Thursday, July 29, 2010

Ask For Believing....

So much has happened since my last post.  Unfortunately, it is getting increasingly difficult to type because my fingers do not do what I want them to do! 

The elevator is coming soon.  The architects and the vendor came to the house last week.  We should know soon when the work day will be scheduled. 

Because of a grant given to us from the Board of Developmental Disabilities, we can purchase a washer/dryer combo machine.  It is very good timing as our dryer quit working a couple of weeks ago.  We have literally let our underwear flap in the breeze for the last couple of weeks!

This combo machine allows us to put in clothes once and take them out of the machine after they are dry.  This feature will really help as the arm pain and loss of function continues to worsen for me.

I also received a call from the ladies at Cincinnati Children's Hospital Family Financial Advocacy department.  These are the ladies that have taken up the torch, so to speak, on dealing with the insurance company.  Beginning in the spring of 2008, I was spending hours on the phone with my insurance company because many of our claims were being denied.  The majority of the claims were centered around physical therapy.  I had logged close to 100 calls and was at the end of my patients and desperate for help. 

Not only did these ladies take over dealing with the insurance company, but they also helped me apply for BCMH, which is a state program for children with medical handicaps. 

Last week they called and said that all of the PT claims were approved.  At one time, this total was close to $10,000 and now we have a $0 balance!  We all cried on the phone.  It was such a long battle for me but also for them.  I think the insurance company thought we would just give up, but that was not the case.  Praise God!

They also told me that someone at Children's looked at Erica's wheelchair claim.  This claim was denied by our insurance company.  The company claimed that not enough information was submitted by Children's, therefore, it was denied.  I could not do anything on my end, so we resolved to try to pay it off.  Mind you, we still had several thousand dollars in bills that had nothing to do with PT or the wheelchair.  A hold was put on the account so that we could pay this total off first.

When it came time to start paying on the wheelchair again, the ladies told someone higher up the chain about the insurance denial on the wheelchair.  They told me last week that the balance was gone.  Where did it go?  They said they didn't know.  I asked would it come back, and they said it would not!  So in one short conversation, $15,000 of our medical bills went up is smoke!  Hallelujah!

When I told my family about the great news, I reminded CJ that God did answer our prayers.  He has prayed for a couple of years that our medical bills would just go away, and they did!  I told him that the prayers of children are sometimes more powerful than the prayers of adults.  When he asked why, I said that adults pray for things that they think are possible, kids, on the other hand, do not have those limits in their prayers.  They go ahead and ask for the "impossible" and believe God can do it.  What you ask for, believing will be given to you."

Friday, July 16, 2010

"The Peace that Passes Understanding"

Almost immediately after I wrote the last post, I received a message from Marnie with the Hearth Professionals saying  that a vendor has been found to install the elevator!  God is so good!  I am so happy that God gave me peace before we got the good news.

Because the vendor has been found, the transformation of our house can go into the next phase.  The money for the elevator has been secured, but much of the other expenses need funding.  The architects and the elevator company will come over to look at the house on Wednesday.  The plans will be available for the permit and we can set a date for the beginning of the shaft construction.

This is where we need a lot of help.  Not only do we need donations for the building materials, but we will also need volunteers for the construction.

We need to figure out a fundraiser for these expenses.  If you have any ideas to help, we would love to hear them. 

All of this is even more urgent as we continue to try to understand what is happening to Elizabeth.  She went back to the doctor today and the good news is that she does not need hip surgery!  The down side is we still do not know why she is falling.  Some of it can be written off as clumsiness, but not all.  One of the theories discussed is a condition known as POTS (Postural Tachycardia Syndrome).  Based on what I read, up to 78% of people with EDS Hypermobility have this condition.

As I understand it, when she is standing up, the blood vessels in her body are supposed to constrict so the brain will get most of the blood or oxygen.  Because people with EDS have weak tissues, this automatic system does not work well which can cause momentary "blacking out."

While listening to us, Elizabeth said, "So when I wake up in the morning and stand up to stretch and my eyes go black, that is what is going on?"  Well, yes, that is exactly what is going on.

The problem is that there is not an easy fix with this condition.  Because she is falling at such an alarming rate and she is getting injured, we will have to limit her standing.  She will need to use the wheelchair even more.  A cane, crutches or walker are not recommended with EDS and certainly not with POTS.

I do not mean to put the cart before the horse, but it would explain a lot of strange things that are happening.  The ortho doctor said that she is injuring her hip when she falls, probably causing her torn tendon to be pinched between her leg bone and her hip.  We will not need to continue to take her to the ER for this.  He showed us how to help her get that back at home.

Again, we thank all of you for your prayers and support!

Wednesday, July 14, 2010

Remember the Blessings

I am writing a response to myself in regards to what I can do in light of the new symptoms and hardships our family is going through right now.  The worst think I can do is to despair and get depressed.  All the worry in the world will not change the facts of our situation.  What can change and should change is my reaction to it.  I will be a further burden if I get grumpy and angry in light of these circumstances.

Reading A Lifetime of Wisdom  by Joni Ereckson Tada has shown me that God says no to healing to many of us and that is okay.  Not only is okay, but I thank Him because it is through suffering we can really experience joy.  It is the opposite of suffering that makes our joy all the sweeter.

I love what she says in "But Why Would He Say No to My Healing?" (A Lifetime of Wisdom pg 192-193)
     It's not because He lacks ability.
     It's not because He lacks concern.
     It's not because He is deficient in love.
     It's not because He is somehow preoccupied and has forgotten about us.
     Know God better through suffering?
     Closer to God through trials?
     Discover God's hand in heartbreak?

God told us in scripture that he listens to the groans of our hearts and he collects all of our tears.  God really listens when we are in trouble and we call on Him in desperation.  God is listening to me very closely right now.  He is cupping His Hand to His Ear to hear my cries.  He is allowing this to happen so that so many other blessings will come if I remain faithful.

"There is more to come: We continue to shout our praise even when we're hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next.  In alert expectancy such as this, we're never left felling short changed.  Quite the contrary-we can't round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!" (Rom 5:3-5 The Message Bible)

I want to write this on my hand, my forehead and on every mirror in my house. When I get low, like I have been recently, it is easy for me to forget the amazing things that God has done for me and others.  When I forget, it distorts the truth and creates despair.  But when I remember the miracles, I know that God is very near and "His grace is sufficient."

God gave me an incredible husband.  Not just a nice guy, but one that is patient, loving, smart, kind, a great father and so on.  He gave me three amazing kids.  Kids that are already busy with Kingdom work in their short lives.  He has given me an amazing family and blessed me with a better relationship with my mom, for which all of these trials are worth it.  He has given me incredible friends in my neighborhood, church and around me.  People that pray for us every day.  People that help in more ways that I could express.

He blessed us with a wheelchair the minute we needed it.  He blessed us with a wheelchair ramp the minute we needed it.  He blessed us with two charities that are working on our behalf. He gave us friends that helped clean our home when we needed it.  He gave us money before we knew we needed it (and boy did we ever need it right at that moment!)  He even gave us toilet paper and paper towels!  He gave us free pizza to feed the workers that built the ramp.  He saved Erica's life with surgery at the exact moment she needed it.

There are so many blessings that I cannot share all of them here.  Is every desire of our hearts granted?  No.  It is hard and heartbreaking to see your child in pain.  But I know His ways are higher than my ways.

Tuesday, July 13, 2010

Grace for Today

Last night I was reading a very good book by Joni Earkson Tada.  Joni has suffered from quadriplegia for over 40 years.  She writes with such honesty but deeply rooted in biblical truths that it has been very inspiring to read.

She explained that God gives us grace for today, not yesterday or tomorrow.  Joni also painted a picture of God's grace as a mighty river and we are a tiny bird that balances on the edge of the river for a tiny sip, then we are satisfied and fly away.  How many blessings have I missed because I did not drink deeply in God's grace?

I don't want to waste my days waiting for things to get better, they may not.  I want to grab a hold of the joy that is in this day and in this moment. 

One thing that I have realized is that I would prefer to live a life of strife and worry than to live without God.  I think that all of the things that have happened to our family has strengthened our faith and without those stressers, we would not lean on God as much as we do.  I praise God for all of the little blessings He sends us every day as well as the big ones such as our family and friends.

Monday, July 12, 2010

My Brother

Fourteen years ago my parents and I were planning a funeral instead of celebrating a birthday.  My brother died the day before he turned 27.  Today is his birthday.

Eric, James Eric, was a very smart, funny guy.  We were just building a bond as adults when his life was cut short.  I don't think there is a day that passes without a wish that my brother was here.  I miss the way he would send verbal jabs waiting for me to jab back.  It was playful banter that we both enjoyed and would claim victory over the other (though he was very quick).

He went to Texas Tech University and received a degree in history.  He was the first employee of the Underground Railroad Freedom Center.  If you go to the museum, his name is on one of the flames (they have his name as Eric James Bachmann which is wrong, it is James Eric Bachmann).  He is also listed as a member of the board in abstentia.

Upon his death, then Senator Rob Portman read his obituary into the minutes of Congress, a scholarship was created in his name and he received the Freedom Conductor Award.  Later, Rosa Parks and Desmond Tutu also received this award.

When my son, CJ, was assigned to do a report on his hero, he chose Eric.  CJ became an expert on his life.  He would correct me if I quoted his graduation date wrong or all of the places we lived.  It was ironic because CJ reminds me of my brother in so many ways.

"So here is to us and those like us, damn few left!"

Sunday, July 11, 2010

Permanent Loss

I went to see an orthopedic hand specialists on Friday. I'd see my regular orthopedic surgeon regarding my arms a few months ago. He gave me are in braces and sent me to physical therapy.  Neither of which helped in any way. I also noticed that not only was the pain getting worse I was also having trouble controlling my hand movements. Things would just fall out of my hands I wouldn't be able to grasp small things like a piece of paper with my left hand.

I've spoken to my geneticist regarding this problem and he said that many people with EDS have a trapped radial nerve and it can be solved with a simple surgery.  So I had high hopes when I went to meet with the surgeon. I was shocked when he said that not only do I have radial nerve problems and carpal tunnel but the loss of function in my left hand had more to do with my neck then my arms.

He suggested that I go back to my spine surgeon to see if this is something that could be reversed or if it's permanent. In his opinion, he thinks it is permanent. That means it will not longer be able to use my left arm.

Now my head is swirling with how I'm going to be able to take care of my children, myself and my husband with one hand. Please don't take this wrong my husband does more than his share. But I want to be a partner not a liability. With the increasing demands for me physically to take care of especially Elizabeth, I do not know how it will be able to do it.

How am I going to be able to cook, drive a car, go grocery shopping, fold laundry, do the dishes, make a bed,or push my children's wheelchairs? I know there are many people that live near normal lives with only one arm now live a normal life.

These are the questions I want to shout to God.  I just want to learn whatever lessons I need to learn in order for the chaos to stop. I want in some way for me to be able to do something but I do not think it works that way. His ways are not my ways. Every time we think are getting close to the finish line, we were hit upside the head with something else. I do know that this life is temporary, and I hope cannot be here in this world, I have no idea how our family is going to be able to function.

A friend of mine said that when things look impossible, it must be God.  I just wish they would give me a glimpse or a hint of the solution. I have much joy when I thin about my eternal life.  This earthly existence is just weighing me down.

The Answer is Coming into View

So I have been praying for an answer regarding Elizabeth and her hip issues.  I think the answer is very clear, I just don't like it.  After her hospitalization and other difficulties, one of her doctors said that she had "little to lose" referring to the risk of surgery.

Elizabeth had been doing pretty well the last few days.  She was walking just a little, just on the first floor.  That all ended last night when she "popped out" again.  She is not able to get around at all.  She cannot even sit up in a regular wheelchair. It is difficult to tell her to lie down and not move when she's feeling okay, but when we do allow her to move and she gets injured again. It is like watching a slow train wreck. I also feel that no matter what we do her situation will not improve dramatically.

I just never thought we would be at this point with Elizabeth. She learned to walk, crawl, swim the same as any other child. But now when she supposed to be the strongest wheelchair seems to be her lot. It is kind of like the elephant in the room that we don't want to admit that is sitting and staring at us.

The structure of her family home will be forever altered. It seems that wheelchair ramps and asistive devices will have to be permanent. I know that might sound strange  and that I'm stating the obvious, but somewhere back in my brain I still was clinging to the hope that this was somehow temporary to leave as fast as it came.

So now we have to say to ourselves "so be it" and make the necessary changes. It's just heartbreaking to have to explain that to your 12-year-old daughter.

Sunday, July 4, 2010

Finding My Joy with an Ironing Board

The news from the Schulze family is not great.  I will have surgery at the end of this month, my mom will undergo another back surgery in September and Elizabeth's ability to walk has come to an end, at least for right now.  Her doctors are discussing surgery because as one said, "She does not have much to lose."  The surgery could work and she would be able to walk some, or it could fail, which could lead to a total hip replacement and permanent placement in the chair.

Before Elizabeth's latest hospitalization, I heard three sermons about joy.  Joy is different than happiness.  Happiness has to do with your "happenstance", meaning it has to do with what happens or does not happen to you. Happiness is temporal.  On the other hand, if you have intense happiness we call that joy.  Joy has a source, so what is your source?  Could your source of joy be taken from you? If it can, will you lose your joy forever?  I know many people that have lost their joy. 

After my brother died, almost 10 years ago, my dad's joy died.  To be truthful we saw him die that day too.  One of his main sources of joy died.  I think you also know many people that say they find joy in their children, and I am among them, but it is not my only source.

Anyone that has experienced significant loss, which is most of us, knows the emptiness that creeps into our hearts when we lose some thing or some one .  It is a terrible valley that we must walk through, but I do not think it has to be permanent.

Joy, in the sense of eternal joy is a feeling that cannot be "robbed" from you if you make your source of joy on God's love.  God tells us that nothing here on Earth, or anywhere else for that matter, can separate us from God's love after we accept it.

This type of joy, rooted in His love, can come bubbling up when you are in a desert of unhappiness.  In fact, this is where joy can really shine.  When the circumstances of life are desperate, horrible, sad, depressing, joy can be a light that allows you to have that "peace that passes understanding."  It is the peace that only God can deliver.

I do not claim this joy or peace all of the time, but when I allow myself to let go of the immediate circumstances, it is an amazing feeling. 

Case in point, Elizabeth popped out her hip yet again Tuesday night by simply walking up the stairs.  She was able to crawl to her room where we attempted to put her hip back in for the rest of the night.  In the morning we called her orthopedic surgeon and they said to get her to the hospital right away.  Because her hip was potentially dislocated for over 6 hours (it was 19 hours) the potential for her hip bones to die was very high.

Trying to keep the drama down, we used an idea that our priest came up with to help her out one day when this happened at church.  The men from church loaded her up on an ironing board and slid her in the minivan.  Chuck went and got the ironing board and he and a neighbor and the support staff loaded her up on the board and slid her in the van again.

When we arrived at the hospital, the nurses kept her on the board and brought her back to the trauma bay.  The doctors gave her medicine, and when they did her hip was able to relax enough to get the x-ray that caused her hip to slide back in to place.  The ironing boar was removed from under her body.

Because it was out for so long, her pain was unbearable.  She was admitted to a room.  She could not sit up at all so I could not transport her home.  So, they wheeled her up to her room, and I had to take the ironing board. 

It was quite a scene.  Elizabeth in a hospital and me carrying an ironing board.  The ER doctors and nurses knew why she was on the ironing board, but the people in the hall I think thought I had OCD of some sort.  I intentionally walked straight faced to the room.  I thought there would be at least one chuckle from the many witnesses in the hall and elevator but no one cracked a smile.  Granted, there is a kid going into the hospital and that is not fun, but someone carrying an ironing board through the hospital, that is funny!

Another sermon I heard talked about how she sees funny things everywhere.  She travels the country giving talks about joy and is kind of like a Christian stand-up comic.  She said invariably there will be one person in the front row that will not smile through her whole bit.  She keeps trying to get this person to laugh, but there is not expression of joy on her face.  Thinking that she is failing miserably, she panics and keeps trying to get this person to laugh.  She admits that after the show is over, usually the first person to come up will be the sour expression person saying it was the funniest show they had seen in many years.  Her reply is great, "Then tell it to your face!"  Le the joy in your heart tell your face to smile!

I kept thinking that many people need to tell their face to smile.  Joy is the miracle cure for any problem.  I do not want to trivialize loss and pain, but if you cannot laugh through your storm, it is going to be a long storm.  Protect your joy, do let others steal it.  Don't let circumstances dictate your joy.  God made us in His image and I know he has a sense of humor, just look around and tell your face!