This intimidates me

I’m not entirely sure what I want to call this post just yet. I have no idea what direction it will take; I just want to write. I want to get the words out there; I want to make my thoughts known, because it’s interesting and scary and maybe I feel as though I need a little support.

Many of you know that I have a bone disorder. Many of you also know that my son has inherited that bone disorder; he has the gene with the “mutation”, so to speak, and…although it’s hard to tell what degree of seriousness he’ll have it, he will most likely display the symptoms. He will most likely need surgeries.

We’re holding on to the possibility that maybe he won’t have it as “bad” as I do, maybe he won’t need as many surgeries. There is also the tiniest of chances (or, they told me so anyway) that he could have the gene and not display any symptons (or hardly display any).

But when I was waiting for my surgery yesterday, I couldn’t help but think about the future…about being on the other side of a surgery process. About being in my mom’s shoes, waiting in a waiting room while my child got operated on, sitting in a cold plastic chair filled with other anxious parents and people and watching the clock tick minutes slowly, painfully away. Wondering what was going on in that operating room, wondering if everything was going well, trying not to freak out although my heart would be pounding and I would be a nervous wreck the entire time I waited for word.

It was hard not to think about Nolan’s future, should he need surgeries. How would they affect him? How would they affect me? I freak out when the kid bumps his head when he crawls into something, I can’t imagine what I would be like waiting for him while he has a surgery. Actually, I can, and it’s scary. It terrifies the ever living shit out of me.

While I sat (or, rather, laid) in the hallway waiting for them to prep my operating room, I couldn’t help but think about how I didn’t want this whole MHE thing to be a negative experience for Nolan. I don’t want him to dread surgeries, but I also don’t want him to feel like he has to be brave. I don’t know how to make that experience (should he have them, should he get MHE “bad” enough that he needs surgeries, which I hope he doesn’t…I’m still holding out on the possibility of him just having the gene…) easier on him, on us as a family.

It’s confusing for me because I feel like I should know the answers to all my questions and worries. I feel like I should know exactly what to do, since I grew up with this disorder and had several operations.

But, I don’t have the answers. I just have the questions. I just have the worries and the fears and the insecurity. Being a parent is a hard, hard job. You shape these little people, you teach them and you are a HUGE reason why they become who they become. There are so many ways to screw up it’s not even funny. It’s terrifying. And I think that having a child with a disability makes it even scarier, because you don’t want to baby them and put them in a bubble but you also don’t want to come across as cold and uncaring.

I don’t want to put Nolan in a bubble, I don’t want him to fear this disorder…to live in it’s shadows as I did for so many years. I don’t want him to be afraid of surgeries. I don’t want him to feel different. But all these things could happen. I could, despite my best efforts, bubble him. He could still end up fearing this disorder, and living in it’s shadow. He could, despite my best efforts, still let the disorder speak for him and draw lines on what he wants to do.

And so, I told myself that…although I don’t have any answers to those things…those questions, I do have one plan that I’m setting in motion: I won’t give him any reasons, I won’t set any examples that this disorder is bad or scary. Mommy will be brave. Mommy won’t show fear for surgeries, or complain about the pain.

I’ll be strong, for him. I’ll push myself to get better faster, to get on my feet sooner, so that he sees how not bad it is.

But I’ll let him know that if the pain hurts, it’s okay to take a day and rest…to snuggle up on the couch or in bed with some books and puzzles and crayons. I’ll let him know that sometimes, it’s okay to be scared or frightened, but things will work out.


  1. At least he’ll have someone to talk to, to know what it’s like to be in his shoes. And I think that will mean a lot.


  2. You know who could help answer your questions Jess? Your mom. She has sat there through every surgery, every tear, every fear over and over again. She could help answer questions, and when or if it comes time for Nolan to go through this, then you have an idea as to how your mom dealt with it, plus how you dealt with it, or how you would have liked to deal with it.

    You’ve been through this your whole life! Your stronger because of it, and your knowledgable. Nolan will have a great role-model and I’m sure if he needs to go through this, he will be more then fine with things. 🙂


  3. when i started reading your blog the first thing that came to my mind was “Wow… this would scare the shit out of my mom”… the woman made me sleep with her the night I had my wisdom teeth removed “just in case I started bleeding internally or had any ” ‘coagulation’ issues”…
    i’m 22 and i still have to sleep in her bed if I get a fever… and if my brother is sick at his house she will call him a thousand times asking what his temp is and if he needs something…
    to sum it up: my mom is extremelly over protective… and we never had real surgeries like you did…
    first of all, let me tell you (and please say this to her) how much i admire your mother’s strenght, she not only watched her daughter go through more than 10 surgeries, she was also there to see you give birth, and also your sister… It takes a lot of courage, and a huge heart to do that…
    and secondly, I know you have that same strength in you Jess. Should Nolan have the “surgery gene” I know you will suffer but you will be there for him, and thank God you have a great support system from all sides of you and Matt’s family…. you’re a great mother, and should he have any surgeries, you willl see this strength come to you, like my own mom does, like yours does….

    and about not putting him in a bubble… i think it will depend mostly on what the doctors tell you and how you react to that…. i don’t think you’re over protective, but who knows??

    ps: why do i always leave SUCH LONG COMMENTS!!???


  4. Becoming a mother yourself certainly changes your perspective on experiences you had when you were young, doesn’t it? You’d give up anything to make sure they have everything they need and desire, yet there are so many limits on what you can or should do for your kids. I have no answers really, but I’m sure that this will be a perfect opportunity for you to bond with your own mom even more. Lean on her and you’ll be stronger. Nolan will see that family is always there for him.


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