Cheers to 2013, and farewell to 2012!

It's amazing at where you can find the most inspiring, deep understanding in people by even a simple quote, or perhaps even a TV show.  For me, it would have to be the most recently catching up to Private Practice last night via On Demand.  There is a Psychiatrist whom was diagnosed with prostate cancer and as he was going under a scan to see if he might have a mass elsewhere when he ran into a lady in the waiting area who was terminally ill with cancer.  Prior to this, he reconnected with his ex wife to try to ask for her support besides just fun weekend hookups.  She said she couldn't handle it and walked away entirely.  Ironically, the same that he did to the terminally ill lady until his own Psychiatrist mentioned to him that as he had experienced with his ex wife that not everyone has the adversity and ability to adapt and deal with some of what life throws our way.  He took life at it's grips and asked the terminally ill lady out on a date.  Yes, it all sounds fictitiously cliche.  In reality, this is real.  Not everyone can handle all that life throws at us, and even though we never expect it to happen, some just can't handle it all and instead walk away.  This has no part in my principals, but not everyone shares the same insight.  No matter what happens, some one must still take care of things and get stuff done.  Life isn't a simple walking away from things, as it only makes things far harder within time.

With that said..I'm grateful for 2013 quickly approaching!  2012 has been a world wind of happiness, sadness, stress, craziness, and all those lovely memories with my kids in between it all.  Sure there has been tons of doctors appointments, some things that come and some things that go, but all in all it's about savoring those wonderful small moments in life that make you feel alive, and stay present in them when they do happen!

I've had a crazy past few years during this time of the year.  This is the first Christmas and New Years  Eves that has brought me amazing peace after years of healing from a traumatic one when I was pregnant with my oldest son.  Every year taught me something new to learn from, heal from, and keep moving forward with continued progress.  As they say what doesn't kill you only makes you stronger.  This really has helped contribute to helping me handle all that is going on with Colin's journey this year almost like it prepared me for all this. I'm very grateful to be alive and living each day even with the good and the bad that comes my way. 

 A week from today my college classes pick up once again.  There is 16 credits altogether with 4 classes of Photography, Intro to Drawing, Women in Art, and English.  I completed my last term through thick and thin with a 3.57 GPA struggling greatly with Biology but completed it with an inspiring teacher.  The last 3 weeks of class was another dark point in my life where I just 'let it go' and let it be what it would be while doing what I could.  Setting aside my stubborn type A personality!  The most amazing moment happened to me when I did this.  While handing in my final exam my teacher leaned forward and whispered to me that to not worry about the test I had missed or the lab homework as she gave me both 100% for free on those.  I was floored, and left all misty eyed.  It was so refreshing to know that some one could do such a thing knowing that I was working hard and yet struggling due to too much on my plate with my personal life that just seemed to keep piling up.  I will NEVER forget that moment, as she really touched me permanently.  I'm working so hard to keep things together, complete, up to date, and yet retain all this homework college throws at me while also trying to memorize all that is going on with my sons medical situations..appointments..and such.  It really was a pursuit of Happyness moment.  I am also extremely grateful for my mom being such a huge support like she's never been before.  She would call to encourage, wish me luck, and support me with just honestly genuine motherly love when I needed it the most.  Not to mention those amazing friends who have been there along the way to reach out, listen, send me such amazing kind and supportive words along the way.  I'm truly blessed and SO grateful.   

They say you're not handed more than you can handle.  I'd have to laugh at that at times but despite the insanity I wouldn't want my past to be any other way.  Adversity, Courage, Faith, and Adapting are my huge keys to moving forward.  I'm sure all those years of pushing through long distance running also helped me tremendously to keep fighting and loving through even the most hardest hours.  I just know there is more in store, and more to be completed, and more to be done.  I don't mean that in a pessimistic way but in a realistically optimistic approach.  When people ask me how I do it or going to do it, I just let them know I've been through worse.  It has made me who I am and that is precious to me as I am Cambryn..one of a kind not just with my name but who I am.     

With that said, I wish you all the best New Years of 2013 possible!  Our journey continues as does yours.  Live like today was your last and don't forget to enjoy the sunrise each morning along the way. 

With that said, I leave you with one of my favorite poems by Maya Angelou--who I've had the great pleasure of seeing in person! Enjoy:

Phenomenal Woman

Pretty women wonder where my secret lies.
I'm not cute or built to suit a fashion model's size
But when I start to tell them,
They think I'm telling lies.
I say,
It's in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
I say,
It's the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Men themselves have wondered
What they see in me.
They try so much
But they can't touch
My inner mystery.
When I try to show them
They say they still can't see.
I say,
It's in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I'm a woman

Phenomenally.
Phenomenal woman,
That's me.

Now you understand
Just why my head's not bowed.
I don't shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
I say,
It's in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
'Cause I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Maya Angelou

Cheers and much love,
Cambryn Courson (aka: Conner, Logan, Colin, and Breatens Mom!)

2012 appointments with 2013 more to come

This year has been quite an adventurous one from 52 appointments within the past 11 months.  There is plenty more that needs to be scheduled for just Colin alone.  Not even including screening the other two boys [not my oldest is needed].  It's no wonder parents with special needs children aren't able to juggle a huge load in addition to all the rest that comes with life.  However, I'd like to be that exception when it comes to life and take each moment carpe diem in order to live a full life.  As they say, live life out loud.

Future appointments shall be made with these specialists and needs: 

• ERG with Casey Eye Institute to follow up on possible progression of Achromatopsia or even Cone-Rod cell dystrophy in addition to Achromat. There is signs that he's likely completely color blind with possibly just seeing colors very minor.  It's no wonder he hasn't caught onto learning his colors like he has other things! This will be overseen by an eye geneticist and neuro ophthalmologist.
• Every 3 months we have a maintenance visit with Casey Eye to make sure no further damage is done with his potential Retina rips or coming unattached. Due to Sticklers Syndrome.
• Occupational and Physical Therapists due to preventing Juvenile arthritis with muscle stability which is highly common with Stickler Syndrome, as well as helping with his Sensory Processing Disorder management.
• Neuro Psychiatrist to determine if he does indeed have CDD or just Aspergers with some regression in general.  As he's gone from being highly articulate to now more one words or stuttering that he's never done before.
• Continue to see the Psychiatrist to manage behavior, and a behavior specialist is likely needed as well in particulate once he attends school.
• Contact the school for the blind in order to manage and receive help for his Achromatopsia as he goes 'completely blind' in bright settings such as indoor or outdoor lighting. If he see's, it's in a high contrast of black and white.
• Eye Dr's to get the most accurate and correct tinting of his special glasses needed for Achromatopsia such as shades of amber to yellow to potentially just full on deep red.  He'll need around 2-4 pairs, I've been told.
• Shriners, there is currently about 5 different specialists we also see there on a regular basis and will continue to keep seeing to manage symptoms, preventive measures, and such.
• Geneticist to hopefully get final test complete on what genetic mutation of Stickler Syndrome he has, Achromatopsia, Aklyosing Spondylitis, as well as a few other potential genetic mutations that might surface from 2nd cousins on Mikes side. I believe there is about 7 different genetic tests that are still pending via the insurance for months now. 
• Retest him in Gluten intolerance, dreadfully again.  The last one was false as the last week I had tapered off from his Gluten diet due to his inability to sleep at night. He became full of sensory, stemming, and had massive meltdowns that would leave him to falling asleep at times 2 am if not sleeping at all during the night but instead fussing and crying all night flopping around not being able to get comfortable.  Not exactly the most exciting situation when you're attending college full time and need sleep in addition to juggling this!  Melatonin on a regular daily basis has put him to sleep far better with out much of these hitches as well as returning to a Gluten, Dairy free, and Cassen free diet.
• Keep log of all that he eats.  He will likely still see a Pediatric gastric/bowel specialist as well.  He has never but rarely had solid BM since birth.  He also complains about a painful stomach ache and eating gives him anxiety at times.  Tracking his diet will help determine what exactly is making him set off with these anxieties, and potentially help lessen them from being aware.  Yay, another thing to keep track of.  Why not?

My hopes has been to have him in Preschool already.  However, due to college it's been hard to settle down those details and make sure to get him in quickly.  My hopes is to get him into a pre-k this next return to Winter season and that everything will go well with him adapting into a social environment.  It will be a great test to determine how he'll adjust to Kindergarten starting this fall.  That will be nice to have 3 kids in school this fall! *phew*

More to come in 2013, and it's very likely I've left a few things out.  I've had to take a few weeks off during finals and stressful intense situations this month from many of these appointments which has set us back a little.  However, I hope to return and get most of these once again out of the way that way I can focus on other projects and life better.  After all, I have to still pay attention to my other 3 boys in the juggle of it all.  It's not hard, but it's also not easy.  I'm just ready to clear my schedule a bit more from all that still needs to be accomplished!