Monday, May 12, 2014

From Where I Stand...Mother's Day

Another Mother's Day has come and gone, and I've found myself reflecting some already this morning.  In many different places I read statuses and blogs calling for sensitivity for those who are childless but who don't want to be.  Or for those who've lost their mother.  Or those who maybe had a less than idea childhood therefore leaving Mother's Day a sad reminder.  I, personally, don't fall into one of those categories, only by the grace of God, so, being reminded of those who face different circumstances is needed for me.

Yet, I think back to Tuesday night, as I laid in our bed, the room dark, the house quiet, with Brandon next to me...as I cried, I asked if we could just celebrate Mother's Day another time because "I'm just feeling like motherhood just isn't all it's cracked up to be."  Yes, I said that.  Yes, I feel that way sometimes.  There's never a day that goes by that I don't think about how much I love my children.  There's never a day that goes by that I'm not grateful God, in His grace, allowed me to be a mother.

But this morning, I wonder where is the outcry for sensitivity for those mothers whose dream of motherhood was lost in a diagnosis?  Or for the mom who's strapped to the home caring for a child who can't care for themselves, yet is old enough to do so?  Or the mom whose day is filled with tantrums, screaming, sensory overload, and erratic behavior?  Or the mom who is having to feed her child trough a GI tube each day?  Or the mom who has to fight tooth and nail for every little right that typical children don't have to fight for? Or the mom who's struggling with how to explain her child to the little league coach?  Or the mom who attends more IEP meetings than nights out with her husband?

 Or the mom who is just straight up is suffering in motherhood?  Sound awful?  I don't mean for it to, but, it's true.  There are moms who woke up yesterday in love with her children, but, thought, man, this is not what I signed up for.  There are moms who woke up yesterday, dragging because the weight of the responsibility is heavy.

The mom of a special needs child, that thinks her kid is crazy amazing with so much to offer a lost world, yet from time to time would love just a smidge of empathy.  Not sympathy.  We don't want you to feel sorry for us.  Or wonder how you can avoid being us.  This isn't our worst nightmare.  We just want you to recognize it's hard.    Raising special needs children IS harder than raising typical children.  I can say this because I'm doing both.

I write this for them.  Hoping maybe it shines a light, gives voice to, I don't know, maybe just lessens slightly the blow, knowing someone gets it.

The other night, that Brandon of mine whispered, "We're celebrating Mother's Day, not because of the way you feel about motherhood in this moment but, because we're honoring you, as a mother...and you're a great one."

Weary momma that suffered a great loss, the loss of expectation, I get you.



Head over and see what Steph's saying about Mother's Day...http://solidjoysandlastingtreasures.com/2014/05/11/from-where-i-stand-motherhood/

Wednesday, May 7, 2014

A Father's Perspective #williamssyndromeawareness

As this is Williams Syndrome Awareness month, it is my pleasure to get to contribute to Megan’s blog. 

She asked me if I would give a dad’s perspective on raising a child with WS. So here it is.


Shortly after we learned of Nolan’s Williams Syndrome diagnosis, I started focusing on the positive,

or tried to anyway. There were definitely some fears present. How would he interact with others, 

what would a school day look like, to what degree will he be able to function as an individual, etc? All

these questions would come up, but we just tried to take it a day at a time and focus on progress. My

rallying cry was that we would highlight his strengths and just work on and plug away at his weaknesses, 

developmentally speaking. Nolan has a laundry list of positive attributes and character traits that many

people, including myself, could stand to better possess: complete lack of prejudice, contagious joy,

empathy, etc. His weaknesses such as gross motor and fine motor skills and speech were challenges, 

but we were proactive in helping him catch up and we had/have great therapists so we reached a point 

where we were feeling pretty optimistic. Fast forward to today. He still has those great positives and 

more, his gross motor skills are more or less at an age appropriate level, and his speech is light years 

better. BUT, unforeseen challenges have emerged. This was one of our greatest fears when we 

received his diagnosis: the unknown. We are learning what a school day looks like, and it is extremely 

overwhelming. Throughout the day, there is Nolan Jeckyll and Nolan Hyde, and either persona can

appear within seconds of one another. We know there are various contributing factors to his behavior, 

including maturity, being a boy, anxiety that is associated with WS, and distractibility, but we cannot 

figure out what all of his triggers are or how to consistently get Hyde back in the box. It has become 

consuming and draining.


So what’s it like being the father of three awesome kids, one of which happens to have William’s

Syndrome? It is really hard. It is mentally, emotionally, and even physically taxing. I love my children 

so much it hurts. The girls present what I would consider to be typical parenting challenges which can 

be very trying to be sure, but they are really fantastic girls. They easily adapt and adjust. They are great 

kids. I thank God for them. I want Nolan to grow and mature and sometimes just be able blend in. I 

want to protect Nolan from the frustration and odd looks and mistreatment that will inevitably occur in 

a society that largely does not know how to interact with someone that does not fit their expectations. I 

do not want to mask him at all. His persona is part of what makes him so special and awesome, but I do 

want to help him to develop self-control and appropriate social skills.


All that said, other than on the weekends, I just make it home in time each day to sleep. So while I am

emotionally burdened by Nolan’s struggles, Megan is grinding through it daily. My father’s perspective

goes hand in hand with my husband’s perspective. I feel unequipped and helpless in getting Nolan 

through his struggles. At the same time, because of my provider responsibilities, I feel the same in 

my inability to help Megan. As a man, I want to fix things. I want to find the answer, implement the 

solution, and move on. Unfortunately, life, especially raising kids, does not work that way. There are 

too many variables and too many unknowns. Nolan just happens to have several extra of each.


Where am I today? Downtrodden, depressed, angry, worried? Maybe a little of each. Not so much 

depressed; I don’t think that’s really my nature, but I can’t be all positive all the time. Who can?

We’ve established that life is hard, but God has blessed me with a true optimism. I did not realize it

until Nolan’s developmental delays became evident as a baby, but I am truly hopeful and expectant

in all areas of life. God is in control, of that I have zero doubt. It sounds like a cliché, but it isn’t. It is 

a Biblical truth that my whole life rests upon. We don’t always want to hear that when we are going 

through a real trial, but it is important to remember and to grasp ahold of when you can.

I take encouragement from passages like these (my emphasis).

Romans 8:18-21, 18 "For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God.20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God."  "28 And we know that for those who love God all things work together for good,[a] for those who are called according to his purpose. 29 For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. 30 And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified."

The pain and struggle that is involved in raising Nolan is temporary. I am viewing it as an opportunity


to show the resilience of our family and the love of our God. It is so hard, but the rewards are great. 

Nolan blesses us each and every day. We hold fast to and cherish the joyful experiences, and believe me 

there are many.

1 Corinthians 15:57-58  "57 But thanks be to God, who gives us the victory through our Lord Jesus Christ.  58 Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain."

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Tuesday, May 6, 2014

#williamssyndromeawareness

Troubling behavior at school.

The tantrums and compulsive behavior and name calling.

The beautiful white iris pattern of his baby blues.

The way he stares off into space, the windows are open, and he's memorized by the sound of a commercial mower.

The mower turns off and a weed eater begins.  He looks at me with a satisfied smile and says, "That's a different sound."

The way his mouth is always gaping open...revealing his wide spaced teeth.

The way he looks at me, tears running down my cheeks, and says, "Why are you crying again? Be happy!"  He smiles, and I can't help but smile also.

And, as all those things come together and hit my consciousness in one quick moment, I grieve the loss again.  The hurt is deep.  The fear is crippling as I think about "what's best."  As the whole world is moving on with life, and us, well, we're stuck.  I'm stuck.  Never moving forward.  Trapped in the day to day, not knowing what may happen tomorrow, because what was best today may not be for tomorrow.  Never able to have a plan because each day brings another challenge...one that could be permanent, or not.  I'm taken back to delivery day, when they handed him to me and I could't hold him, even though I didn't know what was wrong, I knew something was wrong, and it pained me to hold him.  I'm taken back to the day the doctor called and confirmed at 11 months of age, our son has Williams syndrome. The hurt was deep then too.  I never knew one could hurt over a loss that was still present, so profoundly.  I know now.


Yet, all of this hits like a storm cloud with no warning...quick, overwhelming, and all consuming...and all I know to do is hold him tight, tell him that I love him, but that Jesus loves him more.

#williamssyndromeawareness


Thursday, April 3, 2014

From Where I Stand: Spring

If I had to choose my favorite season, I would likely choose fall.  I love the milder temps, changing colors, and cool evenings by a fire with my family.  But, there is undoubtedly something very refreshing about spring that I love as well.  You experience winter (ugh):   being trapped inside, with gloomy skies for months looking at dead bare trees...and if it was a winter anything like what we experienced here in Indiana this year, you begin to wonder if it will ever end.  And then one day you wake to birds chirping outside your bedroom window.  On your way out the door one morning, you see daffodils sprouting, and then you notice that the trees are full of buds about to burst. Suddenly it hits me.

Right...spring is coming.

Hope.

In the spring, I love no more bulky winter coats for 3 kids that makes going anywhere a chore.  I love bare toes in flip flops.  I love being unable to decide what to do for the day because it's so beautiful and the outdoor options are limitless.  I love, after dinner, sitting outside with Brandon watching the 3 babes running in the yard, swinging, and playing in the sandbox.  I love the smell of the lilac tree outside our living room window.


Spring brings about drinking from the water hose outside....


and raspberry picking...



 and shirtless barefoot little boys...


 and butterfly hunting...


and outdoor meals.


A breath of fresh air...

New life to the soul...

Hope...

Spring.

Song of Solomon 2:11-12  
"For behold, the winter is past; the rain is over and gone. The flowers appear on the earth, the time of singing has come, and the voice of the turtledove is heard in our land."

Check out Steph's thought about spring:
http://solidjoysandlastingtreasures.com/2014/04/01/from-where-i-stand-spring/

Tuesday, February 4, 2014

Dear Future Husband

Dear future husband to Adelynne & future husband to Aubrey,

Today, as I picked up Nolan from school...his half day, while Aubrey and Adelynne attend full-day, he said  to me, "Where's my girls?  They comin' home too?"  When I told him we'd get them later today, he dropped his shoulders, puckered his lips, and sadly said, "aawww."

This is just one of the many visuals I get when I think about the relationship between Nolan and Adelynne & Nolan and Aubrey. I also see them each stop in the school doorway to hug and kiss him goodbye each morning.  I see it when they walk into the door each afternoon and ask him first how his day was, the way they praise him when he had a good day, and the way they encourage him to do better when it was a not so pretty day.  I see it in the way they divvy up homework and play time with Nolan.  "How about I'll do my homework first while you play with Nolan and then when I'm done, we'll switch," Adelynne will say.  I see it in the way they battle over who gets to sit with him at dinner.  I see it in the way he prays on the way to school in the morning, "Fank you God for my Adie, my Aubrey...and...and...trucks."  I see it in the way Aubrey boldly talks to her class about Wiliams syndrome, proud of her brother.  I see it in the way they both, separately, on the same Sunday, grabbed a prayer request card from the pew and wrote, "Please pray my brother will accept Jesus."  I'm not even kidding...I was sitting between them, trying to hold in the emotion from realizing their deep, passionate, enduring commitment to loving this boy.

I tell you all this only to let you know, that marrying into any family is never easy. There are family dynamics that are uncertain at times and uncomfortable.  There may even be people you inherit that quite frankly you don't care for.  There are illnesses, there are additions, there are life changes and hard times.  But, in our case, each of these girls come as a package deal.  I've prayed for you for a very long time, and before Nolan was part of our family, I prayed that you would love Jesus first, them second, and that you would have many of the same qualities as their daddy. They know this as the "3 criteria for a husband."  :)  I'm serious, ask them. But, I'd now like to add a fourth...you must love their brother.  By that I don't mean...

Oh sure I love your brother.  He cute, he's funny, I love him because you love him honey...

I mean LOVE him.  I mean love him so much you'd reconsider taking Aubrey or Adelynne far away from him to live because that would devastate him so.  I mean love him enough you overlook the nuisances of an adult with special needs.  I mean love him to where he's with you two often, at your house often, and goes places with you.  I mean love him so much that no one can tell whether or not you're his brother or brother-in-law.

This is no easy task, just as it was never easy for them, growing up...worrying over surgeries, worrying over whether or not someone's making fun of him, worrying over what will happen to him if he dies, being asked to deal somewhat with adult concerns at a much younger age than should be asked of them.  I ask that if you can't sign up for the package deal, that you love her enough to let her go.  But, if you are willing to sign up for the package deal, we welcome you into our family with open arms.  I promise you, either of these girls is a catch, and having the privilege of being loved by Nolan is one of life's greatest treasures here on earth.

I pray for you almost each day, that God's working in your life somehow.  I pray for His hand of protection over you as you grow in your relationship with Him, even as a child.  I pray he's creating in you a loving, compassionate heart, as each Aubrey and Adelynne have sensitive hearts that will need such qualities.  I pray you're learning to love Jesus first and foremost, as He loves you, and that you love people second because ultimately that's what life is for...to love Jesus, and love others.


I pray for you because I love Aubrey, Adelynne & Nolan more than all the fishies in the sea.

Fondly,
Megan

Monday, February 3, 2014

Wuv, true wuv

From the moment I could remember, my grandparents never slept in the same room.  The old beloved farm house in Clinton County, at the end of the upstairs hall, to the left my granddad slept, and to the right, my grandmother.  I remember wondering about this fact, but....as I grew up, I noticed other things, like the way they did their own activities separately, banter some with each other, and quite frankly, John annoyed Betty.  I'm smiling now as I type this because of the memories...these two stubborn, rascally, strong-willed, yet warm people, had a history, a past, I knew nothing about, but, could see slightly, as a child, yet knowing this, also knew, they loved each other.  They loved each other enough to remain committed to their commitment, that I knew. Regardless of mistakes long before I was around, they loved each other enough to remain committed.  Their marriage wasn't a picture of perfection, rather a picture of steadfast commitment.

In 2000, she was diagnosed with cancer.  While in the hospital, grandpa came to visit one day and literally dropped dead outside her room...cardiac arrest, heart stopped, dead.  They were able to perform CPR and bring him back.  I remember wheeling grandma into the ICU to see him, face covered with a mask as to not come in contact with any unwanted germs, her eyes spoke volumes.  She loved him.  It wouldn't be too much longer after this, that we all knew she was near meeting Jesus. I watched grandpa shake his head and weep in the waiting room, sad, regretful it was her and not him, sad she suffered, sad to lose the woman he loved, a lifetime of memories.

These images forever etched in my brain, and two amazing people who weren't saved until after they were married, imperfect with a long life together of good times and also bad, who remained committed until death. And through all that, love was what held them together.  A love for each other, but, ultimately, their individual loves for Christ.

Often times we don't know how events in our lives affect us until after...memories remain, reflection occurs, and we're able to see.  It's almost like washing a window in the spring after a dirty winter...the glass becomes clear and we're able to see so much more, so much brighter, so much clearer.

It wasn't until after these events with my grandparents that I truly understood the deep love of my Savior...the Savior I'd run from for years, unable to accept His true and pure, perfect love. How on earth could he possibly love me?  Mistakes, oh the mistakes...the dirty feeling, the inability to forgive and love myself...

"Jesus paid it all, all to Him I owe, sin had left a crimson stain, He washed it white as snow..."

Every so often, I have to wash the windows to more clearly see His perfect love for me.  Satan loves to dirty up my windows and cause me to questions Christ's love for me.  I wipe away the dirt and see I'm white as snow before Christ because He.literally.washed.me.clean.with.the.cross.

Matthew 7:44-48
"Do you see this woman ("a Sinful Woman")?  I (Jesus) came into your (Peter) house.  You did not give me any water for my feet, but she wiped them with her hair.  You did not give me a kiss, but this woman, from the time I entered, has not stopped kissing my feet.  You did not put oil on my head, but she has poured perfume on my feet.  Therefore, I tell you, her many sins have been forgiven--for she loved much. But he who has been forgiven little loves little.  The He said to her, 'Your sins are forgiven.'"

His blood cleaned me...no sin uncleanable.  There is no greater act of perfect love.  John and Betty knew this.  Their love for Christ who forgave them, visible in their commitment to each other.  Now in heaven these two, experiencing the love that never ends at the feet of the One who perfectly loved them first.



Go see what my sweet friend Steph is writing about at: www.solidjoysandlastingtreasures.com 

Wednesday, January 1, 2014

I freaking hate change...

No seriously, I really do...freaking hate change that is...

Wait, did I just say "freaking" out loud...uh..yep, sure did. 

Funny thing, my 9 year old refers to that as the "f" word.  She'll gasp, put her hand over her mouth and whisper, "mom just said the f word."

One day I finally had to admit that saying "freaking" isn't something mommy should do, but, that there is an actual "f word," and "freaking" ain't it.

Ha! (sigh), wait, where was I? Oh, right, change...

Brandon and I spent a lot of time last winter and spring deciding where Nolan should go to school this current school year. He's a June birthday and before we knew Nolan would be, well, Nolan, we'd decided to hold him back one year and begin kindergarten when he was 6.  No big deal, right?  Tons of people do this.  Not so easy with a child who has an IEP and is deemed "special needs." We have to have a meeting to write up an IEP that won't be used, deny that, then have another meeting to officially deny it and come up with a service plan, blah, blah, wah, wah...it's just the way it is...I've come to terms with it.  So, with advice from his speech therapist and preschool teacher, we decided to send him to a mainstream preK program here in Plainfield. 

Everyone (teacher, director, etc) is aware of Nolan's "disability," we now are just waiting for school to start. I'm back homeschooling both girls and I've got my plan.  8 days into preK, Nolan was asked not to come back.  His distractibility and high energy didn't fit the mold of this preschool, and we were encouraged to look into sending him on to kindergarten where they have to resources to help him.  All this happened in a meeting that was for us to discuss "baseline testing" scores.  Feel like I went from 100 to 0?

Now wait, I just wanted to set the scene for the blog title, "I freaking hate change."

My plans have now been changed.  Plans are good, the are helpful, they are a responsible thing to have, yet, many times our plans are not God's plan.  Cliché?  Maybe? 

On a Friday in September, well into the school year, Nolan doesn't have a school to attend.  From the time he was 4 months old, this was one of those times I feared.  Literally feared...wake me up in the middle of the night in an anxiety attack feared.  What will school look like?  Will people want to help him? Help us?  Will anyone fight for him?  Give him a chance? 

Please, just give him a chance.

I laid in bed, the rest of that day sobbing...smeared mascara and snot, held by Brandon from time to time...both of us just so mentally exhausted of being blind sided by this, feeling helpless, betrayed, desperate for this boy, oh this precious gift from heaven to fit somewhere, to be accepted...where someone wants to help him.

Lots of details omitted, fast forward 9 days, and Nolan began kindergarten.  Not my plan, at this point I'm still angry we're being pushed into a decision I still don't want...He's not ready for kindergarten.

Nolan doesn't like change either...

He begins tantrums like you've never seen, at home, and at school...he's becoming very defiant, aggressive, combative, not sleeping, pooping his pants...sound fun?  It wasn't.  Everyday I went to pick him up (he's the only child in the school system doing 1/2 day kindergarten), it's a bad report, I mean, bad.  I've left school carrying him while he screams and kicks, and sometimes hitting me.  I bring him home, same type of behavior...he's trapped in this anxious, I don't like change whirlwind unable to adequately express,

"Mom, I freaking hate change,"

and doing just so the only way he knows how...by acting out.  Tired yet?  I was. On top of all that, I'm supposed to be teaching the girls. 

One of the most enjoyable things about homeschooling is how stress free it really can be!  Learning on the couch, at the table, adjusting things to the learner, making things fun, taking a day off because you're ahead of schedule...etc...but I can't do anything but deal with Nolan.  It's physical, emotional, and mental stress.

I love homeschooling the girls, I love having them home, I love being with them...this is where satan works on me because I drift into thinking, "if Nolan weren't in the equation, homeschooling would be working wonderfully."

Shame on me.

God led me to do some real soul searching, and I began to see that I had the view that God could only protect my children if they are homeschooled.  In this day and age, there are so many things that happen and can be heard in schools that we just wanted to protect these kids a few more years.  I still do.  My prayer each morning is that God would protect their bodies, hearts and minds. I pray that God will not allow them to hear anything contrary to what his Word says. 

At the same time, I clearly saw God leading us to school. My plan was Pre-k and homeschool.  But, the Lord yanked that rug right out from underneath us and so clearly led us away from my plan and toward His.

I woke up one cool day in October, and all 3 of my kids went to school that day.  Holy Sh&# balls!  Most moms lose their kids one by one, and I lost all 3 in a matter of moments.  I won't lie, that was a hard day.  Satan causes me to question our decision all the time.  Yet, with each question, God gives an instance or situation to prove He is right, He is in control, and He orchestrated all of this. 

Homeschooling was an idol for me.  I didn't want to feel like I was giving up, quitting, I didn't want to admit that the stress of Nolan's needs and schedule added on top of a homeschool schedule were too much for me. 

But, "I can do all things through Christ..." but, "He gives grace."  Just "give it to God."  Right?  You can insert any Bible verse or any inspirational quote here, but, there are times in life when God's trying to shut a door and we're defiantly standing in the way...arms crossed, eyes averted, stiff armed...that was me.

Megan, let me show you my grace, my comfort, my peace, my rest, come to me, let me carry this burden.
 
He whispered this for a while until he said it quite loudly through Brandon as he lovingly said, "We said we'd homeschool while it worked, and this year it's not working, and that's ok."
 
 
I am not a failure.  I'm a flawed human being, by the grace of Jesus trying to love my husband and children, but, I have limitations.  I'm not supposed to do it all on my own, and it's ok if our way is different than yours because God's given us different circumstances and trials to bear.  Yours aren't harder than mine, and vice versa, but, so long as we're loving God and loving others, I truly believe God knows the desires of my heart and will bless them no matter where my kids are.
 
Psalm 37:4 "Take delight in the LORD, and he will give you your heart's desires."
 
Matthew 6:21 "For where your treasure is, there your heart will be also."
 
Proverbs 16:9 "The heart of man plans his way, but the Lord establishes his steps. "
 
I woke up on a Friday morning not too long ago, in the middle of all these behavior issues, and it hit me like a ton of bricks...
 
I can't control these kids any more than I can control the weather. 
Typical children make us think we can, at least mine do. We can get a desired response or behavior out of these kids with fear of consequence, but, really, that's not always an accurate reflection of the heart. Nolan is the very same...just like my typical kids, Nolan's changes will come as the Lord does a work in his heart.
 
He's your boy Lord, you do the changin', I'll sit back and watch.