Musings of a Marfan Mom

I’m blessed to have a tight-knit network of Marfan moms whose children are close in age with Baby J. We talk about everything from surgical indicators to favorite TV shows. Tuesday evening the subject of parenting came up, when one of my friends mentioned she’d be interested in whether Marf parents parent their Marf differently than their other kids. We had a good discussion, and I thought I’d toss the question over to all of you.

Those of you with kids with special needs (not just Marfan!), do you parent differently than you thought you would? Did your parenting priorities change with your child’s diagnosis? If you have multiple children, do you parent them differently because of one child’s diagnosis?

I am definitely not the parent I thought I would be. And really, I’m perfectly happy with that. My kids and I generally have a great time. I never thought I’d enjoy being a stay-at-home mom, but here I am! We’re also entering a stage where we’ve got a lot fewer doctor and therapy appointments, so I expect that will lead to doing more “typical” activities.

Have my priorities changed? I’m not sure. M was diagnosed so early in my parenting “career” that I didn’t have my priorities all figured out. I will say that I don’t “sweat the small stuff” as much. My kid doesn’t eat a varied diet? Meh. At least he eats something from every food group! He’s late potty training? That’s ok, potty training is overrated. It’s more important that he can tell me some of what he did in preschool today! And hey! J is gaining weight! And running! That’s not to say I don’t worry – Heaven knows I do – but I worry about things that most parents don’t.

I love how my friend Stephanie put it. Her kids aren’t going to be little forever, and her son has gone through a whole lot in his young life. So if a couple of times over the summer they skip dinner and go out for ice cream instead, or one of her sons wakes up at 3 am and wants to play, she goes for it. That doesn’t mean there aren’t rules the rest of the time, but she’s learned when to break them in favor of making memories.

I’m still early in this parenting two kids gig, but I don’t think I treat them too differently. There is some variation in how I approach teaching and disciplining them because they are different from each other, but that is more about personality than Marfan or autism. I believe that’s probably natural for parents of more than one child. But does J get away with more because he has Marfan (or M, for his autism)? No. While some accommodations in life will be necessary for both boys, I don’t believe in using their diagnoses as excuses. Mark and I are raising them to abide by the same rules as the rest of society: be polite, be honest, be helpful, be kind. To us, those are the things that matter…less so what they’re wearing or whether they make a mess. I also think special treatment can build resentment between siblings, as my brother touched on before.

So what about you? Do you hold to the same rules you had before or when you first started parenting? If you’ve changed, how?