Enjoy the Music

Her surgery went very well this week.  She is up and walking - recently going on a scavanger hunt since her brother hid her crutches!

Our friend Marilyn had flown in from Big Spring, TX and driven to surgery with us.  We walked Ashley into the operating room, getting dressed in our Blue Evening Gowns.

As they began giving her oxygen,   I sang her the same hymn I sang to her each night as a baby. And each time she goes under anesthesia or has a procedure. 

Onlyy hhis time the whole operating room was quiet as they listened to her testimony in song - 

This is my Father's world

And to my listening ear

All nature sings and 'round me rings

The beauty of the sphere.

This is my Fathers world.

I rest me in the thought

Of rocks and trees and skies and seas.

His hand the wonders wrought.  

He is our Father. In His hand we dwell.

In His hand he holds each wonder, each miracle,

each breath we breathe.

All Creation Sings His Majesty!

We must rest in His peace and enjoy the Music!

# 7

This is prep week.

Housecleaning.  Cooking.  Packing.  Finding insurance forms.  Flu shots.  Arguing with wheelchair companies.  Scheduling follow-ups.  Soccer Game.  Dance class.

We leave for Denver on Thursday AM.  Surgery is Friday at 2:45.

Her best li'l Buddy Katrina is having the same surgery on Wednesday in Salt Lake City, Utah.

I know two girls and two families who'd love your prayers!

Plan, Occupy and Go Where He Leads

The best laid plans are just jokes to God!

This week did not go as I had planned.

Proverbs 16:9 tells us, "In his heart a man plans his course, but the Lord determines his steps."

Lately, there have been many posts on FB about the imminent return of Christ.  And I believe it's closer than we can imagine while further away than we would want.  We keep planning our course in this life and God will keep directing our steps towards Him.  Towards the day he returns.

But now it's Thursday, so I can breathe a bit.  I'm just plannin', God's directing.

Luke 19:13 reminds us to stay busy at the Lord's work.  "Engage in business until I come."  One version says "occupy."  That means be about the business the Lord has laid for you.  Marry.  Raise children.  Love one another.  Make disciples.  Train for the future.  Prepare your hearts for today.  Plan your way!

God showed another miracle of his today - it snowed!   I love that!  The earth becomes covered in a warm blanket of grace that hides our confusion and covers us with peace.  Peace - he's got it all under control.

We were all tucked in together.  Watched a movie and did school later in the day.  Chris is getting ready for soccer and we're getting the house ready for my Dad and Mama Mike to visit for the weekend.  And it's peaceful in our house.

Love it.

No.

The hardest word for us to hear.

The words of diagnosis may not be understandable.  The words of a prognosis fall on deaf ears.

But when we ask a question, with a heart full of hope and expectation and the answer comes back in the form of two little letters, we are overwhelmed.

God sometimes says No.

That's the truth of it.

This side of Heaven, we may never know why.

And that's the hard part.

That's where our Faith meets the road.

No.

Yes, He Hears - And Answers!

Ever doubt God hears our prayers?

That he answers?

Our little friend went to San Fran for surgery this week.  Two tumors - one behind each year.

Quite a serious situation.  The CT showed tumors that needed to come out, like, yesterday.

Folks all over the world have been praying - the right doctors, the right hospital, divine healing.

Operated today - NO TUMORS!

Only God.

Read more -

http://aplacecalledsimplicity.blogspot.com/

Survivor

Have you ever looked into the eyes of Hero?

Have you ever shared the smile of a Survivor?

Now you have.

July 24, 2011

13 years old

Stroke Survivor - 12 1/2 years

Great is thy Faithfulness

Yesterday was Ashley's 13th Birthday!  (pictures to come)

We celebrated by attending church together and then dinner with friends last night.

Our friend is the worship Pastor.  Great voice, great talent but most importantly, a Great Heart for God.   During worship, the band sang Great is thy Faithfulness.  I told him at dinner, that song was for me.  I love the hymns - their testimony.  And on her birthday, I needed to remember once again, how faithful my God is to me.

Great is thy faithfulness, O God my Father
There is no shadow of turning in thee
Thou changest not, thy compassions they fail not
As thou hast been, thy forever will be


Great is thy Faithfulness
Great is thy Faithfulness
Great is thy Faithfulness, Lord unto me!

Hope for Today

The blessings of having a child with disability is the variety your day holds.  You never know if that morning will bring an illness;  an allergic reaction;  a new symptom;  another doctor's visit;  another hour on hold with the doctor's office, or maybe even a new doctor!  


Yes, that is sarcasm.


The true blessing in this chaos is learning to trust each day to God's hand.


Recently I became quite agitated - okay, mad - when my well thought-out plans were not going to materialize.  I just wanted to have some say over my day, my week, my month.


It was not to be.


God says in James 14:13-15


  "Now listen, you who say, "Today or tomorrow we will go to this or that city. We will spend a year there. We will buy and sell and make money."  You don't even know what will happen tomorrow. What is your life? It is a mist that appears for a little while. Then it disappears.  Instead, you should say, "If it pleases the Lord, we will live and do this or that."


Lord, I'm trying!  I really am.  To leave each day to your will.  


How beautiful to know He does not give up on us!  Ever!


That is my Hope today.  And we all need a little Hope!

An Open Letter of Grief

Dear Culver Family:

I cannot imagine your loss. Your reality is our fear.   It's a fear all parents of a child with an illness or disability harbor deep down.  We rarely give it voice but it lurks in our mind - how can we bury our child?

I do not know you.  I did not know your son personally.  But our paths have crossed.  We lived not far apart in Oklahoma for several years.  Maybe shared the same doctors and been in the same hospitals.   I've seen his name on the Board at Adaptive in Durango.  He was on the mountain at the same time as our daughter.  Enjoying the Mountain.

Ashley and two of her ski buddies.

Any psychologist would say I'm projecting my own grief.  I know that.  This past month, my daughter Ashley had her 6th surgery.  Yesterday, I scheduled her 7th.  The day before I scheduled her umpteenth botox injection.  And I have to schedule allergy testing.  And her arm is bothering her in the cast.  And there is no end.

Ashley and Me before Surgery #5

Children's Hospital of Colorado, Denver

As my dad read your son's obituary to me I was bewildered.  Why?  It was sad but I didn't know you.  Then he read where all gifts were requested to be donated to the Adaptive Sports Association of Durango, CO.  Suddenly the world grew small.  This Association, so near to your son's heart, has meant the world to our family.  They gave our daughter speed!  After always being last - last in line, last down the hall, last in a foot race -  she declared, "I am first!  I can go fast!"

In your grief, you thought of how you could help others.  And the tears began to flow.  I held them back while I called Ann Marie at ASA to make sure she knew of your son's passing.  Then we cried on the phone together.  One of our own had found freedom from his broken body -he's running in Heaven now!  Then I stuffed the tears again.  Later, I sat in the shower and cried.  I cried for your family.  For your grief.  I cried for my daughter and mostly I cried in fear.  The fear of laying my own child to rest.  I think the tears ran out.


So today I pray for you.  As your family members go home and the silence becomes deafening may the peace of God wrap around you.  May the God of creation remind you of the wonderful gift your son was to you and to so many others who knew him.  May the Spirit of the Living God be so real to you that you feel his presence against your cheek.

And I also thank you.  Your kindness will introduce the mountain to so many others.  When you are back in Durango, I hope to meet you.  And if not Durango, let's meet in Heaven.  Our kids can run together and join Jesus in a foot race!  I bet He lets them win.

Pre-Surgery Parents

Ashley took this photo before her wrist arthrodesis in May at The Children's Hospital in Denver, Colorado.

We're sporting the latest styles in nervous, tired, praying without ceasing Mom and Dad Daily Wear

Trusting

It seems that each week presents a new challenge.  Legs, arms, muscles, teeth, toes, even hair - they all seem to be connected to Cerebral Palsy.

We learned early in our marriage to never ask, "What else can happen?"  That question is usually followed with an answer that leaves you gasping for breath!

We take each day as it comes.  But some days, I dream of waking up and everyone is healthy;  no one hurts;  everyone's bodies function well;  no tummy aches, medication reactions, sports over-use pain;  no joint swelling or wheezing.

Dream on!

Grace of each moment.

That's a dream that's a reality!

God's grace.

Project Loving Arms

Wanted: volunteers to go to Children's Hospital willing to assist families by sitting with their children so they can rest. I will be talking with Vhikdrens in the next few weeks and want to give a head count of how many we may bring.

Playing with ideas but looking to be in Denver for 48 hours with the ability to take sleep breaks on a rotating basis. Very much a blitz. Then come home and plan another trip!

Also looking at Project Loving Arms service in Durango.

Let me know!

Call To Volunteers

It doesn't take much to be a great volunteer. 

A little time.  A little effort.

And the rewards are amazing!

This past week, Ashley was admitted to the 9th floor of The Children's Hospital in Denver, Colorado.  Amazing people!  Amazing Pain Team!  Amazing Anesthesiologist!

As we walked to Ashley's room each time, I was so taken by the amount of children - infants! - laying in big metal cribs all alone. 

Do not think iill of their parents!  Until you have had a a child in long-term care, you may not pass judgement.  And besides, your judgement does not help these children one bit.

What would help them?  Volunteers.

Volunteers who will sit and rock little babies while their moms and dads work to pay for their medical care. 
Volunteers who will spend the night with these babies so mom and dad can get a little rest.  Volunteers that let these families work, rest, visit with doctors, do laundry and know that their child is being loved.

Loved on.

Prayed over.

Sang to.

So no excuses!  If you life within 30 minutes of hospital - get out there!  Is 4 hours a week;  one night a month too much to give for the life of a child?  I've even found the links for you to get started!

Are you near Denver?
    http://www.thechildrenshospital.org/give/volunteer/index.aspx

How about Oklahoma City?
     http://www.oumedicine.com/body.cfm?id=604

Utah -
     http://www.shrinershospitalsforchildren.org/en/Hospitals/Locations/SaltLakeCity/Volunteer.aspx

For those in New Mexicoo -
    http://www.carrietingleyhospitalfoundation.org/volunteer.htm

Getting Ready

I am always amazed at the peace God gives.

And I am equally thankful for that peace.

One of the hardest things to do is help your child on an operating table and after they fall asleep, leave the room.  The walk down that hallway is long and cold.  You feel like a horrible parent - abandoning your child.

How wonderful to know that God has not left them!  He has never walked away from them - nor from you.

Tomorrow morning I will make that walk again.  But not alone.

Never alone.

Surgery

6 months old - Mid-Cerebral Arterial Stroke

18 months - heel cord lengthening

4 years - heal cord lengthening, tendon transfer

10 years - tendon transfer;  screws inplanted to inhibit growth of right leg

11 years - screws removed

12 years 10 months - removal of bones in left wrist to shorten;  fusing wrist

You might say we are old hat at surgeries.

But the butterflies are still there.  The nerves are still raw. 

This time, so are hers.  This is the first time she has worried about surgeries.  This time she knows what to expect..  This time she understands the pain.  This time she knows the risks.

So together we have decided to fast as a sign of our trusting in God. 

And He will be faithful.  He has always been so.  He will be again.

Cry

Go ahead.

It won't change the circumstances.

It won't make cerebral palsy go away or cure cancer.  It won't grow back limbs or remove fluid from a tiny brain.

It won't eraser the words of a doctor or a careless friend or familly member.

It won't mend a stressed marriage or pay those mounting bills.

But it does release the tension.  It cleanses.  It refreshes.

"Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know."

         ~  Bryan Duncan

 

Give yourself permission.  To grieve.  To be human. 

To cry.

The fulll song:

Blessed Are the Tears

         Bryan Duncan

Think of all the times you've fallen victim
All the restless nights you've wrestled through
The closest of your friends abandoned, helpless
They're reaching but they're just not reaching you
You hold no valid thoughts of consolation
The future holds no interest, no concern
The world you love is closing in around you
Clearly now there's nowhere left to turn

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know

The time has come to share your well-kept secrets
The hatred and guilt degrading you
I'm sure you blame yourself for all that's happened
This time there's just no way that it's true
You need to know you've got a friend in Jesus
You need to know he felt rejected too
Humiliating pain and unjust treatment
He's been there so he knows what you've been through

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know

Blessed are the tears that fall
Wash the stains of life away
Forgiven and forgotten now
A new creation's here to stay

And God will send a merciful Peacemaker
Comforter of all of those who mourn
We'll become the pure in heart, the earthly meek
Enduring misdirected scorn

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know

Taking Care of Yourself

The past 6 weeks have been a lesson learned - again. 

Take care of yourself!

Through no fault of my own, I contracted a wicked little respiratory bug.  It settled into my lungs just as the tree pollen season in the Four Corners was kicking into full gear.  Needless to say, it's not been pretty.

Two emergency room trips, two specialists, 4 doctors, three inhalers, one antibiotic, two anithistamines, one anti-something, and huge quantities of prednisone...and the cure?  Hmmm, benadryl seems to help the most.

It's not been fun.  I've slept alot.  Prayed alot.  Quoted scriptured.  Lifted myself by sheer will to drive the kids around.  I've slept many nights on the couch so I could breathe.

We all get run-down.  We forget to take care of ourselves.  Sometimes, like this time, things just happen.  A person rambles into our life carrying an unexpected and unwanted gift.  Other times, we get so caught up in what must be done, needs to be done, should be done that we let ourself get over-tired. 

When we are tired, our life gets out of balance.  Out of perspective.  We can't think as clearly.  We can't cope.  And our body can't fight off disease.

"There is a time for everything, and a season for every activity under heaven." Ecclesiastes 3:1

That includes rest! 

Schedule it into your day if you must.  But take care of yourself!

Some Days. . .

"Momma said there'd be days like this..."

Days that are just a waste of make-up.

Days that are meant to for pajamas.

Days that you need to take the phone off the hook.

... to be mad.
... to be sad.
... to be frustrated.
... to be disappointed.
... to grieve.
... to give in to self-pity.

It's okay. 

Give Yourself some Grace!

Go there.

Just don't stay there.

Unplug the phone.  Turn off the computer.  Grab your kid and place them in front of the tv - it won't kill them.  Grab a book and head to a bubble bath or just lock yourself in the bathroom with a box of kleenex and cry.

It's okay.

Then wash your face.  Put on your favorite lipstick.

And breathe.

And know, there are just some days. . .

Meet Jaden

http://jadensstory.blogspot.com/

Grace for Today

We want it all!  Just like little children at Christmas!  We want every shiny bauble, whirling gadget and spinning top.  And we want it wrapped in pretty bows that we can rip off and discard in the rubble pile.

Only, we want answers.

What will the future hold?  When will this end?  Will there always be a new problem just around the bend?

But God gives us only the answer we need for today.  Wrapped in how we can handle the information.  Sometimes it's a bitter pill.  Sometimes it's a sweet and refreshing elixir.

Yet, the packaging is where God outdoes himself!  It's glorious!   It's made through hard work and born through great trial.  It's never discarded but cherished by the creator.

The gift may not be what we wanted or planned but the package is incredible!

Trust that God is giving you today just what you need.  No more.  No less.

He will give you the Grace for today.  Tomorrow will take care of itself. 

More Information and Less Knowledge

I just returned from taking Ashley and another baby to Denver for appointments at the Children's Hospitals there.  Two little girls, precious and precocious.

Loved by God.

Cherished.

And facing problems.

We received lots of information and few answers.  In fact, I feel overwhelmed.

I didn't hear what I wanted.

But I trust.

God is not overwhelmed.

Trust in Him.

Today

Joni Erickson Tada writes in her book, "A Lifetime of Wisdom" - "If our enemy can keep us occupied with our past or with our future, we lose the grace, blessings and opportunities in the Now."

NOW - so important to be present now.  Even if it's painful.  Even if it's uncomfortable.

The way to live through the storm is knowing that it will past but enjoying the light show of the heavens and the music of the thunder while the rain pours down.

Bright Hope for Tomorrow

After Ashley's stroke, I lived to hear of children who had suffered similiar problems yet they were doing "normal" things.  It gave me hope.  Sometimes it let me ignore what lay ahead of us.   It let me dream!

Today, Ashley competed in Special Olympics, downhill ski.

She won 3rd Place!

Her dad and His gorgeous girl!

Her biggest cheerleader and ally - Big Brother Chris

Our Champion!

Introduction: How did we get here?

The following is a post from my blog www.beachfamily4.blogspot.com.  It gives background to where our family has come from.

Another Anniversary

January 27, 1999. Before 3:00 am. Horrible screams as our 6 month old daughter's right mid-cerebral artery ruptured in a massive ischemic stroke. Her tiny brain began to swell, her skull expanding - ultimately saving her life.

It was fifteen hours later when the grand mal seizures began and we were sent to the emergency room. Fifteen hours filled with doctor's visits and medications for vomiting. And nearly midnight before we are put into a dark, cold pediatric intensive care unit room surrounded by beeping machines, creeking rocking chairs of tired moms and the muted bustling of nurses.

I will never forget the loneliness as I watched from the PICU room window as David walked across the street from the emergency room to our car and left for home - wanting to be there with Chris when he awoke and assure him things were going to be okay.

Ten years. Three surgeries. Countless seizures and numerous medications. Bad diagnosis after mis-diagnosis. Tears, celebrations. Fears. Pain. More medications. Blood work. Therapies - physical, occupational, speech.

And many smiles. Little girl laughs. Giggles as her brother helped her walk. Laughing when we realized she was caring her walker instead of pushing it. Rejoicing as she skiied for the first time. Cautious fear as she climbed her first moutain with her quad.

Garth Brooks sings a song that so wraps up the life of having a child with a disability: "I could have missed the pain, but I would have had to miss the dance."

Father - I hate the pain. I hate feeling responsible. I hate the tears in the middle of the night. Watching her struggle to crawl and walk and run. The sense of loss of what could have been - should have been. What was stolen from her.

But Father God, I have loved this dance! If you took her home tonight, I would celebrate the beautiful dance of her life - the smiles, her love of children and music and camping and people and her family.

Lord, help me celebrate the dance above mourning the loss.

We Are Here!

Please visit soon for stories of hope as well as scriptures from God's word.

I look forward to meeting each of you soon and reading your stories!