What Are You Going To Do When Mom Is Dead?

Cameron took this pic last summer.

That was the question posed by Ryan to his younger brothers!  Within that question, Ryan touched on an aspect of life for all of us:  facing my own mortality through the eyes of my children.

For any parent of a special needs child, the thought of how his or her child will survive is a constant thought and concern.  For me, this has become more of a reality.  I face surgery again for the second time in six months to remove a tumor.  The first tumor was benign, and I hope it is again.  NOT that anyone has indicated that this tumor is life threatening, but leave it to a teen with autism to reduce life to the basics!

My husband and I have tried to raise our children to be independent, knowing right from wrong, enabling them to make good choices, and living without fear.  Well, we haven't finished the job, and I want/need more time with my boys.  (Don't we all?)

So back to Ryan.  He questioned his brothers because they weren't doing their part to help with dinner.  They had also asked questions that bothered Ryan, questions about who had to do what when.  He got exasperated, and blurted out the question, "What are you going to do when Mom is dead?"  He continued, "You're going to have to do it yourself."

I was within ear shot, but I didn't say anything.  I wanted to observe how the younger two boys reacted.  I couldn't see their faces.  They must have been momentarily stunned.  Ryan did not relent.  His face continued to ask the question!  The younger brothers kicked into action.  No longer did they stall.  Instead of asking the questions, they volunteered to do the tasks. Within a few minutes, everything for dinner was done.

This is not the first time that Ryan has asked his brothers this question.  Ryan has become aware of my daily routine since he has graduated from high school.  Within the last six months, Ryan has matured greatly.  I've heard him say, "I better step up," when he sees me get behind.

Ryan is growing up, and he is becoming quite aware of others outside his world.  For any young adult with autism, that is an accomplishment.  For a mom worried about the future of her kids, that is a great comfort!

This brings a sense of peace!

Surgery Is Scheduled And Now--

My upcoming surgery is scheduled for early December.  Just in time for the holidays!!  "Tis the most wonderful time of the year," I think--sarcastically.  I could run a ton of songs in a very satirical story, aka sarcastic drone, but I need to be positive.

I have much to do before December.  Thanksgiving is around the corner, but I have already finished the required necessities for that holiday.  December is a different ball game.  I have to make arrangements for regular events as well as items pertaining to the Christmas season.

To start the preparations, Ryan and I went Christmas shopping today.  We went to a bookstore, as requested by Ryan.  Then we walked the local mall. We were searching for an item that we were told was only in a store that I abhor. 

Ryan and I walked in.  Ryan was not comfortable.  We hurried through the store, unable to find the item.  Ryan suggested that we'd get out faster if we asked someone.  Just at that moment, the sales clerk greeted us with a smile.  She was human.  She inquired, "Are you looking for something special?"  Something special in this store was an understatement.

"Yes," I replied.  "I am looking for..."  (Can't spill the beans here.)

Her smile brightened.  "We not only have that, but we have this!"*

*"That" and "this" have been substituted to protect the unknown.

So I bought the "this" and "that".  Since the store had a "buy one get one half off" sale, I asked Ryan if he wanted a shirt with a logo he liked.

"No," he blurted out.

I looked at him with a question.  He gazed back at me, saying, "I have enough things in my room.  I don't need anything."  It was a simple, straightforward answer.  Very typical of teenager with autism.

As we left the store, he smiled.   He was right.  We found the item faster by asking.  I knew why he was smiling--because Mom was the one who didn't want to talk this time.

Funny how we all have our comfort zones.  Funny how life pushes us out of those zones, and we become better for it.  Ryan taught Mom the lesson today.

Going Under The Knife Again

No one likes finding a lump where it doesn't belong.  No one likes hearing the word "tumor" from a doctor.  No one likes a encore performance of a tumor either.  I am no exception.

Within less than three months of having the tumor removed, I noticed the lump had returned.  Like I didn't have enough fun the first go round.  I like roller coasters--real roller coasters.  I'm not much of a fan of emotional roller coasters.  I have enough of those with being a parent of teenage boys with autism.

After having to fight to get my medical records from the doc who performed the first surgery, the idea of searching for a new doc was exhausting.  I procrastinated.  Not a good idea when dealing with a tumor.  However, I just couldn't pursue it.  I was emotionally dead to it.  There was so much already going on with my sons' government agencies battling issues out, that summoning the required positive frame of mind was impossible.

Trying to explain this to people was futile.  They heard "tumor", and they expected me to move on it quickly.  I got lots of advice, to look for this, that, and the other.  "Good to know," I chimed out with a smile.  Nothing like extra pressure.

About the only thing I could do was ask people for referrals of a good surgeon.  Over a few weeks, I gathered several names.  I researched the backgrounds of the docs.  I narrowed the list down to three.  Then the list sat on my desk.

Last week, my mother visited me.  We discussed the doctors, and she wanted to know if I had called.  Unfortunately, I shook my head.  My mom was not impressed.  I tried to explain why, but that wasn't going anywhere.  My mom was a nurse for a gazillion years, and needed medical attention is not to be postponed when she is around.

She dialed the doctor whom she liked, and set the ground work in motion.  Then she handed the phone to me.  I had an appointment within 48 hours.  I met the doctor.  Within a few minutes of meeting him, he called in a second doc.  They spoke and debated my case.  I never had a second opinion so fast.  Before I knew it, I was scheduled for another surgery and understood the procedures and possible scenarios.

My procrastination seemed stupid at this point. I am at peace with the forthcoming procedure.  Still, I'd rather not undergo another surgery.  Risks persist, no matter how good the doc and technology get.

Of course, I also think about how much I have to do to keep up with my sons.  Their needs don't stop.  Even if I can't move.  Phone calls, records, therapies continue.  Urg.  I'm trading one roller coaster for another.  Now I simply wait until I'm healed to ride a real roller coaster.  Yippee!!

Photo credit:http://www.flickr.com/photos/dhedwards/

Home From Surgery

Surgery done.  Outpatient basis.  Am home.  Whew!

This all started about 6 weeks ago.  Yep, I noticed a lump, bump, or thing on my right shoulder blade.  It was on top of sore muscles--muscles that are always tight when I'm stressed.  (Connection? Hmm.  Would not be surprised.)  There was no pain, no redness, no itching.  Just this lump.

Surgery time! I was awake through the whole procedure.  After the local anesthetic took effect, I felt nothing but a lot of tugging and pulling.  The surgeon described what she was doing.  Not a bunch of detail, enough to keep my imagination in check. The incision is about 3 inches long, so this tumor was not small.  After all was done, I saw the tumor.  Gnarly thing.  A big clump of tissues banded together.

This lovely collection of unwanted cells will be sent to the lab for testing.  The doc is fairly sure that it is benign, but I will wait for official results before closing this chapter.  I don't want to think it's all done, only to find out it's not. 

I asked how long it had been growing.  The doc estimated 5 years.  She is not sure how it remained hidden, but it did.

It's been a few hours now.  My right arm tingles.  Pins and needles kind of pain.  Think of the funny bone being hit just right; then the arm feels a tingling paralysis.  Muscles are tight throughout the neck and shoulder.  Other than that, I'm fine.

Just have to wait for those lab results. In the meantime, I get to sit and watch a movie marathon from my recliner.  Life is good!

Prepping for Surgery

I tried to describe this experience to a friend:  The "something that may be cause for concern" is a "nothing to worry about" that "needs surgery".

I've seen a few healthcare professionals recently.  At every appointment, I'd hear the same tip-toe dance.  As the medical visit progressed, the doctor or nurse became very reluctant to speak.  The above quotes were uttered by these medical professionals, just not how I have strung them together.

This reminds me of all the testing Ryan went through before being accurately diagnosed with autism.  Ryan was two years old when we started seeking medical help.  At the age of 5, he was initially diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified), meaning there was something going on, but the docs didn't have a clue.  As the years passed, ADD, ADHD, OCD,  and speech delay were added to the list.  Doctors couldn't agree.  Just for humor, I added ABC and XYZ to the list.  When Ryan turned 7, he was finally diagnosed with autism.

I have since learned that medical and educational professionals like to "ease" parents into a potential diagnosis.  They seem to think that is acceptable, and we parents appreciate the steps leading to a devastating reality.  NOT TRUE.  At least, in my case, I'd prefer to be told the worst case scenario, and then ease up if necessary.  Each diagnosis that Ryan endured broke my heart more and more until it was finally shattered with the diagnosis of autism.

So now it comes to me and a lump.  Each nurse or doctor initially told me not to worry.  However, when each heard my family history of "lumps", the demeanor changed.

My father has survived several types of skin cancer, including melanoma.  He has also survived lung cancer.  Twice.   The last time he was given 4 months to live.  That was 13 years ago, and he is alive and well.  I call him a walking miracle.

So out will come this lump.  I told my sons individually.  Each reacted differently.  Stu freaked.  Ryan and Nick accepted it quietly. Cam was on the phone, telling his friend all about it. They understand that, as of now, it's just a lump.  When it comes out, it will be sent to the lab, we'll find out if it is something more serious.

I am still not worried about me.  I am concerned about my sons and being to progress without guidance, so the focus this summer will be to give them opportunities to problem solve and be independent.  Of course, all parents strive to teach their children to be independent.  It will just take a little longer for my boys with autism.  With or without me.