My Peace, Where Did I Loose It?

It has been a rough few months.  Chuck has been out of town since the end of November, only coming home on the weekends.  During the Christmas chaos, it was hard, but since we knew it would only be a temporary job assignment, we all resolved to push through and endure.  But as each week passed the resolve in each of us began to crack.  The pressure of trying to manage the house, the kid's appointments, any my own pain and health issues caused me to feel more and more overwhelmed.

Last week I decided that I had reached my limit.  With several ER visits and both girls in wheelchairs again, I announced that "I could not do it anymore."  I told Chuck on the phone (which is always a great thing to tell someone that is far away) that I could not handle things without him.

Instead of resolving to have peace, I decided that I would not have peace unless Chuck was home.  Does this remind you of a two-year old's attitude?  Instead of things becoming more stable at home, things seemed to get worse.  Wizzy was nearly hospitalized for dehydration.  CJ was sick so I was unable to really ask anyone to help.  I did not want the stomach bug that was plaguing our house to enter into other households.

Again I called on my resolve to endure.  "I can do all things through Christ whom strengthens me."  But I was missing the root of the problem.  I was upset that Chuck was not home and it did not matter to me what else happened, I would not be happy until he was home.  The root of my distress was anger because I was alone.  I traded in my peace because I was not happy with my circumstances.  But since circumstances have little to do with real peace, it would not have mattered if he were home.  I had put up conditions that had to be met in order for me to be happy.

If I have learned anything along this journey it is that we cannot demand that certain conditions be met in order for us to be happy.  God wants us to be happy and peaceful and joyful despite our circumstances.

God's power protects you through your faith until salvation is shown to you at the end of time.  This makes your very happy, even though now for a short time different kinds of troubles make you sad.  These troubles come to prove that your faith is pure. 
(1 Peter 1: 5-9)
 

So I was putting the responsibility of my happiness on the shoulders of my loving husband.  Setting the requirments of what I needed in order "to handle it".  What if he were home, but having to work 12 hours a day, would I be able "to handle" that?  What if he were only out of town a couple of days a week?

I was acting like the 2 year old that can only be happy if you give her a cookie right now.  Most of you know that even if you give the 2 year old the cookie right now, she will only throw a fit in a couple of minutes to get another cookie.  She learns that throwing a fit equals a cookie.  Her happiness is never satisfied because she cannot keep eating cookies or she will get sick.  You as the adult withhold the cookie because you do no want to reward the child when she demands it because if you do, she will throw more and more fits to get more and more cookies which ultimately leads to the child getting sick and spoiled.

If I demand that certain things must be in place in order for me to be happy and peaceful, I know that The Father will do what all loving parents do in this siutation and that is withhold the cookie.  He wants us to be happy and peacful and joyful even when we don't get the cookie.  He wants us to rely on Him when we cannot "handle it." 

I cannot tell God that I will only be happy when Chuck is home because truth be told, I am not always happy when he is!  I cannot tell God that I will only be happy when my kids are healed and no longer in pain, because I know that with God's help I can be joyful in the midst of heartache.  I cannot put demands and requirements for my peace because I have to work for my peace.  It is a gift of the Holy Spirit and from Jesus, but in order for me to have it I must "Look for peace and work for it." (Isaiah 8:12-13)

In order for me to have peace, I must send out peace.  I cannot send out anger and expect to get peace.  I must send out peace and love and happiness if I want it back.  I cannot expect reap what I do not sow.  The peace must be in my own heart, not in the situation in which I find myself each day.

 What are the circumstances that must be met in order for me to be happy? 

1. All of my children must be well and go to school.
2. All of my children must be out of pain.
3. My husband must be in town.
4. I must be well and out of pain.
5. The sun must shine.
6. The house must be clean and smell like cookies.
7. I must be able to eat all the cookies I want and not gain weight.

God has given us His Peace.  We do not understand that Peace if we are not focused on it.  We do not feel that peace if we can only look at our earthly surroundings and troubles.  Someon once said to  me "Isn't it a shame when we only look at what is happening here on earth and forget the promises God has for us in Heaven?"

I wonder if God ever looks at me and just shakes His head and says, "I guess she did not learn this lesson yet.  Let's try it again."  I acted like a spoiled brat these past couple of weeks.  Granted, it is not easy dealing with my kid's physical issues along with the emotional repercusions of the pain EDS without Chuck here.  But I am not alone.  Everyone has issues that are difficult and pushes them to the edge of what they think handle, but somehow we wake up the next day realizing that we did make it through, thank God!

 

 

 

CJ~ A Mighty Sycamore

This has been a rough time for CJ, but if you would ask him, he would sound much more hopeful.

In the past 8 months, he has been diagnosed with OCD, Tourrette's, Ehlers-Danlos Syndrome, Failure to Thrive and now gastroperisis.  This is on top of the asthma and migraines that he has been struggling with for a long time.

This would probably do in most kids, but CJ is not most kids.  Under his quite exterior, is a strength and faith of a giant.  He has an anointing on him that I believe will make him a stronger person even still.

I explained strength to him using the following metaphor, and I believe this best explains him:

Do you see the big tree there?  Is it strong?  Did is survive the big winds?  Why is it strong?  Why did it survive? 

It survived and is strong now, because during storms in its life it learned to bend and sway with the wind.  When it would bend, little micro fractures occurred in the trunk.  After the storm, these fractures would heal, making the trunk even stronger because the healed part was stronger than the actual trunk.  Each time the little tree would face another storm the same thing would happen until the truck was so strong that it did not need to bend and sway with the wind.  It could stand up to the wind and survive even the most powerful of storms.

This is like what happens to people.  We all go through storms in life, no matter who you are.  You can either learn to endure the winds then heal between them or decide to fall over thinking the wind unfair.  If you embrace the wind as an opportunity to get strong then you look at troubles in life in a different way.  Instead of despair, you can hope in your troubles, because this is the time you will get stronger.
 

I see my son becoming a young man.  Even while going through all of this, he stood up to a bully at school and lived to tell about it.  He was released from treatment for his OCD, because of the progress he has made in managing his symptoms.  He even liked the Intensive Physical Therapy EDS program that he just finished, because he said it gave him ways to get out of pain.  He has also embraced the dietary rules to help him with his gatroperisis and failure to gain weight.

For so long we were not able or willing to understand the struggles that CJ had to endure.  Now that we can and are willing, CJ is actually thriving.  It is very painful as a parent to realize that your child has been suffering for a long time and nothing was done.  However, looking back over the last few years, I don't know how I would have had a chance to dig into his issues along with everything else that went on in this house.  Maybe it is just and excuse so I can live with myself.  Maybe it is the truth, I don't know.  But what I have realized is that nothing can be done about the past, but lots can be done about the future.  So I am going to focus on the future.  And the future of CJ is looking like a mighty sycamore!

Smiling Champ

Thank you for your comments and your beautiful poem.  I am so sorry for all that you have had to endure in your short life.  I admire your courage to reach out to others that are struggling and give them hope as well.  You must be an amazing person!  May God bless you each and every day and remember when you reach for Him, He will always be there.

I cannot explain why anyone would have to go through all of the hardships you have had to go through in life. But what I can say is that you have been given a heart that is able to use those experiences and bless all around you. 

There is a reason that you are still here and a I pray that God holds you in the middle of His hand for the rest of your days.  Know that there is always a purpose to all that God does.  It is not His will for anyone to be in pain, but He will make all things turn out of good for those that trust in Him.  You are a bright shining example of that promise.

God bless!

For all of you not familiar with her story, please ckick on the link enclosed in this entry.

http://www.blogger.com/profile/16312018180245012719

TV Interview on Channel 9 2012

Channel 9 Interview

So Proud!!

http://www.youtube.com/watch?v=jMJKFUGUqpQ

After You are Diagnosed with Ehlers-Danlos Syndrome

Hyper Mobility Type As an Adult

This is a set of advice that was compiled by a group of patients.  It is meant to help with issues other than the formal medical advice you will receive from various doctors and therapists.  Do not take this advice for something other than another resource you might consider as you begin to deal with EDS.

The term Zebra comes from the saying that is taught to medical students about diagnosing patients: “When you hear the sound of hooves, think of horses, not zebras.”  Also, no two zebras have the same stripes.  Each person with EDS can present with different symptoms and pain.

Medical Appointments

At the beginning you might feel that the medical appointments might never end.  If you are an adult and recently diagnosed, you might feel many different emotions such as relief that you are not crazy!  Something is wrong despite what other doctors might have said to you for years.  It is important to let all of your doctors know about the diagnosis, be prepared that some of them might not know what EDS is and give you incorrect information.  Some doctors do not like to be “educated” by their patients but if they are open, leading them to cincinnatichildrens.org where they can look up EDS written by Dr. Tinkle might help.  You also might consider finding doctors that are willing to admit that they don’t know “everything” but are willing to learn. 

One of the realizations that will come after some time is that there is no “magic” solution.  No doctor will be able to make everything better.  Since many of us “Zebras” may already have a strained relationship with the medical community, it might take some time to come to grips with the fact that yes you finally have an answer to what is wrong with you, but unfortunately, there is no cure.  Management of symptoms is the key.

Emotional Support

One of the difficult aspects of this syndrome and a late diagnosis is that friends and relatives around you might not have realized the amount of pain and discomfort you have endured prior to your diagnosis, therefore, they might find it difficult to understand why you are running to the doctor all of a sudden.  EDS can be difficult to explain and understand so give them and yourself time to digest this information.  While it is tempting to spend hours looking up EDS on the computer and do lots of research, try to bear one thing in mind- you are the same person you were prior to diagnosis.  You are not broken.  This is just the way your genes express themselves.

It also might be tempting to ignore or wish this diagnosis away.  Denial is more than a river in Egypt.  Don’t be surprised if you or your loved ones want to stay in this state for a while.  “But you have been fine all of your life!  Why are you sick now?”  Or “But you don’t look sick!”  Many people have said that getting a life long diagnosis causes people to go through a grieving process.  I know that to be true for many people, but not all. 

It is import ant to realize that you are not alone.  There are groups and websites that you can join to help you along the way.  Facebook is one resource that many Zebras have turned to for daily contact and friendship of others that understand EDS.  You can look up some of them, but here is a very short list:

*Zebras for Life

*Ehlers Danlos Awareness

*EDS Fight for a Cure

EDNF (Ehlers-Danlos National Foundation) is a group you may join that has many resources and guides to help as well.  The group is called “Team Inspire”

There are local support groups forming in several areas of the US and UK.  Check Facebook or Team Inspire for posting of meetings.

Physical Support

One of the most difficult things for some of us to grasp is that we might need some help from time to time.  You might be very used to “getting by” and dealing with pain by ignoring it.  There is a legitimate reason for your pain and you might consider paying attention to your body.  There are many ways to one thing, for instance, laundry.  You might consider using a reaching tool to get the clothes out of the washer or dryer.  A different idea might be using a basket on wheels to carry the clothes to the machines.  Better yet a way to do laundry might be getting a machine that washes and dries the clothes all in one thus eliminating the need to deal with wet clothes.  Occupational therapists can be a great resource to help think of ways to help protect your joints.

There is a fine line between bracing and keeping strong.  You might not have realized that all of these years you have been dislocating or subluxing joints.  For some people with EDS, it actually might feel good to do so.  Now it is time to protect those joints from damage that will manifest itself later.  There are many types of braces that can keep the joints in place and a physical therapist or OT can assist with specific recommendations.  Hiring an OT to come to your house can also be helpful to find ways to change the physical environment to protect your joints or conserve your energy.

Resources

Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome  by Dr Brad Tinkle

Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome  by Dr Brad Tinkle

Hypermobility, Fibromyalgia and Chronic Pain  Alan J Hakim MB FRCP (Editor), Rosemary J. Keer MSc MCSP MACP (Editor), Rodney Grahame CBE MD FRCP FACP (Editor)

Ehlers Danlos National Foundation

EDS Cares Network

Center for Ehlers Danlos Syndrome Alliance

Cincinnati Children’s Hospital~ Special Needs Directory

Feel free to contact me if you would like to learn about local support group meetings:

caschulze@cinci.rr.com

I Give Up

But if you see that the job is too big for you, that it's something only God can do, and you trust him to do it-you could never do it for yourself no matter how hard and long you worked-well, that trusting-him-to-do-it is what gets you set right with God, by God.  Sheer gift. (Message Bible Romans 4:5)

I realized this truth as I lay in a crumpled mess on the floor.  It was after a day of doctor appointments that seemed to take a microscope and examine every decision I have made as a mother and called it wrong.  It was after praying with my little one and asking, yet again for relief from pain.

"I can't do it!  I can't handle their pain because I am useless to do anything about it!"  I felt I had done some many things wrong.  Here now all of my children were on some sort of medication to help them with their anxiety.  Are we not a Christian Family?  Isn't faith in Christ supposed to take care of at least the worry?  My anger bubbled over into a tantrum for all to see.

The next day I saw Joyce Meyer imitating me.  She was on stage acting just like I had acted the night before, "Oh God I can't do it anymore.  I just quit!  It is too much!"  Her answer from the Holy Spirit was "Finally I can get to work!"

I have been so busy doing all the things that I should have left to God to handle.  I am not in he business of healing, but He is.  I cannot quite anxiety, but He can.  I was not a failure, I just was not allowing God to do His job.  He was the perfect gentleman and let me try.  When I gave up, He got to work.

I know I have written on the is subject before regarding not worshiping the medical community as idols.  Not putting all of our trust in another man made from dust instead of the one that made us all.  Apparently I am a slow learner and I forget.

It is very difficult to parent children with chronic pain.  It is a parents nightmare to feel helpless as your child suffers.  But placing that child in the arms of God, is the best we can do.  Trust in Him that He will work our all things for good for those who love him. 

What is Ehlers-Danlos Syndrome

Weather the Storm

I am overwhelmed again by the Love that God has for me and my family.  When we love others, God abides.  It is so hard right now to feel anything but pure joy that there is a God and He loves me, but just 24 hours ago it was difficult to remember that fact.  I was reminded in a passage written in Forward Day By Day meditations for Monday June 18th:

The temptation pain brings is to withdraw in self-pity, to a cynicism which becomes impenetrable and sovereign. Flannery O’Conner writes that our age “at its worst…has domesticated despair and learned to live with it happily.”

But no. Here’s the turn: “I will remember the works of the Lord, and call to mind your wonders from of old.” Can you begin to remember how good God has been to you? Remember. Even in the swirling terror of a thunderstorm God is working the night shift. Whether we can see him in the dark or not, he can see us. He is leading us through the sea, making a path through the great waters—silently transforming us in the pain, even though his footsteps are not seen. Praise him!

I was in the middle of pain that made me panic.  No relief in sight; thinking that if I went to hell this is what it would feel like and never end.  Through that storm God helped me remember the blessings that are all around me.  Blessings that drip from the ceiling!  So many I cannot begin to count them.  Just to give you and example of some of today's blessings:  Our church family is bringing dinner; the girl's helper from the county is able to stay longer since Church is at work; a call out of the blue from my father helped resolve a problem with getting to doctor appts for the kids tomorrow, my son stopped in my room to tell me he loves me; Friday a cleaning crew is coming to our house which is provided by friends that moved to Switzerland!  It goes on and on.

If He is there in the blessings He is even more present in the storm.  God give me the faith and endurance to weather this storm.

May peace and blessings be with all that have prayed for us and helped support us.  Truly there is nothing in our lives that cannot be directly traced to God grace.

Where is the Outrage?

I just helped Erica write a letter to Mrs. Obama.  She wants the most powerful mom to help her out of pain.  She explained that her life was in danger and she is in pain every day.  What I think does not make sense to her is the fact that the world sits back and does nothing to get rid of Ehlers-Danlos.  Where is the outrage?!! She is a little girl and she is not alone.

She said that she was inspired by the story of Esther.  She was in a play last week about how one woman saved a nation.  She is one kid who wants to save her family and others like her.  Please pray that Mrs. Obama responds.

Meditations on Psalm 55

Psalm 55 speaks the words of my heart:

"I am frightened inside;
the terror of death has attacked me.
I am scared and shaking,
and terror grips me.
I said, 'I wish I had wings like a dove.
Then I would fly away and rest.
I would wander far away
and stay in the desert.
I would hurry to my place of escape,
far away from the wind and the storm.

But later in the same psalm, God promises this:

"Give your worries to the Lord,
and He will take care of you."

I give you my worries Lord.  They are too big and difficult for me.  Take my worries about my pain after surgery without pain medication.  Take my worries about my children and husband during my recuperation.  You need to help me in a big way, realize that Erica is fine and pursuing other medical opinions is futile.  The worry about her having a stroke needs to set with you, not me.  Take that heartbreak I see in my children's eyes, though they don't speak about it.  Take my worry about how my body with react on the operating table.  Help me be the kind of mom that CJ needs as he struggles with his anxieties.  Give me the words to say to him that shows love, yet boundaries.  God, you can also take my frustration over my loss of control.  I need a dose of understanding and clarity in dealing with Elizabeth's recent maturity.  Help me keep her safe.  You are in control, not me.  Let me find Joy in the midst of chaos.  Take away my confused thoughts.  Give me discernment and faith to do only those things You tell me to do.  Let me be a mirror that reflects the light of your love in all I do.  Lord, you know that I cannot do these things on my own.  Help me cast off my desires and wants and pick up your mantel.

God thank you so much for the blessings in my life.  Please help me to not look at my blessings and curses.  I thank you for a husband that is kind, understanding, hard working, even tempered, smart, caring, and the best person I know.  Blessed am I to have 3 amazing children.  Help me to be the best mom possible, but not take on things that are not in Your plan.  I thank you for the prayers that are said for our family.  Not enough thanks could be said for the many people that worked to modify our house.  It is a constant reminder of Your supply. I thank you for the Driscoll Family.  Even though they live in Switzerland, they still send money to a cleaning company so our house is cleaned once every two weeks!  You have shown so much of Your love to us that it is a sin to think that You would not answer our prayers now. 

I am not God (thank God).  I don't understand His ways, but He does promise that He will work all things out for good for those that love Him.  We receive your healing, protection, clarity, peace and joy only through Your grace.  Thank you Abba!

Misconceptions

I have a bone to pick with Hollywood.  Just because a kid is sick, it does not make them an angel.  They do not sit around with a smile on their face.  In my experience, they do complain, a lot and I am not saying that is bad.  I do it too and everyone would do it.  Pain does not play fair.  Health is fleeting and is given to those that do not appreciate it.

Out of the mouths of babes…

I want to die!!

Why can’t I just die??

There is not pain in Heaven, right?

Why can’t I just die?

Please kill me!!

You are hurting me!!

You don’t love me because if you did, you would not put me through this!

What do you mean, “The doctors don’t know?”

I hate all of you!!

Leave me alone!

Don’t touch me!!

Take this IV out!!

I don’t care if I am scaring the other children!!

I don’t like this!!

I hurt EVERYWHERE!!

I want to go home!!

Why can’t I go home!!

Don’t yell at me, I am hurting!!

Don’t you care that I am hurting?

You never loved me!!

SOMEONE KILL ME!!

I want a doctor so I can punch them!!

Don’t cry Mommy

I’m sorry

I am just hurting

I want to go home

Why did the doctors not find anything?

I just want to get better

I just want to be a normal kid

I just want to stop hurting

Why do I have to hurt?

My attempt at poetry

Hey…Hello in there…

I have no answers to give

I want to solve the impossible puzzle

I am walking through a maze that leads to nowhere

Now what?

Where do I go?

I scream this in my head

Where do I go?

What do I need to learn?

What do I need to do?

Who do I need to ask?

I am asking you but you are not telling

I give it to you and you and not responding

You send me blessing after blessing

We are not cursed

We are blessed

But……

Oh, was this like the Israelites?

Am I complaining for meat when I have eaten of Heaven’s bread?

Should today be enough?

No tomorrow

Just today

How do you move on?
Just today

No planning

No dreams?

Different dreams, but aren’t they nightmares?

No, keep your heart light and looking for the light

Look to the light in all situations and you will be blessed

No answers but love

Love

Love

Love

The Storm Rages On...

Just when I thought the storm was over, we were hit by lighting!!

It all started a few weeks ago when Erica started to complain that when she looked up, her "eyes would go black".  She also said that she was very dizzy after these episodes.  I took her to her regular doctor and he thought it was a virus.  When it continued I sent out an email to her doctors explaining her symptoms.  A few days later we had a regularly scheduled appointment with the geneticist.  He said that he thought that her skull was starting to slip from the base of her spine.  This is causing the bones to either impinge the arteries going into the brain or hitting against her brain stem.

I cannot believe we are in this position AGAIN!!  I thought when the doctors fused C1-2 in her neck, that she was safe.  Apparently this is extremely rare.  But to be honest, no one knows what to expect because she was one of the first to be fused at C1-2 and one of the youngest.

The best scenario would be that it was just hitting against the arteries.  Best scenario, she could have a stroke.  Really?!!  Come on, REALLY??!!  A stroke?  the worst case scenario obviously is death because she is hitting her brain stem and the brain stem is what controls things like breathing and heart beat.  What the doctors are saying to us is there is a possibility that if she moves her head in the wrong direction, she could die immediately.  Wow!!

How do you go on from there?  How to you just sit and joke with her?  She is wearing her neck brace and hating every minute of it.  Do I tell her how dangerous it is to go without it and what could happen as she is trying to negotiate with me?  Where is this in the book "What to Expect When you have a Child"?

Right now we have several doctors doing what they can to think of the best way to keep her safe.  One doctor is calling other doctors from around the country to find someone that has experience in dealing with cases like this.  She will be seen locally here in Cincinnati, but also up at the Cleveland Clinic.  But this has been going on for weeks and only her regular doctor, the geneticist and a doctor outside of the Children's Hospital.  If she simply had a broken arm, she would have been seen and on the way to healing.  When it comes to her brain and we have to wait around!!  God is calling me to wait upon Him, so I cannot argue with that.

Erica went for a CT scan the other day.  It took over 45 min to convince her to get onto the table for the test.  CT scans are very quick, but she had it in her mind that she did not want to do it.  Through the screaming and crying we all discovered that she is scared to death to find out the results.  To be honest, I feel the same way.  I cannot imagine going through something like this as an adult, let alone an 8 year old going through this for a second time.  She does not trust anyone at this point.  She does not understand why the adults around her don't know what to do.  When her eyes go black, she gets very frighten.  When Erica self-limits her activities and decided to use a cane on her own because she is afraid of falling you know this is a miracle in and of itself!


All things aside, I know that I know that I know that she will end up okay in the end.  People say I have a lot of faith.  I am not sure what that means other than I have experience to show that God will never leave us.  He has kept every promise and fulfilled every need just as we need it and sometimes even more than we could have ever expected.  I would be a fool to stop believing Him now.

The hard part is getting to that "okay" status.  The school called and asked that we agree to put her on home instruction.  I understand their point and to be honest, if I were in their shoes, I would do the same thing.

We are so blessed to have so many of you that have prayed and supported us over the years.  I believe that God has listened to your prayers and His blessings have rained down upon us.  All I have to do is to sit in my kitchen!!  Please continue to pray, please for CJ and Elizabeth and especially Chuck.  This is very difficult for all of us.

"Mommy, I am WAY under dressed for this funeral!"

Do you every get to a place and think to yourself, "How in the world did I get here?"  I found myself asking that question as I was standing at my grandmother's funeral service rocking my mom jeans and trying to answer Erica's question as she was taking off the ER bracelet off of her wrist.

We had another one of those days a couple of weeks ago.  My son had hurt his hand on the first day of fall baseball practice.  Ball against finger- ball won.  He broke it right on the growth plate, of course, and had to go in for a cast.  This was scheduled for the morning of my grandmother's funeral.  She had died the weekend before, peacefully.  It was very hard on the kids as she lived close and they saw her quite a bit.  This was their first funeral that they lost someone so close.

Anyway, I was driving CJ back to school and heading home when I got a call from Chuck that Erica's school called and said that her arm was hurting, had electric shocks down to her fingers and she could not put her shoulder back in on her own.  I told him that I was close to the school and I would drop by to "pop her back in place."  (Why do I think it will be just and easy fix?)  I got to the school and realized that I could slide her shoulder back in place easily, however, it would not stay in place.  So I called the orthopedic surgeon and said, "I can get her shoulder to slide back in place, but it will not stay there."  (Remember these words, you will see them again.  It is called foreshadowing, I think, in literary terms).  I was told to bring her down to the ER to the main campus right away.

Okay, so we are off to the worst place we can think of in a 300 mile radius, the emergency room.  Not that this particular ER is bad, it is just all ERs are stressful for everyone, but especially hard for kids with a rare orthopedic syndrome.  We call it the "Horse and Pony Show" because the residents, med students and such want to come in and see the cool party tricks she can do because of  the EDS.

Erica endures the poking, prodding, questioning and x-ray pretty well.  The chief of the ER comes in who happens to be a friend of our regular pediatrician.  He takes one look at her and we were shown the forms for permission for sedation so they can put her shoulder back in place.  The next minute this very young ortho resident comes in and says that she needs another x-ray.

The x-ray he orders is one that required her to put her shoulder in a position that she thought would hurt her.  The x-ray techs did not help by pushing her and yelling in her ear.  I stopped the whole thing saying that her pain was not addressed and until she got something for her pain, we would not proceed.  The medical student was trying to hurry her along so she would not miss her great-grandmother's funeral so he runs out of the room to tell the head of the ER about the resident.  I guess they have a big fight over what to do, but the ortho resident is now calling the shots.  I just love it when a resident pokes his nose in where a 40 yr vet of the ER has it under control!

The doctors give Erica her medicine and the ortho resident comes back in to explain that the x-ray is not that big of a deal.  He promised that he would go in and talk to the x-ray techs on how to do it.  Well, he lied, of course, and she and the techs screamed at each other until the pictures were taken. 

After 6 HOURS this is what the orthopedic resident said to me, "I can get her shoulder to slide back in place, but it will not stay there."  REALLY?  "What are you going to do about it?"  "Nothing, I can't do anything in the ER."  You mean to tell me that after 6 hours, potentially missing my grandmother's funeral, painful x-rays, screaming and all the other fun we have had and this is all you can offer her?  I told you this hours ago!!!  I thought the top of my head was going to come off!!!

"Can't you even tape the shoulder in place so she can get out of pain at least temporarily?"  He said he didn't know how to do that.  Don't they have guys without med school educations that do that next to the football field every Sunday?  "Yeah, but I don't know how."

Fabulous!!! Out the door with a girl that wants to rip off her arm it hurts so badly to try to make it to at least a little of the funeral.  I was supposed to read one of the scripture verses during the service for her and I am in jeans, no make-up and I was pretty sure I remembered to brush my hair this morning...not so sure about my teeth.  I can't remember the last time I took a shower because of course I would have time before the funeral. 


We get there at least 15 minutes into the service.  "Mommy, I am WAY under dressed for this funeral!" says Erica as we take our seats.  "I know Sweetie, so am I, but Nana doesn't care anymore."

"Hope is a Dangerous Thing"

Elizabeth made it through the surgery and is recovering well.  She is less than 2 weeks out and already running!  Her pain level is much lower than before the surgery.  We saw pictures of what her hip looked like inside and it was a mess.  The area that was filled with nerve endings was inflamed and frayed.  The surgeon cauterized and shaved the tendon thus destroying the painful area. 

All of this occurred up at the Cleveland Clinic.  This place is huge!  There are 3 hotels on the at least 29 block campus.  In one area it looked like a mall with shops and restaurants.  The day before surgery I think we walked the entire place trying to get all the tests completed so she could be cleared for surgery.

Elizabeth did stay over night after the surgery and I am very happy she did so.  She spent most of the day after the surgery sick to her stomach.  The surgeon said that he could not remember the last time he had an arthroscopic patient stay over the night, but it would have been a nightmare with 3 kids in the car and a 6 hour drive and having to stop while she got sick on the way.

The best thing about the surgery is that it has given Elizabeth hope.  She now understands that pain is not a permanent part of her life.  Sure, there will probably be times that she has pain, but it is not a constant.  "Hope is a very dangerous thing!" (I can't remember the movie, but I like the quote)

Elizabeth is Human

We are now a week away from Elizabeth's hip surgery.  She is very afraid and is having difficulty expressing it.  I think she thinks that she needs to be strong all of the time.  We compliment her on how strong she is and even said that she was, "freakishly sane" for a 13 year old.  She apparently is so upset by her surgery that she developed a "conversion disorder".  This disorder is apparently common amongst people that have chronic illness.  When the heart cannot express what it is feeling, those feelings are converted into a physical symptom, such as numbness, inability to talk or hear that otherwise has no physical reason for the symptom.  The people with conversion disorders are unaware that the symptoms are not real.

Elizabeth is so strong and does not show her emotions freely to anyone.  I think she is afraid to let herself go because she worries about everyone.  She told us that she was afraid to express her sadness or fear because it would "make everyone feel badly." 

I feel so badly for her right now that we have such an atmosphere in our family.  I feel mostly to blame as it was my inherited disease and I am the one that I think she wants to protect the most.  I also proclaim my faith and I think she needs to do the same.  But her faith is different than mine and it needs to be developed over time.  We reminded her that she is human and it is okay to cry and be scared.  I think I cried every day when I was 13 and I didn't have nearly the stuff going on that she does!

It is really hard to know what to do in this situation so we are turning to a psychologist for this one.  Of course the really good doctors do not accept insurance.  Not that money should deter us from helping her, but it is a big pill to swallow.

I do hope that she is able to find some peace through this process and maybe everyone could be helped. 

Also, this is a very sensitive subject, so please do not mention it in front of the kids. Thanks!

Erica is Doing Better

Erica is doing a little better.  I don't think she realizes it, but she is not complaining as much and she is not so dramatic at bed time.  She is also doing more for a long time.  I think this is directly linked to prayer.  I thank everyone who prayed for her.  I just have to convince her that she is doing better and to remember this time.  Do I believe this is a complete healing? No.  I had to come into her bedroom last night because she was in pain.  She does not even remember me rubbing her back.  I hope this is the start of a good period for her.

My Yoke is Easy...

When is this all going to end?!  We have lived in crisis mode for so long, almost 3 years, and I cannot take it!  Right now my grandma is in the hospital with staff and MRSA. She had to have emergency surgery a couple of days ago to get the infection out of her knee.  Being 91 with diabetes, I do wonder what God's will is for her.

My mom has not felt well enough to leave the house lately because of a major headache and sinus infection.  She does not feel well enough to even go to the grocery store.

Elizabeth is unable to walk because her hip is "out" again.  The doctors think that the tendon in her hip that is torn gets caught between the bones.  It usually takes a couple of days for this to resolve for her.  To top it off, she broke her ankle on that side.  She is going to have surgery at the Cleveland Clinic at the end of July for her hip.  Hopefully this will be the beginning of the end of her hip problems.

Erica continues to have back pain.  At night her pain has been so bad that she begs to go to the hospital or heaven.  We are still waiting to hear about her back.  She has had testing done and a visit with the neurosurgeon and still no news on if she needs to have surgery for a tethered cord.  If she does have this condition, then she will undergo a minor surgery that could get her out of pain.

I have been in so much pain that I cry every morning getting out of bed.  My lower back is so bad that I cannot bend over for about 2 hours.  The medicine I take kicks in and I can finally get around.  The stress I am sure does not help.  I really need to get over it.

While I was praying for Erica I got so upset about the outcome that I felt convicted by God.  "I have plans to prosper you not to harm you, plans to give you hope and a future."  (Jeremiah 29:11)  God will be with us no matter what the outcome will be, surgery or no surgery. 

I praise God that he continues to bless us as we are in this storm.  Just as I feel like my strength is giving out, I am reminded that it is not my strength, but God's that gets us through.  In today's Gospel, "My yoke is easy and my burden is light."  Please help me lay down my burdens and take up the yoke of Jesus.

Give me Strength

My anxiety has been so high, sometimes I feel like it is hard to breath.  We are waiting to hear when Elizabeth's surgery will take place up at the Cleveland Clinic.  All while Erica has been going through testing to see if she has a tethered cord.  My mom has not been feeling well and my grandmother is hurt and not doing well either.  I have been in so much pain when I wake up my back hurts so bad that I have to take medicine before I can move.

Please don't take this as I am unappreciative of all the blessings that have rained down upon us.  I know that it is not right to be anxious right now as God has shown that He is right here with us, but I cannot grab a hold of that hope right now.  I am not sure why while I know things on such a high spiritual level, yet these struggles still bring me to my knees doubting everything I believe.

I guess I would love to see my kids out of pain, but I am not sure that this is God's will.  How do I deal with this reality?  Am I able to praise Him while my kids are in agony?  I do praise Him because I know that in the end all things will turn out for the best.  All things will turn out to glorify God.  Please give me the peace and strength to handle what he gives us.  Please strengthen my children and family as well.