Category Archives: spina bifida

Going for it

Wow, life has been so crazy! I realize I signed up to tell you all about it when I started this blog, but can I be real for a second? Every time I sit down to write something I get in my own head. I wonder, will this blog will ever make a difference? Do people actually care about my day to day? Maybe it’s just me going through this or what if it isn’t perfectly written? Will they care? I love blogging but, am I out of my league?  I eventually start to think maybe I should be doing something productive instead and, unfortunately, those are the thoughts that sink in and usually win.

BUT, I’ve decided NO MORE, and I am going to tell you why.

Last week, my 13 year old son would not stop bugging me about going outside to try roller skating. He has always wanted to be able to skate, so he can play hockey with his dad someday but, our situation is a bit unique with Ayden having SB (Spina Bifida). Roller skating is a skill he’s attempted many, many times with little to no success. He has “normal” -whatever that even means- muscle function from the knees up, but knees down is another story. Between muscle weakness and nerve damage, he has difficulties with strength and function, which makes activities like roller skating extra difficult.

Photo courtesy of Pinterest

I am going to be honest, I didn’t want to let him go. I didn’t want him to go out there and come back in heartbroken because his body doesn’t want to work the way he is asking it to, but that’s exactly what happened and he was absolutely crushed.

“I couldn’t even take ONE step, mom!” He said before he fell into my lap sobbing. “I’ll never be able to do it! Why did this have to happen to me? It’s my dream, mom! They (his legs/ankles) just don’t work! I will never play hockey!”

I had nothing. The only words I could manage to get out through the tears were, “I love you, I’m sorry, and it will be okay!” I just kept repeating those small phrases to him praying they were enough. I needed him to feel all of my love. I needed him to know he wasn’t alone in any of this.

The next few days were rough for me. I couldn’t stop thinking about what happened. I kept replaying it, over and over again, thinking about how his world is changing and if he’s handling it all okay and then a few days later, something CRAZY AWESOME happened…….

A GIANT hockey net showed up at our house! That’s right! He decided he wasn’t going to let his diagnosis dictate his life. He even spent his own $78 to buy this net. He told me he wasn’t going to let fear or Spina Bifida stop him. He was GOING to play, somehow.

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Ayden’s new net

Ayden’s got the idea! Who cares what they say or what’s supposed to be? If it’s scary, just go for it! You only get ONE life, that’s it! So why not? What’s the worst that could happen? If it’s hard, keep pushing! Like my husband always says to me, “You do you, boo boo” (cracks me up every time)!

We all have the exact same choice, each and every day! I don’t know about you, but I’m with Ayden, I’m going for it!

He bought the net and I pushed the “Publish” button.

It’s a start.

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Photo courtesy of Pinterest

xoxo Cassey

 

 

 

 

 

 

 

t25, yoga, & kids, oh my!!

No surprise, life’s been crazy. I wanted to try and catch you all up real quick.

If you don’t already know this, our eldest son was born with stage 4 -myelomeningocele-Spina Bifida. This means his spinal canal never closed properly during gestation. He also has an Arnold Chiari malformation. This is when a part of his skull is small and misshapen pushing the brain tissue down into the spinal canal.

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Ayden and I

Ayden is an almost 13 year old boy who gives me a run for my money, let me tell you. He has a smile that lights my heart and a laugh I could never live without. He has had 15 surgeries, numerous procedures, and is, easily, the strongest person I know. He’s been in decent health for the last 2 years, but the last couple of days have been difficult for him.

He has had a bad migraine and some pretty serious pain in his incision site on his back. I have had to go pick him up from school both yesterday and today. I hate that I never know how serious of a problem I have. You never know with these kiddos. At least, we have a plan after speaking with his neurosurgeon this afternoon and I will keep you posted on that.

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Ayden & Dr. Wehby, his Neurosurgeon!

Peyton continuing to home school is still the best decision I could have made. He is excited to learn everyday. He is present and learning new things with each and every lesson. I just wish he was able to do this with other children.

Peyton with Lemon Surprise, his new plant!

We went to the library the other day and they had a science class he wanted to go to, but after seeing how many kids were in the class he decided he no longer wanted to participate. I didn’t push it too much, but it definitely bothered me. He really has some serious feelings about a room full of children. I am looking into getting some help for his anxiety and I’ll keep you posted on that, too!

In other news, we’ve been on the ketogenic plan for about 6 weeks now. If I’m being honest, I don’t love it. I miss fruit and I don’t love bacon the way everyone else does. I am doing my very best and it’s working, but I am pretty bored with the food choices. I have decided to try at least 4 new recipes each week, that way I can keep things fresh, hopefully.

Typical keto breakfast for me

I am down 35 pounds since February and I LOVE IT. I want to be that woman that tells you I’m fine with whatever size -I’M NOT. I can’t handle my legs rubbing together resulting in the worst, most painful, damn rash that makes you waddle like a duck for a week after. I’m not good with it feeling like a workout just to shave my legs, sitting out of anything bringing the spotlight to me, hiding from any and ALL cameras, not being able to cross my legs, sweating like a pig because I decided to wear my shape wear in 100 degree weather (all for appearances, huh?), or hoping that my husband won’t come back before I’m completely dressed because the thought of him seeing everything is out of the question.

Yes, I want to be healthy, but I also REALLY want to be comfortable in my own skin. I don’t want to hide behind clothes, make-up, and fake smiles anymore. I want to throw on clothes, thoughtlessly, without examining every roll and jiggle. When I’m playing at the park with my kids, I don’t want to be fumbling around pulling shirts down, pants up, wondering how disgusting I look to everyone else. When my husband tells me I’m sexy, I want to believe him.

So, it’s simple; I’m changing it. I am the only one who can give me what I want -my life back.

On the left-196 on the right-161 35lbs GONE!!!

Along with the ketogenic plan, I have just started the t25 workout videos, ya know, “An hours worth of work in 25 minutes.”They’re hard; I have had my ass handed to me both days I’ve done it. I am being careful with my SI joint and my heart (I have inappropriate coronary sinus tachycardia) and taking it slow, but it feels so good to move it’s hard to pace myself. Dan just bought me a fitbit Blaze to help me track all my workouts. He’s a good man.  I am also doing 20 minutes of yoga at night to keep my periformis muscle happy.

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I have set a goal to complete the first 25 days of t25 and yoga at least 3 days a week. Why am I telling you? Accountability of course. I am not perfect and I will make mistakes, but I can’t quit -not again. I want my kids to see that I had a problem, set a goal, and crushed it, not what they’ve gotten so far.

Image courtesy of Pinterest

I want to make them proud; I want to make me proud.

I realize this is a bit scattered -sorry- but sometimes my life is just all over the place .

xoxo Cassey

Follow your gut, Mama, it usually knows the way

“Mama, it’s too loud! I can’t ever concentrate because everyone yells!” “Everything takes THIRTY MINUTES when it could just take FIVE!” “My ears and head hurt from all the chaos!” “Everyone is crazy, why don’t they stop?” 

After less than 2 months of public school, these are the phrases my 6 year old used when anyone asked him why he wanted to go back to homeschooling. Usually,  He would cry, stumbling over his words, trying to make sense of it all; eventually, getting too frustrated and give up. 

 Everyday was a struggle for most of our family; We were all feeling the stress -especially me. It didn’t feel right -not letting him homeschool when I had the resources, the time (I make time), AND the desire…..it’s crazy to me. 

So, I followed my gut and pulled him out.

I think I needed to really hear what we had all been listening to him say, he isn’t ready. He needs more time. 

Fast forward to the first day back homeschooling – I won’t bore you with all of the details, but, I will tell you, our school day was full of learning and laughter. We had so much fun; He LOVES math -we had to start with two lessons. He couldn’t wait to dive in; counting, reading his new BOB books, clocks, patterns, and neither could I.

As we were cleaning up our school mess, (tip: Picking up things in alphabetical order is always fun) I couldn’t help but feel like a badass. He is happy! He is stress-free! No tears! 

I did that and, especially now, I am confident we made the right choice.

These are the first 3 books he’s ever read start to finish all by himself! 

As moms, we’re always looking for ways to help our children. We talk to our mommy friends -maybe try something they’ve had success with in the past, we get online -ya know, looking for solutions to situations we, ourselves, don’t fully understand (admit it, we all want to do the “fixing”, first), or some turn to their own parents or family for advice, it doesn’t matter, the point is, we won’t find the answers we are looking for unless we keep it simple -ask them, and then listen. You’d be surprised what these little humans have to say and all we have to do is ask. 

Side thought: It’s funny, newborns can only communicate by crying, SO, what do we do?  We, instinctively, learn their every wimper and cry in order to care for them. We are hearing them, learning them. Why, or when, does this change? Life? Time? Careers? Society? 

I don’t think we can ever pay too much attention to how our Littles are feeling. If your child is struggling with something, I encourage you to just, STOP and really try to hear what they are trying to convey to you -don’t interrupt them, wait! . Let them put the words they know together. I find, if I interrupt to help the conversation along he either gets side tracked and doesn’t finish his thoughts, or feels overwhelmed because he thinks I don’t understand what he’s trying to say. I can tell you from experience, this is no good!

 We ALL know parenting is a rough gig, complete with NO instructions or guides. We just have to trust our mommy instincts and do the best we can because at the end of the day that’s all that matters. 

Helpful Tips:

  1. Start teaching them about their emotions & how to express them, this HUGE so start early.
  2. We don’t always have the right answers (surprise, surprise) -allow them counseling at school or privately. Whatever they need to do to vent and get things off of their chests, we’re good with.
  3. Make sure you prepare your heart before you dive into a conversation. Kids always think they’re right which usually leads to an unhappy mama because the attitude and arguing can be typical. If this happens, try to reroute the question or give them a small task to keep their hands busy -again, depending on age.
  4. Be patient and listen. Try to really hear what it is they are struggling with, friends, teachers, school -It doesn’t have to be bigger issues like anxiety or Spina Bifida (physical problems lead to emotional problems, I’ve learned)
  1. And finally, listen to your instincts. We know our babes better than anyone and we need to be their advocates until they can be for themselves. 

-Hope this helps!

Best of luck to you and your small humans!

Xoxo Cassey