Tag Archives: spina bifida

Just another part of my story

November 2, 2016, was a day that changed my life. Nerve pain, ever experienced it? It’s excruciating. Like having a barbed wire running throughout your entire butt and down your leg and every time you move your lower body, at all, it constricts, shredding and tearing everything it touches. There is no working around it,  you change your life for this kind of pain, not the other way around. It has completely orchestrated my life for nine and a half months now. I know it sounds dramatic but if you’ve experienced it, you understand!

I have Sacroiliac joint dysfunction and was told, from a recent MRI, I have bone marrow edema -this causes tons of swelling in the joint, and am in the process of meeting a rheumatologist because my sports medicine doctor is certain I have rheumatoid arthritis.

About a month ago something happened and the pain started subsiding, FAST. I didn’t care why. Still don’t, although, I wish I knew if it was something I did. I couldn’t believe it. I was sleeping more than 4 hours, I wasn’t in hardly any pain -I have had panic attacks at the thought of having to get into bed, I could get into my car in less than 5 minutes, walk at a normal pace -I have to walk REALLY slowly on the bad days, clean the house with no problems, and I was even getting to workout -my most very FAVORITE stress reliever.

THEN, about 2 weeks ago it started creeping back in.

I chose not to share any of this before because I, I guess I just hoped it would go away. I hate being pitied or treated like I can’t do anything. I am the one that takes care of everyone, everything, and I do NOT like to be treated like I can’t. Sharing this makes me feel incredibly anxious and vulnerable, but I’m hoping I can use this as an outlet when it’s all a little too much, and maybe, just maybe it will help someone else to know they aren’t going through it alone. Hell, maybe I won’t feel so alone either.

Now, it’s day to day. Yesterday was a great day, while the four before that were definitely worse. It’s incredibly frustrating, on top of physically and mentally exhausting.

I keep trying to make sense of it all. Like, how does God give me a husband, 3 children -one with a serious birth defect, another with awful anxiety- and then no way to physically care for them?

What’s the saying “God won’t give you more than you can handle”?

I think we need to have a conversation.

School is approaching fast, and it’s that time again, the boys have to get the oh-so-dreaded haircuts, bedtimes are getting back on track, Peytons homeschool curriculum is all set to go, and Ayden and Maddox are anticipating the first day of public school (Maddox has never had one and it’s been 6 years since Ayden has, it’s exciting).

BUT…..

……in the middle of it all, I am doing my very best to stay positive and take every good day I get as a blessing. It can be VERY difficult to find happiness and stay positive when you can’t make plans, schedule appointments, or even do just normal things like cleaning the house or go grocery shopping because you never know how you will feel that day. In my world, the anxiety that causes can be overwhelming all on its own. I get so tired of telling my family, “I’m sorry. I can’t.” It’s awful.

For me, I can’t dwell on those things because it can be really easy for me to stay there. In that dark place. So, in an attempt to stay out of it, I try to focus on the many blessings I do have; my husband (my best friend), three amazing kiddos, the ability to stay home with my babies, friends I wouldn’t trade for the world, and, most of the time, when I can keep a grateful heart, it doesn’t seem so bad anymore.

“Be cheerful no matter what; pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live.” 1 Thessalonians 5:16-18

Be thankful every day you get, no matter how hard it was. We survived and we’re only stronger because of it.

xoxo Cassey

 

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