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.