View the Guestbook

In the Beginning

The Early Years

This section is a collection of articles I wrote during the first five years of my children’s lives. They were written with a great deal of unsophisticated and primitive feelings and lots of pain. They do contain a great deal of honesty, though.

During the time I was writing them, they helped me a great deal.  I was able to express through my writing many of the things I dared not say aloud at that time. So many people thought I was teetering on the edge during those early years.  I could just see them waiting for me to crack, so I rarely ever expressed the thoughts and feelings that were churning inside me. When I began writing the newsletter for The Family Information Network,  it was the perfect place to air these articles. To my surprise, (and delight) parents and professionals seemed to like them. I believe parents identified with them and it gave professionals a chance to understand more of what parents felt.  I have found through the years that my perception of the world has changed.  The ongoing experience of dealing with children who aren’t typical tends to wear on a person.

The many disappointments we encounter can wear down even the most upbeat of us.

Even though I still believe in miracles, they’re probably not the same type of miracles I believed in ten years ago. Perhaps age has something to do with it too.

My life was fairly uncomplicated before 1976, although you couldn’t have proven it by me. I thought I had the worst life imaginable at the time. My husband and I had spent nearly ten years traveling the path of infertility. We’d done everything short of invitro fertilization, and we would have done that except it was so new and so expensive at that time. We had finally decided to adopt.

After going through the "intrusion" of adoption, we finally got our baby girl. She was 16 months old, didn’t walk, talk, or hold her own bottle. Did we think there was anything wrong with her? Well, there might be a slight delay, but nothing that love wouldn’t fix. And we'd saved up a whole lot of that.

We named her Kimberly and for a brief period, it all seemed rosy. She did make remarkable progress in those first few months. She didn't especially like to be held, but I was bound and determined that she be held. All the stimulation we provided helped. We loved her and she was the center of our world.

Kimberly arrived in November and I got pregnant in January. What could be better? We'd have our ideal family of two. I was elated! But in June my bubble burst-- BIG TIME. Our second daughter arrived at 23 ½ weeks gestation, weighing in at a whopping 1 pound, 2 ounces.

Krystal spent the first six months of her life at Children’s Hospital in Columbus, Ohio. Our life became a bad dream. I honestly don’t know how I survived. I was faced with situations that no-one had or could have prepared me for. Krystal’s first operation was a VP shunt, the second cryotherapy on her left eye to try to stop the retina from detaching and the third to enlarge her airway due to scar tissue caused by the ventilator.

All these in less than five months. I didn’t count all the times they had to put those deep line IVs in either.

When she was finally able to come home, she came with tubes and wires and machines and lots of different medicines. It wasn’t a fun time. Many times I’d feel myself slipping into depression, only to catch myself just as I was about to fall over the edge.  The fear that the insanity that called wouldn’t allow me to come back once it caught me was the only rock I had to anchor myself to. I rarely cried. I never had time to. Between the two kids there wasn’t enough time for much of anything.  During this time, Kimberly began to “blossom” into a terrible two year old. Only her behaviors were more terrible than normal. She was diagnosed with ADHD; she ate glass, she climbed, she broke all things breakable, she had tantrums, she banged her head on the wall. You name it, she did it. I was confined to one room while caring for Krystal, so I couldn’t always see where she was. And it only took Kimberly a very short time to get into things.

Kimberly didn’t get a diagnosis of autism until she was six years old.  It was devastating moment, but it gave me a starting point to go from. Although there didn’t seem to be a set path to follow, we had options to try.  

...a story about the joys & fears of raising unique children