Chronic Illness and Our Children

(In honor of Invisible Illness Awareness Week, I am dedicating my posts to those with chronic illnesses and to helping those who may know someone with a chronic illness to better understand them.  It is an honor for me to be a part of this cause!)

Tyler will never know a day in his life when I did not feel so sick. He will not remember me taking him to the playground, pushing him on the swings, and sliding down the slide with him.  He will not remember the first birthday bash I threw for him, dealing with caterers and squishing two dozen adults and children into my “too small for that” apartment.

Lupus struck me in October of 2007 and I was diagnosed with it nine months later, when Tyler was almost three years old.

We bought lots of books.  Books like “My Mommy Has Lupus!”  “My Mommy is Sick!”  (These may or may not be real books, I am just going by memory.)

We never used the books.

To explain my illness we used…Spider-Man.  If you are a regular reader you are laughing, and if you are new here (welcome!) you should know that my son has been obsessed with everything that is Spider-Man since he was three-years-old, and we use Spider-Man for just about anything we need to explain to Tyler.

If you are a Spider-Man freak (doubtful) you may know about Six-Armed Spider-Man.  In the version Tyler knows about, Spider-Man starts to become more Spider than Man.  In the beginning he suffers great pain “The pain is excruciating!”  (That’s how Tyler learned the word ‘excruciating’) coming from his ribs.  Eventually he completely turns into a giant monster spider.

Laugh if you may, but because of this episode saga, Tyler began to understand what pain meant.  I told him, “You know how Spider-Man holds his ribs before his other arms pop out? That’s kind of like the pain Mommy feels when her pain is really bad.”

And he got it.

Since then, Tyler, now five, has been my biggest champion in the smallest body.  When I was faced with losing my hair he said to me, “But you will still be pretty, Mommy.”  When we go shopping, he insists on pushing the cart so I don’t have to.  He has asked people to give me a ride because I was having trouble walking.

He kind of has to be my defender and protector.  Over the summer I started to need to wear bandages on my wrists and knees, and sometimes ankles because I am suffering with Hypermobility Syndrome.  It has yet to be categorized and typed, I can only deal with so many diseases at a time.  The bandages help stabilize my joints, so the pain can be less and so I can use my wrists and be able to walk.  Usually people can only see my wrists because I mostly wear Capri pants in the summer.

Every time I am out with Tyler, strangers come right up to me and say, “What happened to YOU?” I know they do not mean anything by it.  They look at me and think Wow, what kind of accident did this woman have that she needs bandages on both hands??  I look at it as akin to breaking your leg and a stranger asking, “How did you do that?”

You can say one of my illnesses is now VISIBLE.

They do not like the answer that I give when I tell them the truth.  Their faces fall, their body language indicates that they are horribly uncomfortable.  Hah!  That’s what you get for asking!

Actually, I really don’t think that.  Instead, I look at it as an opportunity to educate each and every one of those people.  I try to make them comfortable again.  I try to make them see that I am not a freak.  They usually end up smiling and saying, “Wow, I have never even heard of that disease before!”

Anyway, I imagine how tough it must be for Tyler to hear it every single time we are out together. Sometimes more than twice a day.

The way I see it, my son is either going to grow up to be a doctor or a very messed up adult.

I am loving my child, I am being the best parent that I can possibly be with the tools that I have been given.

I’m hoping for the doctor.

Fun With Nutella!

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.

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