Birth defects, congenital health problems and parenting

To have two children, both of whom are struggling with debilitating health problems is in a word, difficult. To see them in the prime of their lives, fighting to get through each day can be both heart wrenching and frustrating.
As parents we juggle doctor’s and specialists. We might choose jobs based on health insurance. We pay for treatments, prescriptions, co-pays and deductibles. Doctor recommends something not covered by insurance, somehow we come up with the money. We keep going everyday and we do all that we can to encourage our children and provide for them and their future.
Sometimes we can be emotional; we may not share with the world all of our struggles, in fact some may just be too private to share. There may even be times you may look at us and question if we know what we are doing or want to give us advice; please consider though if that will help us in the end. Saying things to us that brings into question our abilities as parents does nothing but tear us down and we may already be wavering on our feet.Yes we know you love us and you mean well; but sometimes all we want and need is for you to tell our children they are in your thoughts and prayers.