Part 1 - What's been happening in my life?

One thing's for sure - once you've gone through surviving all the storm life throws your way, you know you can take on just about anything.  Essentially, when you've already survived all that, you know you have nothing else to lose but you have everything left to gain. This is the thought process that propels me into greater things in life now. 

How do you write down a few years into one "untold story" of what has really been happening in your life?  There's already been a few rough drafts written, plenty of brainstorming over what to say, and yet it never seemed to come out right.  It's not that things are hard to talk about, which I'm actually quite the opposite when it comes to adversity, as I would rather dance in the storm than sit down. However, all these messages have been about me, and that's not what my focus is now.  It's about empowering other women, parents, and special needs caregivers that they can can do more than feel powerless over their children's conditions, or even surviving a failed marriage because it was too much for their spouse to handle, etc.

My (character building) mountain climb of a journey, is now a told story of my untold past history.  What weaknesses happened to me yesterday, doesn't define who I am today, because those are worked on to become my strengths, rather than hold me prisoner as a victim of can't do's, and maybe I won't ever doubts.  But really, what you can take away from this is this: This is a message told to empower those going through the same, or have gone through the same. Most of you close to me know what it's about. But for those who don't know..read on (there will be more than just this blog..too much to write in just one post).

What is this retold story about? 
My journey back from (a quick overview):

• Surviving a few awesome tech startup companies going under
• Relocating near Portland - company goes under as soon as I relocate (3rd company in a row to)
• Just 7 wks after getting laid off, my health insurance lapsed, long story short: Colin!
• Difficult pregnancy: met w/college but after that counselor meeting I started bleeding/contract at 10 wks, so put on bed rest for weeks (College put on hold, ugh!)
• After so much happening so quickly, decided to take a break from work to try stay/home mom.
• Delivered a happy, healthy Colin, and tried some new parenting style: attachment parenting. VOWED TO RUN A MARATHON immediately after delivery, because labor/delivery is like running, but after 3 unmedicated  non c-section deliveries I mentally KNEW I could run one (mind over matter) and set out that as a major goal.
• During the first year, Colin squinted ALL the time, and fatigue often. Pediatrician says he's A-ok.
• One day in a baseball field, a cloud comes over Colin to show me the sunlight was impacting his vision. Why? No idea...yet. That was captured on camera, and still sticks with me - eery. So rare.
• See a few Pediatricians, eye Dr.'s - everyone says, "Colin's vision is A-ok!" Let's go outside! No.

Few years later...

• Mike (ex husband) attended 4 yrs of college under 9-11 GI bill, which I creatively generated a budget that would make us entirely debt free the whole time, pay our bills ahead by 3-6 months, and actually have more money than working F/T - but to also enjoy raising kids 1-on-1 staying at home. Most peoples eyes glaze over when I explain it, but it made entire sense to me, and it successfully worked for years. (Yes, I will allow myself a pat on the back.) 
•  During the last 2 years of his college, is when the diagnosis and Dr/specialist appointments started for Colin.
• Every week, there was 1-3 differ appt's. Around 5 diagnosis in not even a few months time.
• Being the research-aholic I am, I intensely researched each diagnosis as they came. Days, hrs..
• No Dr's or specialists knew about the other rare genetic disorders, so I'd have to educate each of them, and speak with credibility and answer all of their questions about the disorders.  

Ok, so LOTS of info...which makes this only PART 1...stay tuned for more updates...

It's been a while..

    One of the key things that rings in my mind during my busy schedule is to always know your limits.  Budget my time wisely, while listening to my intuitions and how I'm doing inside and out.  This holds true when it comes to getting further answers on Colin's medical concerns.  Within the past 2 years, since initially receiving answers on many unexplained medical concerns, answers kept pouring in the more appointments were scheduled.  Many didn't want to hear about it, while others asked about it.  Not everyone has what it takes to handle all that Colin has to live with on a daily basis.  It was merely a fine line, for me to juggle, between understanding who was a genuine support system, and those who didn't want anything to do with any of it but rather be destructive.  Ultimately, to come to some major decision points in my life as well as my boys.

   Most already know, but since the wheels have already been spinning technically, it seems like the right time to open up about what really is going on as of late.  First, college has been my main focus to get at least my 2 year degree under my belt [finally, returned back to complete my degree after around 4 years off!].  My last quarter was 4 classes of 16 credits which just came in at a successful 3.63 GPA of 3 A's and 1 B with my classes.  During this time, I've backed off of any of Colin's appointments except his Psychologist appointments to help manage his mild Aspergers [possible CDD, still unanswered..] as it just became to much for me to juggle it all.  My mind has been entirely over loaded with college work to even hold any more additional medical terminology for a few months.   However, this has been a relief for me as I've been the only one taking on all of these appointments, independent medical research, answers, extra reading, networking with others who share each unique medical condition, etc.. It has been a much needed break to focus on my future, give Colin and I a break from all these poking & prodding, and allow myself to breath from tons of unhealthy prolonged stress.  After all, the kids need a balanced mama but I also need myself to be better balanced as well moving forwards with my new life, which means to take steps back at times..and never feeling guilty or regretting these important steps back to independently breath.

    Lastly, but not first and foremost, during this time Divorce papers have been filed.  It has been stressful at times managing separation of items, mutually agreeing on paperwork [which went pretty simple, for the most part], quarrels at times, figuring out parenting plans that work out for our jumbled college schedules or even long term parenting plans once college isn't happening any more, but also me processing [last year] all that went wrong to help the cycle not repeat in future relationships moving forwards..forgiving the unforgettable that was done in the relationship..constantly working on establishing healthy peaceful boundaries for the sake of the kids [they don't need to go through that, but also deserve to know why]..managing the kids behaviors at time as they process through it..all while trying to manage all the daily routines of life.  

    The truth really is, that we've been separated for a long time [mostly 2 years, but within the past year], with a divorce filing mostly was just technicalities and legalities of it all.  Things haven't been right for a while, but also adding Colin's medical concerns really allowed me to see the true colors [or for me take off the rose colored glasses] before things progressed years further.  Respectfully, I won't go into detail against Mikes character, or mishaps, out of respect.  Most who are close to me already know the truth, and those who are curious can feel free to ask me personally as I'm at a point in my life where I've moved forwards with out any more feelings of hardship of a divorce.  Bottom line, there are just some things that aren't acceptable to do within a marriage, and I hope some day that I never run into the heart ache from it again [twice now].  I absolutely loath divorce as an option, but am also thankful for the option in cases like this when staying does more harm than good.  As Joss Stone song comes to mind that I'm bruised not broken, and I believe on moving upwards not backwards.  They say opposites attract, while that might be the case for some, personally..I don't believe this is the case for me in finding some one long term.  

  Word of advice for those couples who have special needs kids:
Both halves should support each other through all the hard times, research together, listen to each other, share in the little things, share in the grief of it all, appreciate each other even during the bad times, pick the other half up when they're down, but mostly..get to know the hell out of those medical concerns from both parties..don't run from it or have your other half do it all.  Have the courage to face it..together, because that's just the reality of it all.  Face that elephant in the room as it's not going away.  It can or likely will only get bigger the more you ignore it.  That elephant will divide you quickly if you let it, or bring you closer together if you work on it.  The grass isn't greener on the other side, you just let the elephant eat it up!     

Moving forwards, I'm very peacefully happy to be on my own again.  I've done this before and will do it again even with 4 boys to raise.  During this time has also shown me a deeper appreciation for all that my own parents have done for me growing up.  They've gone through so much but still are together over 40 years later.  Sure life isn't perfect, but it is what you make of it.  When times have been getting hard, they've been there to listen to me with an empathic listening ear, love, and understanding which has meant the world to me.  Last time as a single parent we had our quarrels, but now we've come to a deeper understanding and appreciation of each other.  My siblings, and other family members [and friends!!!!], have also been such an amazing support asking, offering suggestions or medical information, and even just offering words of support.  It just took a while to weed out the bad seeds and understand what I really need in my life to progress upwards.  Being the youngest of 6 kids, I'm extremely thankful to have such a large family at a time like this.  Cambryn is back, and better than ever.  I'm at a better place now, and so very thankful for all the supportive people in my life.  With all that has gone on within the past few years, thank you from the bottom of my heart, to all who have taken the time out of their busy schedules to reach out!       

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!  

Color blind? Completely, perhaps?

Lately there has been some comparing going on with notes to other parents with Achromat kids who are full Achromatopsia which means they're entirely cone/rod deficient or to the point that they're so low on these cells that they no longer can't see any colors at all.  This has been in my thought for a long time considering he catches on amazingly well to numbers, counting things with out pointing or using fingers, ABC's, basic shapes to even octagons and more.  Yet, he has always typically struggled with colors.   Why is this?

Lately he has not been able to tell me what colors are what.  A huge thing other parents said to what I was asking about is that he says black is red, or red is black, and yellow is white and virtually no yellow colors have any color to him as he immediately says white unless it's more of an orange or darker yellow.  I think it's because of the shade.  The other parents with full Achromat kids have told me that their kids say the same as well until they were old enough to point at a color scale.  Think about it, if you have no base line of what colors are at all how would you have anything to go off of?  You'd memorize different shade colors as people point to them in order to try to memorize them.  That is what other parents have mentioned to me as well.  It all really does make sense.  After all, the ERG taken during summer resulted with her expressing how low the cells really were to the point where if he does see color it's very minor.

Can you imagine not seeing these magnificent colors?  Ever.

I had this epiphany driving in the car this week with my 2 youngest sons.  I don't recall exactly where we were headed.  It was more of a detour since part of the highway out of where we live was closed due to construction.  I decided to take a back road and drive to the general area that I knew the other entrance to the highway was.  During our back track it offered me time to soak in the color of all the fall leaves transforming into warm reds, oranges, and yellows with almost little to no green leaves as the sign the season was in transition.  It was a very euphoric feeling just meditating in that quick moment of my detour.  Enjoying the view I quickly informed Colin to try to take a look outside and let me know what he sees on the tree's.  That is when it really actually soaked in with me.  What if he can't see this vibrant colors of the earth?  Just as much as he can't even go outside let alone have the window blinds open when it's a beautiful sunny day outside that he can't even enjoy since all he sees is completely white or black and white contours of things around him as he tries to navigate around it all.  Often times he goes completely blind from the sun.  No blues, clouds, etc.  Thank God for modern technology as I've been able to show him what the sky actually looks like from a view that he will never experience it with.  

Only more ERG's as well as genetic testing will confirm where he is at within the vision spectrum of color.  Or if it's progressively going to get worse within time to the point that he'll go completely blind from either that or a detached retina. 

As they say, "just take one day at a time"  

That is all we really can do. 

Carpe Diem and let him see the sights that will be engraved in his mind for years to come!   

 

What if your annual visual reference for fall would be in a grey monochromatic scale?

Gluten intollerance blood work today

Gluten intolerance test is today. This time has allowed me to do a really great vaccuming of the house with out hearing him scream for it to be turned off due to his Aspergers and SPD. Which I typically need to vacuum 2-3 times daily just to stay on top of the crumbs and mess the kids bring and this always sets it back further.  Yesterday, I took Colin out to eat with Braeten and I for a rare [about to be non existent for Colin!] morning breakfast yesterday of his absolute favorite french toast.  He eats such a large portion that he typically is ordered the adults size vs. the kids plate.  Braeten had eggs, bacon, and hashbrowns.  I decided on some steak, shrimp, and salad.  Running around and doing all what I do I need as much energy constantly to stay on top of it all. As no one truely knows what it's like to have a special needs child unless they have one of their own.  It's horrible when you hear those making fun and saying how annoying how special needs people are, for example the guy with Asperger and turrets from American idol who ended up being one of the finale guys on the show but had these 'weird' mannerisms that he couldn't control.  Seriously people, don't make fun of things you don't understand.  Don't judge.  Also, don't judge the parents of a special needs child.  It's not the parenting, it's a neurological and beyond peoples parenting abilities.

Colin yesterday hugged 5 poles before entering Fred Meyers as he always does and if there isn't that repetition as well as soothing to him.  Most people wouldn't have patience or scowl at allowing the child at having such extreme eccentric behaviors, however, with a special needs child you just adapt to loving them and allowing them to continue it so that you can prevent meltdowns and uplift his behavior and mindset.  It really does make a difference.  Yelling, defeats the purpose and makes more damage and lack of trust towards you which trust is vital with a special needs child between caregiver or parent to child.

 On another note, I'm very thankful for what my parents have been doing for all of us.  My mom has  been purchasing vitamins for a few years now with far more expensive ones now to help with the brain, vision, stomach, etc. as well as dropping off some major gluten free groceries from time to time has been a huge support. 

There is plenty more going on.  This is just the iceberg of frustrations.

All of Colins conditions at this time and educational videos related to them