Sunday, November 28, 2010

God's good plan for disability

It's been a fun few days.  What a blessing to have KJ home from college.  AJ has lots of crazy fun with her.

I had two interesting experiences this weekend.  Both very different and both reminding me of God's good plan for disability.  
          1st experience: I heard an able bodied person say to another, "He is such a miserable person; you know he has been crippled and in a wheelchair since a young age". Wow, that statement struck me hard.  Here was AJ, another young boy and an older man all sitting nearby in their wheelchairs.  Were they miserable or bound for that?  Does a disability ensure misery?
          2nd experience;  AJ wanted to watch an older man drive his wheelchair into his custom accessible van.  The man was paralyzed and in a power chair like AJ's. It was pretty cool to see what technology offers and how the doors would open, the lift come down and then all back closed again.  After the doors were closed and we were ready to leave, we noticed the bumper sticker on the back of the van.  It said,
"Breaking my neck 
Screwed my head on straight"
Psalm 119:71
Now who of the two men really understood God's plan for disability.  Yes, the second!  The man with the disability knew that God planned his disability for good.  He understood God's word and was blessed by it.   The first viewed disability as a source of misery.  This is a common misconception of many because we do not look at it through the eyes and understanding of Jesus.
Psalm 119:71 (English Standard Version)  
It is good for me that I was afflicted,
 that I might learn your statutes.
Living a life separated from Jesus Christ is a sure way to misery.  You can have health, riches and all that life has to offer and be the most miserable person.  All of us need Christ to find joy amidst adversity.

On another note.  Aj's esophagus is so narrow that he can not eat much at all.  He has to spit everything back out.  We are planning on calling the doctor tomorrow and talk about the plan for him.  Today KJ, JR, AJ and I went out for breakfast.  He could not even swallow a tiny, tiny piece of scrambled eggs.  But...he did find something he could eat and he was so happy with it. 

Can you guess the food?

Ummm, this is good

Why didn't you tell me about this before?

I can't believe it's butter!

 Whipped butter to be exact.  KJ was so grossed out.  Hey, he was enjoying something that must have tasted good and it melted down his throat.

Have a great day,


Wednesday, November 24, 2010

Thanksgiving and God’s Character

Happy Thanksgiving Everyone!  

I was thinking back to the days when my children would think of something that we were thankful for in association with the letters of the word Thanksgiving.  It’s a simple game but it was one way of focusing on thankfulness rather than on our selfish desires.

As I thought about the things that I was thankful for this year, I was drawn to look deeper at the character of God, our heavenly father.  Were it not for Him, I would have nothing to be thankful for.  Here is my personal list of attributes that proclaim God as glorious.  

T       God is Truth
Psalm 119:160 (English Standard Version)
The sum of your word is truth,
and every one of your righteous rules endures forever

H       God is Honest
Deuteronomy 32:4 
(New International Reader's Version)
  He is the Rock. His works are perfect.
      All of his ways are right.
   He is faithful. He doesn't do anything wrong.
      He is honest and fair.

A       God is Amazing
Revelation 15:3 (English Standard Version)
And they sing the song of Moses, the servant of God,
and the song of the Lamb, saying,
"Great and amazing are your deeds,
O Lord God the Almighty!
Just and true are your ways,
O King of the nations!

N       God is Near
Psalm 34:18 (New American Standard Bible)
The LORD is near to the brokenhearted
 And saves those who are crushed in spirit.
K       God is Kind
Psalm 145:17 (Contemporary English Version)
Our LORD, everything you do
is kind and thoughtful

S       God is a Shield
Psalm 91:4 (New International Reader's Version)
He will cover you with his wings.
Under the feathers of his wings you will find safety. 
 He is faithful. He will keep you safe like a shield or a tower.

G       God is Good
Deuteronomy 32:4 (New International Version)
He is the Rock, his works are perfect, 
and all his ways are just. 
A faithful God who does no wrong, 
upright and just is he.

I       God’s is Immanuel (God is with us)
Matthew 1:23 (New International Version)
“The virgin will conceive and give birth to a son, 
and they will call him Immanuel (which means “God with us”).

V       God is Victorious
Habakkuk 3:18 (Amplified Bible)
Yet I will rejoice in the Lord;
I will exult in the victorious God of my salvation!

I       God Does the Impossible
Luke 1:37 (New International Reader's Version)
Nothing is impossible with God.

N       God's Love is Never Failing
Psalm 6:4 (New International Reader's Version
Lord, turn to me and help me.
Save me.  Your love never fails.

G       God is Gracious
Psalm 86:15 (English Standard Version)
But you, O Lord, are a God merciful and gracious,
slow to anger and abounding in steadfast love and faithfulness.

What better way to celebrate Thanksgiving than to focus our eyes on the awesome character of our God!  

I’ll close with some silly bandaging pictures of AJ – don’t worry, his head is fine – he just wanted to have some fun.

Happy Thanksgiving,


Saturday, November 20, 2010

Yeast…not the baking kind

AJ has a yeast infection on his skin.  It’s his second in a few months.  In reality, he probably never got over his last one.  Every time we get close to him he smells like sour dough bread.  I was never a big fan of sourdough bread but I’m less of a fan now.  He continues with his bath everyday and we add salt to lessen the sting of the water on his open wounds.  That may sound strange but it turns the water into saline solution.  We also add vinegar to help with the infections.  I need some ph strips to check the acidity of the water but have not found them in our local stores.  If we can get the ph in the best possible range, it will work the best to help kill his infections.  Thanks to Casey’s parents for the suggestion of a medication to use.  We have started it and progress is being made.  Here is a picture of AJ in his little bathtub. 

This is after the screaming and arching his back in fear that the water will hurt.  We have lots of toys and games but he is just not going to willingly step into that water.  AJ is not a big talker but this week he has been big into using the words medicine and bandages.  He wants pain relief and he wants to get his bandages back on quickly.  Please pray for a quick and complete healing of the yeast infection. 

What a blessing to know that God will meet AJ’s needs.  We do not need to be anxious about his infection but instead we will make our request known to God.

Philippians 4:5-7 (English Standard Version)
Let your reasonableness be known to everyone.  The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

We have so much to be thankful for.  God really is good!


Friday, November 5, 2010

Until we meet again...

We just received word that little Elle’s journey with EB ended in the arms of Jesus.  Elle had junctional EB, a form that is extremely fatal in the first year of life.  She was at the University of Minnesota Hospital to take part in an experimental bone marrow transplant.  She died from complications related to the transplant.  Please pray for her family.  It was just a few weeks ago that Bella also died from transplant complications.  I cannot imagine the grief that their families carry in their hearts.  Please pray for both them. 

I will close with scripture that reminds us that God is the breath of our being. 

Job 12:7-10 (New International Reader's Version)
 But ask the animals what God does. 
      They will teach you. 
   Or ask the birds of the air. 
      They will tell you. 
  Or speak to the earth. It will teach you. 
      Or let the fish of the ocean educate you. 
  Are there any of those creatures that don't know 
      what the powerful hand of the Lord has done? 
  He holds the life of every creature in his hand. 
      He controls the breath of every human being.

And that the number of our days is decided by him.
Job 14:5 (Contemporary English Version)
Our time on earth is brief;
   the number of our days
   is already decided by you.

Yet we are not alone, left abandoned.  He alone is our comforter.

2 Corinthians 1:3-5 (New Living Translation)
 All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.  He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.  For the more we suffer for Christ, the more God will shower us with his comfort through Christ.


Thursday, November 4, 2010

It's not me; It's Him.

I love my kids and I love caring for them but I have grown tired of the saintly comments that well intentioned people share with me.  I know they mean well but I am not a saint or super Mom, as some refer to me. Here is solid evidence of who I am:

I Timothy 1:16a (The Message) states, "Here's a word you can take to heart and depend on:  Jesus Christ came into the world to save sinners.  I'm proof - Public Sinner Number One - of someone who could never have made it apart from sheer mercy."

I have often been asked, "How do you do it?  Caring for all those kids and dealing with AJ's physical needs on a daily basis?"  The answer, "I don't."  (read on)  

Galatians 2:20 (New International Version) states, "I have been crucified with Christ and I no longer live, but Christ lives in me.  The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me."  

Were it not for the life of Christ that lives in me;  I could never do this.  I could not love my kids with the unconditional love that Christ shows.  I could not provide the care and devotion that they so desperately need.

Do I get tired?  Yes!
  • Last week we had more than fifteen medical appointments. 
  • My kids attend seven different schools and most all of them have special education plans that we are in the middle of “tweaking”.
  • AJ had his tube replacement, for which we are grateful that it went well.  He still has some leakage but we are working on that. 
  • My husband is struggling with some of his own physical problems and has started the process of multiple medical appointments looking for an answer.
Oh…so tired and weak, but…I stay on my feet and keep my sanity only by staying strong in Christ.  It’s His strength, delivered by grace which gets me and the rest of my family through. The credit goes to Him.

2 Corinthians 12:9 (New International Reader's Version) encourages me by stating, "But he said to me, "My grace is all you need.  My power is strongest when you are weak."

So I am very happy to brag about how weak I am.  I want and need Christ's power to rest on me.

It's a new week...
  • AJ had a esophageal study done this week and we learned that his esophagus has a blockage, narrowing it to 3mm.  This is not unusual in RDEB and we will be praying and watching to see when intervention is necessary.  Eventually he will need a balloon dilatation where they intubate him and guide a deflated balloon into the area – inflate the balloon and open the area up.  AJ does not have a good history of intubation so we are not excited about the prospect.  The procedure also carries a risk of tearing his esophagus. For now, we will wait.  
  • We also received word that AJ’s iron level is dropping again.  Kids with RDEB often lose the ability to absorb nutrients due to scarring in their intestines.  We will increase his iron again, with the hopes that he can maintain his level a bit longer this time.
  • Our son, RR, has had his own share of medical interventions this week.  He has struggled for years with very unusual physical symptoms that no physician has ever found a cause for.  This week his sodium was found to be extremely elevated which has resulted in a visit to a kidney specialist and tomorrow, an endocrinologist.  In January, he will see a neurologist.  After all of these visits and tests, we would be blessed to finally have a diagnosis and a plan for his care or treatment.  Again, we will wait. 
Thank you for your prayers and encouragement.  Thank you also for recognizing me for who I really am;  A sinner, saved by grace and now alive in Christ.  May all the praise and glory go to Him.