In the beginning my answer depended on who asked...
To the store clerk I would say.... "Oh she is doing great. A true miracle!"
To the relative I would say... "She is such a fighter. A true miracle."
To my friend, who has full term children... "She is so strong. She's going to be just fine."
To my husband, when he would call during the day... "She's just laying on the floor screaming. When I try to hug her she scratches her face. I'm exhausted."
It didn't take long for me to realize that she was not one of the "miracles" on television and I became sad. Why did I have a preemie who was not fine? What did I do (or not do) during her early years? Why are all of the other micropreemies OK, and mine is not? I was told that I was having trouble adjusting and my stress was affecting my daughter.
I thought I was alone. Then I found a very small group of other parents who did not have a miracle either. You mean... I am not alone? Your child cried all of the time too? Your child did not talk on time? Your child has severe constipation? Your child has severe sensory issues too? Your child has epilepsy? Reflux too? Sensory integrations dysfunction... that's what it's called?
As I woke up, I became angry. I was angry because I was forced to believe that all preemies are miracles and they turn out fine. After all, they do catch up by age 2, right? Ha!
I began to tell everyone the truth about our life. "How is she doing?" turned into an opportunity to educate the public about the effects of prematurity. I told the store clerk, relatives, friends, other parents in waiting rooms, nurses, doctors, specialists, receptionists in specialists office, parents at the preschool my daughter attended, teachers, neighbors. I was awake and shouting.
Do you want to know what happened? (those of you who are preemie parents may already know)
I was labeled. I became one of the following...
- the parent who wanted the attention because she had a micropreemie
- the parent who could not get over her daughters early birth
- the parent who couldn't accept that their child was fine, despite being a preemie (our daughter really "looks" fine on the outside)
The best one yet....
- the parent who has Munchhausen's (oh yes, it really happened!)
Some of those labels were given to me by preemie parents themselves! Those who were at the beginning of their journey were the hardest on me. I was trying to make it better for *them* (and all who would come after them) by educating everyone. (**let me stop here and say that I am NOT upset with the new preemie parents-I was one of them and treated others the same way)
OK, let me catch my breath.
I went back into hiding and into a deep sleep again.
A few years passed and I was contacted by a large organization who now raises awareness about prematurity. They wanted our daughter to be an ambassador (of our county). Ah ha! My outlet had arrived. Now, when people ask me 'how she is doing', I can tell our story. The whole truth, and people HAD to listen. I started doing interviews for newspapers. The paper would arrive and 1/2 my story was cut. The television interviews... mine never aired. The speeches.... after the first honest one, I was given a fraction of the time to speak. The ambassador that was chosen the following year was only 1 year old. Cute as a button and her parents told of their miracle. I am no longer involved with that organization.
I refuse to go back into hiding again. No more deep sleeping for me.
Yes, my daughter looks "fine" but she is not. Those of you who know her may still label me. I don't care anymore. I dare you to live in her body and mind for a week. You'd come out screaming too!
*I* owe it to the future preemies, and their parents, to be honest.
To the media... are you brave enough to report the truth?
(by the way... you know that small group of parents that I found who validated my experience... it's not so small anymore. And, there are hundreds of other groups where parents are expressing concern about their "miracles")