Long Time Coming

“God will meet all your needs according to his glorious riches in Christ Jesus.” Philippians 4:19

In 1958, at the age of 4, my doctor recommended that I be taken to Pittsburg Children’s Hospital to have surgery on my webbed neck. Seems like yesterday. I was in a room by myself, placed in a crib with a top net over it as if I were in a cage, and received shots to put me out for surgery. The next thing I remember was waking up with my parents by my side, wrapped up like a mummy with over 100 stitches in my neck from my shoulders to my head. The wrapping left me with holes for my eyes, nose and mouth however; it was plenty of room to see my dad with a big walking doll for me. The doll was bigger than me!

Later I was placed in another room filled with other children. In 1958 children were placed in a children’s ward with many others. My home was far from the hospital so it was hard for my parents to come visit me. Plus, my mother had to take care of three other children; my siblings.

I quickly made friends with another girl in the ward who had been badly burned. Since we were both dressed up like mummies we didn’t think the other was weird. Her parents were there all the time and visited with me too.

The whole experience was pretty traumatizing to me and my parents as you can imagine. Thank goodness Turner syndrome girls are being treated differently today.

Now at the age of 58 my life is different because of all the wonderful TS ladies that have come into my life. The first TS woman I ever met face-to-face was Amy a year ago. She is such a beautiful person. Then I met Lisa, Jennifer, Martha, Ann, Christine, and of course Lauren and others. I have a TS pen pal in England, Samantha, and two very special little 3 year old TS twin girls. I keep in contact with them and their beautiful mom, Erin.  I love them all! I’m so grateful to the good Lord for placing these people in my life.

I attended my first Turner Syndrome Society of the United States Conference in Dallas, Texas last summer and met so many more TS women. It was an awesome experience!  I met Deborah Rios and Debbie Browne. They both work endlessly for Turner syndrome and Deborah’s husband, Jimmy.

God has blessed me so much to let these ones come into my life after growing up not knowing anyone else with TS. What a blessing it has been to have a chance to meet and know so many even though it took a while to find them this late date in time.

Bonnie Rubis

East Brady, PA

 

Bonnie at the TSSUS Conference in Dallas, Texas summer of 2013.