FAMILY CHRISTMAS PICTURE

Hmmm....what were we thinking?  I mean, there IS a reason why we have not been to a photographer since 2001.  It just seems that things never work out when it comes to the Wiggins Photo Session.

But my husband decided that this was the year.  We were gonna do it!  We decided to face the fear last night.  We, at the last minute, found this place and gave them a call.  Lucky us, we got a 5PM appointment.

Now, since this is a note about Bailey, I will skip all of the drama we experienced as we went to the wrong shopping center, then got lost on the wrong exit, then got stuck in traffic, then got frustrated because it was 5:20, then finally found the place at 5:35.

Bailey NEVER poses for pictures.  She sees a camera and turns her head.  She also never smiles for the camera.  Any smiley pictures that we have are merely a coincidence!  So, we had already accepted the fact that we may have a picture of four people smiling and one red head not even looking at the camera!

She did okay for the first 5 takes.  She was fairly cooperative in those group photos.  Then the lady brings out this fake tray of cookies and milk for daddy to hold.  WHAT?!  Did I mention that supper would be after the session?!  So there goes Bailey, trying to grab the plastic, glued on cookies off the tray; becoming more and more aggravated with each try.  So the crying and whining and spitting and scratching begins.

Needless to say, it was all down hill from there!  Long story short, that poor lady used every antic known to man, took over 80 pictures, and we were left with ONE picture that was useful!

***I apologize for the photo quality...i took it on my laptop...

Another Reality Check

The very familiar school phone number appears on my vibrating phone; at which point, I always assume the worst.  Your principal voice was on the other end.  My first thought was that your brother had gotten into some major trouble!  I was wrong.

She informed me of how you went to your 'favorite tree' during recess....and something happened.  A little boy had found his way to where you were, but you were not thrilled with sharing 'your tree' with him...at all.  So, in usual Bailey form, you begin spitting at him.  He, in turn, decided that the best course of action would be to hit you in the back with the toy he was holding...not once, not twice, but several times.

She told me how your back was so red.

And that's when it hit me.  You.Are.Not.Safe.  That's right.  I realized that in this dark world we live in, you will never be safe to fight your own battles, to seek out help when you are in a battle, or to share with me your feelings about the battle.

Had the principal not called, I would have never known you had been hit.  Never did you cry, for your tolerance of pain is so high.  Never did you tell an adult, for you cannot speak in sentences.  Never did you consider the situation, realize that you should leave, and take action, for your mind isn't capable of making such deductions.

And that's the part that scared me so much.  The mommy side of me immediately jumped to all of the worst case scenarios with which you could possibly someday face.  I was frightened thinking about you being hurt, attacked, confronted and never being able to call for help.  

If nothing else, I was quickly reminded of how necessary our (me, daddy, shelby, brody) our mission is.  We have been chosen to protect, speak, think, and act for you.  Our mission can be daunting.  It can be overwhelming, but none-the-less, it is ours to accept and carry out. 

I Knew It!

Well, we just got home from Dallas.  It has been a terribly long and exhausting week.  Let me bore you with a few details to get us up to speed, OK?

We left for Georgia last Tuesday (meeting nana/peepaw to drop off bailey) and spent the week with family/friends in preparation for Jessica Brown & Zach Newman's wedding!  Brody was to be in the wedding, Michael sang four songs in the wedding, and I catered the rehearsal/reception.  Needless to say, it was (almost) controlled chaos!

Michael preached Sunday morning and then we left out to meet nana to pick up Bailey and head to Dallas.  So we arrive in Dallas this morning at 2AM.  We attempt to find a decent hotel to sleep for a few hours before having to be at the hospital by 8AM.  They all wanted like $150. What.In.The.World.  Well, we finally saw this hole in the wall hotel and just stop there.  And it was only $65!  woot woot!!!!

Well, you get what you pay for...granted, it was clean, but the sheets were nearly see through!  no shampoo, so no hairwashing for me!  no iron/ironing board...so i went to the hospital looking like white trash.  the towels were the size of hand towels...by the time I dried my arm I was like, "ok, now how do i dry the rest???"

Anyway, we make it to the hospital and by 12:30 we have seen the PA 4 times, the dr 3 times, had a set of xrays and a cat scan.  Talk about efficient!

But the whole time, I kept telling Michael, "they aren't going to do anything for her."  And I was right!

The doctor was very thorough with us, but told us that he thinks we should just wait a year and see if her condition worsens.  He says corrective surgery is a major surgery that he doesn't like to just jump into.  So as long as her pain is low and she can handle it, he wants to hold off.

I knew it!  Bailey is never well enough to be normal, and she's not weird enough to get help.  Rock and a hard place, can't win for losing, and all those other sayings!

P.S.  On a good note, Bailey was better today than she has EVER been at a doctor's office.  She cooperated and never lashed out.  Brody was good, too, which was a blessing as well!  Thank you Lord for making the visit an easy one!  Thanks to all who have been praying.  She is still in pain, but I suppose the doctor's know best!

On Her Behavior...

Although Bailey's behavior was generally appropriate for her developmental level, it could sometimes be problematic.  She was sometimes physically aggressive, especially with her younger brother Brody.  This behavior had occasionally been noted in the classroom as well.  She had also been known to scratch/injure herself.  Those working with her should do their best to distract her attention and/or remover her form the situation as necessary.  This examiner observed that Bailey would sometimes turn away and lie down in order to avoid an activity, even kicking gently as if to mildly protest.  When this type of behavior occurs, staff should try to reengage her in the activity after waiting for a few minutes.  If overt resistance continues, a different activity should be tried

So Little To Say, So Much Time....Strike That! Reverse It...

So, let's see.  I have a copy of Bailey's last evaluation.  It's time for a new one, but we all agreed that she has not made enough progress to warrant a new one...if we did, we were all agreed that the numbers wouldn't change much at all.  So, while reading over all the info on the eval, I ran across some funny descriptions of Bailey...

Shall we begin?

"Bailey presented as a very light-skinned, somewhat chubby Caucasian girl with long, full, red to strawberry blonde hair and blue eyes. On the first two informal observations, she smiled readily at the examiner and engaged in some simple play, crawling on the floor after the examiner, passing a small plastic spool from hand to hand, and giving lots of hugs.  the 2nd observations was more formal; the examiner simply took notes and did not attempt to engage Bailey in play.  For the most part, Bailey ignored the examiner's presence on that occasion, and her general demeanor was much more serious, with less smiling and hugging general."

...I especially like the chubby part!

....More to come....

ARD, IEP, & LENGTHY DISCUSSIONS....OH MY!!!!

So it's that time of the year again, oh yes...the dreaded ARD (admission, review, dismissal) meeting including IEP (individualized education plan).  OH JOY!

Basically we (principal, ot, slp, pt, teachers, psychologist, and myself) sit around a table and decide what "goals" need to be addressed this year.  Definately NOT the normal kid's goals.  Technically, Bailey should be in the 4th grade.  Instead, she is still at the Pre-K thru 1st grade campus in a class simply named "life skills".  The meeting will be a time to reassess, making sure she is still in need of this class.  At the end, I will receive a copy of the meeting, complete with reasons why she IS still in need:  Mental Retardation, Speech Impairment, Other Health Impairments......well lucky us!

Instead of wondering if she's keeping up with the class in reading comprehension, we strive just to stack blocks on top of one another and manipulate basic toys.  No learning of the three R's (so to speak)....we are just working on the basics.  Here's a few goals that we shot for last year:
*stand from the floor independently
*ascend curb without assistance
*point to herself in mirror
*remain dry, without accidents for 4 out of 7 days of the week

And here are few that she has "mastered":
*hold and examine offered object for at least one minute
*attach and maintian a mutual gaze with caregiver (bonding) for greater than 3 seconds
*grasp small object with thumb and index finger
*crawl forward alternating arm and legs
*assert emerging semi-independence in physical activities: mobility, self feeding, drinking from a cup
*respond by looking, moving, etc to sudden loud directed noise

And every year I get the little 6 weeks reports with the same 'grades'....Work In Progress

Where Brody has homework and is becoming quite fluent in reading and a master of math (age 6, 1st grade), his big sister Bailey is applauded if she has no potty accidents all day.

For me, the meeting will rehash how disabled and behind and different and vulnerable and dependent and alone and awkward and pitiful Bailey is.  It is simply a yearly confirmation of her state of mind and the fact that she will never live an independent life outside of my home.

Do I despise this?  Absolutely not!  As I've said many times before, I accept God's plan for Bailey's life....I really do.  But as a mama, I just REALLY REALLY REALLY want her to improve, learn, become independent, make her own choices, talk in complete sentences.  My wants and desires are REAL, they are STRONG, and I am fully aware that they may not be God's will for her.  Am I confusing you?  I hope not...although I do understand and completely trust in what God has in store for her, I am still flesh and only want the best for her!

I remember the day well....

I was in my 32nd week of my 3rd pregnancy.  Shelby was nearly 3 years old, followed by a miscarriage in November of 2000.  I was set to have a C-Section on October 18, 2001.  It was August and so VERY hot.

My ankles we as big as my thighs.  My blood pressure was high all the time.  I knew that preeclampsia would set in sooner or later, just as it did with Shelby (who was delivered at 33 weeks, weighing 3lbs. 14oz.).

....Anyway, after trying hard to get my BP down (Michael was checking it on the hour), we decided that maybe I should just go on to the hospital.  We lived in a small town with a small hospital.  After getting to the hospital, my doctor informed me that I would need to deliver now....but that this hospital was not equipped to perform a C-Section on a 32 week baby.  So off I went via ambulance an hour and a half North to Birmingham, AL.

Family was called in, I was hooked up to all the monitors and given all the horrible meds to keep me from having a stroke...and steroids for the baby's lungs.  I was used to this, as I said before, because I experienced all of it with Shelby also.  I was prepared for the C-Section when the doctor came in and asked if I wanted to have a VBAC (vaginal birth after cesarean).  What?!  Really?!  I can do that?!

I was so excited because I really wanted to have that experience at least once.

So, i was induced and experienced labor for 22 hours!  What was I thinking???
I delivered Bailey at 11:35PM on August 31, 2001.  She weiged 4lbs 4oz.  And, as suspected, she was whisked away immediately to the NICU, only giving me a quick glimpse of her from a distance.

Bailey remained in the NICU for 24 days.  We drove 1 1/2 hours one way every day for those long 24 days to see her and feed her.  It was very hard to leave her at that hospital every day.  I should have known that this would only be the beginning of a life long journey.

We are so happy to have Bailey Dyan Wiggins in our family!  She is loved and adored by all of us!!!!

You HAVE to read the ENTIRE note...

So, yesterday's note was a bit of a bummer....I am fully aware of that.  But as I have said before, I wanted to be able to share it ALL with you.  Not just the good days, not all the sunshine and roses.    ALL.OF.IT.

So, I have.  There are posts that are uplifting and there are those that certainly are not.  Be sure that I do not post anything in order to receive sympathy or gain attention from anyone.  I just really want to post the truth, from a mother's heart, from a born again Christian who knows God is in control, but who is still flesh and who still is growing and learning as a child of God each day.

That being said, I have a wonderful announcement to make!  There will be those who will read the following and simply say it was coincidence, but I KNOW Who did it!  I know Who is worthy to receive all glory and praise.

This morning I took Bailey potty when she woke up, just like I do every day...she pooped a bit. (again, not hiding all the wonderful details with any of you! ;) )  I got her completely dressed and she got whiney.  I tried giving her a drink. NO.  Barney. NO.  Music. NO.  Cards. NO.  She walked over to the step that leads to the bathroom and she leaned on the wall.  "Maaaaamaaaaaaa" (over and over).  I was getting aggravated with her by this point.  I could not figure out what she wanted.

Then she stood at the bottom of the step and pointed up and whined.  Could it be???  No.  Certainly not.  Well, i will just do it anyway and see.  I asked her, "Do you need to go potty?"  Her body language (you have to know her) said yes.  So up we go to the potty.  And can you believe it????  (drum roll please)  She pooped!  That's right people....

BAILEY DYAN WIGGINS LET ME KNOW THAT SHE NEEDED TO GO POTTY!

It was not only an answer to prayer, but a reminder to me that God is still on the throne and (like Bro. Daniel reminded me) He hears the prayers of His saints!  (can I get an Amen?!)

hello blog peeps!  i am so sorry for having neglected this blog....i HAVE been blogging, but on facebook.  so i am importing all of those today.  so take into consideration that these have been written over a period of a few weeks!

BLAH!

That's right, BLAH!  That's all I have to say about it.  I don't even know what to think anymore.  Sometimes I feel so proactive, confident, and sure things will progress and then there are times when I just feel BLAH about the whole situation.

Bailey's first day of school was yesterday.  Last year she had three classmates.  Two with autism and one with downs.  We were the first to arrive.  I asked her new teacher if all the kids were returning this year.  Well, the two boys with autism were 'promoted', 'moved up'....they have PROGRESSED.  Bailey is the oldest one in the class, at only a week from being 9 years old. I wonder when she will move on, as she should be in 3rd grade.

Her body is aging, moving on, while her mind is at a stand still.  NO PROGRESS.  In fact, I cannot think of any progress she has made withing two years.  Do you hear me?  TWO YEARS....NO PROGRESS.  For those with only normal children it may be hard to understand the importance of this.  But we (the wiggins family) live with it each day.  Almost like that movie where the guy wakes up to the same day every morning....the same thing each day.

And it is not 'her fault', I do not blame her nor do I blame her teachers (they do their best), I guess I don't blame anyone....it just really stinks sometimes.

So what would I consider progress?  ANYTHING!  Maybe learning a new sign, initiatng the need to go potty, anything at this point.  Granted, some of her formal skills have improved: feeding herself, her ability to understand.  But nothing new.  Two whole years and no big "AHA" moment with her.

It just saddens me.  I have begun to research a little about MR (mental retardation) since that was how the school psycologist labeled her.  I will post a note about that later.

joy

It begins small and creeps in upon us unaware.  We are affected immediately by its presence and there is no way of escape.  And before we know it, we too are caught up in this mass hysteria known as The Joy Of Bailey. 

Seriously, there is nothing more infectious in our home than when Bailey gets a case of the giggles.  She has this raspy smokers laugh that is hearty and oh so sincere.  She doubles over, her whole body is tense and her eyes get all squinty.  Her big ole Spongebob Teeth are quite prominent and her cheeks are raised to great heights.  Her breathing nearly comes to a complete stand still and there is not one fiber of her body that is not affected.

And more times than not, we have absolutely NO idea what brings on these fits. We will all just be sitting around and then she will just explode in heavy laughter.   I believe that the Lord has simply placed a joy in her heart and that He uses her to bless us (and others).

This God given joy makes my heart happy because it is an outward manifestation that through all the other struggles in her life she has been given an enormous truck load of pure happiness!  What a blessing!

There are days...

There are days when Bailey can be so super sweet: she wants to hug and kiss all over us, she laughs and talks a lot, she is content watching Barney and shuffling cards. The gleam in her eye is breath taking, her smile is addictive and her quirks are so silly and innocent.

Then there are days like today....

Days when, no matter what we try, nothing makes her happy. She is in attack mode all day. She screams about everything. Nothing pleases her.

The whole house tries so hard to satisfy her. The other kids put their wants on hold in order to help make her happier. They suffer the scratches and kicks that her outbursts bring. It's like the whole day is spent on her.... in vain. We all look tired and give out. I know personally days like today make me tired....tired physically (as i have given her 2 baths today) and tired mentally (as the non stop...seriously, non stop...screaming goes unappeased)

It takes all we have some days to make it with our sanity. I take small reprieves in the bathroom...in other words, I hide there for five minutes at a time. It is there that I pray. It is there that I seek wisdom from God on how to deal with the stress that she brings at times without becoming resentful and having bad feelings toward her. It is there that I take a moment to let out a few tears, as I do not want to show vulnerability...I have to be strong, I have to 'man up' and just 'deal with it'.

Here in this small room is where I come face to face with my fears...
will I ever know a time that I do not have to help her onto the potty?
will I ever eat a meal without having to feed her as well?
will I ever just say good-night to her and she puts herself to bed?
will I always have to get myself and her dressed each day?
will I always have to make sure her teeth are brushed and hair is combed?

Am I being selfish??? Yes, and I know that. But these are things that enter into my mind on days like this, these days when I feel that I am spent, that there is no more compassion left inside of me, that all of my attempts at making her life better are shattering into a million pieces, when I feel that there is no way for me to break that wall, that barrier that separates me from her own little world.

And these are the times that, once she is put to bed and I reflect on the day and how exhausted I am and how it seems that my future only holds more and more of these same days, that I remember that God gave her to me (and Michael) and that her very life is in our hands. I am then reminded that I have no time for self pity and pouty lips. I repent and ask for a special measure of grace and for the next day to be better, and if it isn't then for extra grace and love and compassion and patience. All because I know that...

There are days

They Must Really Love Her

Bailey is getting older, taller and heavier....she's simply getting bigger. And with this physical growth, her emotions and lack of controlling them also grows. We have had VBS all week, which means her routine was anything but. I was teaching a class, so I couldn't be with her the whole time.

There are ladies in our church who take on the responsibility of caring for Bailey without thought. They naturally tend to her and see that she is protected and happy. That sounds all warm and fuzzy, but it can be the total opposite. Bailey can be.. ..for a lack of a better word....difficult to deal with. She doesn't think twice about screaming if unhappy, scratching when unnerved and hitting anytime she deems necessary.

These sweet ladies patiently reprimand her (usually with no luck) and deal with her with so much love. I know that if it were me dealing with someone else's child, I wouldn't be so nice. But I watch them even when they don't know I am. They never yell at her or even sound angry. They calmly talk to her and try to appease her.

Of course, during this time she is usually just staring at them and continuing to misbehave. It seems like all of their efforts are in vain.

I never have to worry about Bailey while at church. I know that these ladies will come to her aid and are prepared to put up with her antics although she can show no signs of gratitude. I do appreciate them. And I know that

They Must Really Love Her!

Dear HEB Shopper....

Dear HEB Shopper,
I enjoy a relaxing stroll through the grocery store as much as anyone, so I feel that I must apologize for ruining your shopping experience today. I could tell from the ifsheweremychildshewouldnt

actthatway look in your eyes that my handicapped daughter was getting under your skin.
I am so sorry that I thought I could take my child into that store without being stared at with pious eyes and and having harsh judgment passed upon us as we walked down each aisle. Your body language was certainly loud and clear as I had to nearly drag Bailey down the aisle as she wailed in rebellion, scratching my arms until blood was surfacing. Her desire for lunch had overcome her ability to mind her manners. And my patience was beginning to wear thin as you seemed to be publicly stalking me to find another way to prove my inability to control my child.
Who was I to think that perhaps compassion would be applied rather than shesanunfitmother glares. I will be sure next time to choose from a wide variety of discipline: a) drug her before going b) perhaps borrow a straight jacket and dog muzzle c) or even handcuff her and staple her lips shut
These are just a few suggestions so as to not interfere with your precious trip to the grocery store next time.

Thank You

****severe sarcasm must be applied while reading!

potty episode # 7,830,220,416

We are in what I feel will be a life long training session...in other words, I do not really feel confident that Bailey will ever be potty trained. This is especially true when she makes a mess and mommy has to clean it up.

It's Wednesday, I have given her a bath (whole other rant there!) and she is squeaky clean. She is wearing her big girl panties! woohoo! I get a bath, do my hair, get dressed, etc.. About 10 minutes before we leave for church I put her shoes on her. I ask her if she needs to go potty and do the little potty sign to go along with it. She shunned me, so I figured she'd be fine until we get to church.

I am in my room and I hear Michael say, "Mama...Bailey has a surprise for you!" Which, being interpreted means, "Bailey has pooped in her big girl panties....clean it up" (now don't get all grouchy with Michael...cleaning your 8 year daughter is not the same as cleaning a baby girl...a little uncomfortable for him...although he will and has done it if I'm unavailable...he's a super daddy...)

Ugh, the first thing I think of is, "Ugh, I'm already dressed! I'm gonna get all wrinkled and plus, I'm a big girl...and big girls sweat! Now my hair will have that sweaty look to it!"

I must tell you, there is no easy way to remove poo poo panties from a child who doesn't 'think' like we do or follow directions accordingly. Long story short.....20 minutes, poop up to my elbows, poop all over her legs, all over the toilet, 372 wet wipes and a dehydratedfromsweatingprof

uselymustputonsecondlayerofdeodorant mama later, we were all cleaned up and out the door to church!

FEET

They are a funny thing, these feet we have. Feet support our weight and make us mobile. They are super cute after a fresh pedicure and horribly smelly after a day of vigorous work. They are small things that probably do not get a lot of thought, in the grand scope of things...but when you have a ones that do not work properly, they somehow begin to consume your life; taking over your thoughts, yours emotions, everything. Or at least that's what they've done to me...and they aren't even my feet.

Ten little toes, some perfectly fine and others twisted and distorted, attached to flat feet (one of which is severely turned out) support this little girl each day. Three sets of AFOs (leg braces) have been bought and used to no avail. With no communication from Bailey, we always thought the issue was more cosmetic than anything. You know, people stare at this child who limps and can't walk as fast as a toddler, who cannot run on the playground, who cannot climb the monkey bars alone, who is very unstable on anything less than level ground. But after nearly 6 years of walking (since she began at age 3), we have grown accustomed to lingering behind the rest of the crowd and taking our time to get places.

It wasn't until a few months ago that she began to grimace, to show signs that she was hurting. Never does she show signs of pain...maybe only a handful of times in her life...she has such an extremely high tolerance for pain. Now, every time she stands, she makes horrible faces and groans and whines. The pain must catch her by surprise, because she immediately reaches to grasp anything in reach for stability and looks so scared. We stand there waiting, whether in a busy restaurant, waiting room, parking lot, where ever, for her to be able to get her footing and walk. Now trips that were twice as long because of her disabilities, now they seem three times as long.

She finally gains the ability to walk and feels partially confident with doing so. Holding her arms for stability, she walks as if walking on glass, short quick steps that seems to shoot fiery pains through her feet and up her legs.

Applications have been filled out to go to a specialist, but who knows when we will hear back from that. Each day grows worse. I really wish she could just tell me exactly what she's feeling. Does it sting? Do they tingle? Is it constant? Do they throb? Who knows?

The Lord does, I am sure of that! All I can do is pray that His will be done. Whether that means healing her Himself...which is more than able to do, or allowing us the help we need from a specialist, I will be sure to give all glory to Him!

Big Sister Shelby

At only 11 years old, Shelby Grace Wiggins is a better mother than most women with children of their own. Having her own childhood shortened in order to help 'tend' to her baby sister, Shelby has grown up quickly and has had to mature at a fast pace. I do not see this as a bad thing, mind you, as I know that this 'practice' will help mold her into a wonderful mommy for real one day.

These early life lessons in feeding, changing, bathing, dressing, etc. has somewhat aged my firstborn. There was a short span of time that she seemed to be getting a little resentful of the circumstances dealt her. But those feelings are gone now. She simply accepts her role as mini-mom and goes about the business that title holds with no argument at all.

For instance, this past Sunday I laid down on the couch. Michael was resting in his recliner and Brody was watching TV. I kinda sorta maybe fell asleep....but it was one of those sleeps where you can still hear what is going on around you. I suppose that Shelby must have seen that I was napping, and so she stepped in as mommy for about an hour, without thought, like it just came naturally to her. "Come on Bailey, let's go get a nap. I will lay with you." I could hear her talking to Bailey. Through my in and out state of sleep I heard Shelby in there talking so sweet to Bailey. Bailey LOVES music, so Shelby took her IPOD in there and let her listen. I could hear Shelby singing to her and clapping with her.

I remember thinking how blessed I am to have a daughter as special as Shelby. I thought of how Shelby always has Bailey's best interest at heart. Upon waking up, Shelby says, "Ok, I took her potty and she went. And I've already brushed her hair and teeth. So she's good to go."

What an amazing, compassionate, self motivated young lady she is. Because of her love for Bailey and willingness to be a help to her own mom, she went the extra mile. I cannot brag enough on her. God has been so good to me. I am so very thankful that I have Shelby, but I am more thankful that He has placed in her a sweet spirit and an unconditional love for her sister.

I Wonder

When you wake up with that cheesy grin every morning, I wonder if you really are that excited that I am the first person you see each day.

When you are watching Barney, I wonder if that 2000 time repeated episode is like new to you each time you watch it.

When I brush your hair, I wonder if it really hurts or if you just scream because you don't like to be touched.

When you eat your cereal, I wonder which kind you would choose if you could talk.

When you go potty, I wonder if you really grasp what a big girl you have become.

When we try to mess with your feet, I wonder how much pain you are truly in with those twisted toes and crooked foot.

When you get in trouble, I wonder if you really understand why.

When you are chewing your favorite gum, I wonder why it has such a calming effect on you.

When I look you in the eyes, I wonder what you would say to me if you could talk.

When you are fussy, I wonder if maybe you have a belly ache or a headache that goes untreated.

When you laugh, I wonder if you know how much joy is spread like wild fire.

When you hold my hand, I wonder if it's because there is such a great connection between us.

When you fall asleep, I wonder what kind of dreams you have.

When you are in therapy, I wonder if you know what it's really all about.

When you are shuffling cards, I wonder what thoughts are going through your mind.

When you watch other kids play, I wonder if you are wishing you could do that too.

When Shelby and Brody ride their bikes, I wonder if you would like to join them.

When others make fun of you, I wonder if you grasp what is really going on.

I wonder

We walk in and you are 'talking'. And very loudly, might I add. I watch as Shelby and then Brody pass by the others in the waiting room. Eyes take a glance then they are back to the magazine that they are reading.....until you walk by.

That's when they forget how rude they are to stare, how much I'd like to walk over and attack....I mean pray with them. These strangers seem curious, bewildered, uneasy. 

I check you in at the front desk and you begin to wonder toward them....as you always do. They do not know that I am watching, that I see every shifty eye movement, the look of panic on their faces like you have leprosy or something.

Shelby tries to call you back to the other sitting area, but you love people...love to make connections with them...love to smile at them...love to blow zerberts in the air in an attempt to get their attention. Well, you have it alright. Their undivided, yet fearful attention.

Like a very strong magnet, they are unable to keep their judgmental eyes off of you. None of them offer a 'hello', so what then are they thinking? Are they scared for their lives to try to talk to you, not knowing what to do with a nonverbal yet vocal child with a slight limp. 

Are they thinking, 'what in the world is wrong with her?' or 'so glad my kid isn't like that'. Some even have a look of disgust, as if they can't believe they have to share a room with someone with disabilities.

And what gets me is that they don't even care that they are doing this. That their body language is that of discomfort. Shelby can see that some are staring. She, who loves you in all of your insufficiencies; your inability to run, talk, play house, read, bathe, skip, or a number of other things, gets fiery mad when others offer that look of disdain from their thrones of superiority. She doesn't mind giving them a 'certain' look in return. Although I have had to 'hold her back' at times, I am proud that she defends you and loves you so.

They are just strangers, they are uneducated, they are ignorant to it all.

There's no need to argue, strangers just don't understand.

bailey got a haircut today.  to date, she has only had 4 haircuts...ever!  she hates for her head to be touched, so we usually let her grow it to Rapunzel length before cutting it!  well, it was getting there, so we had it chopped off today.  never has it been this short...i was really nervous.  it is longer on one side, but i hope to have it fixed next week.  she did ok...daddy stayed with her the whole time.  she does better for him than me.  she cried a lot.