The ceiling didn’t cave in

So, I visited a church yesterday. GASP! I know, I thought the ceiling would cave in as well.

We were invited by the mom of a friend of my son (he is 13). He had his friend come and stay overnight on Saturday, and so we took him to his church on Sunday and my son and I stayed for the Sunday School and service.

I have to be honest…. I’m skeptical. With good reason I know. Those of you who have followed this blog from the beginning know we don’t have a good track record with churches.

BUT… my son (who hasn’t been to church in 4 years) loved the youth pastor/sunday school teacher. He wasn’t so thrilled with sitting in the service (and to honest, it was the same for me).

They said all of the right things. Relationship, authenticity, grace, love…. we will go back with the family and give it another try to see. It is a small church.

Maybe the season of decompression is finally coming to a close? Or maybe it is just a false alarm, and we will be quickly realizing why we haven’t been to church in years.

One thing that worries me… I’m realizing I have some bitterness. One of the people who attends this church was the principal of the Christian School that nearly destroyed my son 4 years ago. He was bullied, and not believed. He was punished when he stood up for himself. We saw our sweet and lovable little boy regress and fall apart throughout that year. It has taken YEARS to put the pieces back together and for our boy to begin to be himself again after that travesty. It is one of the reasons I have very little trust in Christians when it comes to my children.

I hate the fact I’m carrying around unforgiveness (I hadn’t thought of this guy for a long time). Hearing his name… didn’t see him, but heard he attends… made a lot of it come back up, and I have so much more anger about someone hurting my child than I would if it were me.

Of course, these days I’m MUCH more outspoken than I was back then. So I just might get the chance to tell him how his actions affected our child and our family. Or, after getting to know him more, I might be able to just let it go. Hopefully whatever I do will be the right thing for everyone, and not something that will cause more hurt or damage. Sigh.

HW

Churchless

We are still churchless. It has been about 4 years now since we have regularly attended a church. We have visited our old church several times now due to necessity. Once our girls were in a dance program there. And the other time was when our oldest daughter was baptized there.

I have to say, it still gives me a stomach ache to walk in. I feel like a PTSD survivor, ready to curl into the fetal position on the floor. I wait for the bomb to drop, and I can’t wait to get out of there.

I can see after this that unless something were to drastically change (or God does some miraculous healing) that we couldn’t go there again. Even though the pastor who inflicted the abuse on us is gone, and his wife (ex-wife now I guess) is not a regular attendee, that the fear (I don’t know if that is the correct word for what we are feeling) remains. I don’t know how to work through that or get rid of it.

In the meantime, we are considering visiting other churches in the area to find something for our family. I would like us to attend church as a family again, and especially for my children to have a SAFE environment to grow and learn in.

For the New Year I suppose that is my thought. So I am praying for us to find the right fit for us in a church. However, I don’t feel optimistic about things.

As the saying goes, “Even if we find the perfect church we would probably ruin it.” I think when we carry hurts, doubts and fears into a new situation we taint it immediately. We wait on the edge of our seat for the new pastor to say something we can object to, or to show us that he is untrustworthy. It can take years to have trust again, and yet… people are people, and they will let you down. If you are still carrying wounds from the past, that let-down will be blown all out of proportion as it brings up old junk that is still there.

I really don’t want to walk into a new church with all of the doubts, fears, and criticisms that come out of being spiritually abused. I don’t know if I am ready to try again or not, but the guilt from not having our children in church is getting worse.

Jesus help us.
HW

Could it be (late stage, neurological) Lyme’s Disease?

I’ve been sick for about 5 years now. I don’t mean not feeling well… I mean down and out. Done. Toast. I could barely get out of bed for a year, could hardly walk due to muscle weakness and tremors, and I was losing more and more physical and mental function all of the time. I started losing hair. I started having trouble talking. It took immense effort not to slur my words. I forgot everything, so I’d have to write it all down. Then I’d forget to look for the reminders. It was hard to watch TV, read, I couldn’t read out loud at all. Face to face and phone communication became very difficult because I couldn’t think and talk, so I began to email everyone so that I had time to gather what I wanted to say. I had to withdraw from everything. I saved every tiny bit of energy for my family just to be sure they got the basics (my husband doesn’t drive). When I did have an upswing it never lasted long. One of the symptoms was exercise intolerance. All it took was overdoing it a bit and I would crash right back into the crushing fatigue, pain, and neurological haze.

They tested me for all kinds of diseases. MS, Tumors, Lupus, even Lyme’s. Nothing was found except some mild sleep apnea. The neurologist finally decided it was a case of Guillian Barre but that I had recovered (?) enough that they couldn’t diagnose it with testing, and sent me home. I even visited Cleveland Clinic in an effort to find out what in the world was wrong with me. I thought it was very possible I was dying. Still, nothing was found. I thought for a short while I was better when I was diagnosed with Insulin Resistance and I had an upswing with treatment, but it wasn’t enough to give me back my life…. and new symptoms began to emerge. Arthritis in my knees, and my jaw was getting so painful and stiff I could barely use it.

Then, in my own research, I started looking into Lyme’s disease as a possibility. It can mimic many diseases. So I visited a doctor about 3 hours away from me that treats many Lyme’s patients. After several tests (which are notoriously unreliable) I am still testing negative. But….

He treated me anyway. Apparently when you have long term Lyme’s Disease and you’ve been ill for years, the tests can all be negative. Especially when it has become late stage and neurological. I’ve heard of Lyme’s disease, but since I had tested negative, it took me a long while before I began visiting a specialist to investigate. It is possible that it has always been Lyme’s, even since I started having fibromyalgia as a teenager. The past 5 years have been hell, but the past 25 have been filled with pain and fatigue as well, just not as bad. I don’t think I will ever really be able to sort it all out. I’m having elevated RA levels as well, so some of the damage could be permanent. It also means that this could be RA as a diagnosis, but if it is, I’m still responding to treatment.

I am not 100% yet…. maybe 60%? But I am doing better! I have had NO life the past 5 years, out of necessity, but I am beginning to be able to do some things again. I am discovering that I will have to start over getting a life again since most people have disappeared, but that is better than being dead, right? And I’m not quite ready to add a lot of outside activities yet. I have been able to have my sister and her family once without wanting to cry because I was so tired I wanted to lay down, not being able to concentrate on what was being said, not being able to say the things I wanted to or organize my thoughts enough to hold a conversation, and worst of all coming across as unwelcoming or not wanting them there.

I nearly cried a few nights ago when I read something out loud to my husband without misreading words, stumbling over my words, and having to mumble because it was too much effort to use my voice and too painful to open my mouth. That is something I haven’t been able to do for a long time (and I’m an avid reader who could read aloud with no effort before). It sounds like such a little thing, but it was so HUGE for me.

I’ve been on one antibiotic for 4 months now. A second was just added last week. I cannot exercise yet, but I can drive my kids to their appointments and practices. I can research the Autism that two of them were just diagnosed with. I can go to the meetings, and while I still struggle with the face to face communication, I don’t sound like as much of a bumbling idiot now. I can drive to the specialist which at first seemed like it would be impossible to go so far every month without badly regressing. Yesterday I spent the day on the couch because I was feeling very tired, and today will probably need to be similar since I’m having trouble keeping my eyes open, but it will take time to build some strength back up. I still need well over the normal amount of sleep to function well. I still get confused a lot, and have to stop and try and think about what I was doing, what I want to do, etc. But I will take ANY progress as hope that life will improve and my family can have me back. The internal medicine specialist talks to me about “when you are cured” which is something I had really lost hope would never happen.

I’m hopeful this is the answer for me, since there have been no answers for so long. I hesitate even writing this, because I fear this is a temporary rally that is just lasting longer than those in the past… but the glimmer of hope is there.

Love and hope!
HW

Sometimes

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.”

~ Unknow author

Life, Asperger’s, and School Budget Cuts

So my 2 kids were diagnosed with Autism Spectrum Disorder over the summer.   My 12-year-old son was diagnosed with Asperger’s Syndrome.  My 7-year-old daughter was diagnosed with PDD, Asperger’s variety.  The difference is slight… it has something to do with the speech delay that the little one had.

I have spent the past weeks pouring over information.  Reading books, surfing the web, calling the schools, becoming increasingly frustrated at how difficult it is to find services, support groups, medical and dental practitioners who are Autism friendly….

I’ve had some big “AHA” moments, finally understanding why we have seen our children struggle so much in certain areas such as social interaction and sensory overload.    Their struggles make so much more sense now.  I find it frustrating that my 12-year-old wasn’t diagnosed sooner, but those teachers who never said a word are now telling me, “I knew it!”  If they only knew how angry it makes me that they saw something and never mentioned it.  If they only knew how important early intervention is and how much progress we could have made in the last several years rather than worrying, wondering, and hoping our son would be able to find some friends, act like his peers, and “grow out of” his depression and anxiety issues.

But I’m very glad as he begins life at middle school this year he will eventually receive some help.  Yes, eventually.  Despite our diagnosis, the school district has 60 days to complete an evaluation of him to determine the areas he needs help in.  ASK ME!  ASK the neurologist who diagnosed him, and start helping him already!  Geesh!  But we will wait as patiently as possible while the school conducts their own study of our child while he (unnecessarily) continues to struggle and we will wonder what they will eventually decide and hopefully there will be a staff member who knows how to best help him (unfortunately not with the transition to middle school, they will be too late for that in spite of my repeated requests over the summer).

At least my 7-year-old will have the earlier services that she needs, after the 60 day evaluation.  Oh, wait… the school district budget tanked this year.  They have taken away the Autism Support Teacher that used to be assigned to our school.  So instead they will be assigning her to a Learning Support Teacher.  I have nothing against Learning Support Teachers.  I was one (before kids).  They are wonderful people who do amazing things to help children with learning difficulties!   But my girl has no learning difficulties.  She has social/emotional/anxiety difficulties.  She has sensory issues.  She has Auditory Processing problems.  The Learning Support teacher has a lot of children with Learning Disabilities to instruct… how exactly is she supposed to talk my child down from a melt-down?  Prepare a visual schedule, and let her know of changes for the day so her anxiety doesn’t rise due to an unexpected change in the day?  Sit down and work on social skills and discuss and instruct her when she has difficulties with a friend?  How will she drop everything and head to the classroom where my daughter is overloaded, stressed, and crying or even screaming because she can no longer handle what is happening?

I’m hoping none of the above will happen.  And if it does, I’m hopeful her teacher will be well able to handle it.  But the teacher shouldn’t have to.  There should be a well-trained educator in the building who knows exactly what to do.  There needs to be someone providing a “safe place” for children who have Autism and are overwhelmed.  A place where they can have quiet and calm down and then learn from the situation because someone understands what they need, and provides it.

Am I asking too much?  Well… for years there has been a teacher who could provide this support to Autistic children who are mainstreamed (educated in the regular classroom with support where they need it).    I want that for my child also.  I want her to have full access to that free and appropriate public education (you know… the one we pay for with our taxes?) that her autism gets in the way of.   And they are legally obligated to provide that, but even though they are “legally” providing it with a Learning Support teacher acting as Autism Support, I don’t see how it will work in “reality.”

So now that the district has less money and ended up in financial trouble, we get less help.  Sports continue on as usual.  The gifted program still has teachers and they bus my older girl once a week for a day with the smart kids.  The office is fully staffed.  The administration will still receive their paychecks and still have their secretaries.  But over 30 teachers, some of them special education teachers, have lost their jobs because our school district decided that our children’s education takes second place to other activities and luxuries.  They have made many (probably much-needed) cuts in supplies, computer software changes, busing, but none so horrid and ridiculous as our teachers.

I guess I’m silly for thinking providing a quality education to our children should come before other “extra” things that we can offer.

Stepping off of my soap-box for today.

HW

 

My children whom I love

I have 4 children. 2 of them were diagnosed with Asperger’s syndrome… a mild form… last Thursday. I’m overwhelmed, but it isn’t a diagnosis that scares me. It breaks my heart for how difficult things may be for them. I adore both of them so much. I want life to be easy for my kids, but it isn’t going to be. Even without Asperger’s our children will face trials and sorrows in this world. All 4 of my children will face something in life that isn’t easy. But as a mom, I really wish I could spare them all the hurts and traumas and sadness, but I cannot save them from everything.

Praise God he is good and just and merciful.

Never apologize for what you feel. It’s like saying sorry for being real

I love this saying I found today (I don’t know who said it). I wonder why people are always putting down how they or others feel. And why we often apologize for how we feel. Well, at least I do.  So here is what I’ve been mulling over today.

How many of us feel guilt for our emotions? Well… we know our emotions can mislead us. I know they can be totally “out of place” for the situation.  But that doesn’t make them less valid or real to the person feeling them.

Emotions are normal.  If they are seriously out of proportion to what is happening, there may be a need for help.  Counseling, therapy, etc…  but not because of the emotions themselves.  Just like any part of our body, out of control emotions can indicate something is wrong.  Just like pain in the body indicated something is wrong and we need to see a doctor.  Or they can just be telling us what we already know… that we have been hurt.

I have learned one thing in life, and that is that the way to the other side of the pain is through it.  If we cannot face the pain, how can we get past it?  In the case of deep trauma and pain it is very helpful and can be important to have someone help you through this, such as a counselor or pastor or therapist.

As Christians we seem to think we are wrong to have emotions. Because, of course, God would never ever have any feelings!  Oh wait, in the Bible we see that God has feelings. We are made in the image of God.   Should we be so surprised that we have emotions?  In fact many feelings are mentioned in scripture.

I think it is far more important to ACT correctly, despite our emotions.  Emotions aren’t good or bad.  How we ACT on them, however, can be positive or sinful.  Acknowledge we feel it, work through it if we have to, and do the right thing anyway.  And that is not always easy!  We can either hide how we feel, or explode all over someone else…. or we can handle our emotions in a way that we and others can find healing, express them in a constructive way, own them, bring them before God, and so on.

If emotions are wrong, why does Psalm 34:18 say that God is close to the brokenhearted?  Jesus makes a similar statement.  The Psalms are full of emotions and yet David is called a man after God’s own heart.

Even anger is not condemned, only the way we act in our anger is mentioned.   In Ephesians 4:26, the Bible says, “In your anger, do not sin,”  God Himself gets angry. (See Exodus 4:14, Leviticus 26:28, and Numbers 11:33 )  However, God is slow to anger as we know through Psalm 103:8.    I really want to become slow to anger myself.  One of the ways my emotions have been expressing themselves as they begin to come out is through anger.

Sadness isn’t wrong.  David and Job pour out their  sorrow before the Lord.  Jesus wept (John 11:35),  and even sweat blood (Luke 22:44)  Expressing our emotions can be quite appropriate and especially healing.  Those who mourn are listed as blessed in the Sermon on the Mount and promised comfort.  God collects our tears in a bottle! Ps. 56:8.

Spending time on the positive emotions is encouraged.  Philipians 4:8 “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”  I know I feel better when I look at a beautiful sunset, hear a story about someone helping another less fortunate, and so on.

Many of us have stuffed our emotions so far down in an effort never to feel anything.  Even though I don’t believe that is healthy, or the way to deal with emotions, I haven’t always believed that way.  I used to think there was something wrong with me because I felt a certain way(in fact, I thought there was something wrong with me all-around), so I put my emotions into a box.  The problem was, that box eventually exploded into all sorts of trouble.  I don’t cry often, but a good cry every once in awhile is very cleansing… and there are healthy ways to express our emotions.

Old habits die hard.  I still tend to dismiss my emotions, or even apologize for them.    I still tend to stuff them into the box.  But more and more often I acknowledge them.  I try to validate them, so I can deal with my own issues and move forward with what I hope is the correct action.

It is a process that has taken me a long, long time to even begin to address.  I so very much wish I could accept and even embrace my human emotions, rather than dread and dismiss them.   I’ve been very broken by some situations in my life, and was taught to try to not feel by people who didn’t believe emotion had a place in anyone’s life.  But that was wrong, and as I work to heal, I also need to put emotions into their rightful place in my life.

One step at a time…

What about you?

The search for a diagnosis continues.

My neurologist who was working so hard last winter to get me a diagnosis moved away, and I haven’t found a new specialist to help with that yet. I did visit an internal medicine/ lyme’s doctor today. He is going to do some testing, but I had an elevated RF and sed rate. Who knows that that means, but time will tell I guess.

I need to find a new diagnostician until this gets figured out. As I’ve whined before… I get so tired of being sick and tired!

HW

self deception

It is frightening, the human propensity towards self deception. And even more so how we seperate ourselves from all guilt and responsibility so long as we get what we think we have to have at all costs.

In the end it isn’t worth the expense of the consequences and yet we still try to avoid any blame rather than face up to the fact that our own actions caused so much hurt to ourselves and to others.  And until we can accept our role as being wrong and repent and work to repair the damage we have done true peace will elude us.  We will have to pacify ourselves with more lies and avoidance until all chance for reconciliation is gone and we are left with only our sin and deception to keep us company.

And still we say it was worth it?  Or will we fall to our knees and turn to the One who gave everything, even His life, that we might live.  Will we cling to our stubborness and pretend happiness and fulfillment?  Or will we allow Jesus to lift us up out of our man-made mess and cling to Him, asking for forgiveness and His help to sort it all out?

There are consequences for everything we do.   Some good and some bad and some are even neutral.  Every choice we make leads us somewhere, even if it is just spinning our wheels  farther into the mud.  Even more, many of our choices don’t just affect us… they affect others as well.  Our family, our friends, our children….

All the more reason to desire to make better choices, and to have someone walking with us along the way who knows the beginning from the end, and is willing to guide and direct us because He loves us enough to suffer torture and death on a cross so that we might live!

That is true love.

Not one of us are perfect.  Not one of us have all of the answers in life.  But we can know the One who does have all of the answers and is waiting for us to look His way.

I have had several friends walk a self-deceptive and harmful (to themselves and/or others) path.   I love them.  I accept them with all of their human frailties and faults.  But when they want affirmation for their actions, and justification, and approval of their decisions,  I cannot give it to them…  it goes against everything I believe. My thoughts keep bringing me back to the only One with the answers, and there is absolutely nothing I can do about it… except pray.  And so pray I will.  I’m sure God isn’t up there biting His nails wondering how everything will turn out!

This week has reminded me that I’m not perfect, which I know all too well, and that nothing is more important than my relationship with Jesus.  I need to spend time re-anchoring myself to Him.  I need to be sure He is my priority, not just an option.  And my desire is to be able to reflect that in everything I do and say.  I have a long way to go, but I have a very big God….

Demanding submission that is not freely given is not leadership… it is domination and control. You know what I’m talking about if you have ever been coerced, manipulated, intimidated or forced into going along with something you knew was wrong, or even you weren’t sure about but didn’t dare question because they are your “leaders.”

Sorry, but spiritual abuse is still abuse, and just as damaging to people. Makes me sick. It’s like some little kid got to be in charge, and is afraid people will not do what they say, so they have to force the other children to do what they say at all costs. If they won’t follow they’ll ban them, ridicule them, mock them, talk about them, or shame them until they conform. That isn’t “leadership”… that is a bully.

If I hadn’t been through it, I’d still be walking along, lalalalala…. but I’ve been seriously damaged by spiritual abuse. So damaged that I can’t walk into my old church without serious emotional backlash. Sure, the abuser is gone, but there are still the lingering memories and the ongoing hurt.

Definitely time to move forward with Jesus and leave that junk behind.  Maybe someday I’ll be able to walk through those doors without hurting, but in the meantime I’ll concentrate on healing by leaving it in the past and not dredging it all up by visiting.  I have to go one more time to watch my girls dance, and then I don’t plan on even visiting again unless it is a funeral or a wedding.