I cannot tell you exactly what I was doing 15 years ago last night. I can tell you that I was not envisioning the precious baby girl I was due to deliver in less than two months receiving awards. Certainly not academic awards. But Monday night in a crowded auditorium with the students who have excelled in academics and as good citizens, there we sat waiting for Rachel to receive Academic Excellence Awards for Science, Social Studies and Language Arts. My husband first posted to Facebook and said that 15 years ago he would not have imagined this.
Fifteen years ago I had a prenatal diagnosis that my unborn daughter would be born with Down syndrome. I would do that again. It did prepare me. I knew very little about Down syndrome. What I knew was not promising or positive. Yes, we had the Internet but no Facebook and local parent support, education and advocacy groups were not as functional as they are now. So 15 years ago information and positive images were more the exception than the rule. My husband had just finished radiation and chemo. Yes, at the young age of 34 he had colorectal cancer. He was finished but his body and psyche had taken a toll. Add the prenatal diagnosis of our unborn daughter having Down syndrome and his emotional system had really been taxed. We had read everything we could find about Down syndrome. We stayed away from Internet cure sights.
So 15 years ago I cannot tell you exactly what I was doing, but I can tell you with complete confidence that I was not envisioning a pretty young lady with a good measure of sass and self-confidence marching across the stage to receive academic awards. I was wondering if she would read or talk or be healthy or… the list of questions goes on. The list of fears of any new parents and then add in the extra chromosome and the list grows very long. Awards of any kind were not on my radar.
Even though IDEA was passed 39 years ago and kids with Down syndrome have been mainstreamed and included in some form or fashion for most of those 39 years, Rachel is still a trailblazer. She exceeds everyone’s expectations on a regular basis. She takes classes alongside her friends. She takes leadership roles alongside her friends. She works extremely hard. She is conscientious. She has a positive attitude that is sometimes a little too pie in the sky! She wants to be like all the other kids and experiences the same disappointments, girl drama and challenges. Sometimes she tells me her brain is full, and I think it is. But she keeps on going and doing. She is proud of herself.
Yesterday I re-posted my blog “IEP Wounds” so I’m not going to camp on the negative nannies we’ve encountered. Rachel has left a trail of people who had low expectations and no vision. However, she has way more people who have believed in her, who continue to believe in her and have helped her to be the young lady she is. The teachers, para professionals and friends along the way who have supported us and gone along with us even when they thought we were a little cray cray but were won over, all of you are to be applauded for believing in a girl named Rachel.
So if you are reading this and wondering what may happen to your little one with Down syndrome, I will tell you I don’t know. I am not God so I cannot look to the future and tell you what will happen. I can tell you to never stop believing in your child. Never give up advocating for what you think is best (appropriate) for your child. Never say never with your child. Try to bring people along by educating them. I can tell you that 15 years from now your child will be more like you than different from you. I can tell you that it will be okay. Okay may not look like you envisioned but still, it will be okay.
As high school peaks around the corner, here I sit again a little afraid and a lot curious. What will things look like in four years? What will they look like in 15? I can’t answer those questions either. I can say that I’m quite sure I cannot envision what Rachel will do that once again exceeds expectations.
Congratulations to Rachel and all of her classmates! We are very proud of you and very proud to be your mom and dad.