This morning was exhausting.

I attempted a cute Earth Day craft and Charlie whined and threw his paintbrush on the floor.
I sat down next to him and read a book and he wailed in protest
His good hand stealthily undid his diaper and there was pee on my carpet.
I was tired. Tired of pushing. Tired of trying new things and having them flop. Tired of picking him up all the time. Tired of reading his mind. Just plain tired.
I’ve never run a marathon before. Never even attempted it. Don’t want to. I think a person would have to be crazy to put their feet down on the pavement and try to run for over twenty-six miles. Nutso.
But people do run marathons. They fight their bodies and their schedules and even their own minds to complete a task that they don’t have to do. They push through all that for a feeling of accomplishment. To show that they can do something that not everyone can.

Parenting Charlie is my marathon.

There are days when I went to lie down act like I’m not even there. There are times when I wish it were easier, wish someone else could do it for me. There are times when I just don’t want to do it.

But oh is the victory sweet.
When Charlie’s speech teacher tells me she’s never had a kid go as far with augmentative communication as he has.
When his teacher tells me she thinks cognition is his strong suit.
When he takes a few, hesitating steps in the gait trainer.

If I’d had a normal kid, I would have taken it for granted that he would be smart or gifted. Maybe that’s obnoxious, but it’s true.

If my kid had been typical, I would have applauded his first steps, but I would have expected them.

Yes it’s hard. I can admit that. You question your decisions. You don’t have the energy to move forward. You have to take a break.
But I always keep pushing. Pushing through the pain, the discomfort. I know I’ll find my stride again eventually.

Charlie is my marathon.
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  1. Katy,
    My husband describes it the same way–it's a marathon. And yes, it is so worth it!

  2. I know where you are coming from, today for the first time in a long time I took a nap in the middle of the day. I left Annabelle down stairs on the living room carpet rolling around surrounded by toys and I took a nap – it was glorious – I was physically and mentally exhausted. My body felt like it had run a marathon but not just for 26 miles but a marathon for the last 26 months! Oh but it sure is worth it especially when she has started to get up on all fours lately or she waves hello and goodbye now or at school she walked supported under her arms to the teacher to fetch her picture card. All I needed was a little nap to carry on.

  3. Oh heavens! So true over here too. Sweet, sweet rewards though.

  4. says:

    The things is…you run it so well! All the stuff you try, your creativity, the ways you are always teaching and stimulating him – absolutely amazing. I'm sure you couldn't have it any other way.
    For me, the only way that I can even attempt the marathon is to stay true to "self care". If I don't take a night off a week, if I don't do something for myself – I just can't do it – I have nothing to give. Imagine running a marathon without drinking water! Hopefully you are taking care of yourself too!!

  5. Hearin' ya! :o)

  6. Kristin says:

    My 7 year old got invited to a birthday party.

    It should be no big deal but she has Autism.

    I never thought she'd get invited.

    Special needs can make the ordinary extraordinary.

  7. Candace says:

    This is one of my favorite posts, Katy! The marathon run round the world, lol!

  8. The Henrys says:

    So, so true. I have to keep reminding myself that this is a marathon, and not a sprint. I need to learn to take the time that I need so that I can have a break. If I keep trying to do this like a sprint, I will just crash and burn.

  9. twoboyzzz says:

    It is a marathon and we won with these precious children! Us warrior Moms can all relate! They need us so we really have to take time for ourself and take care of ourself. I used to take no time for myself. It was ABR therapy, ST & OT therapy and more therapy! Then came Ryan. Therapy, Ryan time, therapy etc…. I have changed my ways and am better for it.

  10. GingerB says:

    See, when you say things like this I feel lucky to work full time and be able to put my child in day care and have all my sjupport team say she is just as well off there and I don't need to feel guilty. I am afraid I lack the patience and energy to be with my kids all day every day.

    I think your readers are right, keep training so you are fit for the long haul, and be good to yourself. I am right now trying to get the balance back about how to exercise enough to be strong enough to give my daughter what she needs and not spend too much time on myself. I think I need a life coach!

    Katy, I think you are amazing. The stuff you do with your child just blows me away. I think you shoulod give yourself a big hug, from all of us.

  11. well said!

  12. What our children do is force us to sit back and take notice!

    I understand the marathon… and honestly somedays I just lay low and chill because hey that is what is needed. God rested one day so a little laying couldnt hurt.

    You are doing GREAT!!!

  13. caryanne says:

    so getting this right now! Ben is sick (again) and I'm just so tired. When Ben is sick, that means I get no sleep. Plus, he gets very lethargic and won't do anything himself…which leaves me to carry him. And he's getting heavy!

    Some other commenters have been saying "take care of yourself" and they're right. It wasn't long after Ben's diagnosis that I realized that if I was going to be able to do for him, I needed to do for me first. Kinda like when you're on an airplane, you put your mask on first. So I signed up for Weight Watchers and lost 40 lbs (much easier to carry him around without those extra 40 of my own). And now I'm thinking that some weight training might not be a bad idea. Mommy looks and feels better…And it also makes dealing with a 2 year old that can't walk much easier. It's a win-win!

    Great post. Sorry for the very long comment. Thanks for showing us both sides in this post.

  14. twoboyzzz says:

    I must post one more time. Go to – Comcast on Demand (if you have it)- then to Sport and Fitness. Then go to Exercise TV- click… go to 10-30 min workout…press 10 min! I do it 2x at least 3x a week! It works to build your core strength!
    Try it..only 10 minutes. My son is going to be 7 and maybe 6' (Dads side)I am 5'2 and 120lbs? Help!

  15. I so relate to this, too. For me, the physical endurance is not nearly as hard as the mental endurance required at times. On the hard days, both my brain and heart feel like they will explode. Happily, the hard days have gotten fewer and farther between as Max has gotten older.

  16. I'm one of the crazy people. Running my third this year. The thing is that most peoples vision of marathon is elite runners. I call it the Boulevard of Broken Dreams because where I run at the back of the pack people are broken down and battered and disillusioned but still putting one foot in front of the other. And now being on an epilepsy/special needs marathon, it makes even more sense. Because to finish a marathon as a non-elite runner takes a slow steady non-egotist act of faith. And getting through the days with Emma takes the same steady pace.

  17. That is a great post. It takes courage to write that. It takes even more courage to be a mom every day (no matter if your child has special needs or not). Forget those marathon people. That is one time. Parenting is every day. if they gave out medals I know who I would pick. :-)

  18. Empathy and understanding!

    You deserve regular respite just to recharge those batteries…wish I could clone my folks for you!