Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Sunday, January 5, 2014

Question... Is having an Illness or Disease a 'Get our of Jail' Card?

My mind has been going over this question now for a little while and I can not seem to find a concrete answer as I guess this truly and sadly not black and white, but then what is ;)

I think I talked on my blog before how Ron and I had to make a decision in how to parent Connor after he got sick. There is a certain mentality that comes with being sick that can cross over to entitlement when so much attention goes towards someone you feel bad for. For us the call was easy. Connor would be treated the same way, everyday, in regards to rewards and discipline for his behavior as we were treating his twin brother.
Yes, there are some things as in helping around the house that we had to adjust but Connor's strength is in doing things stationary so he could write or help in the kitchen while Alexander is the more active one who then helps with setting the table or getting our drinks set up for dinner.
As to behavior, we realized that Connor picked up an attitude when he first came home from the hospital that the world should be focusing on him. However I feel almost every 5 year old feels that way to some degree. We sat him down and made it clear that he is an equal part of the family and NOT on a higher pedestal then his brother. 
Was it harder for him to learn to control his emotions? Oh yes. We are talking about a disease that needs medicines that are very mood altering. He had less patience and was more moody, but we told him if in any form his behavior is hurtful to anyone he will have to face the consequence. Punishments in our house are usually a writing assignment about what the offense was and then a letter of apology to the person that was hurt and having to read it out loud to them.
Four years later we still deal with some issues but then what is part of life and what is due to a disease? Let's face it as I keep saying none of us is perfect. 
I for example get very passionate about politics and religion and there are times I wish I would not react so fast but sleep on it. Easier said then done. I need to realize if what I say works towards making a situation better or is it just igniting a bigger fire? I find out often it is not for the better ;)
Alexander, my baby boy, is challenged in the slowing down part. He reacts and acts even faster then I do. Everything has to happen fast. He never learned to walk but started running. He eats fast, he talks fast etc etc.
We all have our issues and many times how can you say what is related to a disease and what is just part of growing up?

I am mentioning all this because I have been observing a behavior online that makes me worried.
Can you as an adult go and enter political discussion, get very vocal, accuse people and even call them names but when the accused fight back then stop and pull out the 'Get out of Jail Card' as in 'Everyone is mean to me when I am fighting a Disease'. Now the phenoman is that for many of us our first reaction is 'Oh no, I am so sorry you are dealing with this. We had no idea and how horrid people will argue with you.'
Now jump forward and you see this happen over and over again and each time the aggressor is the same 'sick person'. Does at one point the 'Get out of Jail Card' be removed?

Does a diagnosis automatically give you the right to act and behave in which ever way you want?
Let's say you know a person that was always rude, a bully and aggressor. Now that person gets Cancer. Will that automatically turn them into a saint that has all the answers and wisdom? I think some belief it is, I personally don't.
What was before unacceptable behavior is now excused by 'Oh but they are so sick'?

How then about people in Prison? I am sure we can find all kind of sick people there, too. So if they have Cancer for example does that excuse the crime they committed?  Or should we let people out of prison if they do get sick with a disease that has no cure? 

I guess I am truly just brainstorming how I feel but do want feedback. Is being sick an excuse to behave badly?
Should we give leeway to those we know that are facing a battle?

Hugs and already thank you of your thoughts.

R A C A


2 comments:

  1. Great blog Anke!!! I agree with you, I don't think that a diagnosis gives someone the right to behave badly. The only exception to that rule would be if the illness or treatment were to blame for the behaviour. Your example of Connor's ability to control his emotions due to his medications is good, or a brain tumor putting pressure on a certain part of the brain may be an excuse for some behaviour but, that doesn't always make it acceptable. Both you and I do not accept bad behaviour from our children just because they have an incurable disease so why should we accept that behaviour from someone else. I know my kids would not accept that behaviour from me just because I have an incurable disease and I don't expect them to. Being sick is no excuse for being rude!!!

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  2. I agree, if a person is rude then tries to pull that card out, then they need not to engage in conversations that would promote an argument. In many cases, these things only happen when they know they can get a "rise" out of someone. You may never hear from them, but post something that they KNOW they can argue and upset people, and they crawl out behind the shield they live behind.. My daughter has always made sure that we all treat Kinser as any other child, so he knows what the rules are..

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