Some dear friends have just heard words put in a diagnosis to their child that no parent should hear: Cerebral Palsy.
But what did God hear?
Nothing that suprised Him. Nothing that alarmed Him. He was not scared or shaken.
I've grown to hate those two words for many reasons - it's an umbrella diagnosis where doctors dump what they can't explain; it sounds like a death sentence; it carries a huge stigma; they are not pretty words like Lilac or Persephone.
Lord, change my heart that when I hear "CP" I see angels rejoicing and butterflies flying and choirs singing. Let "CP" mean "God's Chosen" to me.
Showing posts with label cerebral palsy. Show all posts
Showing posts with label cerebral palsy. Show all posts
Saturday, January 8, 2011
Friday, December 3, 2010
Lemonade Gives Me Indigestion
When blogging, or sharing information in any form, it's always a delicate line to walk knowing how much information and detail to share. Especially when it concerns family - and even more so with your kids. It is important that they be able to trust you - a safe place to share their fears, to whisper their dreams, scream their pain and confide their hopes.
So know that when I share this blog, I have asked Ashley's permission first.
We are in a tough place. Tough as a mom and daughter. Me letting go some. Her finding independence while still needing mom and dad so much. Tough as a pre-teen who wants to look and act and walk and talk like her friends. Tough as a mom who sees her struggle. Tough as a student who hates to take the extra steps to learn. Tough as a teacher who requires those steps. Tough as a human being in pain. Tough as a mom who can't take the pain away.
Yeah, we have our "come to Jesus" moments.
Literally.
We have fought. We have "discussed." And then we have prayed. Prayed alot.
Sometimes there are tears. Sometimes just alot of sighs.
Basically we are left with this decision: Do we let what satan has meant for evil destroy us or do we allow God to turn it to good?
Destruction is easy. We can give up. Sit in our corners. Do nothing.
Good takes work. It's painful. It takes molding and finishing. Scrubbing, polishing, knocking off rough spots.
Recently, one of our little friends had to take a trip to Children's Hospital in Denver. She has suffered for a year with abdominal pain and it was time to seek a specialist. Her greatest fear was having cancer. To her little mind, a children's hospital meant cancer because of a little boy at school who was diagnosed with cancer last year. Ashley was able to sit with her, take her on-line to the hospital's web-site and talk to her about how great the hospital was at helping all sorts of children. Ashley told her how they helped her walk better. How nice the doctor's were. How great the gelato was at the coffee shop. By the end of the evening, our little friend was feeling comfortable, if not a little excited, to go to Denver!
Good from evil.
I guess you are wondering where the title for this post came from. Today while driving into town, Ashley and I discussed writing a book together. A book to guide parents and children through the difficulties of disabilities; through visiting hospitals; through "come to Jesus" meetings. I said we could name it, "Making Lemonade" from the saying, "if life gives you lemons, make lemonade."
But I don't like Lemonade, and I suggested that as a title: "I Don't Like Lemonade." It gives me indigestion.
Just the thought of making lemonade is bad. It means something is cut, squeezed; syrup is added to boiling water to create a syrup then the whole mess is poured over ice. A shock to anyone's system. Not a great perspective. The end product is nice, but getting there is tough!
"Lemonade Gives Me Indigestion" - we both laughed at the thought.
Now a new era of blogging begins. Lemonade with Indigestion. Writings on how we are coping as a family with this adventure called life.
Tonight, all I can say is: Bring me a Diet Coke!!!!!
So know that when I share this blog, I have asked Ashley's permission first.
We are in a tough place. Tough as a mom and daughter. Me letting go some. Her finding independence while still needing mom and dad so much. Tough as a pre-teen who wants to look and act and walk and talk like her friends. Tough as a mom who sees her struggle. Tough as a student who hates to take the extra steps to learn. Tough as a teacher who requires those steps. Tough as a human being in pain. Tough as a mom who can't take the pain away.
Yeah, we have our "come to Jesus" moments.
Literally.
We have fought. We have "discussed." And then we have prayed. Prayed alot.
Sometimes there are tears. Sometimes just alot of sighs.
Basically we are left with this decision: Do we let what satan has meant for evil destroy us or do we allow God to turn it to good?
Destruction is easy. We can give up. Sit in our corners. Do nothing.
Good takes work. It's painful. It takes molding and finishing. Scrubbing, polishing, knocking off rough spots.
Recently, one of our little friends had to take a trip to Children's Hospital in Denver. She has suffered for a year with abdominal pain and it was time to seek a specialist. Her greatest fear was having cancer. To her little mind, a children's hospital meant cancer because of a little boy at school who was diagnosed with cancer last year. Ashley was able to sit with her, take her on-line to the hospital's web-site and talk to her about how great the hospital was at helping all sorts of children. Ashley told her how they helped her walk better. How nice the doctor's were. How great the gelato was at the coffee shop. By the end of the evening, our little friend was feeling comfortable, if not a little excited, to go to Denver!
Good from evil.
I guess you are wondering where the title for this post came from. Today while driving into town, Ashley and I discussed writing a book together. A book to guide parents and children through the difficulties of disabilities; through visiting hospitals; through "come to Jesus" meetings. I said we could name it, "Making Lemonade" from the saying, "if life gives you lemons, make lemonade."
But I don't like Lemonade, and I suggested that as a title: "I Don't Like Lemonade." It gives me indigestion.
Just the thought of making lemonade is bad. It means something is cut, squeezed; syrup is added to boiling water to create a syrup then the whole mess is poured over ice. A shock to anyone's system. Not a great perspective. The end product is nice, but getting there is tough!
"Lemonade Gives Me Indigestion" - we both laughed at the thought.
Now a new era of blogging begins. Lemonade with Indigestion. Writings on how we are coping as a family with this adventure called life.
Tonight, all I can say is: Bring me a Diet Coke!!!!!
Wednesday, October 20, 2010
Here's What's Going On . . .
Get a cup of coffee. And a donut. This is a long one. But it's my therapy! And it answers so many questions.
If you don't know, our daughter Ashley has left-hemiplegic dystonic Cerebral Palsy due to a mid-cerebral arterial branch stroke at 6 months of age following a fall which wrenched her neck and tore her caratid artery. Sounds fun! You can read more about it here. (I just posted my first link!)
It's not been an easy 12 years but it could have been so much worse. Her original prognosis was that of an 18 month old in an adult body! But God said, "Ha!" She has had 5 orthopedic surgeries: two heel cord lengthenings, one tendon transfer, one leg lengthening; plates on her "good" leg to inhibit growth and the removal of those plates.
There's been years of seizures. Possible brain surgeries. Drug trails. Drug removals. Emotional unheavals. Learning difficulties.
Oh, but God has been faithful!
So, here we go -
Definitions:
Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting
and repetitive movements.
Myoclonus is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign
and, generally, is not a diagnosis of a disease. The myoclonic twitches are usually caused by sudden
muscle contractions. A hiccup is a myoclonic reaction.
Doctors go back and forth between the two terms above to describe the condition. But this we do know: she is in chronic pain, mostly in her back. The meds dope her and make her too drowsy, tempermental and angry and, one wonderful drug - depressed.
Their suggetsions run two courses:
1.) Insertion of a Baclofen Pump -
Baclofen Pump The procedure for insertion of an intrathecal baclofen pump lasts 1-1.5 hours. The pump is inserted under the covering of the abdominal muscles while the patient is under a general anesthetic. A small catheter is inserted through a needle into the spinal fluid and is threaded upward toward the neck. The catheter is tunneled under the skin to the abdomen and is connected to the pump. The pump is filled with the drug baclofen and is programmed by a computer to continuously release a specified dose that is determined by the physician. http://www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#Baclofen
2.) Deep Brain Stimulation -
Deep brain stimulation (DBS) is a method of treating dystonia and tremor that involves an operation in which thin blunt wires (electrodes) are surgically implanted precisely into a small area deep in the brain. If the abnormal movement affects one side of the body, one electrode is inserted (on the opposite side of the brain than the body is affected). If both sides of the body are affected, bilateral (both sides) electrodes are inserted. The electrodes are tunneled under the skin down the neck and are connected to an electrical stimulator unit than can be programmed with a computer to stimulate the area of the brain at the tip of the electrode. The idea behind DBS is that fast electrical stimulation (130 times a second) interrupts the abnormal electrical circuit within the brain that is causing the abnormal movements. www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#dps
In two weeks, we visit again with the Neurologist in Denver. At that time, she may decide both are best, neither are any good or choose just one. Currently, the team is leaning towards Option #1 - Baclofen Pump.
How does that work?
On December 6, under general anesthesia, she will have a test dose of Baclofen inserted into her spinal column. After 2-3 hours of laying flat, doctors and therapists will begin evaluating her improvement. They will discuss their results and by 2pm give us a Go or No Go. A "Go" means surgery on December 8th and approximately 3-5 days in the hospital to adjust the medication and give the spinal column time to seal and heal.
A "No Go" means we look at two clinics on brain stimulation - Pittsburgh or Fort Worth. I have family in Texas, so I would be more inclined to go there. (Okay, it's Texas. 'Nuff said.)
How does Ashley feel? Well, the pain is wearing on her. We see her doctor again today. Baclofen pump - doesn't bother her so much. Brain surgery? Forget it! (Thanks to an episode of House where a brain surgery was screwed up, she will not even entertain the idea.)
Dozens of folks have lined up to shave their head if she has brain surgery! She smiles at that thought - a bald-headed church! A bald-headed family! wahahahaha!
How is Chris? He's our warrior - telling her to buck up, she can do this!
How does mom feel? Honestly? A little Weary. Not fearful. The path was laid long ago. But I know this road, been on it for a long time, it's as long and dreary as I40 through New Mexico and Texas. Honestly, I feel like a Gladiator. It's another fight. I know we will win. But is strains the nerves to hear the crowd cheer, my muscles are tight in expectation of the conflict but I'm on my knees preparing in the Heavenlies.
How does dad feel? It's his baby girl.
Not long after Ashley's stroke, my Great Uncle died. I loved that man! He had such a great sense of humour. I was so lucky to spend so much time with my Uncle PeeWee. On the way to his funeral, a song began to play - (I've taken the liberty of changing a few pronouns).
That pretty much says it all.
If you don't know, our daughter Ashley has left-hemiplegic dystonic Cerebral Palsy due to a mid-cerebral arterial branch stroke at 6 months of age following a fall which wrenched her neck and tore her caratid artery. Sounds fun! You can read more about it here. (I just posted my first link!)
It's not been an easy 12 years but it could have been so much worse. Her original prognosis was that of an 18 month old in an adult body! But God said, "Ha!" She has had 5 orthopedic surgeries: two heel cord lengthenings, one tendon transfer, one leg lengthening; plates on her "good" leg to inhibit growth and the removal of those plates.
There's been years of seizures. Possible brain surgeries. Drug trails. Drug removals. Emotional unheavals. Learning difficulties.
Oh, but God has been faithful!
So, here we go -
Definitions:
Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting
and repetitive movements.
Myoclonus is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign
and, generally, is not a diagnosis of a disease. The myoclonic twitches are usually caused by sudden
muscle contractions. A hiccup is a myoclonic reaction.
Doctors go back and forth between the two terms above to describe the condition. But this we do know: she is in chronic pain, mostly in her back. The meds dope her and make her too drowsy, tempermental and angry and, one wonderful drug - depressed.
Their suggetsions run two courses:
1.) Insertion of a Baclofen Pump -
Baclofen Pump The procedure for insertion of an intrathecal baclofen pump lasts 1-1.5 hours. The pump is inserted under the covering of the abdominal muscles while the patient is under a general anesthetic. A small catheter is inserted through a needle into the spinal fluid and is threaded upward toward the neck. The catheter is tunneled under the skin to the abdomen and is connected to the pump. The pump is filled with the drug baclofen and is programmed by a computer to continuously release a specified dose that is determined by the physician. http://www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#Baclofen
2.) Deep Brain Stimulation -
Deep brain stimulation (DBS) is a method of treating dystonia and tremor that involves an operation in which thin blunt wires (electrodes) are surgically implanted precisely into a small area deep in the brain. If the abnormal movement affects one side of the body, one electrode is inserted (on the opposite side of the brain than the body is affected). If both sides of the body are affected, bilateral (both sides) electrodes are inserted. The electrodes are tunneled under the skin down the neck and are connected to an electrical stimulator unit than can be programmed with a computer to stimulate the area of the brain at the tip of the electrode. The idea behind DBS is that fast electrical stimulation (130 times a second) interrupts the abnormal electrical circuit within the brain that is causing the abnormal movements. www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#dps
In two weeks, we visit again with the Neurologist in Denver. At that time, she may decide both are best, neither are any good or choose just one. Currently, the team is leaning towards Option #1 - Baclofen Pump.
How does that work?
On December 6, under general anesthesia, she will have a test dose of Baclofen inserted into her spinal column. After 2-3 hours of laying flat, doctors and therapists will begin evaluating her improvement. They will discuss their results and by 2pm give us a Go or No Go. A "Go" means surgery on December 8th and approximately 3-5 days in the hospital to adjust the medication and give the spinal column time to seal and heal.
A "No Go" means we look at two clinics on brain stimulation - Pittsburgh or Fort Worth. I have family in Texas, so I would be more inclined to go there. (Okay, it's Texas. 'Nuff said.)
How does Ashley feel? Well, the pain is wearing on her. We see her doctor again today. Baclofen pump - doesn't bother her so much. Brain surgery? Forget it! (Thanks to an episode of House where a brain surgery was screwed up, she will not even entertain the idea.)
Dozens of folks have lined up to shave their head if she has brain surgery! She smiles at that thought - a bald-headed church! A bald-headed family! wahahahaha!
How is Chris? He's our warrior - telling her to buck up, she can do this!
How does mom feel? Honestly? A little Weary. Not fearful. The path was laid long ago. But I know this road, been on it for a long time, it's as long and dreary as I40 through New Mexico and Texas. Honestly, I feel like a Gladiator. It's another fight. I know we will win. But is strains the nerves to hear the crowd cheer, my muscles are tight in expectation of the conflict but I'm on my knees preparing in the Heavenlies.
How does dad feel? It's his baby girl.
Not long after Ashley's stroke, my Great Uncle died. I loved that man! He had such a great sense of humour. I was so lucky to spend so much time with my Uncle PeeWee. On the way to his funeral, a song began to play - (I've taken the liberty of changing a few pronouns).
She's My Chld
(Mark Schultz)
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a girl that needs Your help
I've done all that I can do myself
Her mother is tired
I'm sure You can understand
Each night as she sleeps
She goes in to hold her hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see her?
Can You make her feel all right?
If You can hear me
Let me take her place somehow
See, she's not just anyone
She's my Child
Sometimes late at night I watch her sleep
I dream of the girl she'd like to be
I try to be strong and see her through
But God who she needs right now is You
Let her grow old
Live life without this fear
What would I be
Living without her here
She's so tired and she's scared
Let her know that You're there
That pretty much says it all.
Sunday, November 30, 2008
Tomorrow
The surgery is over. We've been home a week and 3 days. Recovery is going well.
Now it gets tough.
Juggling work, family, school and doctors appointments and therapy appointments and checking insurance claims against bills. Then add Christmas! And programs and parties.
The surgery was cake compared to what lies ahead.
Therapy is not pretty. It hurts her. It's hard to watch.
But it's essential.
A doctor once told me that he does not allow Grandparents to attend therapies or certain medical procedures because a Grandpa once cold-cocked him for causing his grandchild pain. This doctor went on to explain that a parent is willing to see their child endure pain in order to accomplish a greater good. Hence, the pain of therapy for the benefit of being more mobile. A grandparent wants to intervene and stop all pain, regardless of the benefit.
I think this is why God has no Grandchildren.
Father God is willing to let us suffer temporary pain in order to bring us into a relationship with Him. We must each have our own relationship with Him as Savior. We cannot go to Heaven on the experiences of our parents or grandparents. We cannt go to Heaven based upon the ethereal definitions of being a "good" person or being "kind". It is all about relationship.
God is longing to have a relationship with you. He wants you to know Him personally, intimately. Not just know "of" Him. The demons know "of" God. The angels in Heaven know God as creator. But only you, only a Human Being can have a relationship with Him. He will be what you need when you need it - Father to the fatherless; Husband to the husbandless; Friend to those who feel unloved. He will be your Provider. He will be your Healer. He longs to be your Father.
Won't you answer His call?
Father, I want to have a relationship with you. I want to know Father God as more than a vague reference to a disconnected diety. I want to Know you. My life has not been perfect. I am a flawed being and your perfection is sometimes intimidating. But I will take you at your word when you say you love me just as I am. I accept the gift of Salvation that you offer to me. I accept a new start for my life. I believe you are God. You are the only God. I want you to be my God; my Savior, my friend. I choose today to turn away from my own selfish ways. I choose to walk with you. Walk with my, Father. Thank you.
Now it gets tough.
Juggling work, family, school and doctors appointments and therapy appointments and checking insurance claims against bills. Then add Christmas! And programs and parties.
The surgery was cake compared to what lies ahead.
Therapy is not pretty. It hurts her. It's hard to watch.
But it's essential.
A doctor once told me that he does not allow Grandparents to attend therapies or certain medical procedures because a Grandpa once cold-cocked him for causing his grandchild pain. This doctor went on to explain that a parent is willing to see their child endure pain in order to accomplish a greater good. Hence, the pain of therapy for the benefit of being more mobile. A grandparent wants to intervene and stop all pain, regardless of the benefit.
I think this is why God has no Grandchildren.
Father God is willing to let us suffer temporary pain in order to bring us into a relationship with Him. We must each have our own relationship with Him as Savior. We cannot go to Heaven on the experiences of our parents or grandparents. We cannt go to Heaven based upon the ethereal definitions of being a "good" person or being "kind". It is all about relationship.
God is longing to have a relationship with you. He wants you to know Him personally, intimately. Not just know "of" Him. The demons know "of" God. The angels in Heaven know God as creator. But only you, only a Human Being can have a relationship with Him. He will be what you need when you need it - Father to the fatherless; Husband to the husbandless; Friend to those who feel unloved. He will be your Provider. He will be your Healer. He longs to be your Father.
Won't you answer His call?
Father, I want to have a relationship with you. I want to know Father God as more than a vague reference to a disconnected diety. I want to Know you. My life has not been perfect. I am a flawed being and your perfection is sometimes intimidating. But I will take you at your word when you say you love me just as I am. I accept the gift of Salvation that you offer to me. I accept a new start for my life. I believe you are God. You are the only God. I want you to be my God; my Savior, my friend. I choose today to turn away from my own selfish ways. I choose to walk with you. Walk with my, Father. Thank you.
Tuesday, October 28, 2008
Things We Dread the Most
A new member of the household.
When Ashley had her stroke, it was funny the things that bothered me. Like Shoes. I cried in every shoe department. Because of her braces and her affected walk, she would never wear all the cute little shoes I saw. Mules, high heels, ballet slippers, flip-flops, etc.
When her forehead skin was different colors (don't ask why - they don't know - but it looked like white butterflies on her forehead), that bothered me. She was so beautiful and I wanted people to see her beauty, not the splotches.
I hated for her to wear her arm and leg braces in public after one old biddy cooed over her infant seat in a store, "honey, what did your momma do to you?" I got over it eventually and we have boxes of braces.
But mostly I never wanted her to have a wheel chair. When they said she'd never walk, I dreaded bringing home that tiny little chair. We have had a modified chair for years - but it looks like a giant umbrella stroller and is not so offensive. And people don't stare at it.
Now she has a chair.
Her left foot is causing her so much pain. The tendons are swollen and they can't straighten her foot at all. They couldn't cast it - the foot would contract in the cast and create pressure points cutting off circulation and killing the skin and possibly other tissue. She just needs off of it.
She can't use crutches because of her hand and arm weaknesses and a walker presents the same problems. So, they want her resting in a chir and they are calling the surgeons in Denver.
I know this is needed. But it is not liked.
This hideous wheeled beast needs to leave my home. My beautiful daughter is sitting in the lap of this black and metal intruder. My heart aches.
How does Ashley feel? God bless her heart - she loves it! She's mobile and fast and her foot's not hurting. She was thrilled to be fitted for the chair. I guess she's been hurting more than we realized.
God - help me. This is not a road we chose. I don't want to be here. I don't want my daughter to be here. Heal her. Please.
When Ashley had her stroke, it was funny the things that bothered me. Like Shoes. I cried in every shoe department. Because of her braces and her affected walk, she would never wear all the cute little shoes I saw. Mules, high heels, ballet slippers, flip-flops, etc.
When her forehead skin was different colors (don't ask why - they don't know - but it looked like white butterflies on her forehead), that bothered me. She was so beautiful and I wanted people to see her beauty, not the splotches.
I hated for her to wear her arm and leg braces in public after one old biddy cooed over her infant seat in a store, "honey, what did your momma do to you?" I got over it eventually and we have boxes of braces.
But mostly I never wanted her to have a wheel chair. When they said she'd never walk, I dreaded bringing home that tiny little chair. We have had a modified chair for years - but it looks like a giant umbrella stroller and is not so offensive. And people don't stare at it.
Now she has a chair.
Her left foot is causing her so much pain. The tendons are swollen and they can't straighten her foot at all. They couldn't cast it - the foot would contract in the cast and create pressure points cutting off circulation and killing the skin and possibly other tissue. She just needs off of it.
She can't use crutches because of her hand and arm weaknesses and a walker presents the same problems. So, they want her resting in a chir and they are calling the surgeons in Denver.
I know this is needed. But it is not liked.
This hideous wheeled beast needs to leave my home. My beautiful daughter is sitting in the lap of this black and metal intruder. My heart aches.
How does Ashley feel? God bless her heart - she loves it! She's mobile and fast and her foot's not hurting. She was thrilled to be fitted for the chair. I guess she's been hurting more than we realized.
God - help me. This is not a road we chose. I don't want to be here. I don't want my daughter to be here. Heal her. Please.
Sunday, September 7, 2008
Ashley's Poem
As you may know, our 10 year old daughter was only 6 months old when she suffered a massive mid-cerebral arterial stroke leaving her with approximately 1/2 of the right side of her brain fully functional as well as left hemi-paretic cerebral palsy. There have been years of physical therapy, countless doctors visits, horrible Botox injections and two surgeries to get her where she is today. Ashley is a trooper - she skis, rides her own quad, is an avid Girl Scout and is very tender hearted. Her dream is to be a mom. She is behind one grade level but functions quite well despite her disability.
God has truly redeemed her pain.
Ashley loves to write. Sometimes in talking, she has trouble find the right words for a conversation, but with pen in hand, she can take her time. Recently, we found the following poem she had written.
My Place by Ashley Beach
I don't seem like a regular girl, because I am so rigid
But you are wrong about me, you are wrong about me
Because you don't know me.
My days have been so wrong but I deal with it
Because I am strong, I am strong.
That's my girl! She is strong! She is compassionate! She has a heart for God. She is my hero.
God has truly redeemed her pain.
Ashley loves to write. Sometimes in talking, she has trouble find the right words for a conversation, but with pen in hand, she can take her time. Recently, we found the following poem she had written.
My Place by Ashley Beach
I don't seem like a regular girl, because I am so rigid
But you are wrong about me, you are wrong about me
Because you don't know me.
My days have been so wrong but I deal with it
Because I am strong, I am strong.
That's my girl! She is strong! She is compassionate! She has a heart for God. She is my hero.
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