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Daphne

Children With Disorders

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Hi,

I'll intro myself really quick since this is my first post. My name is Daphne (not my real name, but it's close) and I've lurked around cousincouples.com for almost 10 years now. My first cousin and I have been married for 8 years and have 2 young kids. So now, after all this time, I have something I'd like to discuss...

Before having babies, both my husband and I were aware of the additional risk of being first cousins, as well as our family medical history. We knew PKU (Phenylketonuria) ran in our shared family; we hoped for the best, but got the worst case scenario. Both our kids have PKU. PKU is a manageable genetic disorder, but it's a hard daily task to live with. Our kids will always be on a strict diet, with blood tests, geneticists and dietitians in their lives.

At age 21, I thought, the risk of PKU was worth having a biological child and I still do, but now I see what my kids lives' are going to feel like, day in and day out. I'm sad there will be a day I have an upset tween that can't eat what her friends eat (like pizza and cake at a party). I'm scared of the indignant teenager I might have that accuses me of being selfish and I'm mostly scared for them having their own kids, because PKU will make that an undeserved challenge.

Currently my kids don't know their parents are cousins and I don't know how to tell them or talk about it. My husband and I are very secretive about being cousins. We feel, the result of PKU has opened us up for all kinds of ridicule.

I shared all that to ask, do any of you have kids with disorders? How do your kids feel? Do they blame you?

As far as I know, there are no 21st century self help books for American cousin couples whom have children with genetic disorders, so I'm looking to you guys. 

Thank you for your time and attention in advance.

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I would love to know you and your husbands story

Maybe another time, in another post...

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From my limited understanding of PKU, both parents must carry the recessive gene in order to pass it along to their children.  This is not something that happens because cousins have children; it's because people have children.  If your hubby was any other man who carried this gene, the same outcome could've happened. So, cousin guilt is not warranted here!

It sounds like your children have a mild form of PKU that can be managed with diet.  This is good news!  Lots of people have conditions that are managed by diet (diabetes and Celiac's come to mind) and while it is a bummer, it's not the end of the world.

How old are your children?  If you and your hubby have even moderate contact with your extended families, they will eventually find out that you and your hubby are cousins.  It's better for you to tell them than for them to hear it from someone else.  Imagine if they find out as teenagers at Christmas dinner with the family...  If you treat your cousin status as no big deal, so will your children.  If you hide it from them, when they find out, they will conclude that you are ashamed of it.  

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Thanks for your reply and advice Serendipity (great handle by the way, I try snagging that one whenever I can)!

My kids are 4 and 5. They have classical PKU, so not the mild version (that's hyperphenylalaninemia), but you're right, it is manageable.

We are quite close with some of our extended families. Comments and sometimes jokes are made about my husband and I being cousins, but at my kids current ages, it all goes over their heads. They will definitely get it eventually...

I have this idea to wait until my kids are discreet enough to protect themselves. I think they should choose when and where that private info is shared, instead of growing up around people whom already know because they made a family tree in class or something. Just in case they are embarrassed, or people are cruel.

I know that sends mixed messages, but people really can be devastatingly cruel about cousin marriage in the US. They seem to react before thinking (or researching). I don't want to subject my kids to that while they are little. If they want to champion for cousin marriage after age 18 that's great, but I don't want them getting teased one second while they are little because of my choice.

Does everyone here think kids should be introduced to cousin marriage like it's normal and casual? I read in another post that LadyC suggested telling kids while reading Peter Rabbit! I laughed out loud at that and it does seem like a healthy normal approach... but I just don't know whom might harass my kid in the future, so I feel the need to be cautious.

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And what if your kids make this family tree in 4th grade? Or middle school? Or anytime before you've decided that they are "discreet enough"? What if they put the pieces together and figure out the family banter, before they are "discreet enough"?  You need to be the leader in this situation. 

I don't really understand what you mean by letting the children decide when and where the information should be shared.  The children don't know so how can they know that anything needs to be shared?

 Kids are amazingly resilient and much less apt to getting their feelings hurt than we give them credit for.  Playing into fears, trying to protect them from every single hurtful word that MAY be said to them is unproductive.  As a good parent, I know that you are not going to intentionally put your children in a hurtful situation, but you also have to teach them to be strong and brave.  Stop thinking that your children will be ostrasized and friendless if their peers find out. (Life is not a Lifetime movie) And whether or not they "champion" cousin marriage is irrelevant.  Growing up with the truth of their heritage is much more empowering that growing up with a lie.  

I think sometimes we overplay the backlash that we will get when we out ourselves.  I know I did.  I did NOT want to tell my family about me and cuz, and while there has been some backlash, for the most part it's been OK. You cannot live in fear of other people's reactions!  You don't have time for that and it will keep you from living your best life.  You married the love of your life, who happens to be your cousin. So what? Take pride in your relationship, which includes these two beautiful children.  Don't give them reason to be angry with you later on.  You gotta tell them.  It will be OK. 

There is no fear in love.  Love casts out all fear.  We have not been given a spirit of fear.  Whether you believe in Holy Scripture or not, these are good words for all of us to live by.

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