A Preemie Child
By: Allison Martin, MPA; Preemie-Child Listowner
Preemie-child is a email support listserv for parents of children who were born prematurely and are now 4 years or older. Children who are born very prematurely may continue to have disabilities and/or special needs which require attention as they enter school and society. The mailing list brings together this small (but growing) group of families for support as we learn from each other's experiences.
"How to cope with the desire for your parents to be more interested in the issues confronting your premature child."
We preemie parents, as a whole, tend to be very focused on our children - they absorb immense amounts of our time, energy and emotion. Sometimes we may find that our own parents or other close relatives do not express as much interest and support for our children, and the issues we face, as we would like. This can be frustrating when we desire that special encouragement and interest to come from our own parents (perhaps even to be parenting ourselves a little). We may find that we miss the chance to share important accomplishments and milestones with people we are very close to.
Mara Stein, a clinical psychologist, explains why we may react so strongly to get that special attention:
"You are asking the people who are your flesh and blood to allow themselves to feel a fraction of what you have felt. Some of our most deeply felt needs are for our parents to accurately mirror what we are experiencing. As children, it helps to validate our feelings as real. As adults, it serves much the same function -- particularly when we have to try and try again to broadcast our feelings, experiences, and selves in a format that others are willing to receive and mirror back.
"There is something unique about the understanding and validation of a parent that sets it apart from those of friends. Having a community in which your pain, your joy, your hope and appreciation are shared and accurately understood is healing and comforting. But it isn't the same as getting it from those primary people. It just isn't. And that's what all that effort is about and why it hurts so much when they put their hands over their ears."
Sometimes people just may not be able to provide the emotional response we seek. The experience is just too overwhelming for them. Vicki S. describes why this might be:
"Sometimes when something is just so traumatic, people, even those closest to you, don't have a clue what to say. Words are not adequate to describe the kind of pain, guilt and sorrow that accompanies an ordeal like we've all been through. They know that they feel horrible, so we must feel so much worse. They can not even begin to know how to offer comfort.
"Also many people are uncomfortable with strong emotions, including their own. They may feel that they will cause you more pain by bringing it up, however wrong that may be. The only support they can give is to try to accept and love your child, which is a great gift to the child, even if they never fully understand them."
How can we move forward when our own parents or other close relatives do not express as much interest and support for our children, and the issues we face, as we would like? One way is to work towards acceptance and understanding of others reactions. For example, Sue K. reminds us different people react to problems and events in different ways:
"Try to remember that just because you are not getting the reaction you need doesn't mean they don't care. Maybe the whole situation is too overwhelming for them, even now. Many people have a problem facing mortality - in others and in themselves. Try to let go of your expectations - your family can't give more than they have. They are dealing with the whole experience in the only way they know how to, and, while their methods are different than yours, they are not necessarily wrong - for them!"
In closing, Joanne D. reminds us that others do not have our experiences and understanding,
"In a bit of fairness, I personally didn't have a clue what parents with disabled kids went through until I had Alex and than it was a real eye opener!"
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