Downs Index

Timothy's Story

by Becky and Timothy Rubke

Part 1

Becky speaking:

Timothy was conceived because Michael had just started all-day Kindergarten. We felt that the house was quite empty. We decided that we needed one more child to fill our house.

Timothy will now tell his story.

My family knew I was on my way when Mom woke up in the middle of the night with real night sickness. It happened two nights in a row. She knew then that she was about two weeks pregnant. She always knew about these things at about two weeks. She knew she was pregnant at two weeks with all the other four children (one did not live).

What a story I gave them to tell about me. The rest of the story began (the day of arrival) when Mom woke up in the middle of the night at about 9 months. She couldn't lay down, she couldn't sit down, she couldn't even stand up. Walking was even difficult. She knew she was in hard labor. Dad later said that he knew it was time for the hospital because Mom was making wild-eyed looks at him. Dad took us to the hospital for the big event.

I was born in Catawba Memorial Hospital in Hickory, North Carolina. The doctor just happened to be in the hospital. He was in a hurry to get me here. He had others waiting for him as well. I will leave a few nitty gritty details out here. As soon as Dr. Miller delivered me I immediately turned a deep dusky purple. I stopped breathing a couple of times. Mom wasn't even allowed to hold me, and Dad wasn't allowed either. I was placed in a warmer beside my Mother's bed. I was given blow-by oxygen. I held my breath several times. The nurses watched me to make sure that I wouldn't make a habit of this. After about six hours, Mom was finally allowed to hold me. I was placed in the Intensive Care Unit. Mom was only allowed to hold me when she was trying to nurse me. Family centered care was available and on the second day I was allowed to room in with my family. My brothers and sister were allowed to visit me on the second day in the hospital. Grandpa got to hold me on the second day and sang really old love songs to me. He was 77 at the time. Grandma Myrtle was really upset because for some reason she was taking care of my siblings at home and didn't get to hold me for several days. She also wanted to be in the delivery room with Mom and that didn't work out either. I did however have to stay in the nursery at night so that I could be watched carefully.

I was a really stubborn baby. I didn't want to nurse but Mom wanted me to. Mom didn't want to give me bottles. but I had other ideas. Mom finally decided that the reason I preferred a bottle was because I had very low muscle tone in my mouth and I didn't have the strength or ability to suck hard enough to get enough nourishment to gain weight. As a result, for a few weeks I was diagnosed as having "failure to thrive". Mother would have to give up the idea of nursing me and allow me to get my nutrition from a bottle instead. It was difficult at first for her to get used to the idea. She eventually learned that I am an individual and will always do things in my own way.

Getting back to my birth: as soon as the nurses saw me they immediately asked the doctor how old my Mother was. Both said that she was 39 years old. Mom figured, "What difference did that make?" The doctor and nurses suspected that I had Down Syndrome. They immediately called my Pediatrician to come and evaluate me. The nurses asked Mom a gazillion questions. Some were about my curved pinky fingers. (like my Dad and brothers had). Another had to do with the single or (Simian Crease) in my palms. Mom had no answer for that question. Another question had to do with my webbed toes. My Grandpa Fletcher had a similar situation. The questions ultimately came down to a Chromasome Karyotype to see if I had any defects. After three weeks of intense waiting the results came back that I did indeed have Down Syndrome. In this day and age it is wonderful to know that this diagnosis is no longer a death sentence. I would be ok.

At first there was no time for Mom and Dad to be glad that I was here. There were too many unanswered questions. When they finally got to look at me, they realized what a beautiful gift they had received in me. They could then enjoy me as their wonderful newborn. I came in with a bang, not a whimper.

These are the events of my early days and months:

Mom soon found out that I liked to be rocked and looked at. I didn't suck very hard at all. I slept through the night at one week of age. Mother's touch calmed me at one month. At 2 months I was active and easily disturbed. I loved when my father talked to me at about two months. I responded by becoming calm when my Grandpa Fletcher sang to me on the first day. I loved friendly smiles and cooed back at two months.

When I was 8 days old, I went to church with my family for my baptism. Since Dad is a pastor, he had the joy of baptizing me. Mom was pretty proud too.

I slept in my carriage or car seat for many months. I slept very close to my mother's side. My sister Rachel and my brothers Jonathan and Michael didn't like to hear me cry and begged Mom to keep me happy. Guess what! I became a spoiled little boy. My sister and brothers did everything for me. I had it made.

I guess my mom will have to fill in some of the gaps because now I am 10 and doing very well. She will try to fill in more details later.

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