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Special Needs Parenting: Invisible Illness

Special Needs Parenting: Invisible Illness

What do we think of when we think of chronic and life threatening illness?

Why is it that people see children like Von, see how normal he looks and then wonder why we are so protective of all aspects of his life.

I think about the many people out there that also struggle with this, and how hard society is as a whole on people with chronic illness.

I'm not sure what people expect people to look like who are chronically ill.

Admittedly, I even questioned what I thought it was before I had Von.

I assumed it meant the person likely could not walk, or they had to have machines hooked up to them to live.

I thought of people with ventilators or trachs, and I didn't think of the millions of people that every day fight diseases that threaten their lives but they look just like you or I do.

They don't, "look", sick.

Sure some of them might have paler skin, some may have machines they need to survive, but most of them don't look like they are sick.

I often hear people say to me, "But Von looks so normal".

Well, of course he looks normal.

He is a human with hands, feet, arms and legs.

He has two eyes, a nose and ears too.

It's not about how the outside of his body looks, but rather about how the inside of the body isn't functioning correctly.

There are millions of diseases out there and once you actually learn about how much has to go right in our bodies to function, you truly become amazed at how any of us are born healthy.

It's truly a miracle there are SO MANY healthy people considering all the systems that have to work in order for us to live.

I had no idea what an endocrine system was before Von was born.

I didn't know that a pea sized gland controlled the entire hormone and steroid level of your body.

I didn't realize that when you are stressed out your body releases a natural steroid called cortisol.

I had no idea cortisol actually keeps you alive when you are stressed out.

There was never anything in biology classes which taught me that the lack of a single hormone or steroid could actually kill you.

I don't recall a time where I even knew what the thyroid did, and if left untreated the thyroid can cause permanent brain damage as the body cannot metabolize anything that it receives.

Heck, what was growth hormone even for beyond getting taller. No one ever mentioned to me that it also helps all of your systems from your heart health, cellular growth in bone marrow to helping your body stabilize blood sugar.

I really had no clue that missing a tiny little gland the size of a pea could truly mark a person as life threatening.

Once you get the diagnosis, we heard a lot of, "Well, there is a medication for it. So, you give the medication and he will be fine."

If only it were that simple.  Most people with chronic illnesses can take medications that help, but they are synthetic and they are being given manually versus naturally made.  We have to manage the medication levels so tightly that blood is drawn 4 times a year, and when Von is ill he is very high risk for hospitalization and life threatening adrenal crashes.

Adrenal Insufficiency kills people every single year. It's a rare disease most people have never heard of, and it's not widely understood by doctors outside of the endocrine profession.

For many of our specialists, Von is one of maybe 2 or 3 patients they've ever seen with this disease.

For most though Von is their first ever patient they've had with no pituitary gland. That's pretty scary if you think about it. We are relying on people that have only read about it to help us manage it.

I was told recently I'm just an over protective parent that almost lost my child, and so I'm feeling guilty about it.

The person told me the reason I'm keeping Von in such a secluded bubble is because I'm just scared he will die.

But that he will actually be just fine.

I was told I'm doing damage to him because I'm going to keep him home.

I wish with every fiber of my being it was that simple.

I wish I could take him out and let him play with toys. I wish he could just be in the same place as all the kids.

Instead in public I cringe when I hear coughing, my stomach drops when I find out there is a stomach bug going around.

I know of families that have lost their children with AI from stomach bugs and the flu.

Even with the medication, their bodies are still weak and they still are truly not suppose to be alive.

So, in theory, we are giving him medication and enabling him to live.

Without the medication, he would die.

Some people have attempted to go off the meds, I recently read a story about a man in the UK that was tired of taking his steroids. So one day he stopped. He was dead within in 3 days.

So when I'm questioned about our choices, this is why we are so diligent about Von's care.

This is what INVISIBLE illness is.

It means there are people like Von that are missing huge parts of their body systems, and they can't handle illness the same way a healthy body would.

They don't rebound the same.

Colds, the flu and intestinal upsets can kill them.

Medicine is only palliative.

He will never be cured.

Invisible illness is real.

Firefly Blog

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Katherine Paulson

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