Ataxia vs. Mom

I can’t believe I’m already packing up for my third trip down to Tampa. I leave tomorrow and return Wednesday (day before Thanksgiving). I just got back last week–I unpack, do laundry, then have to pack again! At least I’m just about half way through. My last trip will be December 6th-12th. Then I will be indulging in donuts! 

I started taking RT001 November 10th which would put me 12 days in thus far. Because of the confidentiality of a research trial, I cannot give any indication whether the study has had any effects on me or not. So, you’ll just need to wait at the edge of your seat until the trial is completely over for me to share all the ins & outs. In the mean time, I’m sure I can keep you plenty occupied…

The name of my website is ‘Balancing ataxia and Mom life’ so let’s have some real mom talk for a change…

My son is the definition of sweet and sour. He can be the sweetest, most caring boy; which, thank goodness, over power the ‘sour’ moments–because we sure as hell been having some testy times. 

Ever have one of those days when you’ve repeated yourself over and over and over for the whole day that you’re tired of hearing your own voice?! πŸ™‹πŸΌπŸ™‹πŸΌπŸ™‹πŸΌ

First there’s sour… 


Then there’s sweet…

 Sour patch kid written all over!! 

Or Friday night at soccer…we started out sweet… 


But 10 minutes went by and the sour came out… 

We actually had to pull him out to go home. Sad. Sad. Night.

As I attempted to write this post a couple days ago, Eli asked me to lay with him to watch ‘Alvin and the Chimpunks’ (his new obsession) and it has completely made me forget about the sourness.  


These are the moments I miss most when I’m gone and I get sad just thinking about leaving again. 

But I’m super happy I have been home for him to draw silly pictures of me… 


And for Eli to write his name!!!! 

Suuuuper proud Mommy moment!! 😍😍

There has been a few changes of raising Eli with my limitations. Some good and some more challenging. But I guess no matter who you are, there’s always challenges being a parent. Eli has continued to shine with helping me with tasks, but he has also picked up the habit of ‘turning off his listening  ears’, refusing to pick up his toys, and running away from me when I’m trying to get him ready. I can’t get mad about this behavior because it is completely normal for a 3 year old to act this way, but I do get frustrated especially since I can’t chase him around the house. I remind myself often….”It’s not his fault I have FA. Don’t get mad at him.”  There are times I just sit there until he decides he’s going to come to me and let me get him dressed. A 3 minute task turns into a 20 minute fiasco.  

Like I said, the good out weighs the tough times and his kindness will give you the biggest smile. Eli absolutely loves when I have to bust out the wheelchair because that means free rides for him. He hops right on top of my lap and enjoys the ride! At least one of us enjoys being in a wheelchairπŸ˜‰

When we are home by ourselves, Eli jumps up to give me a hand & helps me up if I have fallen “Are you okay mommy? Here, I’ll help you!” 

Or when he wants me to go down the stairs, he figures out a way to help out… 


Any way, I can’t wait to get back home to celebrate our very quiet and laid back Thanksgiving! 

I hope you all enjoy your holiday with your loved ones and remember…..



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