How can I explain what my life is like to people who don’t have a child with special medical needs? Is there any way they can even understand? I usually don’t even like trying to explain it, because it seems so daunting and I don’t want to be misunderstood as whining or complaining. I explained before that I really don’t feel like I deserve more kudos because I have a special needs child. If you ask me how I do it, I’ll tell you, “The same way that other parents do - one moment at a time.” And I have lots of support and love. I’m really not complaining. However, there ARE many things about my life and the lives of other parents like me that you might not realize or understand.
For some reason, today I feel the need to give it a try. Maybe because I’m hoping that others will understand, at least a little bit, and that maybe a little bit is better than none. Maybe because I have a friend who lost her special needs baby this week after only eight months of life, and my heart is hurting so much for her because I DO understand (at least a little bit) what life was like for her. And how much her heart is hurting right now. Maybe I’m seeking a small measure of validation. Not for myself so much, but for my friend and the many others like her who are dealing with issues incredibly more serious than we are. For whatever the reasons, here’s my stab at a describing some things from the life of parents of children with special medical needs that you might not realize or have given much thought to before. (Because I’m a list sort of person, I’m putting it in list format, and, by “we,” I mean parents of kids with special medical needs in general, and our family more specifically).
Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sundays.