Mr. Andi and I have a friend named Mark. He is a larger-than-life boisterous Bostonian with a fabulous sense of humor and a passion for his unbelievably fast Corvette (that he actually drives – fast – rather than keeping it hidden away in a garage). Mark’s wife, Chris, is a distance runner like I am, and he is devoted to cheering, not just for her, but for all of their friends on the race course (at this past weekend’s half marathon, his cheering consisted of picking me up in a giant bear hug at around mile 12!)
Mark also has albinism.
A few months ago, Ellen Seidman of Love That Max shared a post written by a friend of hers who had just learned that her son has albinism. He is the third of three children, and her oldest, a daughter, has Down syndrome. I immediately went to her page to comment. After doing so, I alerted Mark and Chris to the post and he commented on the page, as well.
Following the race this past weekend, Mark and I talked about the blog post. Mark told me that the phrase that stood out most to him was when the mother wrote, “We are grieving…” His assertion was that there was no need to grieve and that the parents needed to “just let him be a kid” and not limit him in any way. Mark’s mom did that (he was the second of three children in the same family with the condition) and it made all the difference in his life. Mark also shared with me that he had hoped that their daughter would be born with albinism, because he felt it was a great character builder to be different.
I spent a lot of time thinking about Mark’s comment, and I agree with him wholeheartedly. As far as grieving is concerned, Sarah Kate cushioned the blow a bit for me before Nathan was born; I’d already had one kid who wasn’t typical, so although I was scared and worried about the future, I didn’t go through a mourning period like many other parents of children with Down syndrome. As for Sarah Kate, her diagnosis was a progression, not a single-instant event, so I was eased into it a little bit.
What I can look back and see with clarity today, though, is that I did grieve Sarah Kate’s diagnosis, and I realize now that it was for (mostly) selfish reasons.
Sure, I worried about her – her abilities, whether she would be teased, what she would be able to do – but the actual grief was all about what happened to ME. I grieved all of the things I had dreamed of having and doing with my kids.
Thankfully, I didn’t let that attitude significantly impact the way I treated Sarah Kate. From the beginning, we always treated her just like a typical kid. Our rationale was that her life was going to be tough, and we’d rather her be prepared for it than get smacked in the face with hard realities once she was on her own. Sometimes we had to step outside of our comfort zone to allow her to do things (see: swim team), but we did it because we felt it was best for her.
The result today is that Sarah Kate is the kid that everyone knows. She’s the kid that people think is hilarious. She’s the kid who stood up to her male classmates (most of whom were a full head taller than she was) last year to defend a girl in the class who was being teased. She’s the kid who, when I asked her about defending that girl, told me, “It’s better to suffer for doing good than to do bad or nothing at all.”
In a prior post, “Advice for My New Mom Self”, I stated that a mom with a child who’s been diagnosed with a disability should “Let her be who she is” – so I understood and agreed with what Mark said. But the more I thought about the conversation with him, the more I realized that we parents spend a lot of time thinking about our children’s diagnoses – probably too much time.
Having people like Mark in my life helps me remember to keep my eyes on the ball – the kid who is a kid first, not a diagnosis.
The thing about Mark is that although he has a very distinct “look” about him, he is so much more than the way he looks. I honestly don’t think much about his white hair and pink skin because, as I said before, his personality is larger than life. People may notice Mark because of the way that he looks, but that’s not what they remember about him. They remember his boisterous voice, the humorous stories he tells, the way he lovingly talks about his orange Corvette, and the bear hugs – always the bear hugs.