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.”
Character.
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.
I couldn’t agree more.
You will never know how much hearing those four words from you means to me, Sarah. Thank you.
What a great post, Andi! I have been meaning to reach out to you for a while but as you can imagine my life has been crazed with three small children under the age of four and my dad being sick. Mark reached out to us and he was great to connect with over email. We feel so much better about Geoffrey already and have already moved forward.
I love your blog, by the way! And I am a runner too! Three marathons to my name.
I’m so glad that you connected with Mark and that he was able to give you a better picture of Geoffrey’s future. Maybe we’ll meet up at a race sometime – a race that Mark’s wife is running – and you can get a big ol’ Mark bear hug, too. 🙂
Well said as always Andi, I may not always comment but I often read. Thanks for opening your family for others and thanks to Mark (best bear hugs EVER) for sharing as well.
Very good and very true. It is hard to keep your eye on the ball, though, as you say. I agree that we are grieving for us, not really for them. My life is a lot harder than it would be if Malachi could do the things his brother could do; so far, his isn’t really, because I’m picking up the slack. It’s very hard to know where that line is between helping too much and not enough with SPN kids. I hope to walk it as successfully as you did with Sarah Kate.
It’s always a struggle – we are all selfish creatures by nature, after all – but as long as we always work to both understand and be understood we’ll come out ahead in the end.
Well put Andi. And your right most of the time we are grieving for ourselves. Having been at this for 12 years now and having two kids with DS we are constantly going through different stages of grief. We have found it important to realize that and try not to worry too much when we’re feeling down. I try to concentrate on their strengths and what makes them happy and try my best to push “typical” expectations aside.
Bravo! It’s tough to push aside those “typical” expectations when they are pounded into our heads day in and day out. Sometimes I wonder what it would be like to live off somewhere in semi-isolation where we wouldn’t be bombarded with those images all the time. It’s not that I want to hide out – I just want to not have to fight so hard to reject the norm.
Andi- despite the fact that I am a pudgy, sedentary, middle aged, not perky, non-christian, we are – where it counts- kindred spirits! Lovely post.
I always love reading your post and I have to say this home hit home again. I was really upset with myself for my grief after my daughter was born, but it was like you said it was for my own selfish reasons. I recently found a poem “Celebrating Holland” and on my past day of my 31 day post on my FB I posted my version of this poem. I was grateful for my years in Italy but my baby girl has enriched our lives so much with landing in Holland. Here is a small part of what I posted: Yes, over 19 months ago I landed in a place I hadn’t planned yet I’m thankful, for this destination has been richer than I could have imagined. Thank you Lacey for showing me the way. I love you so much. I am so happy to be your Mommy even though you love to call me Daddy. I love your Ray of “Sunshine” I get everyday from that beautiful smile and laugh. The world is a better place because of you and I know you will prove it because at your young sweet age you have already touched more lives than most people my age.
Andi,
As you know, I’ve been there– and I agree. Mark’s point is a good one about how dealing with “non-typica;” circumstances can really help shape and mould our character, but I couldn’t intentionally wish the frustration it causes on anyone. I’m thankful for every bit of normalcy I find for myself.
I adnire you and what you do SO MUCH