Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, October 31, 2012

Think before you judge


I got this in my email yesterday and had to share. Couldn't agree more.

Think before you judge. 

"Today, a lot of creatures will visit your door. Be open minded. The child who is grabbing more than one piece of candy might have poor fine motor skills. The child who takes forever to pick out one piece of candy might have motor planning issues. The child who does not say "trick or treat" or "thank you" might be painfully shy, non-verbal, or selectively mute. If you cannot understand their words, they may struggle with developmental apraxia of speech. They are thankful in their hearts and minds. The child who looks disappointed when he sees your bowl might have a life-threatening allergy. The child who isn't wearing a costume at all might have SPD or autism. Be kind, be patient, smile, pretend you understand. It's everyone's Halloween. Make it a special night for each child!"

-- Unknown






Tuesday, October 30, 2012

Out of the loop

My life has been crazy, no other way to put it. With Karter's preschool, Karsen's therapy appointments and all of his other appointment, and training for a marathon, I have no life. No life, meaning I don't get time to catch up with my girl friends. I recently started feeling like I've been put on the back burning, not intentionally, but I feel like I'm there. I'm so blessed to have so  many supportive, loving friends in my life and couldn't be more grateful. I just feel as if I've lost that friend bond somewhere in the mix, with many friends. I don't get many random phone calls just to chat it up, or invites to get together for a laid back day. It's been a hard thing adjusting to our life now. I still have my days of missing my easy going life, but I also wouldn't change what I have now. People get busy, life changes, you just have to roll with the punches, which I feel I've done pretty well. Until recently. I miss my friends, I miss impromptu play dates, I miss going for walks, I miss normal conversations. Life has just gotten too busy. I was starting to feel as if I couldn't let Karsen even be just a normal baby. I decided something needed to change in our schedule, something so I could have a free day to either stay home ALL day or go over to a friends house or plan in impromptu play date. :-) So, here's what our schedule WAS:

Monday: PT at 11:00 (this is our easiest day, but it's smack dab in the middle of our day and naps)
Tuesday: Karter has preschool (8:30-12:30) OT for Karsen 8:00am, Play group therapy 11:00-12:15 Somewhere in this day I have to fit in a 5 mile run
Wednesday: PT at 11:30 (again smack dab middle of the day) fit in an 8 mile run somewhere
Thursday: Karter has preschool (8:30-12:30), this is also usually the day I have doctors appointments for Karsen
Friday: OT at 11:00 and home visitor also, and fit in a 5 mile run
Saturday: my hubby works every third Saturday (this is new and so nice that he's not there more than that) and the usual birthday parties
Sunday: My long runs (I'm up to 18 miles)

We've dropped PT on Wednesdays so we can have a fun day. Although, there are some weeks where Monday didn't work for our PT so that week we'll have Monday for a fun day. 

Looking at this and writing it out, I think "Ok It's really not that bad. Why do I feel like I have no life? Why do I miss my friends so bad?" I think I'm partly to blame for my lack of friendship (Ok, mostly to blame), I've been boarding myself up at home and almost avoiding catching up. I'm not quite sure why. It's been hard for me to admit my conversations will never be normal again, I will always be a stress case, and for the most part I think my friends get that. I miss the regular conversations about milestones and how toddlerville is, but we aren't there. We aren't in toddlerville, we just got out of newbornville. There are some days I would fear for just being a mess, crying my eyes out the whole visit (that's not fun at all). I also miss working, I know weird, right?! I miss the conversations, I miss the time out of the house, I miss feeling successful. The thing I miss the most? I miss being me. Have I completely lost site of how fun I can be? I think I've forgotten how to let loose, forget about all of the medical crap. So, I guess, yes, I've lost site and I think I'm the one putting myself on the back burner. So, to all of my friends, I'm sorry I've lost my sizzle, I'm sorry I've stopped chit chatting, I'm sorry I've been a crappy friend, I'm sorry I've lost site of myself. Time to bring myself back. Yes, my life is crazy busy but now I've got one free day! So, be prepared, I'm setting up my calendar to plug in some Jaimie fun. Why? Because I flat out miss you guys!!!! Love you all so much, and thanks for dealing with my crazy (or should I just say me being crazy).

How'd I get so lucky to have these silly boys in my life?!

Friday, October 26, 2012

Cuddle with me

"Mom, will you cuddle with me?" Those were the sweet words that came out of my three year old's, Karter, mouth this morning. Oh geez kid! Boy, do you know how to pull at my heartstrings. I was just about to hop on the computer and go about my usual morning routine of emails, bills, and reading my blogs I follow. Karter has never been a cuddler, but recently has decided he enjoys it (I soak it up!). Yesterday, I talked about living with no regrets, living in today. Well, today I will be taking my own advice. I plan on doing no work and all play. Today I plan on cuddling with my boys, enjoying every second of them being this small. Time goes by too fast, I know all too soon, Karter will no longer want to cuddle with me to be out playing with his friends. So, soak up today, put those chores off until nap time, or maybe even tomorrow. If you knew today was  your last, what would you be doing? 

Here's a few idea's I have floating around in my head for today:


Build a fort, turn off all the lights and bring flash lights in the fort


Play with play dough or even make it from scratch

Play dress up (in our case we'll be doing capes and super hero gear)

Play cars

throw a football around, or kick a soccer ball

Jump on the trampoline

Bake cookies

Read some books (maybe in your fort)

Color

Paint

Do a sciency project off of pinterest (you know you've pinned something)

Play with legos or blocks

Do alphabet flash cards or work on writing

Go on a nature walk and bring a nature scavenger hunt list


Roll a ball around between all kids (this maybe be challenging but very good for both boys)


Sensory bin fun (rice, beans, noddles in a Tupperware and throw some cups and spoons in there for them to explore with)


Cuddle while watching a movie


Have anything to add to the list? I'd love to have more on it. 
Happy Friday! Enjoy your day, ignore your chores, and live in the moment.








How could you not want to cuddle with that?!