Guest post by Jodi Myers, RN at NKC Hospital.

An Update

Jodi Myers, Down Syndrome StoryFast forward two years … this month, Carissa turned 27 and now lives independently in her own apartment. Her work at Children’s Mercy Hospital has increased to 35 hours per week. Her boyfriend, Chris, also got a job at CMH and lives on his own in an apartment not far from Carissa. They enjoy the typical things dating people do; taking walks, going out to eat, working out at the local YMCA and going to the library. They love to watch movies and they’re big fans of the Chiefs and Royals. Last Christmas, Chris gave Carissa a promise ring that she never takes off.

Carissa is in charge of pursuing her own dreams and I have been privileged to see them come true. Almost every days she tells me how much she loves her life. What more could a Mom want?

October 2015

Twenty –five years ago this month I became a mom for the first time. This baby was going to be the first grandchild for my husband’s and my parents.  I was a nurse on the 5th floor here at North Kansas City Hospital. There was much excited anticipation for this little one.  Several minutes after she was born there was a whisper to the doctor from the nurse and a look of sadness crossed their faces. I got to hold my baby girl for a moment and then she was taken away for a more thorough exam. Later our pediatrician came into our room and told us that she thought that our new baby had characteristics of Down Syndrome and they were going to do some blood tests to confirm that suspicion. Joy was replaced with fear, doubt, and inconsolable heartache. We hoped that our doctor was wrong, however, blood tests proved that our baby girl had Trisomy 21. We got angry, we had no risk factors and I had done everything right during my pregnancy; it wasn’t fair. We grieved at the loss of the child we were expecting. Then we got determined. We were going to do all we could to make this sweet little girl’s life the best that it could be.

Carissa has Down Syndrome

Down Syndrome Awareness

October is Down Syndrome Awareness month and that is the purpose of this story. I wish I knew then what I know now. These last twenty-five years have been nothing short of amazing. Let me take this opportunity to tell you about our daughter. She is a vibrant, beautiful young woman who has hopesand dreams like any other twenty-five year old woman. She has an iPhone, a Facebook page, and loves Royals baseball. She plays the piano, frequently doing mini concerts. She has a boyfriend whom she met while speaking at a fund raising event for the Down Syndrome Guild, a support group in Kansas City. She wears make-up and exercises extra when she eats too much dessert (she watches her calories on her Fitness Pal account). She hopes to one day get married.

She graduated from public high school when she was eighteen. She was even asked to play the piano at the Baccalaureate ceremony. She now works at Children’s Mercy Hospital as a Hospitality Assistant and an Ambassador for the Down Syndrome Clinic. She loves her job. She lives semi-independently in a house with three roommates. She pays taxes, votes, volunteers in the community and goes to church every Sunday.

She knows that she has Down Syndrome and what it means to have an extra chromosome.

She will also tell you she is a PERSON with Down Syndrome, not a Down Syndrome person. “There is a difference you know,” she says with a smile.

She will tell you that her parents are very blessed because she was their first child and she has Down Syndrome.

She is very intelligent, however, sometimes difficult to understand because verbal communication is hard for her at times. There is a lot going on in her head that she can’t seem to get out verbally. She can give you numerous STATS on the Royals baseball players, reads books, uses her laptop, programs her TV to record Dancing with the Stars and never forgets a birthday.

When my son tells others that he has a sister with Down Syndrome he will often get the comment in return, “They are so loving,” and he will reply, “You haven’t met my sister.” Like people without Down Syndrome, people with Down Syndrome are very diverse in their personalities.  She is not always loving, especially with her siblings. She does, however, have an uncanny sense of what others are feeling; very rarely does a person come away after having a conversation with her, and not have a smile on their face. She seems to know what is important in life: giving a hug when needed, calling her grandma every day to check on her, and smiling at someone to brighten their day.

I say all this not to boast, but to instill hope and positive awareness. Our story is not unique. People with Down Syndrome all over the world are overcoming their challenges and accomplishing great things. Some individuals are going to college, starting their own businesses, and advocating for people with disabilities in Congress.

Have there been challenges and difficulties the past twenty-five years?  Absolutely.  Blessings?  Too many to count.