I have been a "Preemie Parent" since January 19, 1995. Since this was not my first child, I realized that Preemie Parenthood is a whole separate world within the world of parenthood itself. In places that have hospitals large enough to have Neonatal Intensive Care Units, the support system for such special needs is often quite public and accessible. However, in more rural communities, parents of premature babies can feel isolated and left to fend for themselves.
I learned first-handedly that the life of a parent of a premature baby is quite different from that of a normal parent. At first, the preemie parent is likely to believe that as soon as the baby is released from the hospital they will be able to join the ranks of normal parenthood. However, after some time has passed, the preemie parent finds that their experiences of parenthood are quite different and much more difficult.
At my daughter's well-baby checkup in October 1995, the doctor said that we should have her evaluated for suspected cerebral palsy. It was then that I knew I needed to see what kinds of support were available to me, although I suspected that there weren't any in my county. I call the Self-Help Clearinghouse listed in the booklet given to me at the hospital but never could get through. I called our county Public Health Department only to find out that other than Public Health and Early Intervention, there was not any other programs in our county. I looked in the yellow pages and called the Healthy Baby Hotline only to be referred back to Public Health. Then I called Parent Care, Inc., which was also listed in the booklet that was given tom e during my stay at Crouse Irving Memorial Hospital in Syracuse, New York. After talking with Sarah Killion, Executive Director, Parent Care, Inc., I decided that her suggestion of a newsletter may be the best way to start a means of support in my county. I began to create my newsletter by simply filling the need that I felt.
I distributed about 20 copies of my premier issue to doctor's offices, Public Health, WIC, Early Intervention, and to my daughter's wonderful special education teacher. These people then, upon my request, made photocopies and distributed them to folks they thought would be interested. Meanwhile, I continued to write down thoughts and ideas for future issues of the newsletter, should it succeed.
In mid January 1996, I purchased a modem to go online so I could file for our Income Tax Refund Electronically. I discovered the Disabilities Forum on Compuserve and posted a message asking for information and ideas for the newsletter. I quickly began to get such information along with requests for the newsletter. Suddenly, it was apparent that I should make the newsletter available nationwide as many parents of preemies were experiencing the same needs as I was.
Editing and publishing Preemie Parent Connection has been a wonderful experience. Not only did I learn a great deal by conducting research to write articles to publish for other families, but I successfully fought the feelings of isolation by reaching out to other families in similar circumstances. I acquired number of wonderful volunteers, both parents and professionals, to help me write articles which also taught me a great deal about our children.
I strongly remember feeling like I was the only person in the world to experience all the emotions tied in with having a prematurely born child. However, I knew I wasn't the only one to experience this and needed to reach out to these other people. When I could not find a way to connect with them, I decided to create one. I urge all parents of preemies to connect with other preemie parents for breaking the feelings of isolation makes a major difference in dealing with the many stresses. Make the connection.
By Sandra M. Peters as published in Preemie Parent Connection, July 1997
I took by son up to school this morning for pre-Kindergarten screening. I was encouraged to let him go on without me if he would go with the teacher. Fortunately, he was a bit shy to begin with so I got to tag along -- but only for the speech and language screening. After that, he was easing up and went on with the next teacher without me. Ahhh, how difficult it was to sit on the side lines while my son was "performing" behind those screens. Was he answering the questions? Was he answering them correctly? Did he KNOW the answers? What WERE they asking him? Was he behaving? Every chance I got, I stretched my neck as much as possible without making my emotional ties too obvious.
Apparently, he did just fine. I was the one who had trouble with the screening! I realized that facing my first-born going off to school, riding a bus, being out of my care for half of every weekday was a move I was making for the good of my child despite all the emotions I would have to deal with in the coming months. I feel as if I am standing at the edge of an olympic-sized swimming pool with my toes curled desperately over the edge. Only I don't know where I am at the pool because I am blind-folded. Perhaps when I dive in I will find myself at the shallow end, but perhaps I will be at the deepest part with unknown obstacles making it more difficult for me to find my way to the surface for a gasp of air. I must dive in, I know this. And I know that doing so will not be half as bad as the anguish I experience as I stand here at the edge contemplating all that I might encounter.
Although our first-born arrived 5 1/2 weeks early, he was perfectly find and I consider him to by normal birth experience and my "normal" baby experience. His sister, on the other hand, was born 10 weeks prematurely and hospitalized for 9 weeks with all the typical preemie problems. She was preliminarily diagnosed with cerebral palsy when she was 10 months old and has been receiving Early Intervention Services ever since. When she turns three (in January) she will be eligible to attend a preschool special education center. She could, of course, continue to receive the necessary services in our home, but I believe transitioning her to center-based services would be the best for her. This means that I will put my first-born on the school bus in September and my baby on a school bus come January!!
Although I truly believe that these changes are being made for the good of our children, I realize that it is also going to be the closing of a chapter for me. I look forward to relinquishing some of my very busy role of Teacher/PT.OT/SI and more intensely assuming the sole role of mother. It is time that I trust others to enrich my children with their skills, talents, and personalities. By doing so, I will be able to introduce them to a more complete "Mommy". I give 100% to my children and I am anxious to continue this in new ways. I look forward to baking double batches of cookies for snack time and packing lunches. I look forward to supplying each child with two wardrobes -- school clothes and play clothes. I look forward to asking about their day and telling them about mine.
As I look back on my four years of motherhood, I see just how much I have been able to adapt. It started with the sleepless nights and progressed to figuring out how to transition from baby food to table food. I learned how to perform yard chores while chasing a toddler and how to juggle appointments and work schedules. Then I dealt with having survived the horrific first year with our true preemie and have adjusted emotionally to our world in which there are people with disabilities -- our daughter is one of those people. And now, even though I admit to having my toes intensely curled tot he edge of that swimming pool, I know I will find the strength and courage to let them go -- just a bit. I also know that on that first day of school, I will wave to that school bus desperately trying to see through the tears.
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