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
Tuesday, June 21, 2011
Sunday, June 19, 2011
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.
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.
Monday, June 6, 2011
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!
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!
Tuesday, May 31, 2011
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
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
Thursday, May 26, 2011
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.
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.
Wednesday, May 18, 2011
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.
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.
Friday, May 13, 2011
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.
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."
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
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
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