Day 2 at Home

I know by now you’re all wondering what I’ve been up to now that I’m home, besides loving balloons like these that I got FROM MY SCHOOL!!!!  I have THE most supportive school in the whole world!

Rainbow Balloons from my school


Mostly, I’ve been enjoying being with my family. I do spend time relaxing because I get so tired so quickly. Every day I have at least one visitor. Or, at least one visit. Today, my very good friend (A) came over with her sisters, her Mom and one of my favorite teachers. They sat around and talked while I showed her sister my train track. I even let her sister play with me by sharing my cars for the train to crash into. That’s a pretty big step for me because I generally don’t like anyone touching my trains or setting up my “scenes” except Mom.

Yesterday, my two best guy friends came over. I’m sure you’ll be surprised to know we watched train videos together. These guys love them as much as I do! Yep! We’re pals!
Then later a few neighbor girls came over with a meal they made for me and a fun and soft firetruck blanket that they put together themselves! It was amazing! I loved it so much, I wanted it on right away (I was resting and watching B play video games) and slept with it that night.

I realize that people don’t really know what to expect when they see me. I hope to be able to share that with you in the coming weeks so it all makes more sense. Until then, I can tell you that this is what’s hardest for me right now:

  • When I do a lot of walking
  • When there’s too many people for too long
  • Or just too much activity around me
  • I can’t see clearly since I’ve lost the right side of my eyesight in both eyes (something that won’t return)
  • Watching my brother and sister play on the trampoline – which I love to be on. My head just can’t handle the jarring so I can’t go on it
  • Walking generally because I’m wobbly and sometimes can lose my balance, though most times, I do pretty darn good
  • Stairs
  • Holding anything in my right hand, though I still try
  • Being in bright lights. Sometimes I can handle it, depending how much light I’ve been in already.
  • Heat
  • Running into things on my right side because I can’t see them

Too Tired to Walk

I am able to express myself better when I talk without getting completely frustrated first. I’ve been able to tell people to stop or not to do something; I’ve been able to tell Mom and Dad when lights are too bright for me and when I’m tired. I’ve also been able to sneak myself into their bed a LOT more often… which is SUCH a bonus! There’s nothing like your parent’s bed!

… and, when my new train derailed and Mom was fixing it, she said “shoot”.

So, I said, “$h!t” (quite happily I might add).

Mom quietly said that I can’t say that word but I can say “shoot”. So, I did and she seemed happy with that. But, between you and me… it’s funnier to see Mom and Dad’s reaction when I say “$h!t”, so I might just have to say that at least one more time.

6 Responses to Day 2 at Home

  1. Lofquist Family says:

    Keep up the good work Jackson! You and family are courageous and an inspiration to us all. We continue to keep you in our thoughts and prayers.

  2. Kristen says:

    I loved reading this Jackson! I’m so glad to hear that you are doing well! I laughed out loud at the “shoot” story. 🙂 Thanks for sharing.

  3. Raquel aka Auntie says:

    And for his next trick…J is going to…drum roll…amazing…just amazing..shit..I mean shoot…shit..I mean shoot..just amazing…Go Jackson!!

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