I always loved this saying! I use it often with CJ when he is struggling with something and wants to give up. We have watch Nemo and Dory so many times that it’s a phrase he can put meaning to. He knows when I say it that I expect him to try his hardest and not give up.

I also use it as a pep talk for myself. There are days I find I am headed toward a dark hole that I just can’t allow myself to go down. Days of frustration, because despite five years of figuring out what works best for Ella, she still throws us curveballs. The seizure was a big one. While we did see more and more episodes, nothing could have prepared me for that morning.

As a special needs parent you are always on high alert. There is unpredictability each and every day. Some days I have gotten so frustrated that I throw the kids in the car and drive over to my parents. Ella may or may not be screaming the entire way but I know when I get there, I will have a moment to myself. Steve works crazy hours and isn’t always home. It’s hard dealing with Ella solo sometimes and I am not too proud to admit when I need help. A change of scenery usually does us all good. I am so thankful my parents are always willing to help and live so close.

Just keep swimming are also the perfect three words to describe Ella’s daily life. To see how she takes on each day, and watching her try her hardest to do as much as she can, is truly magnificent. We take for granted our ability to walk and talk. If I want a drink, I can walk to the fridge and get one. If CJ’s ear is bothering him, he can tell me and we can get it checked out.

Ella doesn’t have the luxury to do either one of those things. She handles everything that comes her way with such grace. The moments that she is having her meltdowns, I know it’s because something is bothering her. If we can’t figure out what’s going on then she has her own techniques to work through whatever it is. What I wouldn’t give to know what’s running through her mind.

That has become one of the hardest things for me to wrap my head around. Not truly knowing where Ella is on a cognitive level. There are definitely some motor planning deficits that make it even more complicated, but I swear she is aware and understands most things that are going on around her. She laughs at the appropriate times, and is very focused on what’s happening. Even just talking to her, she looks engaged. Measuring that cognitive piece is so difficult though. I am hoping it comes through when we are able to get her a communication device. Another appointment that has been put on hold indefinitely. Ugh. 

I find positivity is a huge part of what helps me get through each day. I would be foolish to think with three children they are all going to be fantastic. I also know that every moment of every day isn’t going to be horrible, and do my best to remember at the end of the day, more good than bad. For us, planning is great, but flexibility is even greater. Luckily we have people in our lives who understand that, and are good at adapting.

Tomorrow we are going to spend time with family we have not seen for awhile. I am excited to see some fresh faces and know the day won’t be lacking in laughter. It’s going to be a good recharge for us all.

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