Year End Review

[I’ve written something for this post several times.  Each time I end up trashing it.  Hopefully, this time will work for me.]

At the end of every year, I review the year…what went right…what went wrong.  So...Here goes... 

HEALTH
This year started off heavy.  The negativity of the past several years had gotten me into a very bad place.  My health was paying the price. 
Having PKD (polycystic kidney disease), stress is a major negative factor.  I’ve endured too much stress over the previous few years and my body was telling me.  When my health took a major downturn early in the year, my doctor had to increase my medicine dosage (keeping my blood pressure low normal to protect my kidneys from damage in that area) by four times!  That was a wake-up call for me.


LEARNING CHALLENGES
I’ve been very open about my youngest daughter’s challenges with learning.  In 2013, her social challenges began to be even more noticeable.  I was at the point once again where I had to find another key so that I didn’t lose my daughter to her world of isolation.  We became very educated in the area of Autism/Aspergers Syndrome.  Unfortunately, the medical community (except for a late night conversation with a wonderful doctor off-record) has been basically no help.  At the end of 2014, we still have even gotten an appointment for testing which we were told was requested in August...but I have educated myself and I am actually growing closer to my daughter. 

My youngest daughter on the day that she was recommended for testing in August.  We were given hope...

DIET
Next there was a photo.  I posed for a photo with my daughter before she left for the Father-Daughter Valentine’s dance.  I was sickened by what I saw.  Granted, I had no makeup, unfixed hair, sloppy clothes, the need of a shower and had just completed hours pampering my daughter to get her ready (in addition to a furiously fast moving photo shoot….her patience with the camera is short) but I looked awful!!  What I saw was a pale, unhealthy, unrecognizable version of me.  Not to mention that I felt bad.

One of the better photos of me that day.

That picture and my weight at the doctor’s office set me on the path of health low-fat diet, which helped me shed a few extra pounds and add some color to my face again.  In addition, I eliminated every stress that I could in order to get my body and mind in a better place.


PHOTOGRAPHY
I stopped doing photo sessions for others this year.  Even though we knew it would create a financial burden, I realized that I was working to much for too little.  As a business person, I knew that my dreams in photography were no longer a good investment of time/money.  Sometimes reality doesn’t agree with the heart.  :(

I briefly pursued stock photography.  However, I quickly discovered that I was not having success there.  So, I chalked that one up to an interesting failure.

THEATER
After finishing up 2013 on a theatrical high with SPAC’s production of The Best Christmas Pageant ever, I had to take a break from theater.  Unfortunately, financial and health reasons prevented me from doing what I love.  I have to admit I miss the stage!!!


RELIGION
God has always been a huge part of my life.  In 2014, we left the congregation that had been our home for years and visited a few other locations.  We were actually analyzing our daughter’s reaction to other places.  We hoped to confirm (or deny) whether or not our daughter’s social issues would change with location.  In the end,  she was consistent and she chose to go back to our original congregation.  We finished up 2014 doing the Christmas program together.

Christmas program (Strangers at the Inn) photo taken by my mom

FAMILY
I always enjoy family bonding time.  With so many distractions gone and working together to face the year’s challenges (financial, health, learning, social), we were able to nurture our family bond.

One from our Christmas card photo mini-shoot

When everyone else walks away, those who love you will be there!


HOMESCHOOL
We finished up 5th grade with better learning focus (which was a great thing!).  In August, we started 6th grade in our newly designated classroom.  Then we had a place for our school stuff that we could shut the door on and walk away.  It helped give us some separation.

I was a little overambitious as we started off the new school year but quickly noticed the issue and revamped our schedule.  My daughter reacted positively.  We ended this semester with some very good improvements!

One field trip was to see this WWII ship.

PETS
We lost our beloved 16 year old lab mix (my hubby’s dog before we were married).  That was tough.

"Saying Goodbye"

We added a rescued kitten to our household, Tinker Belle (or Tinker the stinker, as I like to refer to her…heehee).  I  can’t help but smile when I see her tongue-out happy face!

Tinker being Tinker :)

We gave lots of affection and received a lot in return.  Where friendships have gone away, our dogs are always there to make things better!

Halloween family pic

CONCLUSION

Well, there it is.  My year in review. 
While it was a rough year in some ways, it was a great year in other ways.

What made for a Merry Christmas for me ~ Loved ones all together...and having fun!

Here’s to saying goodbye to the negative parts of 2014 and adding to the positive ones in the new year.

The Monster that Haunts Me

It's been over three months since I once again was told that my daughter was recommended for special testing. Once again, I wait. You would think after over six years of this ongoing battle with the medical profession that I would be more used to things...but some days are harder than others...

Today, I reread her initial testing report...

Back in 2007, my daughter was given an evaluation which was done a few days before her sixth birthday. After a whole day of testing, the diagnosis was one that I knew was far from correct. I was disappointed beyond belief. I had reached out for help and had received an improper diagnosis with a recommendation for me to start my daughter on drugs. I had already been disappointed by the coldness (and, dare I say, bullying behavior) of the public school system. Now I was given a diagnosis that it didn't take a fancy degree to know was not correct. When I reread the initial testing report, I see many red flags in addition to pure inaccuracies. What horrible evaluators! How fortunate my hubby and I were to not just blindly accept what we were told.

I reread her initial testing report...
My daughter was disappearing before my eyes and this was the best they could do! I was mad. I was hurt. I was disappointed. I was disheartened. I asked for help and I got less than nothing!


I reread her initial testing report...
...for months. I was so blindsided by such a wrong diagnosis from the people who were supposed to be professionals. It took me months to finally present the report to my family physician. She was as confused as we were. She said that we were right not to act on that evaluation since it was absolutely not right. She introduced us to the world of dyslexia and recommended her for evaluation.


I reread her initial testing report...
...and then looked at dyslexia. I cried. I saw her symptoms all over the place. After weeks of trying to get her in for testing for dyslexia, we were unable to get an evaluation. The insurance didn't cover the cost and the testing was expensive in addition to hours away. We were unable to get the testing that she needed.


I reread her initial testing report...
...then put it away to concentrate on dyslexia. I learned everything I could get. I talked to parents and teachers of children with dyslexia. I took all the advice and knowledge. I confronted her challenges fiercely. I was not going to give up.


I reread her initial testing report...
Something still wasn't right. In fact, some things that had always seemed quirky were now becoming obsessive behavior. Why is she always so distant? Why doesn't she want to relate to others? Why doesn't she liked to be touched? Why am I being asked by people if I had considered autism?!



I reread her initial testing report...
I don't know why.  The feelings of anger, disappointment and everything else come rushing to the surface. It's always so raw.  Why do I do that?  Why didn't they see anything strange?  They were supposed to know.  But they didn't...


I reread her initial testing report...
I appease myself by noting that things have only gotten worse since her initial (and incorrect) diagnosis. Perhaps they needed it spelled out more clearly as it is now.  I remind myself that I have gotten no help at all so far.  I question whether or not to ask again.


I reread her initial testing report...
They were WRONG!  So why do I keep looking at this evaluation?!  I need answers!  I need the TRUTH!


I reread her initial testing report...
There is so much that is wrong with it.  I can see my daughter with my eyes.  I have researched enough that I am convinced that I know what we are facing now.  Should I say anything or not?


I reread her initial testing report...
Her evaluation is SO wrong that I need more answers.  I need to have something that is right.  I need to be able to work with a real diagnosis.  I need this.  I need help.


I reread her initial testing report...
I have been disappointed, yet again, by the medical profession.  My family doctor has recommended another evaluation. This time it's for ASD (autism spectrum disorder/aspergers syndrome). She seems taken aback by the symptoms that are now so glaring.  But that evaluation has yet to come.  It seems no one cares what is challenging my family.  I've given up my job, my hobbies, who I am, everything I can give up to devote myself to understanding her...yet the professionals continue to turn away.  This little girl that I have fought for so long is now becoming a young lady.  I want to enjoy my daughter instead of constantly fight on her behalf.  Sometimes I am mad that I have to do everything by myself.  I had to study her behavior, assess it, learn teaching skills to help her and apply them myself.  I know her so well at this point that I could disappear into her world and never come out...or so I feel some days.
My faith is shattered.  My trust is all but gone.


Today, I reread her initial testing report...
Why, oh why, do I torture myself!!!  The emotions are always the same.  The result is always the same.

I scold myself for reading it again.
I am disappointed in myself for letting it make me feel bad.
It's not that I can't do it by myself.  I have the inner strength to know that isn't true.  I am a force!
It's that I feel that it would be easier if someone with more experience would lead me.  Sometimes easier would be nice.

I want it to go away.
I want to know the joy of having the support of the medical community.
I want to feel that I'm part of the club not standing on the outside.
My silent cries for help unheard.
I want someone to hear my voice!!! 



Today, I reread her initial testing report...
I tuck it away.
I walk away.
I pour my feelings into this blog post.



I will not be controlled by that which I cannot change.
God has promised that He won't give me more than I can handle without his help.  Apparently, He's putting a lot of faith in me and Him!  I should too! :)

And, so, I go back to my life, put my trust in God and leave the nightmare behind me...once again.