Wordless Wednesday, October 26,2011

**Yes, I know it’s been a few weeks since I did wordless Wednesday….but I am back this week! 🙂 **

His eyes….

How I wish I could see things as He sees them…..

How I wish He could find the words to tell me….

I love you, my sweet boy….

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It Takes a Village

“It takes a village to raise a child.”

Author: Unknown

It is a well known saying. It is a saying I have heard many times since my children were born. It is one certain people throw in my face when I try to tell them that their criticism and judgment on how my husband and I raise our children, on how we must be doing something wrong as they have just observed our pre-teen son, who happens to be autistic, have a meltdown, and He is too old to behave that way, that all this negativity is not welcome. “Oh we are just trying to help” Please….

That being said, I am learning share the burdens I bear with others who “get it” who are not critical, negative and judgmental. I am building my village, and the realization that I do not have to walk this road alone is an amazing feeling.

I have begun the process of finding out if my oldest daughter also lands on the spectrum. Letters have been written to the school she attends. I have discussed my concerns with our pediatrician. My husband and I sat down and discussed it with her and found out her concerns, her fears, her questions “Why do I feel like I don’t fit in mom?”

It was scary the first time around, with our son, and it is scary this time around.  Just typing it out here is overwhelming…It rips my heart out to hear my daughter upset because her best friend, one of a list of friends that is so short I can count it on my fingers, moved away.  Last night I took her to a concert our church was hosting for the youth group, but it was too loud, and a major sensory meltdown was the result. My heart broke for my daughter, but I forced myself to hold in my own tears as I worked to console my child, to find out if she wanted to stay, or go home. I say all this to say what happened next. As I worked to calm my child, I felt a love I have NEVER felt before. A group of ladies I have come to call friend surrounded us. They hunted down some Tylenol for my child, they helped keep me calm, they helped console my girl, they let her know it’s ok, they let me know I am not alone. They encircled us and surrounded us with so much love. They prayed with us. Then one of the young ladies from our amazing youth group came out to check on my girl, to tell her ” I wanted to make sure you were ok.”

My sweet girl decided we would leave early, she wanted to go home. On the way home, I could no longer hold in my tears as she said something to the effect of ” It is nights like this when I know who my true friends are. They love us even when we fall apart”. It was at that moment as we drove home, both of us in tears, that I realized the wagons had been circled, and we are going to be ok. I didn’t have to face this alone, and my girl doesn’t either.

My friend Jess over at Diary of a Mom wrote today about her Village. She said “We are different. We come from dramatically varied walks of life. I dare say our paths might not have crossed in any other way. Yet the feeling that we were MEANT to be friends is undeniable. These women heal me. Their very presence in my life is a salve.” YES!!!!

Each of the women in my own small village have been brought into my world , some via church, some via Miracle League  baseball, some I only know via Facebook and the autism Momma blog circle I have found myself in.  We are an eclectic bunch, Military wives, Special needs Mommas, and though our journeys are all different, we walk the road together. We lift each other up, we inspire, we laugh, we cry, we encourage. These ladies know what I mean when I want to shout from the rooftops because my son ASKED for a birthday party. These ladies understand when I want to cry because my kids want “Daddy home now” but he can’t come home due to whatever training thing the Military has him off doing. These ladies don’t judge me because my house is not spotless, or tell me I am a failure when my child has a meltdown.  They don’t tear me down, they build me up, and I can only hope that I do the same for them. The people in my village don’t try to “fix me” or “fix” my kids, they accept, they love….

“When we honestly ask ourselves

which person in our lives mean the most to us,

we often find that it is those who,

instead of giving advice, solutions, or cures,

have chosen rather to share our pain

and touch our wounds with a warm and tender hand. 

The friend who can be silent with us in a moment of despair or confusion,

who can stay with us in an hour of grief and bereavement,

who can tolerate not knowing, not curing, not healing

and face with us the reality of our powerlessness,

that is a friend who cares.” 

~Henri Nouwen

Do you Know….?

*Warning, venting today….*

Do you know what it feels like to be told “Your child may never speak.”?  To live each day trying to reach a child who is totally withdrawn into his own world, no eye contact, no affection, no words…..

Do you know the overwhelming tears of joy when at 4 years old, that child who “may never speak” says “Mommy”?

Do you know what it feels like to watch your husband ache because his only so appears to want NOTHING to do with Daddy?

Do you know what it feels like to be told “your just a bad mother, there is nothing wrong with that child” on every turn….from people who are SUPPOSED to make up your support structure?

Do you know what it feels like to watch your non verbal child struggle with rejection because family members spoil his sisters, ignore him, and then say “Oh he wont notice anyway”? Guess what..HE DOES NOTICE!

Do you know what it feels like to have the same family members mentioned above, accuse you of talking bad about them to said non verbal child, because “He wont hug them, and it MUST be your fault, because…he doesn’t notice how they ignore him”?

Do you know what it feels like to hear time and again “Your best is not good enough”, “Your not doing anything right”, ect. Over and over again?

Do you know what it feels like to be up in the middle of the night, multiple times, with a child who has just had a seizure?

Do you know what it feels like to try to explain to your younger child why her brother wont play with her, why he is different, why…why…why?

Do you know what it feels like to have to choose between staying at family functions to “keep the peace” or scooping your “borderline on a meltdown” child up and taking him home so he can escape the sensory overload?

Do you know what an IEP meeting is?

Do you know what it is like to spend every waking minute looking towards the next Dr. Apt, or IEP meeting? fighting with insurance companies, and doing all you can to make sure your child gets the treatments, therapies, tests, and help that he needs just to survive in this world……

Do you know the pain in your husband’s eyes as he talks about things he wishes he could do with his son…football, motocross, baseball..ect. ?

Do you know what it’s like to realize that you have not one, but two children with disabilities?

Do you know what it is like to doubt your every move?

Do you know what it is like to face countless meltdowns? the screaming for HOURS, the trying to keep your child from hurting himself as he bangs his head against the wall?

Do you know what it is like when your child is having a meltdown, and somebody who is SUPPOSED to be part of  your “Village” turns to you and says “he is too old to be acting like that.He is high functioning, and high functioning autistics dont have meltdowns”?

Do you know what it feels like when your own child hits you, not out of anger or to be mean, but because he doesn’t understand, and doesn’t know the words to express what He wants yo say?

Do you know the tears a mother cries when her children are not looking?

If you can answer yes to the questions I asked, I wish I could reach out and Hug you! We walk this journey together, yet often feel so very very alone. If, however, you can’t answer yes to the questions above, then STOP JUDGING those of us who can. We don’t need your pity, we don’t need your criticism, or dirty looks. We are doing the BEST we Know how for our children, and YES, Our best IS good enough, because if WE don’t fight for our kids, WHO WILL?

*Disclaimer…This is in NO way directed to those of you out there who can answer no the the above, yet still actually HELP, support, and ARE a part of our village!. To you I say THANK YOU!*

A Legacy of Love

On October 6,2011, my Grandma turned 90.  I have been working this week on collecting photos for my mom who is doing a slideshow for Grandma’s 90th birthday party. As I have been going through Piles and piles of Photos ( in case you are new here, Photos are kinda my “thing”) , it has taken me on a wonderful journey down memory lane. A journey full of laughter and tears.

I grew up a mile up the road from my grandparents, and what a blessing that was. They were a HUGE part of my life.  Granted, there was a time, when I did not see it this way, when I was in full blown rebellious teenager mode, and the fact that My mom would confide in grandma when I was being extremely difficult meant I would get TWO lectures, one from mom, and then one from Grandma ( looking back I think Grandma’s were harder to face). As I look back on those years now, I am thankful that Grandma was there for my mom, because I KNOW I was AWFUL! The other thing that stands out for me about that time in my life was that Grandma and Grandpa, and mom and Dad NEVER gave up on me, Never stopped praying, never stopped loving me. I could not see it at the time, but I see it now, and I know without a shadow of a doubt that their non stop prayers are what brought me back to where I am today, what helped make me the woman I am.

As I looked through photos going back to before I was born, to when My Dad was a kid….and then to my own childhood, and then the ones of my own kids with my grandma, the one theme that stood out bigger than any other was the Love , Love for family, Love of Laughter, Pure, Unconditional Love.

My Grandparents lived on a dairy farm, as did my parent. There was where I learned the value of hard work. Grandma had a HUGE Garden, and a swimming pool. Us grand-kids LOVED to get in the pool, but we had to help Grandma in the garden first. I can remember helping pick vegetables, Pails FULL of them, and then Grandma laughing when we got back up to the house because she KNEW there had been more in the bucket when we left the garden that there was by the time we got to the house, especially the peas…there was usually a trail up the driveway from the garden to the house of empty pea pods.

When we were not helping Grandma in the garden, we were in the swimming pool, or she was giving one of us a piano lesson. Grandma LOVED Music, she was a retired music teacher, and her house was FULL of music boxes. I used to help her clean her house, and she would laugh because as I went through dusting shelves, I would wind up EVERY Music box and have them all going at once, something I still do to this day ( though my collection is substantially smaller than hers was). Probably my biggest regret, something Grandma was right about, was that at 13, I stopped taking Piano lessons. I remember her telling me that someday I was going to wish I had kept playing, but I was 13, and I thought I knew everything…boy was I wrong!

One of my favorite memories is the annual Christmas Eve service we used to go to at the Lutheran Church. I grew up in a small rural community ( my high school class was only 39!) so EVERYONE knew everyone…but what Stands out the most for me was, Grandma playing the organ, the kids doing the Christmas Pageant, and then at the end of the service, silent night, candlelight, me playing my flute and Grandma accompanying on the organ….it is one of those “peaceful moments” I cherish and pull out on the rough days.

Another thing that stands out in my mind is the value of family. Grandma seemed happiest when she had a house FULL. We Got together Often….Birthdays, Holidays, and sometimes, just because. The grown-ups would talk, Grandpa would be watching Football, or Basketball, or Baseball…depending on the time of year, and us kids would play. If the weather was nice, we would be outside, but on the days we were stuck indoors, Grandma’s House was PERFECT for Hide and seek, and the sounds of kids laughing and Grandma reminding us “Don’t run in the HOUSE!” ring in my memory.

This value of Family rang true time and again. When my cousin Alex, who is the youngest of all my cousins, was diagnosed with Autism, my family rallied around them, and the support and love rang true. I was in full blown rebellious teen mode by this point, but I still noticed it. This was my first experience with Autism, and little did I know, it was to be something I would need in the future, a Very important look into how to stand by someone who is hurting, to love without question, and that sometimes just being there is more important than all the advice in the world. I saw this again when my own son was diagnosed with Autism, and my Family surrounded us with Love , Prayer, and support that continues to this day, even though we live 20+ hours away.

As I think about my grandma, I can’t write this without stating again the power of her prayers. There is a quote floating around that says, “Be the kind of woman that when your feet hit the ground each morning, the devil says, “Aw crap, She’s up!” “…That’s my Grandma. There have been moments in my life that have been dark, when my faith has been less than evident, when I was running from God, and in those dark hours, there has been a presence that I can’t explain, but I KNOW that it was and is because of the prayers of my Grandma and my mom. ( and Grandpa and Daddy too…but this is about the women who inspire me most).

Grandma taught me a lot about love in other ways too. I remember thinking as I watched her and Grandpa….I want a love like that someday, a Love to stand the test of time, a love of a lifetime. Grandpa passed away 5 years ago, and OH I miss Him so, but that legacy of love lives on….

“I’ll be lovin’ you, always
With a love that’s true, always
When the things you’ve planned need a helpin’ hand
I will understand always, always

Days may not be fair, always
That’s when I’ll be there, always
Not for just an hour, not for just a day
Not for just a year but always

Days may not be fair, always
That’s when I’ll be there, always
Not for just an hour, not just a day
Not for just one year but always”

Grandma’s Love, Prayers, laughter, lessons on life …..she has given me so much more than anything money could EVER buy. I am SO Thankful and blessed. I wish I could be at her 90th Birthday party, but There is just no way to make that happen, so I am celebrating her legacy in my own corner of the world. I love you Grandma. Happy Birthday…..

We, your children, Grandchildren and Great Grandchildren, are your legacy.

You have taught us so much about Faith, Hope, Love, Prayer and Life.

We Love you.

1 Corinthians 13

 1 If I speak in the tongues[ of men or of angels, but do not have love,

I am only a resounding gong or a clanging cymbal.

2 If I have the gift of prophecy and can fathom all mysteries and all knowledge,

and if I have a faith that can move mountains,

but do not have love, I am nothing.

3 If I give all I possess to the poor and give over my body to hardship that I may boast,

but do not have love, I gain nothing.

 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud.

5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

6 Love does not delight in evil but rejoices with the truth.

7 It always protects, always trusts, always hopes, always perseveres.

 8 Love never fails. But where there are prophecies, they will cease;

where there are tongues, they will be stilled;

where there is knowledge, it will pass away.

9 For we know in part and we prophesy in part,

10 but when completeness comes, what is in part disappears.

11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child.

When I became a man, I put the ways of childhood behind me.

12 For now we see only a reflection as in a mirror; then we shall see face to face.

Now I know in part; then I shall know fully, even as I am fully known.

 13 And now these three remain: faith, hope and love. But the greatest of these is love.

At Grandma’s house, there was always laughter ringing, someone smiling, someone dreaming, words of kindness spoken, children singing…..Grandma played this song for my wedding, and it rings so true, for my childhood home, for Grandma’s house, and I am doing the best to ensure it rings true for my own home…

A Footprint, A ripple, A Ding…what’s your impact?

I will be the first to admit I usually do not get caught up in all the hullabaloo when a celebrity  dies. Frankly, most of them are not the types of role models I would want for my kids anyway. My brother said it best on Facebook today……

“I wonder what this world would be like if people paid as much attention to every soldier, firefighter, cop, or medic killed serving their country or community, as much as people care about Steve jobs or whatever other big name has passed? Don’t get me wrong, He was a great man, I don’t much care for apple as the company is today, but he was indeed a visionary and a driven man, however, my point remains. Oh well, at least he was famous for something beyond being famous, perhaps now we can stop hearing about the Michael Jackson trial??” ~D.C.S.

and I agree with him…well mostly.  This was my response on Facebook: “I agree with you 100% Kiddo! The main reason I even KNOW who Steve Jobs is ( yeah, ok I admit I am not a techie) is because of the HUGE Impact He made on the Non verbal…Autism community…His work has given so many who didn’t have it before a voice, especially in the past couple of years with the introduction of the I-pad and the apps that have been proven to reach kids with disabilities like never before…and for that, this momma is forever thankful. and yes, to stop hearing about the Michael Jackson trial would be nice! LOL”

But it goes deeper than that.  As a whole, our sense of priorities is Topsy turvy. The media drones on to exhaustion about this celebrity or that….but we don’t ever hear about all the unsung heros, the true role models, soldiers, firefighters, cops, or medics, and maybe they prefer it that way? after all part of what makes them such excellent role models is that MOST of them will tell you in a heartbeat “I am no hero, I was just doing my job”.

All this got me thinking about the impact we leave behind. My thoughts turned to my Godfather, Keith Raymond Handy, who went home to be with our Father in heaven  in January 1993 after 66 years (12/26/26-1/29/93).  It has been 18 years, and yet the impacts this man of Faith had on my life are still there. The Value of a good strong hug ( not one of those small squeezes, but a good bear hug), and a smile, the importance of prayer, and the value of family. His death was one of the hardest I have ever had to face, and did not face for the longest time. I was a senior in High school at the time, and I did not know HOW to deal with it. I locked it away.

This brings me to the next role model whose death I had to face, My grandpa Settle who went home to Heaven in February of 2006. Grandpa’s “footprint on my heart” is HUGE.  The memories go deep. A Love of all things History, a true understanding of “His eye is on the Sparrow”, The value of a kind word and a smile to brighten somebodies day. I can remember thinking to myself after my husband and I got married, and I saw my grandpa still looking at my grandmother like he looked at her in the photos I had seen of their wedding day, was “wow, I want THAT…a love for the ages, a Marraige that can stand the trials of life and the test of time.” truly a rare thing these days….

Now, it is 2009…and I am faced again with saying goodbye, to my other grandpa. This man taught me the value of the spoken word, the joy of a game like chess or scrabble, and the value of making time to sit for hours and work on a puzzle with someone, that the reward is not the end result of the game or puzzle, but the time spent.

You see, it’s all about how we LIVE, that effects what we leave behind. My thoughts travel to a young man who left his mark on the world in a HUGE way. He was taken home to be with God at the young age of  21.  His lifesong is still singing…His witness for Christ still shining. He is deeply missed by all who knew and love him, but at the age of 21, he had already made such a HUGE Impact on this world.

All this brings me back around to Steve Jobs. Why do I even take notice? what makes him different than any other “celebrity”?  I take notice because this man, and his company have made a way, via technology for parents of children with special needs to communicate, to bridge a gap that for whatever reason exists on a communication level.  He left an impact, a footprint because he has given to families who may never hear a spoken word from their child, a way to communicate, Apps to make their lives a little bit easier ( and ok, yes, I know , The I-pad and its apps may be out of reach for some…my own kid included) but, that doesn’t change the impact this has had on the community at large.

“Almost everything–

all external expectations, all pride, all fear of embarrassment or failure–

these things just fall away in the face of death, leaving only what is truly important.

Remembering that you are going to die is the best way I know

to avoid the trap of thinking you have something to lose.

There is no reason not to follow your heart.”

–Steve Jobs

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

~~Steve Jobs~~

To the Charlie Sheens and Lindsy Lohans of this world…..stay away from my kids, they don’t need role models like you. I will do everything I can to keep them grounded, to teach them the value of a smile, a kind word, a prayer and a hug, to remind them that its the Soldiers, Firemen, Cops, and Medics who keep us safe, it’s the Farmers who work tirelessly, its common everyday people who give their all. It’s the dreamers like Steve Jobs, and Albert Einstein, Brahms and Mozart, who truly make a difference and will be long remembered. To quote My Friend Jess over at DOAM: “Steve once said, “I want to put a ding in the universe.” I hope as he closed his eyes last night, he left us knowing that he did. He sure  did.” What’s Your impact?

This is my prayer for my own life…

“I may not be every mother’s dream for her little girl
And my face may not grace the mind of everyone in the world
But thats alright as long as I can have one wish, I pray
When people look inside my life, I wanna hear them say

She’s got her father’s eyes
Her father’s eyes
Eyes that find the good in things
When good is not around
Eyes that find the source of help, when help just can’t be found
Eyes full of compassion, seein’ every pain
Knowing what you’re going through, and feelin’ it the same

Just like my father’s eyes
my father’s eyes
my father’s eyes
Just like my father’s eyes

On that day when we will pay for all the deeds we’ve done
Good and bad they’ll all be had to see by everyone
And when you’re called to stand and tell just what you saw in me
More than anything I know, I want your words to be

She had her father’s eyes, her father’s eyes
eyes that found the good in things when good was not around
eyes that found the source of help when help would not be found
Eyes full of compassion, seein’ every pain
Knowin’ what you’re goin’ through and feelin it the same

Just like my father’s eyes,
My father’s eyes,
My father’s eyes,
Just like my father’s eyes,
My father’s eyes,
My father’s eyes”~Amy Grant

“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes…

the ones who see things differently — they’re not fond of rules…

You can quote them, disagree with them, glorify or vilify them,

but the only thing you can’t do is ignore them because they change things…

they push the human race forward, and while some may see them as the crazy ones,

we see genius, because the ones who are crazy enough to think that they can change the world,

are the ones who do.”

~Steve Jobs~

Rest in Peace

Tears…..

There is a Photo floating around Facebook of a quote , I shared it on my personal wall a few days ago already…but  it is getting a blog post because…well it fits my day today.

I know I seem to cry a lot at church…

but its something about being in a place where I get reminded I am NOT alone that just turns on the tears….

It’s the overwhelming presence of God’s love….

It’s climbing up in Abba Father’s lap and curling up and crying and letting go of all the cares on my heart….

It’s the hugs and smiles from people who care about me and my family, and whose support and prayers get me through the days when I feel like I cannot handle another meltdown, or fight another Battle, when all that is in me screams for a break….

I cry for so many reasons…..

I cry for my children, for my oldest daughter who struggles socially, for my son whose verbal skills are getting there, but no where near what they should be for a “typical” 12 year old…..

I cry for my youngest daughter who wants nothing more than her 2 older  siblings to play with her….my social butterfly, my princess….

I cry for the hurts dealt by people who don’t “get it” who say things like ” He is just spoiled, your a bad parent”, or “that child is ruining his sisters lives”…and a laundry ist of other hurtful things.

I cry for those same people who don’t “get it” because they can’t, or wont, see past a disability and are missing out on a wonderful, loving boy who has so much to give….

I cry for my husband, who works to the point of exhaustion to provide for our family, yet it never seems to be enough. There is always another treatment, or medicine, or special diet item insurance wont cover…..

I cry for my husband, for the ache I see in his eyes with the knowledge that His only son is not playing with “age appropriate toys”, his only son may never play football, or ride a bike, who can’t pass on his love of motocross to his only son, who aches for all those father son moments…..

I cry for my husband, who misses his best friends, who no longer “goes out with the guys” because, well “the guys” live too far away, and it’s achingly hard to make social connections while fighting to raise special needs children….

I cry for my own social life, for the same reason listed above….

I cry for those precious days, the smallest of moments that I cherish so deeply, the first time my son said “Mommy” at 4 years old…the first time he acknowledge he dose in fact like spending time with his sisters….the day he declared, very loudly, for all the ballpark to hear ” That’s My BEST FRIEND!”….moments that to some seem so insignificant, yet to me, they are HUGE!!!!!

I cry because it’s the simple things like a phone call or a hug that remind me that I am NOT alone. There was a time when I thrived on social contact. now my social contact is limited to church, and the grocery store….

I cry because I ache for friendships I miss dearly…people who have impacted my life so deeply they are counted as “Family”. Who, even though we, or they have moved away, still care enough to keep in touch, who have left “footprints on my heart”.  People who I miss with every fiber of my being, because they have seen me at my worst, and still love me….

I cry for my side of the family only gets to see my children once a year, IF that…and yet they are my strongest support in the journey of raising children with special needs. They love unconditionally, see past the disability, and accept all THREE of kids, no playing favorites….

I cry for no other reason than I just need to, because I can’t cry in front of my kids…because I have to stay strong to deal with meltdowns, and Dr’s, and IEP meetings, and face people who do not understand, who judge and are critical of my every move…..

I cry because I am utterly and totally exhausted…..

I cry for all this, and so much more….

So, please if you see me crying, don’t feel sorry for me. Please don’t pity me. Pray for me, love me, but please don’t pity me. God gave me this journey, and His strength is the ONLY thing that gets me through each day, because I CAN’T do this on my own…..

If you feel you NEED to do something to help, remember, a phone call to see how I am doing means the world. Sometimes something as simple as a hug is all that is needed.  Offering to take all three kids would be great! ( though I understand completely that my kids have challenges that few understand, or know how to handle). For those of you who have surprised us with “I am ordering you guys pizza tonight” you have NO idea how HUGE that means to me, to not have to worry about dinner for a night. For those of you who have picked my girls up on weekends that my husband is gone for Military training so they will not miss church, or that youth group function, or AWANA, or those who help out with getting them to softball practice and games while He is gone, again…HUGE Thank you’s!!!

I leave you with this song from Twila Paris….

“Lately I’ve been winning battles left and right
But even winners can get wounded in the fight
People say that I’m amazing
Strong beyond my years
But they don’t see inside of me
I’m hiding all the tears

They don’t know that I go running home when I fall down
They don’t know who picks me up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child….”