Mummy & Son Masquerade

I had a blast with my little guy at Yukon's Mummy & Son Masquerade last night!  These little date nights don't happen near as often as I'd like, but I eat them up when they do!  Parker is such a fantastic kid.  He is so much fun to be around and always keeps me laughing!  He is so patient and so kind (not always, but he is!)  I love it that he acts like date-night-with-Mommy is a pretty big deal...he doesn't take a single minute of it for granted.      

He was his little Super Hero-Pirate-Ninja self and I was his Tae Kwon Do side-kick!

(mind you, that is a legit purple belt ~ earned my Senior year of high school ;) 

He wanted me to take a picture of his purple-icious lips after his ghost cookie 

We ran into some sweet friends while we were there!

 And these two pirates won 3rd place in the couples costume contest!

 best superhero stances...perhaps ;)

 see what I mean....Keeps. Me. Laughing. !!!

I love, so much, how patient Parker is with me.  He sees me so much with my working-hat or business-hat on...and in his own little way, knows it's hard for me to have fun sometimes.  At the same time, this little guy shares some of my same characteristics and insecurities...we really do 'get' each other.  I love being able to encourage him through the things he finds intimidating..and I love how he helps me live, laugh and love!  In helping him be more confident in who he is and who God made him to be...I end up feeling the Lord nudging me to be more confident in who I am and who He created me to be.

~Whitney

Fall Festival & Creativity!

Well, a little creativity went a long way!  Our little Garden Gnome was quite a hit at the Fall Festival at our church Saturday afternoon.  I had seen a few pictures on Facebook of some super creative parents making adorable costumes around their children and their wheelchairs.  We've been so busy, this wasn't a huge priority, but I did keep it in the back of my mind.  Then my sister sent me a picture of my niece's costume from last year to see if maybe I wanted it for Tessa this year.  Since I didn't have anything else planned, that was perfect!  It wasn't until a few days later, I called my sister and asked her what the costume was exactly...a munchkin? and elf?....AH!...a gnome!

Ironically enough, while the costume was in the mail on its way to us, we were cleaning up a few things in the garage....and I came across the huge box of all our greenery from the old house.  

Suddenly...the creative wheels started to turn ;)

I can't take all of the credit though...cause just as I was planning to make a last minute trip to find some fake flowers to add to the garden...Darin says "you know, Tessa's got plenty of flower bows you could add to all that".  

And so here you have it, a little gnome in her wheelchair garden covered in greenery and hair bows!  And let's not forget Parker...this year he was a Super Hero-Pirate-Ninja ~ thought of by Parker, made possible by Daddy!

 Prettiest little garden gnome I've ever seen!

 I'd trust this adorable Super Hero-Pirate-Ninja to have my back any day!

 I think all of the attention plum wore her out ;)

It all just screams "Happy, Happy, Happy"...couldn't have been more perfect for her ;)

~Whitney

Recent Favorites...

What a difference 2 years makes!

Wagon fun 2010

Wagon fun 2012 

He insisted on holding his sister ;)

he's just chillin

and she's just chillin ;)

Taking her breathing treatments like a champ

~Whitney

A Process....Sanctification

"Here's the bottom line: If God opens the door for you to do something you know is good or necessary, be thankful for the opportunity.  But other than that, don't assume that the relative ease or difficulty of a new situation is God's way of telling you to do one thing or the other.  Remember, God's will for your life is your sanctification, and God tends to use discomfort and trials more than comfort and ease to make us holy."

From a book called "Just Do Something: A Liberating Approach to Finding God's Will" by Kevin DeYoung

My husband shared this with me this morning, and it was exactly what I needed.

Things in life are hard...and it's just too easy for me sometimes to throw in the towel and consider calling it quits.  My prayer today is that the Lord will help me consider that a nudge or an experience is part of the process of sanctification in my life.  Instead of thinking, He needs to fix this and this before I can continue on with what I feel like He's calling me to do...maybe I should consider that the 'fixing' needs to take place in me and that it's possible that this could be the very reason for the experience.

~Whitney

TLC

I love fall and winter and I always look forward to the colder weather!  But what I don't love, are the sicknesses this time of year.  A simple little cold can end up being quite the ordeal for our Little Miss.  She doesn't have a compromised immune system, it's just that she doesn't have the physical strength or mobility that helps the average person fight off little things like this.  This weekend was rough.  We are back in full force with Albuterol breathing treatments every 4 hours and Pulmicort maintenance treatments twice a day.  Tessa does not do well with the extra mucus that comes along with a cold; it tends to upset her stomach and she can also get choked pretty easy once she starts coughing.  The throwing up usually leads to dehydration and the dehydration and loss of appetite can result in a loss of weight.  Load after load of laundry and sleepless nights are stressful and exhausting, but seeing Tessa sick, truly makes my heart ache.  

I would do anything just to take it all away!

Operation Tender Loving Care!   

when we got home from work, Tessa decided  it was time for nap #3 in Daddy's arms.

 and then it was my turn

this is the melt-in-your-arms kind of sweetness

cheesin for the camera after a nice long bath :)

and even had enough energy to wrestle with her brother ;)

It's times like these that I am reminded of how fragile Tessa can be.  She is usually so strong, so vibrant, so determined and so engaged in life that I forget how quickly things can turn.  I am so thankful for her overall health and I just don't ever want to take it for granted!

~Whitney

Tessa's Own Little Party

We have a joke around our house about Tessa having her 'own little parties'...and I finally caught it on video!  Well, there is nothing to see...but lots to hear.  I listed out the video details, for one reason only: the time!  This was literally going on at 3:09 a.m. and it is simply hilarious.

Night Video 1 Details:
Title: VID_20121012_030940
Time: Oct 12, 2012 3:09:40 AM
Duration: 00:23
File size: 7.56MB

Overall, we had a really rough night with Tessa last night.  Darin was up with her from about 1:00 to 2:30 a.m. and then I was up with her from about 3:00 to 4:30 a.m.  Darin definitely got the raw end of the deal, because for that first hour and a half, she was screaming.  Tessa waking up in the middle of the night crying, is not unusual.  We don't really know why it happens, but we can usually go in her room and hang out with her for a little bit, hold her hand, turn on her light-up sea horse, and she'll settle down and go back to sleep.  On occasion, like last night, we completely run out of solutions.  Darin ended up moving Tessa from her crib in her room to her nap nanny in the living room.  From time to time, we attempt to turn on a favorite show, either on the TV or the iPad, and camp out on the couch until she goes back to sleep.  Last night, Darin went ahead and made Tessa a bottle and I think after that, she finally started to calm down.  

Then around 3:00 a.m., it was my turn.  Darin was so exhausted from the endless screaming and crying, he was pushing through it a little harder, to stay asleep during the 'party'...I, on the other hand, went and sat on the floor by our bedroom door so I could peek around the corner into the living room and witness this mysterious event.  It is such a mystery to me.  Her laughing & talking parties are just as much of a mystery as her screaming & crying episodes.

Tessa doesn't sleep with her ears on.  From the very beginning of having hearing aids, we've always wanted to her feel comfortable taking them off and settling down in the evenings for bedtime, without them.  The same is true with her cochlears.  We want her to be able to get ready for bed and have a peaceful night's sleep without her ears on.  The evenings are actually lots of fun; once we take her ears off and get a bath, we usually spend lots of that time signing to her together as a family.  She stays highly entertained and it's fun to have her just all-natur-al!

Just as much as I wish I knew what plagues her during her screams and tears, I so wonder what it is that brings her so much joy and laughter during the middle of the night.  While I'm recording, she is simply laying in her nap nanny on the living room floor.  The tiny microwave light is on low in the kitchen, but other than that, it's pretty darn dark (obviously, because I was pointing my phone at her during the video...and we see nothing).

When Tessa's ears aren't on, she is obviously very visually driven.  That's why signing to her, when her ears are off, is so much fun.  She loves to watch us.  We have always left the bathroom light on between Tessa's and Parker's rooms.  At the old house, their rooms were right there together with just the bathroom in between them.  The same is true at our rent house now.  Since Tessa was a tiny baby, I've always had to be very very careful with my shadow!  I have so many funny memories of tending to Tessa in the middle of the night in her crib and then dropping flat on the floor and army-crawling out of her room.  If she ever detected even the slightest shift in my shadow, it was instant tears.  She couldn't ever hear me leave...but seeing me leave, was incredibly tragic.  It was much easier to sneak out of Tessa's room back in the day when her crib was raised up high.  Sometimes I could get away with just slightly ducking down and running fast out of her room.  Well, now her crib is on the very lowest setting, and it's just amazing to me how fragile our shadows are!

I have been thinking about a lot of different things after being up most of the night last night.  None of which I can really figure out how to express, so for now, I'm just leaving you with a few more sounds of this priceless mystery!  (hold out for 20 seconds...it's a hoot!)

Night Video 2 Details:
Title: VID_20121012_031011
Time: Oct 12, 2012 3:10:11 AM
Duration: 00:33
File size: 11.15MB

~Whitney

Sharing a Mother's Gratitude

I read a very touching post, on another blog that I follow, about children with disabilities and the men and women that serve our country.

Again...worth sharing!

http://baseballsbutterfliesblessings.blogspot.com/2012/10/wounded-warriors-will.html


~Whitney

Today, Refreshed

Jeremiah 31:25
"I will refresh the weary and satisfy the faint."

Today, from Jesus Calling:
"You have been on a long, uphill journey, and your energy is almost spent.  Though you have faltered at times, you have not let go of My hand.  I am pleased with your desire to stay close to Me.  There is one thing, however, that displeases Me: your tendency to complain.  You may talk to Me as much as you like about the difficulty of the path we are following.  I understand  better than anyone else the stresses and strains that have afflicted you.  You can ventilate safely to Me, because talking with Me tempers your thoughts and helps you see things from My perspective.
Complaining to others is another matter altogether.  It opens the door to deadly sins such as self-pity and rage.  Whenever you are tempted to grumble, come to Me and talk it out.  As you open up to Me, I will put My thoughts in your mind and My song in your heart."

Last night, after my walk, I tried to open up to Darin.  The very thing I was trying to explain to him last night, is some of what I pulled from my reading in Jesus Calling, today.  I was trying to tell him how healing my tears were, but how difficult it was to try to talk about it.  It's hard to explain to someone how I'm feeling sometimes... specifically, how I am feeling.  It's hard to let anyone else in on such a tender moment, because I know they can't fully comprehend the sting of emotion.  I know, that more than anyone else in the world, Darin comes the absolute closest to understanding how I feel...but it still falls short.  Even though I could not find the words to explain it last night, I was trying to express to him, this exact frustration...that there is no one that can truly understand how I feel.  I realize this morning, that in that moment last night, I desperately and selfishly, wanted someone to feel the exact same intensity of the sting, as I did.  An unfair expectation and fallible desire of my heart.

Today, how refreshing is it, that the Lord not only gave me the words to describe what I was feeling last night, but He gave me a gentle reminder...  "You may talk to Me as much as you like about the difficulty of the path we are following".  Last night I was confused why I was struggling with sharing how I was feeling, but I think it was a nudge to talk to Him.  I 'thought' a lot about the Lord last night.  I 'thought' about the path we are on and how weary I am, but last night, I didn't talk to Him.

We all feel and experience things differently.  The Lord is the only true One that can understand the cries of our heart..."I understand better than anyone else the stresses and strains that have afflicted you".  I don't think my "Writing Raw" was a mistake.  I don't think a moderate expression of our feelings is wrong.  I do think, the desperation and isolation that I felt, should have been a reminder to me, to talk to the Lord.

Today, for a moment, I thought 'how stupid of me"...but, we are selfish/prideful human beings.  We will never exhaust the need to continue filling ourselves with truth and promises from scripture.  We will always fall short and we will always need reminders that He is there, ready to "...refresh the weary and satisfy the faint".

~Whitney

Writing Raw

I never write raw. I always clear my head and see things better the next day or even in a few hours.
Tonight, I took a walk. A couple miles. Usually it's just me and the kids. Rarely ever do I pass anyone on our route. It's very peaceful and just the way I like it.
Tonight I took Tessa in the wagon and tonight I had to share the road. A sweet little family with two girls...one on a tricycle and one riding a scooter.  The one on the tricycle seemed pretty young...maybe 2, maybe 3. It's funny how when it's a little girl, I seem to lose all ability to guess her age. Tonight, my mind went to an immediate comparison. I quickly transitioned from trying to guess her age....to imagining Tessa riding that little tricycle. The little girl's dad was hollering from behind for her to 'slow down and scoot over'....making way for the crazy lady pulling an empty wagon??....
Next came her sister, riding her scooter...just tall enough to look inside the wagon as she passed, to say, 'ah look mom she's so cute!'
I suddenly found myself walking faster...and suddenly ....tears. Not just a few trickling down my face....more like a fountain. 
I imagine I look a bit like a crazy lady pulling an 'empty' wagon since my sweet little Tessa lays inside and usually ends up asleep by the second mile. That part doesn't bother me...I've grown so used to funny looks and curious eyes. But little girls....goodness...on just the right day, at just the right time, I turn into a waterworks mess.
I felt better. Crying feels good. And when I get around to doing it, it always makes me wonder why it's been so long since the last time.
Maybe the purge of emotion was healthy and necessary.

~Whitney

Look Who's 2 1/2 Today!

Prettiest Little 2 1/2 Year Old I Know!

I'd say standing tall is quite the half-birthday-present!

~Whitney

Inspiration at Its Best

I received a Facebook message the other day from a man named Chris. Chris is a friend of Tessa's nanny, Ms. Kayla.  His kind words and sweet perspective, touched this mama's heart.  Opportunities to see glimpses into God's big plan for Tessa's life ...are a gift.  

I messaged Chris back just the other day and thanked him for sending this to me.  I told him how encouraging it was and that we would be honored to meet him and to let him meet Tessa.  I also asked if he would mind if I shared his message on here (he did not ;).  I still don't feel like I have adequate words to describe what I felt when I first read this, but I knew it was worth sharing.      

Message:

Hi Whitney, my name is Chris and I'm a close friend of Kayla's. Over the last year or so I have kept up with Kayla's photos and posts about your adorable daughter Tessa. Every time I see a photo of her it brightens my day. She has been a huge inspiration to me without anyone realizing it. I've watched her grow over the past year and seen the amazing progress she has made just by what I have seen. I'm a member of the armed services serving overseas on my second combat tour. Seeing her face makes me realize truly what we are fighting for over here and the real sacrifices that are being made. She symbolizes the true freedom of this great nation we call America. I have earned a few medals in my time in the military by struggles and tough times I have overcome. Receiving these medals represents those who unknowingly give me the strength to do what I do. Your Daughter is one of those people. I would love to give one to her as a gift if you would allow it when I return home this month. I will be returning from a 6 month tour in a few shorts weeks and would love to meet her. I hope to hear back from you very soon and if not that's okay too, I just wanted you to hear this. Thank you so much and tell your daughter I said hello.

Senior Airman Christopher Johnston USAF

 ~Whitney

Let's Talk About My Fancy KidWalk

Yesterday was a big day!  My KidWalk was delivered late yesterday afternoon and as always, it was a delightful event :)

Waiting patiently for whatever it is mommy and daddy are all excited about ;)

 The lateral chest pad brackets have been positioned to help support my upper body...

 And the hip support flip up pad brackets have been secured for my lower body.

I also have a little seat ~ to help me keep my legs apart and also for if I need a rest.

An equipment delivery day would not be complete without Ms Melody!  She's helping get my I2I headrest in place so I can do my very best work all on my own! 

Pretty fancy headrest, huh?  It makes it a little harder to get me in this thing, but the way it's designed is perfect for me.  It helps me keep my shoulders up and back and my head up and it doesn't even knock off my cochlear magnets!  Kinda hard to stay motivated to work this hard when I can't hear all my cheerleaders cheering me on! ;) 

 And check out the fancy little red thing under my chin.  This little contraption lets me rest my head when I'm getting tired.  Holding my head up is hard work, but I can go a bit longer and harder if I can focus more on my legs and feet than my head control.

My brother loves to play with me!

 Thought I'd grab hold of him and see if he'd take off ;)

I mean look-at-this-thing!  Quite the contraption I tell ya! 

 It's a good thing mommy and daddy have plans to build us a bigger and better house with my needs in mind...cause I have lots of stuff to help me and not much more room to put it all!

(I'll talk about what Melody is putting on my leg in just a sec)

I drool, and sometimes a lot, especially when I'm working h-a-r-d!  That little red chin pad is awesome, but I may be using a burp rag too so I can stay more comfortable.  I understand, not really fashionable, but sometimes necessary :) 

 Ok, remember Melody down on the ground working on my right leg?  Well, that black thing is this fancy little stretchy-velcro-leg-brace type thingy that is going to help me keep my right leg in a good position.  

See, my CP causes me to have high tone in my legs and sometimes I tend to use my adductor to pull my leg forward instead of using my hip flexors.  This little strap will help me try and learn to use my hip flexors more.  

When I use my adductor, it makes my right foot turn out and then my left foot kinda gets caught on my right foot and I lose the good positioning to take another step.  This strap encourages me to use my hip flexor instead...and when I do that, my right foot stays straight and taking another step is a bit easier.

I'm so glad I have such smart people in my life like Ms. Melody to help set me up for success!  What would I do without her!

I'm excited!  I'm always excited every time I get a new piece of equipment.  I'll be 2 1/2 years old in just a couple days and I figure it's about time I start using these little legs of mine.

I can already picture finally being able to chase my brother around and play!  Sometimes he tries to play with me and dance with me and stuff like that...my new KidWalk will help me play and dance closer with my brother and without as much trouble.

That alone is something worth smiling about :)

I hope I helped explain my new KidWalk a little better.  It's kinda hard to look at me and understand what all I have going on...so sometimes just chatting about it helps :)

If you happen to ever be driving by my house...be sure and roll your window down.  There's gunna be lots of whoopin and hollerin in my driveway now cause Mommy, Daddy and Parker are the best cheerleaders in the world!

Keep watching, because I'm super excited to figure this thing out.  I know it could take some time, but I've been given everything I need to be successful!

here's a sneak peek...

I told ya I had cheerleaders!

~Tessa ;)

PWC Progression

Well, on Monday afternoon, Tessa had her final Power Wheelchair Evaluation for the study she has been in for the last year.  To say I am grateful for what the study has provided our sweet girl, would be an incredible understatement.  I can't imagine what life would be like had we not had this amazing opportunity.  

Ms. Lorrie came out on Monday afternoon to perform her final evaluation and we were finally able to tell her which group of the study Tessa was in!  Lorrie performed the original evaluation in September of last year, then one at the 6 month mark and this final and third one, at the 1 year mark.  We have had to keep it a secret which group Tessa got in...the control group, or the group that got a chair.  Lorrie has done each evaluation based solely on the progression of Tessa's overall capabilities regardless of the study groups.  At the very end of the appointment Monday, after all the paperwork had been completed, Lorrie said "Ok, what group was Tessa in??....I'm pretty sure she got a chair!"  It was so fun to finally be able to talk about it!  Lorrie could remember back to a year ago and how limited Tessa's mobility was in her arms and hands...the changes in this area alone, were almost enough to convince Lorrie that she had been learning how to drive a chair over the last year!

I was looking back through pictures of Tessa in her chair over the last year.  The most striking thing that I realized almost immediately, were the changes in the expressions on Tessa's face over time.  The first 2 pictures were from the very beginning of the study, in 2011, when she first got her chair...and the last 3, most recently in 2012.  I know we all gain a little character and personality the older we get....but I guarantee you, the progression in Tessa has not just been in her ability to drive a power wheelchair...her progression has been in her discovery of life, freedom, fun and independence!

09/2011

 11/2011

 06/2012

 09/2012

 10/2012

They say a picture speaks a thousand words....I can't help but grin from ear to ear at what the progression of these pictures says to me.  I have the cutest, funniest, happiest, spunkiest little girl in the world and I just love it that the Lord is maker of this journey, cause I would not have wanted to miss something like THIS!   

~Whitney