Tuesday, July 10, 2012

Pintresting Thoughts for Tuesday!

Some Pin-spiration for us all today!

Boom started her first day of ESY today {extended school year}.  She is NoT happy about it and quite frankly neither was mommy... summer is for sleeping in!

Wishing you all the most beautiful summer day you could ever have...and remember...

Source: incourage.me via Kim on Pinterest

Sunday, July 8, 2012

I had been Robbed! Thoughts on our Twisted Story

Ever sit back and just wonder where the time goes?

I find myself doing this quite often especially when my birthdays roll around...  I will be older than I feel on my good days and much younger than I think the mirror reflects especially when those stressful days rear their ugly heads and disrupt my happy contentedness!

Just yesterday, I was 24 pregnant with my daughter... still dreaming of that fairy tale we were embarking on.  Life made sense most of the time then.  We didn't have much but we thought we had it all!  After her birth, the fairy tale twisted into some dark ugly nightmare straight out of Tim Burton's head...

Nothing made sense.

We had lost everything... after all... what else mattered if this little creature sent from Heaven didn't make it home with us?

Outside, the sun was shining, birds chirped, children laughed and swam and enjoyed summer to it's fullest, but for me... time stood still... trapped in this God Forsaken darkness. Days rolled into one another like waves crashing onto the shore... each day seemed dimmer than the last... anger and resentment took over my heart and soul... nothing else mattered except that little tiny child who had progressively became sicker and sicker.  I hated everyone and everything around me...

Where was the beauty? 

Where were the sugar plum fairies and pink cotton candy clouds?  Who took the buttons and bows and frilly fancy dresses my babe was to be wearing; that clean sweet baby powdered scent of a baby that I should be inhaling... was it all just an illusion?  Would I wake up tomorrow and it would be gone, over... just remnants of a bad dream?

I had been robbed!

Memories of my daughter's birth and the months that followed were surrounded by the sights, sounds and pungent odors of a hospital NICU... the odor of disinfectant and sterility... Sterile equipment, sterile stuffy hospital air, medical staff in their drab sterile scrubs, dim lighting, dark rooms painted such a horrid shade of taupe...seemingly missing all that in my mind was good and pure.  Monotonous clicking and beeping of monitors... air hissing from oxygen ports... the screech of a machine as our child would stop breathing...

Worst of all... the sight of my tiny newborn... wrapped in wires and stickers as she lay bare in her little clear box...that damn little box that reminded every second that I could not hold her... tubes in her nose providing the food I so longed to be able to feed her... the endless toe sticks and scraping for precious blood to run yet another test because her veins could not tolerate any more needles... and that God Forsaken tube... the ugly blue and steel tube that now graced my daughters neck instead of a string of pearls or lace collar...

I will never forget the day my husband stood in the hallway ranting to me that he would not allow them to trach her... ever...  His hatred for those white coated Doctors ran very deep.  Once, as those uniformed bullies surrounded her tiny hospital crib... sticking her over and over trying to start an IV- our daughter cried and violently shook; screaming til no more air could escape her tiny sick lungs.  As parents our job is to protect our children from harm... we felt as if we were horrible people, somehow to blame for this nightmare of events...  Myself sobbing and wailing loudly... my heart breaking as those emotionless bastards continued to inflict more pain on our baby... Silently Jim stood by my side holding me, then... in the blink of an eye he lost all control.  He grabbed a Doc by the collar of his shirt and jacked him up against the wall... lashing out, screaming... equipment now flying around the tiny room.  He threatened - "one more stick and I'll stick that needle up all of your asses!"  Needless to say... Daddy was escorted out to a private waiting area to cool off.  Baby girl was sedated and an IV needle was drilled into her shin bone... Later that night we counted over 97 little scabbed and red pin holes on her tiny 8 pound body.

My Doodle {or Boom as I usually refer to her as} received her trach just one week later... after coding and leaving us 3 times.  That tube was frightening.  I knew logically that this was the last resort... she needed it to provide the air to her tiny body that she just could not provide for herself.
Yet, the fear and despair of this new chapter in our twisted fairy tale had begun...

Having no idea how this would play out, we had resigned to the fact that "the way it should be- would never be again..." we were now the parents of a trached baby.  Oh how I wish that this older version of myself could have somehow squelched all of my fears in those earlier days... the vision for our future was unimaginable... We somehow knew we had been defeated... we had lost the battle for normalcy and that was a very hard pill to swallow.

Looking back now, I realize that I was grieving.  I still do at moments, grieve those beautiful moments most Mom's get to cherish as their child grows... the fairy tale moments.  One cannot recapture those lost moments, ever, no matter how badly we want to...

More of our story will continue next time... please take a moment to follow via GFC to hear more of my random mommy thoughts... the fairy tale does get better!

Thursday, July 5, 2012

Helping Madeleine and Max!

I'm excited today to share that  a wonderful blog friend of mine, Emily from Insanity Rules, is donating her Etsy Shop's proceeds for the next 2 weeks to help out a special set of twins, Madeleine and Max.  This little pair, would like to attend camp... Camp NO Limits!

Emily shares that "Little Madeleine was born with something called Fibular Hemimelia or Fibular Deficiency. When Madeleine was born they amputated her foot." 

Please visit Emily's shop- ShayeLee's Place and donate or make a purchase to help this M&M duo make it to camp this year!  This is what Never Lose Your Sparkle is all about!  As an extra incentive, Emily has offered a coupon code: MAD10 giving you 10% off your purchase!

You'll be sure to find something incredible there like these adorable little hats and headbands:

The Graci Headband SetBlue Childrens Hat with interchangeable Flower Clips

Or how about these cute little tutus!

Custom Team TutuParty Girl Tutu set in Blue and White with matching headband and bow clip

Tuesday, July 3, 2012

Painted Sign for a Good Cause

A Good Cause... I love them, I try to help out when I can...secretly I've always wanted to start something myself in Boom's name...

A Legacy of sorts for my daughter... from my daughter... to benefit others.

Because of that wish, Never Lose your Sparkle was created.  Today I'd like to share a hand painted sign that I have been dreaming of and working on recently to honor my daughter and others with special needs!

If you read Tiaras and Bowties, then you already know Boom's Sweet 16 was yesterday!  You may have seen some of the old scrap book pages I shared from her 1st birthday oh so long ago, which to mommy, feels just like yesterday!  What strikes me in these photos is the wonderful smile she had then... her chubby little cheeks and that gorgeous smile, she lit up a room!  Boom had her trach from the age of 6 weeks to just over 2 years old and she was the happiest little girl.  We had our moments in the beginning where I admit, I wanted to roll over and just die from the stress, the hurt, the despair, the unending issues that seemed to plague our family.

With time, I was able to accept the life our family had been given... to really understand the blessing that God had bestowed upon our little family.  She never cried.  Oh sure, a whimper here and there... but she was not a fussy baby... despite all that she had gone thru.

That sparkle continues today.  We have our moments, our upsetments with each new diagnosis, test, or surgery but with prayer and support they always pass... and the Sparkle returns!

My dream is to set up a 'fund' of sorts to help other children keep their Sparkle thru this blog. 

The 'Never Dull Your Sparkle" sign is the beginning of that! 
50% of the sale of this sign will be placed into a fund so that other special needs or deserving children can benefit.

Yes, That's 50% of each sale!

A toy, a bike, a necessity... did you know that air conditioning is not just a luxury to a child with breathing or other medical issues... in my eyes it's a necessity- and there are those who are without and suffering.  A special bike can cost upwards of $2000... yes a bike!  All children should have the opportunity to experience the wind blowing wildly thru their hair while riding a bike.  A doll baby... I'm sure you've heard of the line of dolls recently made available for kids with cancer and other medical issues which make them lose their hair... I'd love to be able to send one to a deserving child whose parent can't afford it because of the hefty medical bills.  I could go on and on... I'm quite wordy, but I won't...

So details:

"Never let Anyone ever... dull your Sparkle" Hand painted Sign

* Slats of Pine grouped and cut to approximately 22x14 inches.

* Base painted in the color of your choosing and topped with a neutral color {shown: pink/white}
   lightly distressed for that perfectly imperfect look.

* Lettering is Hand Painted NOT vinyl or decal... in color of your choosing {shown: choc. brown}
   and lightly distressed.

*"Sparkle" Lettering, although hard to see in the photos, is painted in the color of your choice then

* Cost: $69 {plus shipping}... which means that $34.50 of your purchase will help a child sparkle!    The remainder will be used to purchase more wood and make more signs!!!

* Visit my Etsy shop at Kimberly Sminkey Designs to purchase or contact me via email!

Monday, July 2, 2012

Guest Post from High Hill Homeschool

Today is a very special day for our family, our little miracle has turned 16. Oh Sweet Sixteen... I really never thought I'd see this day.

I'm so excited to have Julie from High Hill Homeschool Blog here today to share her family's story with us. Julie's daughter Jemma has recently been diagnosed with Leukemia. I can't help but feel an incredible sisterhood with other Mommies whose children are diagnosed with life threatening illnesses... please read on to find out how this family keeps their Sparkle!


I was recently asked by Kim at Never Lose Your Sparkle to do a guest post and I quickly agreed, because writing about my daughter Jemma helps me get through. Here is my post for Kim.

I'm Julie from Highhill Homeschool. Last month my family was finishing up the homeschool year while looking forward to our summer vacation visiting friends and family in Michigan when our world was turned upside down. My daughter Jemma went to the emergency room for a bacteria infection and was diagnosed with Acute Lymphoblastic Leukemia (ALL).

Growing up my dad always said "Life isn't Fair". This phrase always made me feel like I was one of the lucky ones. Now I'm not so sure.

There are some things we have control over in life and some things we don't. I have always been a good girl of sorts. In school I got good grades and followed the rules. As an adult I'm constantly striving to make life better for my family. Of couse everyone has their own opinion of how to make things better, but for me that includes homeschooling my children, exercising and eating a healthy diet. I believe these things minimize health issues, and are best for my children. I have control over these things.

Well, sometimes we don't have control over life. Cars crash, accidents happen and illnesses strike. What we do have control over is how we react to these things. After finding out Jemma had Leukemia I cried for two days straight, then decided I wasn't going to do that any more. It wasn't helping me and it certainly wasn't helping Jemma. I don't have control over the fact that she has Leukemia, but I do have control over my behavior. Now I have chosen to be as strong as possible for her and try to make her time spent in treatment as normal as possible.

Our struggle is just beginning, so I'm far from an expert on dealing with Leukemia or any other life changing illness. What I do know is that raising healthy children is a huge challenge. We all have struggles and all want to make life better for our families and children. Parents of healthy children want their kids to remember all the steps in their dance routine during the recital, easily learn to read, and treat others with respect. Parents of sick children want their children to be well. Each challenge and improvement is important to those who are involved. We all adjust depending on our circumstances.

So far Jemma is doing very well, but she is only on the second week of a two to three year treatment plan. We have a long way to go. You can follow her story here.

Although life isn't fair, it is what it is. My husband, Jemma and I cancelled our vacation to Michigan, but our older two children still got to go. Their vacation may even turn out better than originally planned. They are being passed between grandparents, aunts and uncles. Each one is spoiling them rotten.

It is difficult being here in the hospital because she is on many medications and must spend lots of time being checked by doctors. The medications have several side effects that have changed her body physically, caused her pain, and taken away her energy. Despite the challenges, I am thoroughly enjoying the quality time I am spending with Jemma. We have read stories, played games, done craft projects and even gone on a few explores. So always remember, like my dad says life isn't fair---- but also remember ---- you have control over how you react to it!


Now, don't forget to stop over to Julie's Blog to show some support and follow Jemma's journey.

Come reminice with me at Tiaras and Bowties...

Want to share your story or thoughts on supporting a child to keep their sparkle?  Contact me!

Saturday, June 30, 2012

Every Child Has.... Free Printable

Happy Weekend to you all! 

As I live and breath lately all things encouraging to children and teens, my dear friend Andie at Crayon Freckles has come up with a darling printable you are sure to love!

It speaks to my heart, hopefully it may speak to yours... to print yours please visit Andie at  crayonfreckles: Every Child Has....

Friday, June 29, 2012

Building Up Buttercups!

Self esteem issues plaque all children no matter their sex, age, color, or ability.  Children with physical anomolies and other special needs are no exception.  As a matter of fact when a child has an outward appearance that is somewhat different from the norm it can seem as though these feelings of inadequacies are amplified and exaggerated.

Ms. A, just recently finding out she needs 2 hearing aids has had a semi catastrophic effect on her self esteem and anxiety level.  Hearing aids, while not nearly a life threatening crisis in themselves, have been my catalyst to really focus on building up the little buttercup and getting this blog off and running!  Adding hearing aids to her already full cup {short, chunky, glasses, full face, leg length and size discrepancy, feet deformity causing a need for special - not so pretty- shoes} has pushed this young teen into overload!

Source: via Kim on Pinterest
While much of what I write seems 'special need' based... it is my belief that all children need some help from time to time to shine!  My son, whom we lovingly refer to as 'Awesome' not because we are self centered or egotistical, merely because of a pronunciation issue and it stuck- often deals with self esteem or self value issues.  As a parent I am not lost to the fact that Boom receives and needs my attention alot which ultimately results in less time spent with and for Awesome. 

God said, "Let light shine out of darkness." He made his light shine in our hearts. It shows us the light of God's glory in the face of Christ.

It is my hope to let light shine here.  Whether special needs or not, everyone- everywhere, has a light... it is my dream to keep it sparkling!  That's where you come in my friend!  I want to hear from you!  I am looking for guest posters to contribute to this cause!  C'mon and represent!  You have something to add whether you believe that or not!  Share your story, share an inspirational moment, share an activity or a craft, share beauty tips... share an idea that boosts self confidence, self esteem, and empowers our youth to keep shining!

Tuesday, June 26, 2012

Spread the Word to End the Word

I have just taken the pledge to make the world a more accepting and inclusive place for people with intellectual and developmental disabilities!


Words are hurtful.

As the mom of an intellectually disabled teenage daughter,
I have seen first hand the damage this word can cause.

I have watched the use of this word
my daughter's

I will never forget the utter disappointment I felt when my Boom
 was a mere 2 year old...

a close young relative; while joking with her friend about school issues
flippantly and unexpectedly
referred to a child who road the 'tart cart'.

As a new mom I froze in horror.

Now, I knew my young relative absolutely adored my daughter and in no way
to be hurtful...

a lesson in empathy ensued, I asked quietly,

"Some day Boom will go to school, and Boom will more than likely ride that bus.
Is that how you want other's to refer to her?
Will she just be another 'tart' who rides that little 'cart' to you?"

The lesson had been firmly imprinted that day and was never spoken again.

Through the years, we have been passersby
subjected to hearing the use of the R-word by strangers.

Children often throw the word around in local playgrounds and side streets
unaware of the damage it causes.

Friends and family have all too often while telling a story
or commenting on some incident in their daily lives
made use of the R-word.
Some but not all will stop mid sentence and look to me adding
"I'm sorry, you know I'm not talking about your daughter...
I didn't mean her, but"
as if informing us that the use of the word is Okay in some way.

It is NOT Okay...

Won't YoU JoiN Me by taking the Pledge too?
Visit www.r-word.org now and find out how you can help.

Sunday, June 24, 2012

I am the disabled child

This is one of my favorite poems or quotes about a special child. 

It speaks to my heart and encourages me when I am down... it is so very true that a special child has an amazing knack for making people look within themselves to see what is important!

I hope that you also gain some encouragment from it!

I am the disabled child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
Author Unknown

Friday, June 22, 2012

Never Lose your Sparkle- Self Esteem!

Children with special needs like my Boom often begin to realize or know that they are 'different' from other children.  It is something they may start to question and 'feel' from a young age or may begin a bit later in life.  Alexis began to sense she was 'different' somehow when she was about 10 {give or take a year}.  Frequent trips to the doctor, specialists, the need for OT, PT, speech therapies, numerous surgeries, the need for special shoes unobtainable from the corner mall, glasses, exclusion to the learning support classroom while 'mainstreamed' in school, countless meds taken on a daily basis are all just a sampling of things that take place in a SN Child's life that may leave them feeling as if they are under contant scrutiny and under the proverbial microscope. 

Even those with intellectual disabilities like Boom can have a strong sense of intuition- she just 'knows and feels' things that she perhaps cannot put into rational words.   Whether a child can express these feelings verbally or not does not mean they are not questioning their own self worth in comparison to others. 

Boom will be 16 in 10 days from today.  I have made it my life's mission to cherish, teach, and support this child in any way I can. I am very aware that many of Booms' same age peers {those without SN} are fighting their own internal battle with self esteem- this is a hard age for girls and boys despite having physical or intellectual disabilities.  At this moment, I watch my good friend's 'average' daughter suffering which breaks my heart; she seems so perfect, beautiful, and normal {for lack of a better word}!

So how do we as parents and educators learn strategies and techniques to battle low self esteem?  It is critical for the well being of all children; especially those who are aware of how their special needs
set them apart to help them cope and view themselves as the wonderful creatures they are.  So how do we do it?  I'll be discussing some of the ways I and others have worked to combat negative self esteem in the coming days.

It has been my purpose for the past 15 years and I have made it my life's mission so that my daughter and those like her...never dull their SPARKLE!

It is my hope to raise awareness {and in the near future- a 'Sparkle Fund' to benefit charities} for self esteem issues for children and adolescents with and without special needs.  We will discuss issues that effect our young peoples lives both positively and negatively.  A Haven for support for children and parents affected by special needs of all kinds!  I'll need your help... I am Looking for those who would like to share their story with us.  Do you have an idea or suggestion that you would like to share?  Perhaps a crafty way to help build up our kids?  Send them to me @ kimberlysminkey {at} yahoo {dot} com ASAP!  I"ll share them both here and on my other blog Tiaras and Bowties!

Saturday, June 16, 2012

Wonderful Things are coming this way!

Please excuse us as we are "Under Construction!" right now.

Feel free to visit me on my other blog- Tiaras and Bowties!