On My Mind…

Nolan’s specialist appointment for his MHE is coming up fast, 11 days. We will be going to Sick Kids to meet with his new specialist on September 15th. 
Matt and I are both becoming increasingly nervous about the appointment. We know Nolan has several bone growths already that could be a cause for concern, right now they’re just a major cause of worry for us. He doesn’t seem overly hindered by them, which is good, but they are growing quickly and we know that they’ll interfere with joints, nerves etc at some point, our worry is that it will be sooner rather than later.
I’m hoping that we have plenty of time before Nolan will need surgery.
I had my first surgery when I was in grade one. I think. Maybe it was grade two? I don’t exactly remember my age, but I remember the surgery.
It was on three sites on my left leg. Above my knee on the “outside”, below my knee on the “inside”, and on my ankle {also on the “outside”}. I’m sorry I don’t know the medical names for those areas, but I’m sure most people wouldn’t follow them anyway. 
I got to pick out a cool coloured cast. I picked pink. I wasn’t really nervous about the surgery until they told me to ride a bike into the operating room. The smell of the room, the strange machinery and all the doctors and nurses in scrubs and masks made me insanely nervous and I did try to escape. 
The nurses and doctors did their best to calm me as they tried to get me to pick out what kind of “sleeping gas” I wanted. I picked orange creamsicle but it didn’t taste ANYTHING like orange creamsicle, and as soon as the anesthesiologist put it on my face I was begging for him to take it off. I didn’t beg long, I was asleep within three seconds. 
I don’t remember the next few days, because I was on a lot of pain medication. There had been an issue during surgery in which my bone bled out, and the night of my first surgery they had to cut off my pretty pink cast and send me back in for an emergency surgery to stop the bleeding. I required another surgery a few days later to close up the incisions.
I remember my parents driving me home, and whimpering every time we hit a bump and when my dad had to carry me in. I can’t imagine how hard it was for them to see me in such pain.
I remember his face while he carried me inside, and how he looked like he was suffering just as much as I was. I felt bad, for letting it show how much it hurt, and I think after that I’ve always tried to keep quiet about the pain. 
I was looking through the photo album my Granny made me, and found a few pictures of me after my first surgery {and a few from surgeries after that}.

Last night, while laying in bed with Matt, I couldn’t help but cry. I was emotional, and thinking about the future. I was thinking about how difficult it was for me growing up. I don’t think I talked about it much at the time, but it really was hard. It was hard starting off school years in crutches, and instantly being labeled as different. It was hard being the only 16 year old walking around with a cane. It was hard graduating grade 8 in crutches, feeling so awkward and out of place. 
 JD & I, at one of my birthday dinners with the family, & accepting my grade 8 diploma…


 Recovering from a surgery {not sure which one} & my papa being silly with my crutches. 
Arriving home from the hospital in time to see my sister off for prom.
My family and friends were always there for me, and for that I am entirely grateful, but it was still difficult. I still felt like the outcast.
One of my biggest fears is that Nolan won’t be comfortable in his own skin, like I was {and regretfully still am}. I don’t want him to feel like hiding when it’s summer time and he’s wearing shorts. I don’t want him to miss out on any opportunities and I don’t want him to feel like the outcast.
I’m also not sure how I will handle seeing him in pain. I hate when he gets a cold, or has teething pain. No parent wants to see their child suffering in any way. 
I asked Matt last night what would happen if Nolan needed surgery immediately. How would we explain it to him? How would we comfort him? The hospital was scary to me when I was in grade one {or two}, and I was a lot older, more prepared and able to comprehend what was happening. 
He pointed out that there are children who go through worse, and it’s true…so I feel bad for worrying about it and crying about it. It definitely could be worse, and I am so thankful that it’s not. 
I still can’t help but worry, though.
I guess I was feeling a tremendous amount of guilt because he has inherited my genes and will have to go through a lot of the same things I did. 
But, he is strong…and I know this. 
I hope I can be strong for him too, all the time. I don’t want him to see me experience moments of weakness and fear. 
While pinning on Pinterest today, trying to distract myself, I saw this quote:
It couldn’t have come at a better time.

About J.C. Hannigan

25. Mother. Wife. Lover of words. Weaver of stories. My first book, Collide, is available in e-book for Amazon Kindle and Kobo.
This entry was posted in living with chronic pain, MHE, N, pain, photos, worries. Bookmark the permalink.

8 Responses to On My Mind…

  1. Skywaitress says:

    Nolan is strong and so are you. You didn't have anyone that had been through it before. Just think how great it would have been to have someone there all the time who had been through the exact same thing. Nolan will learn to deal with everything and you'll be right there to support him through all of it. Kids sometimes surprise you with how much they can handle. I'm sure Nolan will do that for you.

  2. jess ♥ says:

    @Skywaitress: Thank you love. And yeah, that's true! ❤

  3. You are the best Mama he could have gotten. You Matt and Nolan will get through this because you are all so strong. This I know.

  4. This post actually brought tears to my eyes. The part about the hurt your father went through seeing you struggle in pain made me so sad. I hope you don't have to go through all of these things with Nolan. I hope that they can at least delay surgery until he gets older, like you said. *Sigh* I'm not sure what to say that will comfort you except that you are a wonderful mother. You're very strong and you will take very good care of Nolan and new little baby on the way too.

  5. jess ♥ says:

    @Karen Sugarpants & @Danielle-Marie: Thanks loves, it means a lot!

  6. I agree with what Skywaitress and Karen said; Nolan is so, so lucky to have you as his mom, someone who has already been through what he may be going through. The paradox of it is that you know how sucky it is… but you know just how to comfort him and just what to say to show him that you do understand. Like Danielle-Marie said, you are a wonderful mother.

    This sucks. It really does. I'm keeping my fingers crossed that he won't need surgery any time soon. If he does, though, I cannot say enough how lucky he is to have you and Matt at his side.

  7. jess ♥ says:

    @Elizabeth Kaylene: That's very true, VERY true. I also hope that I won't ever make him feel limited in what he can do. It sucks because with a physical chronic pain disorder, you ARE limited, but I still want him to give everything a try you know? And thank you for keeping your fingers crossed ❤ and for the supportive and strong words ❤

  8. This was really powerful. Nolan is so lucky to have a strong mother like you. And whatever he goes through, he is so loved and supported. You will be able to relate to him, and help him through anything, MHE and beyond.

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