some perspective, some thanksgiving

Did you ever notice that no matter what you're going through, you can always think of someone who is going through something worse?  I've been following this blog for about two years now.   The blog author, Shannon, has two children, both afflicted with a rare and fatal disorder called Sanfilippo Syndrome.  She is watching her children slowly decline.  If no cure is discovered, they will die.

No matter how bad things look within my little world, I always think of Shannon.  Instead of rejoicing as her children grow, she fights tears at each lost skill.  Talk about an upside down world!

Her blog is raw and honest.  She doesn't try to paint a rosy picture; she grieves through her words. I admit that it's hard to read; sometimes I know what to say to her, and sometimes not.

Peter displayed some Obsessive Compulsive symptoms (OCD) when I experienced morning sickness during Beth's pregnancy.  When the second trimester began and things settled down, his symptoms went away.

Since late September of this year, we've seen more pronounced OCD symptoms.  Lately new things crop up frequently.  For example, he suddenly began reading a lot less, following a period of eagerly devouring books.  He also started reading aloud again, after already passing through that developmental stage.  He tells me he has to read aloud because it keeps him from skipping words.  He also rereads many phrases and entire sentences, for fear that he's skipped something.  Even though I've assured him he never skips words, he still repeats lines, making reading quite frustrating.  His brain, he tells me, makes him repeat lines so that Jesus won't be mad at him (distorted religious views are common with this disorder).

He can't be outside for more than two to five minutes before coming in to tell me that a stranger said something to him (but a stranger never does).  The obsession is a stranger talking to him, and the ritual is to come and tell me.  I am to say that no one spoke to him.  If I don't respond as needed, he gets stressed.  OCD kids go through these checking rituals, needing certain verbal assurances in order to go on with their day.  For example, a child might say, "I think I touched raw egg.  Am I going to be okay?"  And the parent must say, "Yes, you're okay."  The same sequence occurs over and over, driving the parent and child insane.

He also frequently says sorry to Jesus with his head bowed, because he either had a disturbing thought about hurting someone, or because he felt he did something wrong.  OCD people don't act on their disturbing thoughts, but nevertheless, the thoughts cause great stress, which is not relieved until they've done their ritual.

Peter no longer falls asleep easily and must ask me about several things, including if a fire will happen, a tornado, or other disaster.  He comes out of his room at least five times each night, asking me if such and such thing is going to happen, and I must assure him that, no, nothing bad is going to happen.

At times lately, I feel on the brink of despair.  To see my son suffering like this is so painful!  And, he takes up a lot of my time, leaving the other kids too little of my emotional energy.  They are distancing themselves from his bizarre behavior; this has happened subtly over time, despite my giving them simple lessons on what OCD is.

Peter knows all these things are irrational, but he can't stop.  We huddle and pray often now, asking God to help him fight these thoughts, and avoid doing the ritual.  To the Lord's credit, my sweet boy is not bitter, except for some jealousy of his younger brother, whom he perceives has an easy life, compared to his.

If unchecked or untreated, the rituals associated with OCD impair functioning, making it difficult to live a normal life--they take up too much of the sufferer's time, for one thing.  Cognitive Behavior Therapy--training them to challenge their thoughts and face their fears--in conjunction with medication, is the usual treatment.  Although OCD often shows up at seven years old, kids this age are not generally given psychiatric drugs, unless they are severely impaired.  We aren't going to seek OCD medication at this time, but Peter will see a neurologist to take a history and give recommendations for treatment (for the ADHD and OCD).

My husband's nephew has OCD and bipolar disorder, and my family has a history of anxiety disorders, so poor Peter, and my other children, have unfortunate genes on both sides.  I won't know if my girls are completely normal until they reach at least age eight (or adolescence, for bipolar).  Paul worries me in some respects, but it appears he will be less impaired than Peter.

My half brother has ADHD, and his daughter has bipolar and an anxiety disorder.  ADHD, OCD, Tourette's Syndrome and Bipolar Disorder often occur together.  They affect the brain similarly.  If a parent has ADHD, for example, his child may inherit one of the others, or both.

When Peter's reading symptoms cropped up, I was so mad at God.  How could He allow that pleasure to be tainted by this ugly disorder?  As well as Peter's time outside, and his beloved baking and cooking?

But it wasn't long before I thought of Shannon, watching her children slowly die of Sanfilippo.

Do I really have any problems at all, compared to hers?  I think not.

I trust God.  I trust the outcome.  But the journey is hard, despite His grace.

The challenge is to keep my eyes heavenward, every moment of the day.  I do that, lately, by doing the prayer huddles with the children.  At the very least, they help me ( and Peter and the kids) get through the next hour, at which time we huddle again, if necessary.  They are troopers and don't look upon the praying as a chore.

My gratitude list:

- My husband is off on Thursday and Friday.  He works seven days a week, normally.  Time off isn't paid, but it will still be a blessing to all of us.

- Smiles and hugs, given to each other as gifts

- Peter's wound is finally looking better.  For the first week, I wasn't getting the bandaging tight enough to hold the skin flap flat.

- Online friends.  All of you.  Thank you.

- Having online contact with other parents who have special-needs children.  All the flesh and blood people near us have normal children; they don't understand, nor do I expect them to.  Being understood feels priceless.  

- 2 Corinthians 1:4  Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. 


- The ability to comfort others.  Without grief, without hardship, we never learn this.  To be able to comfort is priceless!  


- my sweet baby, sleeping better tonight (mild sinus infection following a cold)


- writing--it helps me process, and it allows God to speak to me


- Louisa May Alcott's Little Men, which has turned out to be quite a treasure.  No surprise there.


- The book of Proverbs--easy for young children to follow.  


- a warm house (Weather is turning.  Snow expected on Friday.)


- warm clothes


- Thanksgiving, for the togetherness it allows, for the attitude it teaches


Happy Thanksgiving, friends!