August 26, 2015

Welcome Change

Clayton's welcoming in fall with a snotty nose this week.  But that isn't deterring us from LOVING this weather.  AMAZING.  Oh how I have missed fall.  This is my favorite time of year.

I'm even more grateful that I am feeling like myself again and can hopefully thoroughly enjoy the fall, football and holiday seasons.  My neurologist, who diagnosed the benign tumor on my back has been helping me with some anxiety meds as well.  The cliff notes of her words are that I've had too much stress for too long and need to give my head a break and a chance to restore its normal chemical balance.  The disruption of those normal chemical levels due to so much stress over the last seven years left me with a chemical imbalance that had me exhibiting so many of the physical signs of stress as well as a heightened sensitivity to pain/discomfort.  Her plan is that I stay on this medication for six months to "retrain" my body to hold on to those chemicals naturally not only restoring the correct chemical balance, but maintaining it.  The mind is an incredibly powerful tool that people underestimate.  Understanding what various types of trauma can do to the mind is very important.  Equally important is understanding that the body works as a whole;  it only takes one thing being "off" to set off a chain reaction (such as physical pain, nausea, weight gain/loss, etc.).  Anyhow, I adore my neurologist and am so glad she is in my corner.
I'm being open about all of this because of all the reasons I've said before, plus multiple people have expressed that they wondered how I had coped with everything.  Well...I haven't.  Not really.  I thought I had, but these last few months I have really realized that I haven't.  I have been in constant survival mode and haven't taken the time to cope.  The closest I came was attempting to cut everything out of my life that I feasibly could that caused me stress.  For so long, I was so proud of myself thinking I had managed everything on my own, never needed medication, wasn't depressed, had a good positive outlook and felt blessed in-spite of our horrible circumstances.  I was so focused and proud of myself for not allowing my situation to depress me that I didn't give much thought to the stress build up and the resulting anxiety.  Actions on my part which led up to the last year and a half and particularly to the last few months of my trying to work things out.
So when people wonder how I've done it, know that I didn't.  It's a mistake I would hope others could learn from because the past year and a half for me was pretty rough personally (honestly you can look at me and tell).  Thankfully building our house served as a distraction or I fear it would have been even worse.  It isn't enough to have a good outlook in spite of the hard times or a hard life; the stress is still there and you have to find a way to deal with it.  I will say this though, I have tremendous love for two ladies I worked with during that first year of Clayton's cancer: Gina and Karen.  Going to work with them everyday and laughing with them did help me cope in those early days.  They kept my head above water then and it was because we laughed.  Because honestly the three of us had one of the crumbiest jobs dealing with grumpy people and yet we laughed every day.  And while I don't miss that job in the slightest, I miss laughing with them.
I think my lack of coping with my stress was one reason I was always looking for projects like grad school or the thrift shop we did for the foundation, etc.  I think I was looking for distractions.  Which just made everything worse because nothing was ever more than a band-aid.  But now I have been on this new medicine for about a month and I am finally feeling like myself again.  No more emotional eating.  No desperate search for my next distraction.  Less physical pain.  Less anxiety.  Just me.  I think even Clayton has noticed.  He is going through a SERIOUS mommy phase now and I think its because he's like "yay, my mommy's back".  I mean serious mommy phase.
I definitely have not figured out all the answers and I don't know that I won't find myself back in a similar situation again, but for now I feel great and I feel like me again.  The trick is going to be handling my stress moving forward because Clayton's battles are on going, which means my stress will be too.
So I wish I had some magic wisdom for mom's like me or any mom for that matter, but I don't.  All I have is DO NOT underestimate what your stress can do to your life.  I did.  And I have paid a high price for it in ways people will never know.  So don't be like me and assume that just because you feel blessed and have a positive outlook that all is well.  You have to find a way to work through your stress.  That might mean different things for different people.  For me, our family has made some changes I'll tell you about in another post, but my stress became so severe that I needed the extra help the medicine had to offer.
So just like the trees this fall, I get to shed some of my leaves, rest for the winter and then begin again...

August 23, 2015

New Face

Much like my life, the blog needed a facelift.  So new name and address to make it easier to find and remember, but you can still find your way here using the same ole
OR you can use the new address
Whatever floats your boat.  Either way this is our updated family blog for updates on Clayton where we've been, where we're going, how we've coped and how we're healing.  This is not the life I dreamed of, but it is the one I desperately want to live for.  Hopefully this blog will be filled with all of our new adventures, triumphs, failures and flops.  At the end of the day, this is our tale.  We're authentic...we win some, we lose some, but we are us: the bookworm, the outdoorsman and the special needs shot of awesomeness we call Clayton.


a :  to capture or seize especially after pursuit <catch a thief>
b :  to take or entangle in or as if in a snare <catch fish in a net>
c :  to discover unexpectedly :  find <caught in the act>
d :  
to become suddenly aware of <caught me looking at him>
a :  to take hold of :  seize
b :  to affect suddenly
c :  to grasp and hold on to (something in motion) <catch a fly ball>
d :
  to obtain through effort :  get <catch a ride>
a :  to become affected by

b :  to respond sympathetically to the point of being imbued with <catch the spirit of an occasion>
c :  to be struck by <he caught a bullet in the leg>
d :  to be subjected to :  receive <catch hell>

August 5, 2015

Decisions and Wins

OK.  So it took me some time to sit and blog since my birthday.  I've had too much in my head I had to work out and get straight.  Things like Clayton's school, the question of his therapy services, his primary care doctor situation, my school, George's school...priorities.  I needed to get some things straight.  So on to the updates...
Clayton's last scans from April were good and we scan again in September.  If his September scans are good that will be three years post chemo with clear scans.  That's a milestone.  We will also be doing another stent replacement in September.  We will visit with the Orlando Urologist in October to get a better game plan on his kidney and sometime between September and December we have to find a good week to go to Dallas.  So we are going to have a busy fall.
Which leads me to my decisions.  I had applied to go to grad school through Troy online getting a Master's in History with the thought that I might could teach on the college level and possibly have a schedule that would work with Clayton and provide a second income.  I went through the motions, was accepted and even had my schedule, but ultimately I had to decide it wasn't best.  Sadly, I don't have time, while also focusing on my health, Clayton's medical, Clayton's school, Clayton's therapy and helping George stay on track with his school.  We made the decision years ago that George's job was to work and mine was to care for Clayton.  Which means our goal is for George to finish school and get a better paying job and for me to manage everything Clayton.  So no school for me.  It's hard for me because I hate sitting still.  I would love to travel the country doing something different every few months.  So feeling like I'm sitting still in my current situation always leads to me brainstorming new ideas to mix it up.  None of which work with our reality, but I brainstorm none the less.  So, since I was running out of time to make these decisions, I really had to take the time to sort it out before August.
Then there is Clayton's schooling.  After talking with folks at the county, public school really will not work for Clayton.  They either offer a few hours a week of homebound services or all day school days; one is not enough and the other is too much.  Clayton needs more than the homebound services, but anyone who knows him knows an all day school day won't work for him.  I was semi hopeful they might have something that would work because it would give me a much needed break, but they don't.  So homeschool again it is.  Plus I can't lie, I hate the idea of having to answer to someone anytime we want to keep him out of school.  Some days he could be having a bad day and other days we might want to go on a vacation, who knows, but I have zero interest in answering to a school system for that.  I love the flexibility of homeschooling.  And since I have to stay at home with him anyway...As for people wondering why I "have to" stay home with him...childcare in general is ridiculously costly, imagine childcare for a special needs child like Clayton.  Even on two incomes, we couldn't afford that;  we were having issues with that when I was working.
Which brings us to the next update...Clayton's therapy services.  The Autism center in the area finally opened and we signed Clayton up.  We have done his speech therapy evaluation and his occupational therapy evaluation and are about to start his sessions.  I really like the center so far and am excited for Clayton.  Our insurance covers his sessions 80/20.  Which is decent, but would still be tough with four sessions a week on top of his medical expenses.  But here is the only covers 30 sessions per year.  30  sessions per year when taking 4 sessions per week (2 speech, 2 occupational), you do the math.  Not gonna get us very far.  So as great as the place is and as much as we think we like it, I have no idea how we are going to be able to get him the continued services he needs.  Still working on that one.  But the good news is for now he's in.

Clayton has to be one of the most expensive children in the history of expensive children.  I think it is only fair if God grants us wealth to cover these expenses...just saying.

When you have a kid with whom so much goes wrong it can easily feel like you just can't win.  Cancer, kidney disease, 100 degree scoliosis/kyphosis (twice), autism, non verbal, respiratory issues, MH precautions, I can go on...but you get it.  It's a lot.  A lot of situations in which winning is not the term that comes to mind.  Especially when you have fails like being shunned from your pediatricians office all because as parents we reserve the right to decide what is best for our child.  As I've said before, we choose not to give Clayton full vaccinations.  Quick recap: He had all of his vaccinations up until 3 yrs and had to discontinue them during his cancer treatment.  After much consideration, we decided the best route for us was to pick and choose which vaccinations where necessary risks and which where not.  We have seen enough that we are not comfortable injecting his seemingly sensitive/traumatized body with every vaccination, given that scientists and parents can not seem to agree on their safety.  So we choose to proceed with caution.  Anyhow, we discovered no private practice pediatrician will touch him unless we agree to full vaccinations.  That led us to the Sacred Heart Pediatric Care Center.  But that was really not our cup of tea for multiple reasons.  So it occurred to me that a family practitioner might not feel the same way as a pediatrician.  After all, plenty of adults are walking around not fully vaccinated.  I did have one office tell me no and bam!  Score for Rachel.  After checking out that route and asking the recommendation of a dear physician friend, we found Clayton a LOCAL family practitioner that is happy to give him the vaccinations we are comfortable with and abstain from those we are weary about.  Winning.
I needed that.  Its been a tough few weeks.
Again, my stance on vaccinations is my personal decision.  It is not a fad or decision made for trivial reasons.  Having been with Clayton on every step of his medical journey, I believe he should qualify for a medical exemption due to the sensitive nature of his body and his uncommon reactions to various things.  Some doctors disagree with my decision because he is not currently considered immunocompromised.  However, those doctors don't have to care for him 24/7 if something goes wrong which is why ultimately it is my decision.  And seeing as he is already autistic, that clearly is not my concern so please just don't go there.
As for me, my doctor decided to tell me I had Generalized Anxiety Disorder.  No shit sherlock.  This I know.  Have you met my family?  Anxiety is a common theme.  The problem isn't that I have Generalized Anxiety Disorder, the problem is that I have Generalized Anxiety Disorder and a kid like Clayton.  It's like a twisted joke to have the two...together.  In cases such as these it should be one or the other, not both.  So anyway, after years of Clayton stress, things going downhill, no end in sight, everything with my recent pregnancy and increasing physical symptoms of stress, I have finally gotten some meds.  I am not big on meds; though I don't agree with the stigma around them.  I prefer to manage things naturally if possible.  For a while that worked for me, but eventually things got to be too much.  My neurologist and family practitioner agreed I was showing too many physical symptoms of stress and needed help to correct the chemical imbalance that has resulted from 7 years of extreme stress.  So I'm trying some meds for maybe six months to see if they help.  Lord I hope so.  Again, I hope people have the sense to distinguish between anxiety and depression.  They are completely different.  I have anxiety...and for good reason.  I am not however depressed at all.  I love my life and I want to be present for it.
As for my back, I have a Vertebral Hemangioma.  It is a benign tumor on my spine (T8) that protrudes into my epidural space which consequently causes some of my symptoms.  The majority of these benign tumors are not symptomatic and need no treatment.  Since mine is symptomatic, I am waiting to see a neurosurgeon to see what course of treatment, if any he would like to take.  Since it is a benign tumor though, it will be 2-3 months before I get to see the neurosurgeon.  He seems to be a busy man.  In the mean time, if my symptoms need management, my neurologist can handle that.  If my symptoms get worse, I might can get in to see the neurosurgeon sooner.  So nothing on that front right now.

I think that covers the main updates.  I'll try and post more often!