"I Know Different"

Once in a while I like to share letters, poems or stories on my blog because they have touched me in some special way.

 

Tonight, the poem below, brought me to tears ...

 

I KNOW DIFFERENT
by Tricia Proefrock

Dear mommy,

... I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do...I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me...I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid...I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me...BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. ♥

Day in the Life of Boogs

Yesterday Jocelyn and I had a super busy/active day, so I thought I'd share what a typical day looks like for us.

 

Unless of course we have appointments

- which we so often do -

or, if she is in a tremendous amount of pain like she is today :|

 

After we wake up {which is typically 4am, but I've been making her stay in bed until AT LEAST 6am} we eat breakfast, take a bath and then get dressed for the day.

{She loves the music and bubbles - we use colored or scented bubbles for that good 'ol sensory stuff - and apparently they are a tasty treat! haha Thank you again Donna Powers for the toy!! She was mesmerized by it yesterday!}

We start the morning off with something fun and physical like swinging!!

{Definitely a fav of hers}

{And THIS, is why I do all that I do!}

We spend time doing preschool stuff such as ...

{Sorting colors & working on some fine motor}

{Matching shapes and colors -- she LOVES the Mickey Mouse shapes as you can see!}

{Name recognition and writing}

{Working out in the stander while making choices from laminated cards &/or iPad to read or sing, pick desired songs like Itsy Bitsy Spider or Wheels on the Bus, etc}

{Practicing walking in the walker with the reward of window painting at the end}

{Using food to talk about colors -- Boogs had to taste them all hahaha The egg was hard boiled btw :P}

And of course we have downtime where we simply play with each other and toys ...



After nap time we try to do several fun, physical activities like ride the train around the house, swimming or since it was so nice yesterday, we got to go for a trike ride!

 

Boogs also gets story time in when daddy comes home so mama can cook supper and pick up a bit ...

 

The evenings end with general playtime, snuggles, cartoons and whatever else we find that's fun to fill the night with.

 

Does Jocelyn understand all the activities we do (ie the matching, colors, shapes, etc)?

 

I don't know.

 

It is very difficult for Jocelyn and she is often not able to tell or show me. But what I do know, is that if we don't practice, if we don't try, if I don't expose her to as much as I can ... then one thing is for certain ... she NEVER will!

 

Some days I get discouraged because I'd love for when I ask Boogs "show me the blue one" or "touch the square" that she would be able to do it without hesitation.

 

Maybe some day!

 

I also know, and sometimes have to continually remind myself, that when you have the combination of vision, motor and verbal issues -- it makes everything a thousand times more difficult.

 

My reward yesterday for all the hard work we did? Jocelyn looked at me right in the eyes for minutes on in. She has a problem with prolonged eye contact, and she kept looking right into my eyes, smiling and "talking" to me. I can't ever remember having that kind of intense moment visually with her and it was by far an experience I won't be forgetting! Eye contact can be very powerful and its something every mother loves and craves, but many never notice because their baby already "looks" at them.

 

That gift was better than any possession I could have on this Earth!

 

Today hasn't been such a great day. Boogs has been in a tremendous amount of pain and I can't figure out where it hurts, why it hurts or how to make her better as heat, a warm bath, massage, meds -- NOTHING -- is relieving her pain.

 

Its absolutely heart-breaking some days!!!

 

So even though today's been tough and relatively unproductive -- ITS OKAY!!!

 

I use to have a problem when we had down days, when I felt like one of us was being lazy, etc ... but I've learned that these "down days" are just as healthy ... just as necessary. When any other kid doesn't feel good, is tired or hurts; they get to do whatever they want throughout the day and my daughter deserves the same whether she can tell me that or not.

 

Hopefully tomorrow will be a great, new day -- and besides, Wednesday is swim night so it has to be good!!! :)

Precious Moments

I don't know if its because I decided to take the day off ...

{ie NO working out, NO cleaning, etc ... I realized today I have worked out 9 days in a row ... it was time for a day off!!}

... or the fact that by "taking the day off," I found myself with a lot of extra time on my hands. I could've been productive, but instead, I watched a lot of videos on Godvine. So many of the videos made me smile, laugh and even cry.

When something unexpectedly brings me to tears, I'm always so caught off guard and feel myself saying "Whoa, Whoa! Who suddenly turned on the waterworks???"

I got to thinking how my family has been dealt a difficult deck of cards and often times its easy to feel like they are stacked against you rather than in your favor. But I realized something today, its how YOU arrange them that makes this life beautiful and to not let what you've "been dealt" choose what life you live.

As I went into Boogie's room to wake her from her nap this afternoon, she was sleeping so peacefully, that I couldn't bare to wake her. So instead, I scooped her up in my arms, came into the living room and sat in the recliner. As I waited for her to slowly wake up, I found myself relishing every precious moment ... feeling her body move with each breath she took, how sweetly her hair and skin smelled, her warm breath on my face and how I could kiss her over and over.

{The bridge of her nose is my favorite spot to kiss her}

 

Before I could stop them, tears began to roll down my face!

All I could do was look at her, breath-in all of her essence and feel total, complete love and gratefulness for her!!! There was an overwhelming since of pride, joy and love for everything she is in this moment and for whats to come.

 

Every moment with her is quite literally so precious to me!

It doesn't matter what cards have been dealt ... I have my Jocie-Bear!!!

Week in Review

Lots has been happening around here this past week! Well, in our little corner of the world! :)

A mixture of play therapy ...

{Her face in the last picture cracks me up so much! Like she's saying "Moooom" haha}

Which is all so exhausting ...

A little roughhousing ...

Plenty of snuggles ...

Making some juice for the morning ...

{Apparently even the can tastes good & its fun to soak mamas shirt!}

and some plain 'ol bit of discovery time {inside the fridge no less!}  ...

{Kids get in the fridge all the time -- since JBoogs can't on her own, I thought it was time! First things she goes for? Bacon-n-Eggs! Good girl!}
--Also, for my past KDOA friends/co-workers and any other nursing friends, the syringe thats in the fridge, on the shelf, under the bacon? It sat there merely for a second, so no worries!

Hoping we do lots of the same stuff this week!

Enjoying this beautiful Sunday and I say ...

BRING ON A NEW AND EXCITING WEEK!!!

GoMighty.com

Go Mighty?
          What the heck is that?
                    If you're anything like me, you didn't know that this is a website which is designed for people who want to connect &/or collaborate to do something good for themselves and others.

Basically, Go Mighty helps a person, if they so desire, to create a "Life List" or "Life Goals" that they would like to accomplish or complete during their lifetime. They provide a mechanism to outline a persons goals and dreams, track their progress towards checking those items off that infamous list, challenges their personal status quo and all the while keeping the person inspired.

The awesome part? {as if this entire concept isn't awesome enough on its own}
          These personal goals can/could be funded through sponsorships, grants or donations!!!

Is that not absolutely fantastic??!!!

 

I want to introduce you to a beautifully, talented woman named Megan Peters. Among other things, Megan has a weblog {www.crazybananas.com -- and yes, she calls it a "weblog" because she's been doing it for nearly a decade!}, works in professional services marketing and is a phenomenal photographer, wife and mother.

 

As part of Megan's "Life List" on Go Mighty, she's accomplishing her goal to photograph 15 mothers by the end of January, and share a portion of their story in the effort to honor and display the essence of motherhood. The company Olay {you know, the mega company that makes facial products? haha} selected Megan's goal and decided to sponsor her, so if she completes her goal of photographing 15 mothers by the end of January, they will donate $500 to a women-focused charity of her choice!

LOVE!

So why am I telling you about all this?

My friend, Kristi Fogarty, recommended us to Megan to participate in her project.

 

Megan choose us as a "mother" candidate!

I feel so honored!!!

 

Here are some outtakes that she posted on her blog. Below you can see 4 of the 15 women photographed.

{In our picture, Jocelyn was making the choice to sing or read ... she clearly loves BOTH activities. For the final product, Megan selected a picture of us singing.}

Megan came to our house, photographed us playing and interacting, and posted the picture of her choice, along with our story, on the Go Mighty website.

 

Forewarning, she has been summarizing the women's stories to go along with the picture, but she decided to post mine in its entirety ... so its a little long.

 

{I get long winded -- I can't help it -- and its hard to put your life in a nutshell}

 

Here is the site where you can see our picture and read our "story" <-------- click here! :)

 

If you are interested, once you are on the website, you can click on the "My Goal" box that's located on the right-side of the screen and read about the other lovely ladies as well.

 

I loved participating in this special project, sharing about our lives and meeting a new friend.

 

Thank you Kristi for suggesting us to Megan, and to you Megan, you have an incredible talent and pure heart that is beautifully transparent. Thank you for selecting us to be apart of such a heart-felt, personal goal.

 

A picture of a mother with her child needs no words

 -- its speaks for itself --

and often tells the story of a relentless, true love!

Keeping with the Theme ...

... of Christmas in January, I FINALLY scanned Jocie's pictures that were taken with Santa during December.

Below, is the picture taken when we went to the Topeka mall to see Caring Santa. Although it was suppose to be a time where things were set up for the parents and children with special needs, it turned out to be pretty busted because it was anything but that. Very loud, choatic, rushed and all around not a good experience for Boogie as you can see.

I didn't think we would have a chance to see Santa again, but then luckily, our TARC family had their own Christmas party {I think they called it a "Holiday" or "Winter" party because well, they have to be politically correct ... yes, I just rolled my eyes! haha}.

 

I blogged about the party back in early December -- click here if you want to read about it! :)

 

Our TARC coach, and beautiful friend, brought us our copies that they took of Jocelyn with Santa.

Here ya go!

{This one makes me giggle! He truly was the best Santa I've ever seen -- so natural & loving}

And then of course we took this shot ...

{Thank goodness they gave us copies -- my camera just isn't fast enough some days!}

 A little off subject, but the best thing I came across this morning?

This beautifully, stunning picture of our sweet babygirl from this past Summer 2012



{I know every mother thinks their children are beautiful - as they should - but gosh, something about this photo just makes me feel like I'm looking at the face of an angel!}

 

Christmas in January

This last Saturday we finally celebrated Christmas together with the hubby's side of the family ... we waited for quite a while because Kevin, Justin's brother, was going to be home mid-January and this way we could celebrate with him.

The three of us headed over to Wichita early Saturday morning {always feels like such a long drive for some reason ... but its so far for people to come see us too!}, stopped by the mall real quick to look for some much needed jeans {that I STILL couldn't seem to find ... I don't have an odd size ... apparently just the popular size!} and then headed over to the sister-in-laws house.

We arrived to an already full house with Justin's mom, step-dad and grandparents there. The house was warm and smelled good of yummy homemade gumbo and cornbread {a definite plus since it was bitterly cold} ... made everything all the more inviting! I know I already said this on Facebook, but great job on lunch Aliene, it really was tasty!

Even though Jocelyn was tired, cranky and in desperate need of a nap;
          and even though it was a short visit with Justin's mom and grandparents;
                    It was fun to chat a bit, open presents and enjoy one anothers company!

Justin's granddad was the sweetest too -- he's always a hoot! I know some might not appreciate his humor, but I sure do. When I sat next to him, he told me that when he saw Justin walk through the door and "some girl" behind him, that his first thoughts were "who the hell is this new woman with my grandson ... I thought I was about to have his ass because I didn't think it was you." He's so funny! He told me he loved my new hairstyle and that I seemed like "a whole new woman."

Compliments are always nice to receive aren't they?

 

After round 1 of Christmas, us big kids sat around chatting, watching some TV and catching up with one another since it had been so long since we've spent time together. To be exact, it had been 2 1/2 years since we had last seen Justin's brother Kevin!!! Crazy huh? Far too long! We've missed you Kevin!!

Then later after Jocelyn's much needed long nap, Justin's dad and step-mom came over to spend time with all of us. After they got there and everyone got themselves dressed {more importantly -- we got the little monsters dressed! ha!} we all headed into Wichita to get family portraits made.

We weren't sure how Jocelyn would do with such a big group, it being later in the evening, in a strange place and lots of new noises; but she did surprisingly well. It was hard to grasp her attention at times, but between her having a hard time focusing and the Powers boys excessive blinking, we had some good laughs!!

Pictures really didn't take too long which is always nice. We started at 6pm, had them in our hands, and back at the house by 8pm-ish. Not too shabby huh?

Once we got back to the house we enjoyed yummy calorie-free pizza {I say it was calorie-free ... so it was}, hot wings and opened more presents. Between both sides of the family, Jocelyn made out like a bandit! She really is going to love all her books and clothes.

One of the most memorable parts of the day was after we took pictures {and I gulped down a big cafe latte from Panera}, was getting to see Ethan, my nephew, rock his dancing moves. I know my sister and brother-in-law wanted to kill me {they think I'm a bad influence about 99% of the time}, but everytime I'd say "shake it baby shake it" and lay down a beat for him, he would shake those hips and butt like nobody's business!! It truly was the most hilarious and cutest thing ever!! I shouldve gotten it on video or something because its bound to make anyone smile. And besides, it'd be awesome to use as blackmale later! haha I'm his aunt ... I'm suppose to have this kind of ammo!

By the time everything was said and done, it was 10pm and everyone was exhausted! Considering I had been up since 2am that day and still going, I was pretty impressed. Thank goodness for some strong coffee! By this time, I was also super thrilled Jocie had a long nap. We changed Boogs into her footie PJ's and loaded her, along with everything else, into the van. We had plans to stay at the AirForce hotel, but Justin changed his mind and we ended up driving home. It wasn't too bad with Jocie passed out and after driving the first hour, he took over and brought us on home while I caught a nap.

It was a wonderful, relaxing Christmas with everyone and I'm thrilled with our pictures! Thank you again Greg and Kristi for the photos! I can't wait to hang them!!!

Here are a few of the ones we took -- enjoy! :)

{We haven't had one of the two of us in a really long time -- Makes me smile!}

{Look at our little stinky's face!! hahahaha I love that look! Ha!}

{Love her sweet face and smile!}

{The 3 grandkids: Emily, Jocelyn & Ethan ... all of us LOVED this one!}

{Last time we all had pictures together was Christmas 2005 -- it was time! This isn't the picture that we all picked because Gary's eyes are closed, but I love everyones smiles ... especially Grandma and Boogies. We've all changed so much!}

  

 

{A father and his sons! A bunch of good-lookin' fellas!}