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.