Topics Of Discussion
wisdom from the Preemie-l e-mail group http://home.vicnet.net.au/~garyh/preemie.htm
|Kerry shares, "Just wanted
to share some info I got from a nursing conference I attended on Fri. It was about the
NICU dad. The info was fair about the dad - they tried to show how it is different for the
dad and how he heals emotionally (usually much faster and easier). But what I wanted to
talk about what something they brought up at the end - developmental delays and parents
First they said parents should be prepared in the NICU to face delays later in development. They should be taught coping skills to help them through this. But... funny part - they mentioned this in only in regards to babies born with concrete disabilities, such as Downs syndrome. Of course I piped up and said that this info needs to be shared with preemie parents, too, regardless of gestation or weight. Had an OT chime in and totally agree. She said the NICU's are sending the kids out and saying "oh yeah they'll catch up, etc etc, have a good life" and never mention things like delays, or even Early Intervention (as we are finding here on preemie-l).
But this is the most interesting part... They are discovering that parents of preemies and parents of children with developmental delays might be experiencing "chronic sorrow". (There are some journal articles I am hunting down on this.) Chronic sorrow, in a nutshell, means that parents come in and out of a sorrowful state, but never resolve it. It is usually triggered by a specific event such as "milestone distress" which is when the child is supposed to be meeting a certain milestone (but doesn't) and this is reinforced in some manner (such as playing with like aged children, or reading a parenting magazine or book, or comparing children). The part that really gets me about this chronic sorrow is the belief that the parents feel they have resolved the issue, but somehow it continually creeps back into their minds and hearts, producing sadness and disappointment, as well as fear, anxiety and worry.
In addition, the speaker shared that chronic sorrow can lead to less than proper coping mechanisms, such as becoming a "super parent" - a parent who is a total expert on their child and anything that could possibly be related to their child. In addition, she felt that parents with chronic sorrow experience guarded hope, where they hope that things will improve, but in the backs of their minds, they continually doubt it...
...I wonder if this theory can account for our constant return to a fearful, saddened and anxious state about our preemie's development in the early years that we constantly see mentioned here on preemie-l. I know I feel this way. I was relieved in a way to hear that there is an actual term for this condition, other than calling myself paranoid, crazy, and obsessed, as well as unhappy with my child, and a demanding mom."
adds, "About Dads-did they say why some or many dads have a quicker and
easier emotional recovery course? I know it is true in our house. I am curious to hear
what some preemie-l dads have to say about this.
Amy reacts, "Thank you so much for sharing this information! What you wrote describes how I feel and react. I can't resolve these feelings, I can't stop comparing even though I try, I just can't shake the feeling that something is really wrong. I put on this facade that everything is ok, Zoe's come so far. I come away with a sick feeling after seeing other kids so much so I try to avoid being around them. This may sound dumb but the fact that there's a term to describe what I'm feeling helps me a lot-I don't feel like such a bad parent. "
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