Down syndrome from the view of an 8 year old

Last night I was laying next to Travis before bed, and I shared with him that one of my graduate students has a sister with Down syndrome. He responded by saying, 'they could be friends.' I explained that her sister is an adult. He said, 'oh, I thought she was Kat's age.' Then he asked, 'how do people have babies with Down syndrome?' I replied, 'that is a something that scientists don't completely know the answer to.' But, I explained to him that he and I have 46 chromosomes and Kat has 47 chromosomes. He asked, 'what's a chromosome'...ok that's fair, he's only 8, but I forget that sometimes! I said a chromosome is a cell and that we get 23 from our mom and 23 from our dad. Then, in his infinite curiosity he asked, 'where does the extra one come from?' I replied, 'that is a GREAT question.' Again, I told him that scientists aren't entirely sure about that either, BUT they suspect it comes from the mom. His face lit up and he said, 'I was thinking the mom TOO!' It's definitely a journey helping Travis understand what Down syndrome really means, and I know that will come in time. For now, he knows Kat is somehow different, and yet on the other hand, he knows that she's simply his sister. When we were dropping him off at school yesterday I was reminded of the uniqueness of their relationship as brother and sister. I opened the car door to help him get out and he was leaning over giving Kat a kiss on the forehead. Then he asked her to give him a kiss back ;-) All that really matters is that he loves her and honors her as an individual. I'm pretty sure that part is taken care of.

World Down Syndrome day!

Wow...this post is long overDUE!! Life has been CRAZY busy...and somehow I have continued to work full-time, manage a private practice, coordinate all of Katarina's medical appointments, get Travis into glasses, braces and expanders, and help him manage the emotional and physical growing pains that go with being a 3rd grader. None of this would be possible without a husband who cooks, cleans, grocery shops and runs a successful business!! The main reason I am posting today is because today is World Down syndrome day...a day I didn't know existed 5 years ago. The date 3/21 represents Down syndrome because there are 3 copies of the 21st chromosome in persons with DS. This means different things for different families, but ultimately being different is not a bad thing! For Kat it means lots of medical appointments and unique challenges with her health. We have numerous specialists involved in her medical care (i.e., pediatrician, ENT, an audiologist, endrocrinologist, Gastroenterologist, Allergist, opthamologist, physical therapist, and speech therapist). She recently endured a sleep study - connected to 27 wires and sensors and never shed a tear. She also completed a 'generation' test in order to determine her body's response to human growth hormone. She has probably given more blood than most young adults and bounces back in minutes when it's over. She has Down syndrome, hypothyroidism, pancreatic insufficiency, a speech impairment, hearing impairment, visual impairment, and growth deficiency; but despite all of those challenges, she has one of the best attitudes of anyone I know! She represents the true definition of resilience!! Kat was never supposed to make it into the world - much less survive once she got here. Not only did she get here, she has made her presence known in a powerful way! I can't describe in words what she has done for our family. She makes us laugh - OFTEN! She shows us her love of music, does an impressive 'gangham-style' immitation, and knows what it means to 'share' her cheetos. She is mainstreamed into a 4-year old classroom and is holding her own. She wears glasses just like her big brother and wants to be like him when she grows up. She knows what she likes (and doesn't like) and will certainly let you know! We think about the future often, but try to put most of our efforts into the present; which is all we really have. There are a few things that have been brought to our awareness since her birth. The word 'retarded' stings in a way that would not have before she was born. Being different means being noticed. And, we are the lucky ones!! We can imagine a future for her that involves a wonderful quality of life. Tonight the national news aired a story about a young man with DS who works in a family restaurant and is known for his hugs...36,000 of them. He has a sense of purpose and expresses his love to others daily! We don't know exactly what Kat's special purpose is, but we suspect it will be one filled with lots of love, determination and a pure soul that will be noticed by many. Katarina went on a field trip today to her first concert, Steven Fite. He is a children's song writer, and the event couldn't have been more perfect on this special day; given her love of music. I received a picture from her teacher while they were at the concert and she was smiling ear to ear ;-). A reminder that she is truly happy to be in this world! We were recently reminded of how others experience our family by a message we received from our sitter. The message was as follows: 'You and Paul have such an incredible family! Watching those kids interact with one another and with me. Travis comforting Kat when she wanted you guys to come home, him brushing her teeth and then snuggling with her on your bed. It was the most amazing thing to watch. Thank you for giving me the opportunity to spend time with your precious kiddos! You both are the kind of parents I hope to be one day.' I was deeply touched by those words and took a deep breath knowing we were doing something right! I ask that each of you take the opportunity to reach out to those who are different or chromosomally enhanced and let them show you a few simple things...love, laughter and light!! Love to you all, Nicole