Arkansas Naturals Game & Fireworks

Devin @ the Arkansas Naturals Game

Devin's entire baseball team went to watch the Arkansas Naturals...they even got to tour the stadium & be on the field during the National Anthem.  I got to go & also took Logan & my mom, we had a good time.  We really just love to watch baseball!! 

Gans All-Stars Baseball Team on the Arvest Ballpark Field

Devin & his friend Isaac...Isaac got a foul ball

Logan Nathanael

We also got to see a great fireworks show! It seems like every year, around the 4th of July, we always end up at a ballpark that puts on a great fireworks show.  Each time i remind myself that somewhere out there, people are hearing those same loud bangs; only it's bombs & war, not fireworks. I can't help but feel somewhat guilty...like, i'm sitting here in this nice ballpark w/ my family, enjoying a beautiful fireworks show, while so many of our country's men & women are serving in our armed forces, away from their loved ones, fighting for our nation. With every bang & every burst of radiant color, i am reminded that our freedom is far from free. I guess for me, i feel as though our traditional celebrations are borderline bittersweet...i'm proud to be American & i enjoy all of our festivities, but at the same time I feel like maybe we take all of this for granted. I hope as you & your family celebrate the 4th of July this year, you will take the time to remember those that have made our freedom possible...those past & present.  

   

i AM thankful for my jocelyn...

apparently i need to clarify that i AM thankful & blessed to have jocelyn in my life.  it's amazing how some people become so critical of our words or feelings even though they themselves haven't walked even one day in my shoes.  i guess i should begin by explaining why i feel this blog is even necessary...well, i posted on my FB wall yesterday a little update that went like this:

"i HATE Angelman Syndrome :( 4 all of you who will be enjoying this weekend w/ your family by going on vacation, or camping, heading out for a fun day at the lake, baseball tournaments or just about any kind of family fun...well, please have a silent moment 4 me, as i will be stuck in this stupid house as ALWAYS!! not sure why God chose me to deal w/ this, but i keep trusting that He has a plan for me & jocelyn..."

ok, maybe that was a little much...but last i checked it is MY Facebook page & i'm entitled to post whatever i may feel like.  and at that point, that is EXACTLY how i was feeling.  & trust me...if any of you had to personally deal w/ Angelman Syndrome (AS) the way i do...well, you would HATE it as well.  let me tell you why i even posted that little update yesterday:  well, we decided to go out to Short Mountain Cove where my dad was camped out.  we were only going to be there for a little bit, just enough time to get out of the house for a change.  well, it's just so stinking hot in june in oklahoma, so poor little jocelyn can't handle it (which i knew would happen, but john insisted we all go, trying to include joce in everything...) needless to say, she got SICK...mega sick, puking like crazy from all the heat.  just another reminder we can't do all the normal things that families enjoy together.  we had to leave the minute we got there...frustrated to say the least.  that's why i felt like i did yesterday, everytime we try to do something as a family, stupid Angelman Syndrome ruins it for us!!!

just because i HATE her disorder, doesn't mean i don't love jocelyn or feel blessed to have her in my life.  i just feel more comfortable w/ her in our little haven...our own home.  for those of you who take it upon yourself to so quickly judge me...let me ask you this...do you have to make EXTREME changes to your life, do you have to give up family outings because your child absolutely cannot function in the heat or gets too overwhelmed in crowds?  do you have to avoid restuarants because your child is very loud, making strange noises & distracting to the point you get MANY MANY stares from the others there?  do you have to avoid hiking trips because your child is in a wheelchair which makes hiking trips dang near impossible?  do you avoid family vacations because your child cannot sleep anywhere but their own bed?  do you still have to diaper & dress any of your children that are age 7 or older?  do you have a child age 7 or older who doesn't walk or talk at all?  have you given up your career so that you can take your child to numerous therapy appointments & see all kinds of specialists in order to care for your child's disorder?  have you watched your child lie in a hospital bed having seizure after seizure & there's nothing you can do about it?  i can think of tons of other questions to ask you as well, but it's really not worth it...i mean, i know your answer will always be no.

so, maybe you shouldn't be so quick to judge my attitude regarding AS.  i'm so beyond entitled...i live this complicated life on a daily basis, have been for the past 7+ years...cut me some slack.  & don't ever assume i don't love my daughter or feel blessed to have her.  i am tremendously blessed to share this journey w/ jocelyn, i'm just saying it's a tough road & sometimes i long for normalcy...the normalcy you & your family experience. 

(for all my fellow SPECIAL NEEDS moms, please know that i admire all that you do.  i know that you have endured the same as i have & for many of you, you have endured even more...i want to thank each & every one of you for being there w/ me on this journey & giving me all the support & encouragement you have shared w/ me...i will do the same for you as well!!!  LOVE YOU GUYS!!)

My Dream of the Angels

"My Dream of the Angels"

There are many kinds of angels.

Some have robes & golden wings.

But some angels live among us,

who are known for other things.

These angels make no music,

They do not sing or even talk,

Their dance is far from graceful,

And some angels cannot walk.

Restless hands can paint no pictures,

Play no harps, yet all the while,

Angel voices chime with laughter,

Every face glows with a smile.

These angels need our love & caring,

Those laughing hearts are not alone.

To learn, to grow, in health & comfort,

Each has an angel of their own.

I had a dream that all the angels

Danced & sang for all they're worth.

I know they will someday in Heaven,

But in my dream they sang on Earth.

~Anonymous~



Summer Fun

Jocelyn Abigail having some SPLASH TIME!!

well, the weather has finally caught up with the season...it's SUMMER & it's HOT!!  i bought the kids a little wading pool to put in the backyard, just something to try to keep them cool.  jocelyn has enjoyed it the most...she's been having tons of fun splashing around in her little pool.  it's amazing how a $10 kiddie pool can put such a HUGE SMILE on her sweet little face.  check this out:

i LOVE her beautiful smile...

i'm just glad that she's able to get outdoors & have some fun.  it's been so hot & sunny lately & i always worry about her getting heat exhaustion or a sunburn.  but this little pool has been great fun & entertainment for her.  i love seeing how happy she gets just splashing around in the water.  maybe by this time next year i will have FINALLY convinced john into getting the pool of our dreams...or at least one that the entire family can enjoy.  (these tiny little wading pools aren't cutting it for me...LOL!!)

the lazy days of summer have only just begun...

9 Hours @ the Ballfield & What Do You Get???

Logan showing off his medal

we spent this past saturday, ALL DAY, at the ballfield for logan's T-ball tournament.  we had to be there by 8:30am, needless to say we were up & at it EARLY on saturday morning.  logan was pumped & ready to get some big hits, or as he says, "jack it to the fence."  he did a great job batting & playing 1st base, he's definitely gonna be a baseball star, just like his big brother!!  (oh yeah, big brother devin had a game to play in stilwell, so we had to miss his game.  had to send him w/ another teammate...he WON by the way!!)  logan's games started at 9am & well, after several hours of sweat, gatorade, & determination, he finally got to walk away with a 3rd place medal.  as we were walking to the car, i thought to myself, "9 hours at the ballfield & this is what we leave with...a 3rd place medal & a sunburn..."  logan sure was PROUD of that bronze medal though & i was PROUD of him!!!

Logan Nathanael Weese

Derek & Logan

Sallisaw All-Stars T-ball Team...Memorial Weekend Tournament 2011

a little pink cross...

"Every good and perfect gift is from above."

James 1:17

Every morning when i get jocelyn ready for her day & every night as i'm getting her ready for bed i see this verse...reminding me how perfect and good this little princess truly is.  you see, right beside jocelyn's changing table where i tend to all her diapering & dressing needs, i have hung this little pink cross which bears that sweet sweet verse.  my mother-in-law actually found that cross at a yardsale.  knowing that it was a perfect fit for joce's room decor, she bought it for me.  when she 1st gave it to me, i thought, how cute...& hung it in joce's room not thinking twice about it.  but as time went by & the frustrations of dealing with joce's Angelman Syndrome grew & grew...well, i think God used that little pink cross to speak directly at me.  "Every good and perfect gift is from above."  i guess i needed to be reminded that God doesn't make mistakes, He didn't give me a defective child...He gave me His handiwork that He created PERFECTLY. 

i struggle each & everyday with difficulties that arise from Angelman Syndrome.  sometimes i even feel like God can't stand me.  i wonder what He was thinking by making my life so difficult.  every morning just getting jocelyn dressed & ready for her day can be almost over-whelming & the stress just sets right in.  i begin to feel angry & sad & ready to say "forget this" & just walk away from it all...& then i see that little pink cross & read that special verse & suddenly i'm reminded that jocelyn came straight from God, therefore, she must be perfect & good.  all of His creations are perfect.  i can't help but believe that God led my mother-in-law to that little pink cross at that yardsale because He knew how much i needed to see it at the beginning of each day...God truly works in amazing ways!!

how lucky i am to have a relationship with God that allows me to feel sadness or even anger & ask Him why it has to be this way & He will actually speak to me.  He speaks to me in many ways, but today i just felt the need to share how He speaks to me everyday thru that little pink cross in joce's room.  especially after the rough day i had yesterday...trying to take her to logan's T-ball tournament.  needless to say, it was AWFUL!!  it's moments like those, where she's screaming & crying & downright miserable at a tournament, a place where many other families are there having a great time together, again i am reminded that joce is different.  that my life has to be different & challenging just because of her stupid Angelman Syndrome...so yesterday i had a pity party for myself...because i'm only human & sometimes i feel hurt.  but when i got home & got my little princess ready for bed, i looked to the little pink cross w/ my daily reminder that she is PERFECT just the way she is...& for that moment, as i read that verse, life didn't feel so bad after all.  i LOVE you jocelyn abigail weese...more than you will ever know!

Logan's Thoughts on MOM...

i asked logan several questions about myself...just to see what his "Thoughts on Mom" would be.  this is his answers:

1.  What is something mom always says to you?
     Clean your room

2.  What makes mom happy?
     When i pick flowers for her, but not her tulips.  (i LOVE this answer, because last year i was so excited when my tulips, my FAVE flowers, finally came up...then logan surprised me one afternoon by picking ALL OF THEM for me...i wasn't too happy about that)

3.  What makes mom sad?
     Sad movies cause she cries

4.  How does your mom make you laugh?
     She tickles me sometimes

5.  What was your mom like as a child?
     I think she liked to watch TV alot

6.  How old is your mom?
     36   (got that one right...of course, he asks me all the time & yes, i'm honest...LOL!!!)

7.  How tall is your mom?
     10 feet tall

8.  What is your mom's favorite thing to do?
     Read a book  (i love that my son truly watches what i do...i hope my reading sets a great example for him...)

9.  What does your mom do when you're not around?
     She does dishes and her workout videos and then she buys jocelyn clothes & stuff  (this answer kinda made me sad, i mean, does he seriously think i always buy jocelyn stuff & not him or devin...i try to keep it pretty equal, maybe i need to work harder on that)

10.   If your mom becomes famous, what will it be for?
      Cause she's real smart and she makes good cinnamon rolls

11.   What is your mom really good at?
     Cooking

12.  What is your mom not very good at?
     Shooting guns  (ok, i found this to be a very odd answer...however, i'm sure he's absolutely correct!!!)

13.  What does your mom do for a job?
     She waters her flowers  (WOW!!!  shocked to find out that's what he thinks my "job" is...sure wish i got tons of $$$ every time i watered those things though, that would be nice)

14.  What is your mom's favorite food?
      Taco Cabana  (not sure where that answer came from...but they do have good stuff!!!)

15.  What makes you proud of your mom?
     When she gets me presents

16.  If your mom was a cartoon character, what would she be?
     The girl smurf cause she watched that when she was little & she lets me watch it on youtube now

17.  What do you & your mom do together?
     Cook

18.  How are you & your mom the SAME?
     The same skin

19.  How are you & your mom DIFFERENT?
     Our haircuts

20.  Where is your mom's favorite place to go?
     Hobby Lobby  (this sweet child knows me too well...)

21.  How do you know your mom loves you?
     She gives me hugs

22.  What does your mom like the most about your dad?
     He goes outside to smoke cigarettes cause he can't smoke in the house  (that's kind of a sad answer...i mean, i do appreciate that outta john; however, that is NOT the thing i like the most...LOL!!!)


------------------------------------------------------------------------

i had fun asking logan these questions & waiting for each response.  it's amazing how the mind of a child works & how they actually see the world they're in.  they're definitely watching each & everything we do...therefore, make sure you're setting the best example possible for them, leading them in the right direction to prepare them for the best possible future.