The Talk

Most parents worry about having “the Talk” with their children.  “The Talk” I worry about is different.  Sure, I will have to explain the birds and the bees to my son someday (or better yet, his father will!), but it will include a very stern warning about using appropriate birth control.  If Owen and a young woman conceive a child someday, the child has a 50% chance of inheriting Multiple Endocrine Neoplasia 2a from Owen, just like he got it from me.  I suppose this works to our advantage because maybe it will scare him enough to refrain from sex until he’s ready to have a baby.  So there’s an upside.  And who knows, hopefully by then there will be amazing medical advances that can prevent him from passing on the gene, similar to the IVF with preimplantation genetic diagnosis that we are hoping to attempt.

For me, “the Talk” also means something else.  It means the times when I will talk to Owen about our disease.  We have already told him that he had his thyroid taken out because he had cancer, which is true (he was already developing medullary thyroid cancer cells at three years old), and he knows about Mommy’s “owies” too.  But how do I explain to him about the tumors that he may grow when he is older without terrifying him?  He will ask many questions, and I suppose I will always try my best to answer honestly but without fear in my voice.  I never want him to be afraid of what he will face, which is motivation for me to attack scary situations as bravely as I can.  But the truth is, it sucks.  A lot.  It sucks so much that I’m going to try IVF to prevent passing it on to anyone else.  Owen and I will be bonded by this disease in a way that no parent ever wants to bond with their child.  I know it would’ve changed my childhood tremendously had I known at a young age about my disease.  I would’ve been terrified all the time, felt different, and at that time so little was known that I would’ve received sub-par treatment.  But Owen is already braver than I will ever be, and he is my inspiration to be brave every day.  I just hope someday he finds it in his heart to forgive me for giving him the wrong letter in his DNA.  As he says nearly every day, “I didn’t mean to.”

12 thoughts on “The Talk

  1. Owen is so lucky he has you to spread awareness and hope. He is brave because he has you to look up to. Also, great excuse to have a lot of ‘wrap it up’ speeches. I’m sure he’ll love it 😉.

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  2. You are correct about the bond you have with Owen… But your bond is so much bigger than a disease. Your love will endure anything and you will find the strength to have many talks. Owen will grow into the knowledge as it comes. You are the perfect leader and model for him. And you both are surrounded by a village! Keep the faith and live life to the fullest! ❤

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  3. Lol Kari! Enough guilt. My dad gave me MEN2A, and I definitely don’t hold that against him! I can promise you Owen won’t either. You had him gene tested and did everything in your power to see that all of the right treatment and monitoring protocols are followed. He will be grateful for that when he is older.

    In my opinion, pheos are the WORST part of MEN2A. Some might say it’s the thyroid cancer, but for me it’s the pheos hands down. I don’t hate many things, but I hate pheochromocytomas like nothing else. It would be a good idea to wait until Owen is much older to discuss these tumors with him. As you pointed out, they are frightening and I don’t think it would be right for us to subject our children to that fear at this age (Lilah is 5) of course this doesn’t mean keep it a secret. I always answer the questions my kids ask about my MEN2A and adrenal insufficiency honestly and try to keep it appropriate to their maturity level. Right now, Lilah doesn’t really think to question her own health. She doesn’t realize she has more doctors than most, and she doesn’t realize other kids don’t take a little purple pill every night to “stay healthy.” And to her, blood draws are just what we do to earn chocolate milk at the lab’s café. To her, she’s no different than anyone else.

    She’s very smart and I’m sure one day, probably after a doctor’s appointment she’ll ask me what a pheo is. When that day comes I’ll tell her. I’ll focus on early detection, explain some key symptoms to watch for, and with any luck that information will provide assurance instead of fear.

    We’ve got a long road ahead of us with our little zebras. But we are armed with information and thanks to that they will have many happy, healthy years.

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    1. Thank you, Michelle, for being probably the one person who has truly made me feel like I am not alone in this journey. You’ve taught me (and so many others) so much about this new body of mine which is so similar to yours. I agree with everything you said. I hope someday our kids can play together while we sit on a bench and chat. I’d say we’re more like the Fruit Stripe Gum zebra than a regular one. Rainbow stripes! Thank you, thank you, thank you!!! And Texas is a lot closer to Washington than Florida is. Maybe that day will be sooner rather than later. (I’m still drafting my post on pheos and AI. It’s so long already I’m going to have to break it into several posts. As you know, there’s so much to say to educate people…). ❤️

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  4. With you as his mom I’m confident he will be just fine. If he is only half as brave as you are, he will handle anything thrown at him with grace and courage.

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    1. Thank you! I’m assuming PTC is papillary thyroid cancer (?) but I wish you the best of health and happiness. Thank you for taking the time to read my blog. ❤️

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      1. Took me a moment but I figured it out. Thank you for clarifying. Sending positive vibes across the Atlantic to you!

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