I still have yet to meet another mom who found out like I did. I’m sure there are some but I haven’t met them. When I was six months pregnant, I found out through an ultra-sound and then through an amniocentesis that I would be giving birth to a son with Down syndrome. Needless to say, we were crushed; our dreams were crushed. What I didn’t know then but I know now – although I can easily forget during the hard times – is that those dreams, though lost, would be replaced by new ones – just as great, but different.
We’ve definitely had the heartache. I remember calling my mom after receiving Barrett’s diagnosis and feeling like I was giving her a “defective” grandchild – I know, that’s awful to think, but that’s the way I felt. I remember having people tell me that I must be a special person for God to give me a child like that – and I’d think, “Why do I have to be so special?” I remember seeing Barrett have such a difficult time paying attention in class when other kids could do the work – he was fully included from day one – and I’d feel the pain once again of just how different he was. I remember wondering if he would ever walk, talk, be potty-trained! And then there were the IEP meetings, where you already know your child is behind, but having someone say it to your face makes it hurt all over again. We even had a school psychologist tell us when Barrett was three years old – how could this psychologist know when Barrett was only three? – that Barrett would be severely disabled, not mild or moderate. Barrett, of course, proved him wrong.
However, now when I think about Barrett’s life, I try to forget those lost dreams and see a young man who has had incredible impact – no thanks really to mom and dad, but to others who have allowed Barrett to impact them. First and foremost, is his younger brother, Nick. Nick has grown into an incredibly compassionate and empathetic young man; always fighting for the underdog, we believe, because he has Barrett for a brother. Then there is the surgeon who performed Barrett’s open-heart surgery to repair his atrioventricular septal defect when he was six months old. We were living in Hawaii at the time. Surgeons there do not perform this surgery often, so we flew to San Diego to have it done. After Barrett’s surgery, the surgeon connected with Barrett’s cardiologist in Hawaii and began to spend a few weeks a year training surgeons in Hawaii for this and other cardiac surgeries. Barrett indirectly helped improve the healthcare in Hawaii! Then there is the Pleasanton ESoccer program. We started the program with Barrett and two other children with special needs. Since then Pleasanton ESoccer has served hundreds of special needs families, but the unexpected impact was on the typical teenagers who have come to coach. We have had parents tell us how grateful they are that their children have grown in their empathy toward others by helping in the program. Again Barrett, through helping us start ESoccer, indirectly helped change these student’s lives, even their college majors and future careers! I’m not even mentioning how Barrett can put a smile on your face, give you a nickname and never forget your birthday! Or how he has a way of making everyone feel like they are the best cook – yes, he loves his meals!! – and a best friend!
We had a few unexpected challenges since he has reached adulthood…just when we thought it would be smooth sailing ahead! Barrett was diagnosed with some mental health issues, mainly depression and anxiety. The timing corresponded to a number of changes in our family and community, and I can’t help but think Barrett didn’t know how to process it all. Sometimes when things get difficult with his anxiety, I can miss what I think of as “the old Barrett” but I have to hold onto the belief that even in this, Barrett can still have impact. Barrett can’t work a job right now but he is in a wonderful adult day program. I use to feel guilty about that, thinking he wouldn’t be fulfilled if he didn’t work a job. I’ll never forget when he asked me what comes after a day program. He was use to after elementary school is middle school, then high school, then transition program and he wanted to know what would come after being in the day program. I told him he could get a job and get a paycheck – thinking that would motivate him – or he could continue to hang out at his program. I asked him what he’d like to do and he responded with, “I like hanging out!” I just laughed and said, “Barrett you have quite the life!” From that point on, I decided if he is happy, I am happy!! And lucky him; wouldn’t we all like to just “hang out” with our friends?!
We all want our children to grow up happy, to be independent from us someday and to enjoy their lives, no matter how that looks. That is why we are so grateful for Sunflower Hill and the INCREDIBLE people who give countless hours to make Sunflower Hill a reality. I am grateful for the impact each person with special needs has had on the board of directors and volunteers! Those with special needs, whether family member or friend, are changing and will change lives through Sunflower Hill! To have a community of friends to live near, socialize with and on top of all that, not be far from family, is a dream come true.
Written by Anne Roby