Musings of a Marfan Mom

Differences in Parenting


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?
kid brothers

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  1. I don’t have a child with special needs, but I think this hits close to the ‘more in common’ theme. Are ANY of us the parents we thought we’d be? I know I’m not. I never thought I’d enjoy playing with dolls and legos for hours on end. On the flip side, I never thought I’d let my kids wander around the house half-dressed and let dishes sit in the sink for a few days. I think every parent’s expectations change throughout the journey. And they keep changing, with every new season of parenthood.


  2. Thats a good question, I dont think I ever had a plan, but things deffinatly have been different at every turn, ups and downs, but is that not the same in any family, our first child is our one with health issues, so we have learnt along the way and had nothing earlier to compare too, so for us we take what ever comes and altho hard at times, its normality for us, our second child has no health probs, but has had minor learning problems , so has taken his time to do alot of things, and iv found myself comparing how quick my sick child did things compared with my healthy child, which I nowknow


  3. Is daft, all kids are different with there own challenges, we can have rules to follow, but oast that my kids have different pesobalities, interests and challenges, so id think it would be impossible to parent them the same . In some ways haing a child with an illness, or even being a parent with an illness means yoy cant realy set a plan in stone, you deal with the hard times, and make the most of the good times, so what if the house needs cleaning, if its a nice day outside , will my kids remember great days on the beach, or climbing teees in the park, or will they remember washing dishes?? I know what id rather have memories of :)


  4. I definitely didn’t have a plan, with either child. But I do treat them differently. I remember with Allie I was one and done because I did not think I would have the love or patience for another child. Then along came Boo. I admit to loving them differently and having different degrees of patience and expectation.

    My saving grace is that there are 5 years between my girls. And that Allie doesn’t get that her sister isn’t a “normal” 4YO. She knows that Boo is special needs, but not that most 4YO can run and jump and talk. We are blessed that Allie has never been jealous or shown resentment to the time spent at doctors offices and therapy appointments.

    I parent both girls differently. My expectations for Allie are much greater, sadly. I do not have the tolerance for her trying to get out of work or not doing chores or talking with disrespect. Some of that is typical 9YO behavior, but my tolerance is definitely spent after a day of being a working mom, a therapy mom, an advocate mom and don’t get me started on the PTA mom. By the end of the night, when doing homework we are all just done.

    With Boo I temper being her therapist, her advocate and being her mom. Remembering just to be in the moment.

    Daddy on the other hand? He would never admit it, but he is a drill Sargent with Allie and a pussycat with Boo.

    In the end though, I think we will all survive parenthood. At least I hope so :)


  5. I will talk from the other side, the son/daughter side. In my case, I was diagnosed with Marfan at an early age, I think I was 3. My parents told me everything about the syndrome from the first moment , at least from the moment when I could understand why I went to so many doctors, and had to take pills everyday.
    Apart from that, my parents treated me in a normal way. I mean, i never felt i was overprotected, just what was necessary. For example, they talked to my gym teacher at school and told her about my exercise limitations, but just that; they weren’t controlling me all the time to see if, in order to fit in with my classmates, I did more than i could do. They trusted me enough (knowing that i was aware of my syndrome and of the possible consequences of making more exercise than I could) to let me enjoy myself and feel just like anyone else.
    Now that i’m a grown-up i can see that for them it must have been really hard, because surely they must have felt scared of many things I did, but they simply trusted me, because they knew that when you’re a child or a teenager you feel the need to be like the others. I think that having my mom or my dad always telling me to be careful of this or that would have made me more scared and self-conscious than I already was. I had lots of teenage traumas, most of them related to Marfan and feeling different, so i think that if they had been overprotective it would have been much worse for me.
    I can’t thank them enough for that…


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