Jayme

Written March 2019

After a healthy and uncomplicated pregnancy, Jayme Lynn Fummerton was born on September 24, 1984.  She was 3 weeks early and came in at 6lb. 3oz.  In the delivery room, my husband, Mick, noticed how “cute and short” her thumbs were.  When the nurses and OB doctor looked at them, they whisked her away to “give her a thorough exam”.  That was the beginning of our journey into the unknown.

After giving her a thorough exam, the pediatrician informed us that he thought she had a syndrome but was unable to give us a full diagnosis or even identify “the syndrome” with any certainty.  He suspected Rubenstein-Taybi Syndrome, but it was rare and he had not seen any children with it himself.  A final diagnosis would have to come later from a geneticist. 

With all of this uncertainty came the crashing down of all the dreams I had for her before she was born.  I didn’t know how to pick up all the pieces, and the ones I did pick up didn’t seem to fit together anymore.  It was a time of depression and grieving that only my family got me through.  Jayme was an adorable but incredibly difficult infant.  She cried most of the time, and my husband and I spent hours walking and bouncing with her.  We would pass her back and forth when we were too exhausted to carry on- all day and all night.  This lasted for 2 months when changes to her diet finally made a difference.

As she got older, delays in her development started to appear and we were referred to our local Early Intervention Program.  Here, they showed us how to work with her to improve her muscle strength and encourage her.  They also provided us with support and encouragement for her future.  At 7 months old, we finally got a concrete diagnosis- Rubenstein Taybi Syndrome.  By that time, the label really didn’t matter, though.  We had absolutely fallen in love with this little girl that was beginning to teach us about patience and unconditional love.  Once we got past the first 2 months, Jayme became the happiest baby one could hope for.  Her smile was (and still is) contagious and she warms the heart of everyone she meets.

School provided some challenges and a chance for advocacy!  She was initially in a “class for special ed kids” also known as a self-contained classroom.  Her educational needs were being met, but she was not given the opportunity to socialize with her normal peers.  By the end of elementary school, we realized that she had never been asked over for a play date or invited to a birthday party like her 2 younger siblings had.  That’s when I learned how to advocate!  Inclusion wasn’t a thing back then and I got resistance from the school.  I knew of a school in the next district that was much smaller and more inclusive, so we had her transferred.   Being with peers was not only beneficial to her, but to the other students as well who all loved Jayme and were eager to include her in many things.

Fast forward to Jayme as an adult…..  She is now 34 years old.  She graduated High School with a modified diploma, walked at graduation with her peers, has a paying job in our community, and has lived in her own apartment (with a lot of supports) for 7 years.  All things we never dreamed were possible for her UNTIL we learned how to dream!

The journey you have just begun will be filled with many twists and turns, but one thing to remember is YOU ARE NOT ALONE! Although each child that we have been given is a unique blessing, many of us experience similar things and we are here for you!  My words of advice:  Never give up on your child or yourself.  Never limit your child’s abilities. And never hesitate to reach out to another parent!  Together we are stronger!

Mick, Jill, and Jayme Fummerton