::Broken::

I don't think there's anything in this world that hurts more than a shattered dream. I don't know what that could mean to you. but I certainly know what that means to me.

I had a certain dream for the family I wanted to have.
The marriage I wanted to have.
The kind of wife I wanted to be.
The kind of mother I wanted to be.
I didn't anticipate what was in fact planned for me.
As life started to unfold, it got increasing complicated and at times unbearably painful. The dreams I had shattered into an isolated world, filled with let downs and questions.

For me, the complicated nature of my life left me feeling completely broken.
Pained.
Frustrated.
Worrisome.
Helpless.
The expectations I felt were put on me, raised the expectations I put on my spouse and the disappointments multiplied and the hurt continued to increase.

Some nights I would cry out to God and question His plan for my life. I would ask him how in the world could he expose to me to pain like this, fully knowing all I had already been through.

Pain like this? Currently, its experienced through an over abundance of love for our child while mourning the loss of a dream we had for him all at the same time. You might not be able to understand, or you might know all too well.

Speaking to you, and reminding myself at the same time:
God knows.
He has a purpose.
This is not in vain.
Your brokenness isn't failure. It has been intentionally given to you for a greater purpose. Once we have been broken to a place that seems irreparable is when God comes, gathers the pieces and builds something that glorifies Him. While all you had desired was noble, it just wasn't usable. His plan is far beyond anything you or I could ever dream, and sometimes that's hard for us to see.

One night studying, I read a translation of Matthew 5:3 that spoke to me:
"Blessed are those that recognize they are spiritually helpless. The kingdom of heaven belongs to them."
The words "spiritually helpless" read like I was reading my own name... and then God gave me 2 promises that took root in my heart:
I will be happy.
Where God dwells, I already own.

The same promises are for you.
 
There are some on my heart that I will be praying for over the next 3 weeks. Pray for me as well.
Lets be broken together.

::BRAVE::

3 month hiatus.....

     Needless to say, I'm very happy summer is over and FALL and SCHOOL are in full swing. My Husband has been home all summer, had 2 minor operations and a few serious complications, and so, in a nutshell, I'm totally over "Summer 2013."

     Of the high and lows of this past summer, one highlight was our annual "22q At The Zoo" event here in Atlanta. This is our 3rd time participating in the event and with every year its feeling more and more like a family reunion. Its proof positive that a family can be formed via social media, as moms and dads and families all over the world meet for one day and act like they have know each other their whole lives. It a very comforting feeling to be surrounded by other families that know exactly what you have been through, can give you insight as to where you are going and and support to get through the present day. I am so thankful for my 22q family.

     The highs of the day are obvious... meeting old friends, seeing how the kids have grown, big hugs and celebrating each child's achievements. The lows are deep and painful, as we watched a dear friend of ours walk the zoo in honor of their son that they lost just days prior. I feel sheepish saying it was difficult for me and and my family, as I can only imagine the feelings of this dear family. It certainly was a day that we all hugged our children a little longer, squeezed our spouses hands a little tighter, complained less and prayed more. I'm having difficulty just trying to form into words how bad my heart hurt and still does for my friend and her loss.

In honor of his memory and his wonderful, brave, courageous (there isn't enough words) family, we wore blue ribbons and the family had buttons made as well. If i could think of one word to sum up the day of 22q at the Atlanta Zoo 2013 it would be "BRAVERY." I am going to try my best to share why I feel the way I do:

     Families who struggle with a child who have immune issues are BRAVE. They take each illness with both fists in the air ready to fight. They have spent days in the hospital at their child's bedside. They have prepared themselves for surgery after surgery, while wearing a brave face because their child is watching and looking for comfort. Too many times they have laid their child into the arms of a physician or surgeon, while they pray prayers that many families cannot comprehend. They take diagnosis as something "temporary" because they have seen situations turn around that you wouldn't believe. They have seen children overcome the unthinkable- because their faith has grown into one that can move mountains, and has.

     Families who struggle with Speech, Occupational and Physical delays are BRAVE. Every therapy, every plan of care, every goal, they are there with the highest hopes of seeing 100% recovery. While most families talk about their child only being able to say a few words, They have been waiting till their child was 4 years old to say "I love You." Some are still waiting. While children are going to basketball practice and playing t-ball, they are in an office somewhere working on fine motor skills and e-nun-c-ation. And I speak for all of us when I say: We rejoice with you and your child! And with a brave heart, we cant wait for our child to join you on that basket ball team!

     Families who struggle with behavioral and developmental issues are BRAVE. They have learned to take it one day at a time. They pretend not to notice you and your family staring at them. They bow out of birthday parties early, forfeit weddings and family dinners. They struggle between their desire to make their child happy and making their child socially functional. In the midst of this and other issues, they worry if their children will marry and what will happen when they have children. What about College? Will they go to College? And yet every day they speak into them "One day when you get married" and "One day when you have children" and "One day when you become a rock superstar." Teehee.... THEY. ARE. HOPEFUL.

     Families who struggle with schooling their child are BRAVE. Whether it be IEP's or home schooling, they take the educational bull by the horns. They make no excuses for their child's future and with chests puffed out and authority in their voice, demand the best most appropriate form of education for their child. And they don't apologize either.

     Mothers who struggle in the loss of a dream are BRAVE. When they were young woman dreaming of what our families would be like, they weren't imagining this. They weren't prepared for this. This was the farthest thing in their minds. Even in Her weakest hour, alone, when no one can see... and She cries out to God- angry and feeling cheated, She is still BRAVE. She will pull herself together and face another day, and believe it or not, by the grace of God, you will do so gracefully.

     Marriages that struggle are BRAVE. They are fighting a fight that not a lot of other marriages understand. The burden, the heavy, exhausting, weighty burden of fear, anxiety, depression... there are conversations that take place between husbands and wives that you couldn't comprehend. Its hard for THEM to comprehend. But everyday they wake up and start over, trying harder cause that's what their family deserves, and that's what each of them deserve.

     The siblings who struggle living in the midst of a brother or sister with special needs are BRAVE. Daily they have to take the backseat to their siblings needs. Day and in and day out they will watch their brother/sister demand so much attention of their parents. But even in the midst of that they are learning a type of love that many other children their age cannot understand. The level of compassion that is being developed in them is something that most adults never grasp. They are so, so BRAVE. Know that Mommy and Daddy see you, that they love you so very much and they are learning how to navigate their family in manner that elevates each one of their children, in hopes to help develop them into the man or woman God has called them to be.

To the families that boldly and proudly wake their kids up early....
Put on all their 22q awareness wear.....
Drive into Atlanta.....
Walk the zoo.....
And celebrate their child are....
BRAVE!
They are so BRAVE!
To allow their family, in all these struggles, set the platform to raise awareness and hopefully help future generations are so BRAVE! Finding positives in what the world see's as a negative are BRAVE! You know why? Because its a choice. Its a choice that you made, and if given the opportunity, would make again!

     To the families who children are no longer here with us, they are BRAVE. While their child has been made whole and resides in perfection, they are left to bear the scars. Everyday you breathe, you are BRAVE.I cant rationalize why this is the path that has been chosen for you and your families. I find comfort in knowing that this life is temporary and through love of Jesus Christ we will see those babies again. But in this life my heart hurts for those who have suffered loss.
   
     Don't ever give up. In your weakness reach out. There are people who love you, are praying for you, that think of you daily. Your BRAVERY is a very selective, elite form. Even in the midst of many who struggle, you carry a burden that most of us don't understand. Know there is a world of families who pray for your broken heart to be made whole and to help give you purpose from this unbelievable pain.

(I love ya girl, you know who you are.)

    I'm anxious to see our 22q family at the zoo next year.  Its such a blessing that there is a group of people who have organized this event, worldwide, to help raise awareness for the....
ready for it?.....
 "most uncommon rare disease" ever!
And to be able to laugh at a title like that is BRAVE.

Help Us To Remember

Help Us Remember
(Author Unknown)

Heavenly Father,

Help us remember that the jerk who cut us off in traffic last night is a single mother who worked nine hours that day and is rushing home to cook dinner, help with homework, do the laundry and spend a few precious moments with her children.

Help us to remember that the pierced, tattooed, disinterested young man who can't make change correctly is a worried 19-year-old college student, balancing his apprehension over final exams with his fear of not getting his student loans for next semester.

Remind us, Lord, that the scary looking bum, begging for money in the same spot every day (who really ought to get a job!) is a slave to addictions that we can only imagine in our worst nightmares.

Help us to remember that the old couple walking annoyingly slow through the store aisles and blocking our shopping progress are savoring this moment, knowing that, based on the biopsy report she got back last week, this will be the last year that they go shopping together.

Heavenly Father, remind us each day that, of all the gifts you give us, the greatest gift is love. It is not enough to share that love with those we hold dear. Open our hearts not to just those who are close to us, but to all humanity. Let us be slow to judge and quick to forgive, show patience, empathy and love.

AMEN.

Like this post? You might also like: 'Twas The Month Before Christmas

Welcome To Holland

My Grandmother is a well traveled woman. She has been all over the world, especially Europe. Growing up I would flip through her photo albums and one in particular were photos of her and a girlfriend visiting in Holland. She would say to me that of all the places in the world, Holland was her favorite. It was surprising to her, because Holland wasn't exactly at the top of her list. 

 But once being there, she had already made up her mind she would visit again, and I believe she did! So imagine my surprise as I read the following story. A friend of mine had posted it on Facebook, and while reading it, my eyes welled. You ever have those moments where things start to weave into each other? Maybe it comes with getting older and seeing things differently... but lately I have been having a lot more moments like these. This story is the absolute best metaphor for explaining what its like to raise a child with special needs. And now, more than ever, do I want to actually visit Holland.

Welcome To Holland 

By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.      The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Like this post? Here's one that's similar: Dear Lady In The Urgent Care Waiting Room

Regular Moms VS Special Needs Moms

Regular Moms VS Special Needs Moms 
Written by: Dawn Villarreal

Regular moms tell their kids to wake up and get dressed in the morning.  And they do it.
Special needs moms put on battle gear to get our kids ready to start their day.

Regular moms ask their kids if they brushed their teeth.  
Special needs moms prompt, “Brush your top teeth.  Brush your bottom teeth.  Did you get the sides?  Open your mouth.  My God, give me that toothbrush!  You’ve left half your meal in there!”

Regular moms wave goodbye as their kids run off to catch the school bus.
Special needs moms get awesome door-to-door bus service for their child.

Regular moms know the names of all their friends.
Special needs moms know most of their friends by their username.

Regular moms complain about driving their kids to sports and recreation classes.
Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.

Regular moms’ kids have a teacher.
Special needs moms’ kids have a team.

Regular moms talk about accomplishments.
Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms relax with their kids during the summer.
Special needs moms start their second job as home teachers, therapists and skills coaches.

Regular moms think accommodations refer to hotels.
Special needs moms have memorized the top 20 accommodations for their child.

Regular moms hope their child finds a good career.
Special needs moms are hopeful someone gives our child the chance to work.

Regular moms soak in the tub when they want to unwind.
Special needs moms consider a bathroom break a luxury.

Regular moms enjoy reading the latest best selling book.
Special needs moms should receive an honorary degree for all the disability books they've read.

Regular moms go out for dinner and a movie with their husbands every month.
Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms complain their kids won’t eat their vegetables.
Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.

Regular moms’ kids go to play groups.
Special needs moms’ kids go to therapy groups.

Regular moms meet for a ladies night out.
Special needs moms get together at support groups and forums

Regular moms have medical claim forms that fit in one file folder.
Special needs moms will tell you a small forest was cut down so we could receive our claims.

Regular moms think OT means overtime.
Special needs moms know more acronyms than a NASA engineer.

Regular moms have time to cook a full dinner every evening.
Special needs moms will never admit how many times we've picked up fast food.

Regular moms complain their husbands sit on the couch and watch TV while they do all the work.
Special needs moms...well how about that?  Some things do stay the same!
(Just kidding dads, we know you do your part!)

Regular moms worry about fat and sugar in their children's diets.
Special needs moms worry about gluten, casein, oxalates and have a working knowledge of (FDA approved) food additives.

Regular moms spend a week teaching their sons to pee in the potty and maybe a month teaching them to poop.
Special needs moms keep trying, sometimes for several years.

Regular moms volunteer in the classroom to help out.
Special needs moms volunteer so they can take notes on whether the school program is appropriate for their child.

Regular moms look forward to an "empty nest."
Special needs moms wonder who will take care of their kids after they're gone.

Regular moms have the numbers of their friends programmed into their cell phones.
Special needs moms have the numbers of their child's specialists programmed in theirs.

Regular moms’ kids are mildly afraid of the dentist.
Special needs moms’ kids are so terrified, 9 out of 10 dentists will ask them not to come back.

Regular moms can plan a simple vacation at the spur of the moment.
Special needs moms have to plan vacations months in advance to make sure that appropriate accommodations can be made for their child.

Regular moms sign their kids up for all kinds of extra-curricular activities.
Special needs moms hope their local park district will accept their child for an activity.

Regular moms get annoyed when their child won't stop talking.
Special needs moms would do anything to hear their child utter one word, 'Mom'.

Regular moms get to go on vacations during long weekends or when school is out.
Special needs moms vacation...well you KNOW we don't do that.

Regular moms are obligated to go to every family gathering and stay to the bitter end.
Special needs moms has a built in "get out of jail" card for these events. e.g. "Whoops! Gotta go! Wouldn't want Junior to go on sensory overload."

Regular moms send Christmas cards to their friends and family.
Special needs moms send Christmas cards to friends, family AND the medical team and specialists that helps take care of their child.

Regular moms show up to their kids' activities and watch from the sidelines.
Special needs moms get to work prompting and herding their child in each activity.

Regular moms think OT stands for over time.
Special needs moms hear OT and think occupational therapy.

Regular moms worry about their child being picked on in school.
Special needs moms know their child will be discriminated against for their entire lives.

Regular moms tell their child to get dressed.
Special needs moms have to dress their child multiple times before leaving.

Regular moms fight with their child to pick which clothes to wear.
Special needs moms fight with their child to try to keep any clothes on all day.

Regular moms are on a first name basis with other moms in their neighborhood.
Special needs moms are on a first name basis with their child's pediatrician, neurosurgeon, gastroenterologist and other specialists.

Regular moms hope they have enough food, goodies, etc. at their children's party.
Special needs moms hope that other children/adults will show up.

Regular moms occasionally worry about one or two allergies.
Special needs moms have memorized the top 75 allergens, preservatives, chemical additives and toxins.

Regular moms worry about spoiling their kids with too many toys.
Special needs moms will buy half the store if there's a chance something will get their child playing instead of stimming.

Regular moms' stress levels raise from a 3 to a 10 if their child needs stitches or tubes in their ears.
Special needs moms' daily stress levels are already at an 8 so stitches or tubes in ears can actually be a step down from the day to day stresses.

Regular moms think PT means part-time.
Special needs moms hear PT and think physical therapy.

Regular moms forward funny mom e-mails to each other.
Special needs moms can only send this list to other special needs moms--regular moms would be offended if we suggest they don't understand what we deal with everyday.

The Misunderstood Child

The Misunderstood Child

A poem about children with hidden disabilities

...by Kathy Winters

I am the child that looks healthy and fine.

I was born with ten fingers and toes.

But something is different, somewhere in my mind,

And what it is, nobody knows.

I am the child that struggles in school,

Though they say that I'm perfectly smart.

They tell me I'm lazy -- can learn if I try --

But I don't seem to know where to start.

I am the child that won't wear the clothes

Which hurt me or bother my feet.

I dread sudden noises, can't handle most smells,

And tastes -- there are few foods I'll eat.

I am the child that can't catch the ball

And runs with an awkward gait.

I am the one chosen last on the team

And I cringe as I stand there and wait.

I am the child with whom no one will play --

The one that gets bullied and teased.

I try to fit in and I want to be liked,

But nothing I do seems to please.

I am the child that tantrums and freaks

Over things that seem petty and trite.

You'll never know how I panic inside,

When I'm lost in my anger and fright.

I am the child that fidgets and squirms

Though I'm told to sit still and be good.

Do you think that I choose to be out of control?

Don't you know that I would if I could?

I am the child with the broken heart

Though I act like I don't really care.

Perhaps there's a reason God made me this way --

Some message he sent me to share.

For I am the child that needs to be loved

And accepted and valued too.

I am the child that is misunderstood.

I am different - but look just like you.

[Kathy Winters is a part-time writer and full-time mother of three. She has a 14-year-old son with Asperger Syndrome and an 11-year-old son with ADHD/Tourettes Syndrome. She welcomes your comments.]

copyright © 2003 by Kathy Winters

Twas The Month Before Christmas

I have heard this before, but thought I would share.... I challenge you- for every person who says "Happy Holidays" this season, to simply respond back with "Merry Christmas...." Here's why:

Twas the month before Christmas

When all through the land

Not a Christian was praying 

Nor taking a stand.

See the PC Police had taken away

the reason for CHRISTMAS -no one could say.

The children were told by their schools not to sing

about Shepherds and Wise Men 

and angels and things...

"It might hurt peoples feelings," the teacher would say,

"December 25th is just a Holiday."

Yet the shoppers were ready with cash, checks and credit,

Pushing folks down to the floor just to get it!

CDs from Madonna, an XBOX, an a I-pod....

something was changing,

something quite odd!

Retailers promoted Ramadan and Kwanzaa

in hopes to sell books by Franken & Fonda.

As Targets were hanging their trees upside down,

at Lowes the word "Christmas"was no where to be found.

At Kmart and Staples and Pennys and Sears

You wont hear the word Christmas, 

it wont touch your ears. 

Inclusive, sensitive, DI-VER-SI-TY

are words that were used to intimidate me!

Now Daschle, now Darden, now Sharpton, Wolf Blitzen!

On Boxer, on Rather, on Kerry, on Clinton!

At the top of the Senate, there rose such a clatter.

To eliminate Jesus, in all public matter.

And we spoke not a word, as they took away our faith.

Forbidden to speak about salvation and grace.

The true reason of Christmas was exchanged and discarded.

The reason for the season, stopped before it started.

So as you celebrate "Winter Break" under your "Dream Tree"

while sipping your Starbucks, listen to me: 

Choose your words carefully, choose what you say,

Shout MERRY CHRISTMAS, not "happy holiday!"

Vote like Christian

Almost 10 years ago I met a little boy named Christian. He had bright blue eyes and dark hair, and was an instant favorite of mine in the class I taught. He had a vivid imagination that kept me and the other teacher well entertained :)

Fast forward to the election of 2004. I was standing in line to vote and it just so happened that Christian and his Mom were behind me. I hadn't seen them in awhile and we began making small talk. And then Christian chimed in- "Well, we are not voting for Kerry because he wants kill unborn babies." I was in shock, to say the least. This little 5 year old so bluntly professed in a large group of people what his families believes. My eyes darted around as I tried to catch the reactions of others. His mother nodded in agreement with him and seemed completely unphased and we continued on with our conversation.

I thought about Christian yesterday. I thought about that day. I thought about my feelings then and my feelings now. It got me thinking about my own kids.

If we want to see change in this country, we must start in the home. Our children must be taught the biblical truths and see those being supported by their parents, so when they are out in the world they wouldn't sway, but stand firm and confident. When they speak the truth, that we don't "shush them" out of fear of the majority. I want my kids to vote like Christian. It has to start now. If you don't influence your children, someone else will. Disney will. Sesame Street will. Public schools will. Social media will. College campuses will. I could go on and on. 

Don't make the mistake of leaving it up to the church, to church leaders and groups either. Don't think that the private school they attend or the denomination they are affiliated with is enough for your children. For the future of our country we must raise up a Christian nation in our HOMES.

I'm greatly disappointed in the majority of my generation. And in that, Disappointed in the Fathers and Mothers of this generation. We, as a nation have let grey areas seep into our convictions.... and loop holes into Gods word, and began teaching a new spin on "separation of church and state." 

And I commend families like Christian's, who obviously discuss these moral issues with their children. Too young, you might say? Well then let all those political ads about abortion and contraceptives and planned parenthood teach your children for you...... like I said, if you wont, the enemy will.

This isn't a political post. This is a family issue. If we want our children to be "Christian" voters, then we must raise them that way. starting now. 18 IS TOO LATE.

I voted like Christian yesterday.

...Believe....

You just gotta "believe."

I've said it. 

You've said it. 

Easier said then done. 

A little over a year ago I was at an all woman's service standing in the alters. I had went for prayer with my boys on my heart. When the pastors wife approached me she stopped and said "I feel the spirit of the Lord saying to you 'BELIEVE!' If you would just have faith and 'BELIEVE!'" 

Honestly, I was a little taken back. I know the Lord spoke to me that night, but what he was addressing was so much deeper than what I was approaching Him with. I thought to myself  "Lord, I believe in you. I have faith. I trust you... I don't understand."

I find myself at times being a little too "real" with myself. The realist in me will factor in statistics and numbers and the likelihood of the result and in that I will shrink God into whatever nominal factor that will fit into the equation. In that I will trust in an outcome that seems reasonable to the circumstance. 

Its easy to believe when you lower your expectations to something that wont be as devastating if the outcome fails you. Your lowering your standards on who God is.

Shame is stirring inside even as I write. I don't like that I fall repeatedly back into this...

In my prayers I find myself saying "I believe God that you can do this" but I walk away thinking "but I don't think you will." 

Conviction falls on me as I'm reminded of all the "limited" prayers I've prayed. 

Thank you Lord for your GRACE. When fear makes my image of you distorted, you show up REGARDLESS and answer prayers in the midst of my doubt. 

When I think of Sophia, I think of this. When I think of all my children, I think of this. 

When I was first told about Sophia's Cleft lip and the array of speculation, I walked around constantly praying "Lord if you would just show up one more time. Just one more time. I will never ask anything again, just one more time." I was struggling as to who He was and what I believed Him to be. And He would remind me "If you would just believe." 

"Believe that I can miraculously heal a child inside the womb.

Believe that I can loose a child's tongue and heal their mind.  

Believe that I can replace a missing chromosome. 

Don't reject My will for your life and let it effect your faith. 

Believe in My will for you life.

For their lives."

And as I remind myself, I wanna remind you too: 

Don't limit Gods power in your life. Don't limit your expectations of Him. "BELIEVE!"