much extra care.  I know fine women who work and have a child with ichthyosis and I know fine women who stay home and have a child with ichthyosis.  The key is finding what works for your individual situation.  I do plan on returning to work when my son is school-aged.  Right now, for our family, I don't see how it would be possible for both parents to work. 

What we looked at with our decision:

-->one parent must continue working and keep the same health insurance: if you switch insurance, pre-existing condition comes into play and could be financially disastrous

-->care: time consuming and labor intensive (skin care & extra cleaning).  CNA care or a private babysitter willing to complete extra care were our only options

-->paperwork/phone calls/etc: I spend as much time as a full time job just navigating insurance and other care-related 'work'

-->chauffer service: We have 3 therapy sessions (previously 4) per week and many doctor's appointments.  My job only allowed one day off per month.  My husband's job only allows one day off per month. Can't fit it all in on two days & if you could...what about our own doctor's appointments & illnesses?  Not every child with ichthyosis needs therapy, but there is a much increased chance.

    I think it is important for each family look at their individual needs.  Having a child with special needs complicates such decisions.  We live a frugal, but comfortable life on one teacher's income.  I do look forward to returning to work where we are more financially stable.