"Few wishes come true by themselves."
-June Smith
"Far away there in the sunshine
are my highest aspirations
I may not reach them,
but I can look up and
see their beauty,
believe in them,
and try to follow them."
-unknown
(This letter is written for the friends and family of parents who has given birth to a premature baby. It was based on a wish list from the Atlanta Chapter of Compassionate Friends, an infant loss support group.)
What do parents wish others understood about the birth of their premature baby?
"1. I wish you would not be afraid to speak my child's name and talk of him without the tone of sympathy, sorrow and pity in your voice. My child lives and is important and I need to celebrate his existence.
"2. If I cry or get emotional when we talk about my child, I wish you knew that it isn't because you have hurt me; the fact that my child is struggling and is not quite perfect has caused me tears. You have allowed me to cry and I thank you. Crying and emotional outburst are healing.
"3. I wish you would recognize my child's birth with your words and actions and not center on his chance for survival, disabilities and a "normal" life.
"4. I will have emotional highs and lows, ups and downs. I wish you wouldn't think that if I have a good day my pain is all over, or that if I have a bad day I need psychiatric counseling.
"5. I wish you knew that the birth of a preemie is different from other pregancies and births and must be treated differently. It is tragedy and celebration, fear and joy, gain and loss, among so many other things. I wish you wouldn't compare it to your pregnancy, or the sickness of a parent, a spouse or a child.
"6. Being a premature parent is not contagious, so I wish you wouldn't shy away from me and my baby.
"7. I wish you knew that all of the 'crazy' grief reactions I am having are in fact very normal. Depression, anger, frustration, hopelessness,
and the questioning of values and beliefs are to be expected following the birth of a premature baby.
"8. I wish you wouldn't expect my pain and healing to be over in six months. The first year is going to be very hard for us. I will be raising a child whose early life is very different from fullterm babies. I will be coming to terms with many emotions. I will be mourning many losses, even though I gained a beautiful baby. As with alcoholics, I will never be 'cured' or a 'former preemie parent', but will forevermore be parent to a preemie.
"9. I wish you understood the physical reactions to the pain of emotions, such as the ones I feel now. I may gain or lose weight, sleep all the time or not at all, develop a host of illnesses and be accident prone, all of which may be related to my emotions.
"10. Our child's birthday, his due date and homecomings and those anniversaries are important times for us. We may celebrate, but also mourn and relive the pain. I wish you could tell us that you understand that we are dealing with lots of tough emotions. Don't try to coerce us into being cheerful, even though that is what is expected.
"11. It is normal and good that most of us reexamine our faith, values and beliefs after a preterm birth. We question things we have been taught all our lives and hopefully come to some new understanding with our God. I wish if I am one who must tangle with my religion, you would let
me do so without feeling guilty.
"12. I wish you would not offer me drinks or drugs. These are just temporary crutches, and the only way I can get through this process of healing is to experience it. I have to hurt before I can heal. If I need help from counselors and anti-depressants, please help me get it.
"13. I wish you understood that having a premature baby changes people. I am not the
same person I was the moment before my child arrived and never will be that person again. If you keep waiting for me to 'get back to my old self',
you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values and beliefs. Please try to get to know the new me---maybe you will like me still."
with love,
from a preemie parent
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