To 2017 & A Lifestyle To Love

I was really surprised over the holidays when George’s mom expressed that she thought our lifestyle (small house) was only temporary.  Once I considered her words, I realized my mother too had expressed her own doubt at times wondering if we would one day want a larger house if we made larger incomes.  Thinking about this, I realized that if our own mothers think our lifestyle is temporary because of circumstances with Clayton, then most people might.  So I’ll set the record straight.

I cannot say enough with enough passion…George and I LOVE the way we live and the lifestyle we are building for ourselves.  We aren’t fresh out of college deciding to backpack across America or to build a tiny home on wheels.  God willing there are plenty of years ahead for how we live to change, but we aren’t “testing” something out.  We fell into this way of living by accident/necessity with Clayton and his very unique circumstances.  And once again Clayton and all of his awesomeness bestowed a wonderful gift upon our family. 

We found that we wanted a simple life.  We wanted a life with less “things” and more adventures.  We want a life that will focus on the outdoors and family.  We want a small house that requires less time to clean and maintain and simultaneously promotes togetherness with our family.  There are no playrooms, craft rooms or man caves to escape to; instead it is our family together in front of the fireplace or talking while Clayton’s cartoons play in the background.  We don’t want to kill ourselves with the responsibility of a high paying job that makes us sacrifice our well-being, sanity and family time.  Instead we want to follow a path of making a healthy living balanced with healthy stress levels and healthy relationships with each other.  And while we are raised in a world where that idea is mostly scoffed at and seen as a dream, guess what?  It’s not a dream and it’s more than possible.  Furthermore, it doesn’t mean we have no ambitions, if that were true, George would not have just graduated after going back to finish school.  All it means is that we have acquired the perspective to balance the ambitions, health, wants and needs of our family.  And we know that our family is a team, we function together and we put each other first.

Where our perspective came from…

On November 22, 2011, our three-year old son Clayton was diagnosed with stage IV, high risk neuroblastoma (form of pediatric cancer) and we had no idea how long we might have with him.  When something like that happens the things that go through your head ARE NOT:

“I wish I had made more money.”

“I wish I had caught that episode of Grey’s Anatomy.”

“I wish I had spent more time at work.”

“I wish I had stressed over work more.”

“I wish I had a bigger house.”

“I wish I had a fancier car.”

“I wish me and my family wore more designer/popular brand clothing labels.”

“I wish my house was in perfect order.”

“I wish people thought I had it together and my life was grand.”

“I hope people don’t see my flaws.”

“I wish my house was full of antiques.”

No.  Not even close.  What DOES go through your head are things like…

“Dear God, don’t let my kid die.”

“What the hell is happening?”

“How, how the hell did this happen?”

“How much time do we have?”

“Why the hell did I care so much about watching the damn TV that I didn’t give him the attention he deserved.”

“Why the hell did I ever give anything the opportunity to overshadow him…ever.”
“What the hell is wrong with me.”

“Don’t take him from me before I have a chance to be what he deserves.”

“He is the only thing that matters.”

“I promise we will change our ways.”

“I’m never going hear him call me momma”

Nowhere in my list of regrets in those moments and days was there anything pertaining to living a fancy lifestyle or a financially demanding lifestyle.  Because that doesn’t matter.  Not even a little.  I mean sure I like quality things, and I do have quality items, but not at the expense of anything that matters.  And what matters is Clayton and the life we are building with him.  He doesn’t need parents who drive fancy cars or wear name brand clothes or pay a big mortgage on a big house with a playroom or whatever is trending these days.  He needs us.  And he needs us to pay attention to him.  Which sadly is not something our current society emphasizes with technology. 

Where our perspective has taken us…

When we are little we are shown this window to the world in which we are suppose to carve our own niche, but we aren’t always given the chance to consider alternatives.  Instead we are pulled toward this world where mom and dad need to go to work and work like crazy to pay for the house that is way more than they need, over-accessorized cars, iPhones for all, wardrobes to keep up with the Jones’ and the ridiculously priced toys and accessories everyone wants…you know what I’m talking about… golf carts, 4-wheelers, boats, etc.  We are somehow taught or shown that this is what we “need”; That those are the things we are suppose to work towards. 

NO!  NO!  NO!  Those are not the things in life that we “need” to work towards.  And if it weren’t for Clayton, George and I would probably be chugging along working towards those things too.  But Clayton taught us the secret to life…NONE OF THAT SHIT MATTERS!  And so we choose to take the path less traveled.  The one that we feel is more rewarding.  I apologize if this sounds as though I am judging anyone.  All I can say is that I am judging a lifestyle I once thought was my future.  A lifestyle that I thank God everyday, I learned early I didn’t need or want.  

So now as we start this new year, we are more settled than ever into our new and improved lifestyle of changing our views of what we “need” and focusing on what really matters.  We were in survival mode for so long after Clayton’s cancer diagnosis.  Then the past couple of years we were gifted with a little more time than normal to think about what we wanted in life and what direction we wanted our lives to take and how life with Clayton had come to shape us.  What we found is that our lives had miraculously lead us to this perfect-for-us building block to build off of. 

So to our moms (and I’m sure plenty of other people) who don’t really understand how we can be satisfied for a lifetime with some of the ways in which we are choosing to live…All I can say is we are happy.  We have almost no clutter bogging us down; our roots are fairly shallow and give us the freedom to explore and live a life of adventures; we have found joy in our lives while providing for our basic needs and those needs of Clayton and we manage to sneak in a few splurges here and there just to add a little extra dose of happy without stressing us out in anyway.  Our minds, spirits and our time are freer than they have ever been and we are finally decompressing from our journey.  And while we are enormously flawed human beings, we found a way of living that leaves us more grateful for our gifts, closer to God and closer to each other.  We would not trade where we are for anything and have no desire to ever revert to any other lifestyle. 

To figure out if your life works for you you have to ask yourself a few things:

• Is this lifestyle I think I want worth the sacrifices I will have to make to have it?
• What am I sacrificing to have this life? Time with my kids? Having kids? Time with my family? My health by being chronically overstressed?  Family values I hold dear? My sanity and peace of mind?
• Do these things I think I "need" really make me happy or are they just a bandaid for a deeper problem or insecurity?

Maybe you'll find your meant for the life your trying to live...or maybe you'll think a little more about what you believe to be most important in your limited time on this earth.  

Whoever you may be, peace and love and joy to you and yours.  Without our struggles, we would not also feel the immense joy we have been blessed with.  So here’s to 2017 being full of new adventures and less “stuff”…

Speaking With Clayton

Clayton is ridiculously smart.  Waaayyyyyy smarter than anyone ever gives him credit for.  George and I included.  He blows our mind on a regular basis with the things he reveals to us that he understands that we never realized.  George and I are always having to remind ourselves to watch what we say because he is ALWAYS listening.  When you think he's not listening...he is.  And his hearing is impeccable.
We started realizing just how much was going on inside our nearly silent child's mind about three years ago.  He started using his iPad to match words with things.  For example, if it started raining outside, he would walk to the window and find something about it raining on the iPad.  Or after his dental surgery a couple years back as he was laying in recovery, he started playing a Sesame street video about visiting the dentist.  While on vacation with my parents, he started getting a stomach bug and before we knew what was going on, he used his iPad to tell us all he didn't feel good.  This let us know that he was aware of things around him, but since then, with the growth of his speech we have also seen a growth in revelations about his personality through things he "says" through his iPad and videos on it.  He now targets specific phrases in his videos to tell us things.  George and I feel like the grinch where his heart grows.  Every time Clayton "tells" us something and reveals himself to us, our hearts grow.  I swear we can feel it too.  Because that's the thing... Clayton isn't just telling us things, but he is showing us who he is.
Here are a few of our favorite recent moments...

While cruising in the golf cart at Fort Wilderness, he wanted to go shopping two different times/days and we told him no to which he "said" through video clips...

1st time..."Disappointed"

2nd time..."I don't like you very much... but I like you"  I'm guessing I was the bad cop here?

And then recently, after days of being sick, he was ready to get out of the house, but I was sick and told him no, to which he responded through a video clip,

"But mother, I don't want to be cooped up all day."

I love these moments because it tells me so much about him.  (A) it tells be how dang sassy he is (B) it tells me how intensely complicated his mind is that he is able to recognize the the meaning of these phrases and the situations to which they apply and recall exactly where they are when he needs them.  I mean seriously, he has this enormous arsenal of phrases memorized to know where they are within his video collection when he needs them...it is crazy!

I have been meaning to talk more about this side of Clayton and our lives and haven't gotten to it yet and then we watched a 20/20 episode,  "Finding Owen: A Boy's Story", on Thanksgiving that had so many similarities it was eerie and pushed me to go ahead and show this side of our lives.  I think it is important for people to see this side of children like Clayton and recognize that just because they are different (and sometimes nonverbal) does not mean their brains are empty and they are void of feelings.  There is so much there.  And these children have so much joy to offer to those around them.

I have never been around an autistic child before Clayton and even now I am only around him, so when I see or hear these stories I am immensely intrigued.  I love hearing about kids similar to Clayton.  Especially learning how children like him interact with the world around them because it helps me to know if I'm on the right path or not.  Fortunately, I feel like I am.  I make a point to surround him with things he loves not the things I love and through the stories I have heard this is super important.  I also know from my own experience that while Clayton might not pay attention to me or other people, he will pay attention to his "characters".  So I use that to help him learn as best I can.  I also have been reassured through other's experiences that we are right in monitoring what he watches and what "characters" he has access to is important as well.  For example, George and I do not encourage SpongeBob and do not allow it at the house on TV or through toys.  If he is going to form attachment to and love his characters so much we want to open doors to the right characters and close doors to the wrong ones.

Anyhow, just a snippet of life with Clayton...

Fall Has Come...

The first day of fall...oh how I love this time of year.  Now matter what is going on it always makes me feel peaceful.

Oranges, golds and reds...mums just waiting to bloom and pumpkins of every shape, size and color...

Been adding some fall touches to the house...

Even Clayton's room is getting some  Fall/October love...

I raided Target's Halloween clearance last year and got three of these jack-o-lanterns. They are all slightly different and while I normally like real, natural decorations, I thought they were a perfect festive nightlight for Autumn for the wee man's room.  He loves little festive touches whatever the holiday.

FYI... Target has similar jack-o-lanterns this year too.  I scored mine after Halloween last year for $2.38 each!  Totally worth the smile they put on his face.

I was just telling my sister the other day, as I have George many times, that I am in this unique position of having a child that for the most part never has to grow up like the rest of us.  He doesn't have to grow into adult responsibilities, worries or burdens.  Not the way the rest of us do.  So I am in this ridiculously fun position of getting to build him a life that is as whimsical and magical as he can imagine.  That is such a gift for me as a mother I think.  Clayton's health robbed us of so much time, and God is giving it back to us in this challenging, but extraordinary way.

I hope I can live to 100+ making each day for Clayton more special and magical than the last.  Which is also hoping Clayton has a long life too.

Which brings me to a specific prayer request...Please pray whenever it crosses your mind for Clayton to have a long peaceful life, but for him to never be left alone on this earth without someone to love him and care for him the way he deserves.

Amen

Craziness, Campers and Carly

Cancer scans. Dog breeding. Camper renovation. One month summer semester coming to a close. DIY landscaping and house projects.

That's just from the last two weeks. We will be doing more scans to investigate liver lesions in coming weeks and George's summer session wrapped up so we have the rest of the summer free.  Been working on painting lattice under house last week and trying to landscape the backyard...by myself...because George doesn't care about a nice looking yard...not even little bit.  And this heat has been miserable so my progress has been sloowww.  But I've made some...

It isn't just about having a nice looking yard though.  It's about having a Clayton proof yard.  Clayton doesn't understand things like dog poop is gross; so he doesn't watch to avoid it on the ground and if he steps in it he doesn't associate it with gross and will wipe it off with his hands or rub the bottom of his foot on his other leg, etc.  You can see how that can get really not fun for me.  So it's 30% about working towards a well groomed yard and 70% about designing designated dog-poop free Clayton play areas and paths.  It's taken two years to get as far as I have, but I'll keep chipping away a little at a time.

Macy came in heat so we've been spending a lot of time at her boyfriend's house.  So.Excited.For.Puppies.

Aside from making puppies the most exciting thing has been our camper renovation.  I'm almost done stripping factory decals, then a good cleaning and roughing up and then PAINT!  Already got my paint and waiting on good weather next week.  Here's my color scheme (paint chips and our new awning):

I like classic so that's what I'm going with.  Going for this pattern with my colors.  

As you can see the old awning was shot...

The new awning is such better quality and more appealing aesthetically too.  Some local folks helped us find an affordable option since our finances are super strict.  It was actually a Sunbrella camper awning on clearance from a past season. So it ended up costing less than ordering the fabric alone would have.  Then when the size wasn't just right, they altered it in no time. 

I have also been reading Carly's Voice and it is great.  Carly and Clayton are nothing alike, yet with so much in common.  I read her dad's words and I hear my own thoughts as a parent to a child with autism.  I know there are plenty of families with Autism around, but I don't personally know them, so thus far our autism journey has been as lonely for me as our cancer journey once was.  Reading this book is such a comfort.  Here are a few moments from the book that spoke to our life in so many ways:

It was irritating, destructive and unstoppable. "Ssshhhhh," I would say, but it came out more like, "Stop, God damn it."

What simple solution could there be to stop a thirty-pound child from hurtling her body full force against a wall?

Carly couldn't engage in many of the diagnostic tests they tried.  She didn't follow multistep instructions or tasks nor could she speak to explain what was going on inside her body.

Rather than enjoying Carly's childhood, we were consumed by the tedious task of pushing her from one doctor to the next.

I was beginning to feel like Haiti. Or Sri Lanka. A place where natural disasters just start coming and don't have the good sense to stop.

We rejoiced at small wins such as her learning how to hold a sippy cup, sit still on a chair for ten minutes during music time and sort blocks by color.

It felt like a humiliating medical procedure with our private parts exposed in the chilled air of the examination room as he pored over our tax returns and reviewed the expenses for raising Carly.

But over time, even these simple words disappeared.  I was thoroughly disheartened when meaningful words where mastered one week, then lost the next.

There was some relief in the delusion that she didn't understand the sights and sounds swirling around her.  But Tammy and I always felt as if we were being shunned by a clique.

Mothers are suppose to have limitless patience, but I know all too well that this isn't true.  Tammy was drained.

Though my life often felt like I was bailing water from a foundering vessel with a teacup, I believed that if I was determined enough, consistent enough, patient enough---I could bring order to the chaos.

It was like living with a raccoon in the house and there were no signs of her growing out of it.

There was so much I wanted for her, simple things, impossible things.

It seemed like there was always potential for a little more bad news, a few more challenges.

Autism was a thief...It stole energy and money and patience.

We are not part of the autistic child's domain, nor are we fully part of society.

This sense of self-imposed isolation was often a topic of conversation between Tammy and me.

I'm not even halfway yet and this book just speaks to my heart.

I only know how this books reads for me with the challenges in my life, but I would think it would be a good read for anyone hoping to better understand the world of Autism.  If you do read the book I will disclose now that one of the biggest differences between Carly and Clayton is that Clayton has always been happy and always laughed (of course he has grumpy days and can have extreme tantrums but generally speaking, happy).  I guess that was our gift for his always being sick too.

Meet Clayton

Let me start with a disclaimer...Don't be stupid and go Google the information I am about to disclose and use odd, out-dated and misguided information floating around on the web to make determinations about my child or place limitations on him.  I will give you all the information about the subject and what it means for Clayton and what we know right here on the blog and I will point you towards credible resources of outside information for all those who want to know more.  So please don't be stupid and insult my child by looking at photos or reading misinformation and using it to shape your perception of Clayton.  I am determined to protect my son and not allow ignorance and misinformation to limit him.  Therefore, in disclosing this closely held secret of mine, I am also providing credible resources on the subject.  

As a second disclaimer, I am letting the universe know that this is my conversation about the subject.  I have NO desire and am NOT willing to discuss this with anyone.  What you see below is all I have to give for now.  There is nothing left to know beyond this, but my feelings and thoughts will not be discussed outside of this blog unless I choose to bring it up.  I ask that you please respect that whether you understand it or not.

Meet Clayton...Clayton has Sotos Syndrome.

This is incredibly hard for me and a very very long time coming.  I have been keeping this in for years now.  It has been mine and George's secret because I needed it to be.  I needed to give Clayton a chance to see where he was headed before I put a name to his genetic mutation for the world to see.  I needed to give Clayton a chance to see how little this genetic mutation might influence his life.  I needed to see what would be...what could be.  At least for a little while.  I feel like I have a decent idea now.  Enough that I am willing to finally share this information with our friends and family...and the strangers reading this blog. (this is even the first time our parents are getting this information)

When I was pregnant with Clayton certain complications were indicators of a potential underlying syndrome, but the doctors ran tests including an amniocentesis and found nothing.  When Clayton was born the doctors did a more thorough genetic work up while he was in the NICU and again they found nothing.  At that time, George and I didn't necessarily know anything was amiss, but we knew the doctors were still curious.  Eventually we came across a doctor that had us do two tests to test for two potential disorders.  One was a blood tests for a disorder that came back negative and the other was a bone density test that had the results come back a certain way would have indicated Sotos Syndrome. The results did not indicate Sotos Syndrome.  Moving forward the insurance would not cover further testing so everything was just put on pause (the blood test for Sotos would have cost thousands without insurance).  Once Clayton was diagnosed with cancer, insurance once again covered testing.  So the doctors ran blood tests for a few items to check.  A few months later while sitting in the Oncology Infusion Clinic at USACW, the geneticist found us and gave us the results.  We were in a room full of people and in the middle of a cancer battle and just couldn't quite focus on what we had been told.  So we said nothing.

Slowly over the coming months, we talked it over with each other and had a real conversion with the geneticist.  I told George I needed time with this information.  I was worried people wouldn't understand something so unfamiliar.  If I say Autism, people know enough not to feel the need to Google it.  If I say Down Syndrome, again people know enough not to feel the need to Google it.  If I say Sotos, people are going to be like, "what?".  So for years we have just told people Clayton had Autism.  It was the easiest thing to do.  And not a lie.  Sotos causes learning disabilities that can sometimes take on the characteristics of Autism.  So Clayton IS Autistic, but it is a symptom of the Sotos.

So why the secrecy?  I guess that's a two part answer.

Part I: People aren't always smart.  They don't always know how to weed out the credible information from the crap.  Simply put, I did not want people using outdated, misguided, misinformation or photos to form perceptions or place limits on my child.  I feared as soon as folks started Googling Sotos that would start happening.  I feel like I was protecting my child and giving him a chance to prove himself and what he was capable off without any stigmas.

Part II: Maybe my secrecy with this doesn't make sense to some people...and guess what? it doesn't have to.  But for me, acknowledging this out loud to the world is like accepting all of the things Clayton will never have.  All of the things George and I will never have with Clayton.  As a parent that is heart-breaking.  Heart-breaking in a way that unless you have a child in a similar situation you can never know how gut-wrenching it truly is.  Eventually I will elaborate on this one in another post.

That said, Clayton is this bundle of innocence and pureness that this world is missing and I am so lucky he is in my life and so blessed to call him mine.  Life with Clayton makes me feel sorry for people who won't get to grow old being witness to this type of innocence everyday.  I think we all need that.

So what is Sotos Syndrome?

Below I'll introduce everyone to Sotos Syndrome and tell you all the ways it has influenced/affected Clayton's life so far.  It will bring some things full circle and show the connections between his various challenges.


Sotos Syndrome is a rare genetic mutation characterized by excessive physical growth in the early years of life.  Sometimes called cerebral gigantism (large head, large forehead) as well.  In addition to physical overgrowth, Sotos often affects muscle tone, speech, motor skills, cognitive and social development.  The result can be a child who looks older and acts younger.  Often times in late childhood, the gap between children with Sotos and those without Sotos begins to close.  Sotos plays a large role in developmental timing and many adults with Sotos fall within the normal ranges of size and intellect.  Roughly 95% of cases are from families with no history of Sotos.

Below is a list of characteristics/features associated with Sotos and their rate of occurrence.  I've highlighted the features we know Clayton to have and marked through the ones we know he does not have.  Those characteristics not highlighted or marked through are still possibilities.

Features seen in most children (80%-100%)

• Macrocrania (large skull) without megalencephaly (large brain) no mention of a small brain
• Dolichocephaly (high, narrow skull) I don't think so
• Characteristic structural changes in the brain on MRI (extra fluid, midline changes)
• Prominent forehead, “receding hairline”
• Apparent hypertelorism (eyes look wide-spaced despite normal measurement)
• Rosy coloring over the cheeks and nose
• High arched palate (roof of mouth is narrow and arched upward)
• Increased birth length and weight
• Excessive growth in childhood
• Disproportionately large hands and feet they are BIG, but I don't know about disproportionate?
• Low muscle tone one doctor said he had this which makes no sense to us because every doctor/nurse ever has commented how strong he is?
• Developmental delay in the form of Autism
• Expressive language delay

Features seen in the majority (60%-80%)

• Advanced bone age (above 97th percentile)
• Premature tooth eruption, soft enamel this combined with his chemo was a disaster
• Poor fine motor control odd because some fine motor skills are poor and others not?
• Down-slanting palpebral fissues or “antimongoloid slant” (eye openings are lower in outer corners than by nose) one doctor said he did 
• Prominent, pointed chin I think his chin is a little pointy
• I.Q. in the normal range (>70 I.Q.) NO IDEA YET So far he is smart, but silent :)
• Learning disabilities
• Frequent upper respiratory infections
• Behavioral disturbance (anxiety, depression, phobias, sleep disturbance, tantrums, irritability, stereotypies, inappropriate speech, withdrawal, hyperactivity)

Features seen in the minority (under 50%)

• Hyperbilirubinemia (newborn jaundice) Very mild
• Persistent feeding difficulties and / or reflux
• Disclocated hips or club feet
• Nystagmus, strabismus (eye movement or focusing problems)
• Autonomic dysfunction (flushing excessive sweating, poor temperature control)
• Seizures
• Constipation, megacolon
• Scoliosis (curvature of the spine)severe
• Heart or kidney defects Murmur and enlarged left ventricle, lots of kidney problems

Occasional or possibly associated features

• Abnormal EEG
• Glucose intolerance (pre-diabetes) there was one episode in Texas that made us wonder if diabetes will be an issue in the future.  Just had another low blood sugar episode in June.
• Thyroid disorders
• Hemihypertrophy (uneven limb length or body mass)
• Neoplasms (tumors and cancers)

While Sotos is not a fatal diagnosis, in Clayton's case, the features of his Sotos such as respiratory difficulties, kidney disease and cancer are what present the life threatening challenges.


Sources for the curious:

• http://sotossyndrome.org/sotos-syndrome
• https://ghr.nlm.nih.gov/condition/sotos-syndrome

And now you know...

I'll come back soon with posts about the things we've had to accept Clayton will never have and as a result we will never have; as well as an update on how the geneticist feels about Clayton's progress.

Where We've Been...Where We're Going

While 2011-2013 were some of the toughest years for Clayton, 2013-2015 were the toughest years for me personally.  I found myself reeling from the repercussions of all we had been through.  Something I have openly talked about before.  I have now been on my anti anxiety meds for four months and I am truly feeling much more like myself.  The worries that were consuming my life over the last two years I can once again handle in a normal way.  The physical pain that has consumed my body has eased, but not completely dissipated.  The neurologist expected that though she found the source of some of my pain, that as the anxiety medicine corrected the over utilized chemicals in my brain that most of my pain would subside since the chemical imbalance was responsible for the fact that I could feel so much of the pain I was feeling.  So I am optimistic that life is slowly getting back to normal.

Clayton is doing very well. He turned 7 in November!  Craziest 7 years of my life!!!

We have an upcoming trip to Dallas to see his dentist and orthopedic surgeon.  Over November and December we checked in with his nephrologist, pulmonologist and oncologist and got good reports from everyone.  While we did not do cancer scans, we did lab work and a physical exam and the oncologist said all looks well.  We will do scans in a couple of months.  As far has his kidney goes, we are still stumped.  This time last year we were having weekly checks and being prepped to go on the transplant list and now nothing.  His nephrologist's words at our last visit were "don't kick a skunk".  Translation, this is a blessing, don't question it. He literally said he had no explanation.  So we'll keep doing what we're doing and asking for prayers and hopefully this sweet boy can make it to his teens or beyond before ever needing that transplant.  No way to know...For now we are just greatful.

Pretty sure Clayton had a great Christmas as he was able to further round out his Pixar Cars collection.  His all time favorite thing.  An unexpected thing that happened over the holidays was that he started showing an interest in Star Wars.  I think it all started from Phineas and Ferb's Star Wars episode and the fact that Disney XD has Star Wars Rebels cartoons so he sees the previews.  But he is getting into it for sure.  He even picked out a mini Darth Vader and Luke at Target.  He seems to like Darth Vader best.  And my nephew got a R2-D2 at Christmas that Clayton was really into as well.  This new interests makes me feel like he's growing up and maturing slightly. :((: 

He keeps growing and developing and his list of words is steadily expanding.  It's crazy that for so long I longed to hear him say "mama" and then the way it happened was so gradual that while I noticed, it wasn't the reaction I had always anticipated.  2015 was definitely his year for words though.  He has made huge strides.  He even spent the holidays saying "ho ho ho terry tismas". That's not a typo, that's how he says it. :)

He just started saying "hey" this past week, but has had bye-bye mastered for a while.  He is also starting to string words together making phrases and short sentences.  He doesn't do it all the time, but he does it.  His "go" and "stop" are the freaking cutest thing EVER!

All in all, we are doing pretty well.  We also snuck in a trip to Disney this past October in our camper.  Oh yes, I'm not sure I ever revealed our camper before?  Well last February we used our tax return to get a small 2005 16 ft camper off of Craigslist for $3500.  It needed/needs a little TLC on the exterior like caulking and removing and resealing one window, but there was no major water damage and the inside was in pristine condition from a clean family so we jumped in.  We needed an inexpensive way for our family to get away now and then and have family time.  We have too much stress in our lives not to take breaks from time to time and since hotels, condos, cabins, resorts, etc. aren't in our budget, we had to look for an alternative.  And we found it in our little camper.  I plan on "glamping" it up gradually.  Using fabric I already had, I have already recovered the cushions and my mom sewed new curtains and I'm painting the walls hoping we can one day replace it with beadboard and make a sweet little cottage style camper out of it.  Like everything in our life it's a slow process.  But it's paid for, not a money pit and as long as we take care of it, will be able to provide us with lots of family fun for many years.

Clayton LOVES the camper.  It is definitely HIS camper.  And he loves getting away with us and having us all to himself with no distractions. 

So back to the Disney trip...we had a great time, but admittedly it was a long trip so next time we'll do five days instead of seven.  We were determined not to have a vacation that was a lot of "work" as everyone knows Disney can be, so we had a lot more downtime then we needed.  We used Disney rewards points to pay for our stay and tickets.  Our campsite cost less then $500 for our stay.  Beyond our stay at Disney's Fort Wilderness, we went to the Mickey's Not So Scary Halloween Party and had one day of hopper passes (which we only used at Magic Kingdom).  We realized Magic Kingdom had the most for Clayton and it was just a boat ride away, so we didn't stray from there even though we had planned on going to Animal Kingdom too.  Clayton rode the barnstormer like 5 times, Peter Pan twice, thunder mountain once and seven dwarfs mine train two or three times.  The boy likes him some roller coasters.  We had to try and stick to the milder ones for him though and we worked hard to position him and our arms in a way that protected him back.  Totally worth it though!  We also visited the other resorts to take advantage of their fun offerings like Radiator Springs...Clayton's favorite.

Oh and for the Halloween Party I was Mike Wasowski, George was Scott Squibbles aka Squishy and Clayton was Sully.  And the earmuffs you see in the pics were something I have thought about getting for a while and I took the plunge when I read about another mom using them for her autistic child at Disney.  They worked great and made everything more manageable for Clayton.  He would not take them off! They helped eased his anxieties for sure.

Last, but not least, we've also been chipping away at the house.  In the year and a half since we moved in, the only thing we have done to the inside is brick our fireplace and add cabinets in the laundry room.  We've mostly been working on the exterior.  Over the past year and a half, we've managed to finish caulking the exterior of the house, stained the two porches, covered the back porch, as of Thanksgiving, we finally have the whole exterior of the house painted and to my huge relief as of Christmas we have added the lattice around the bottom of the house between the beams.  In between all of that we fenced our back yard, built a permanent chicken coop and run, got our garden area squared away, made a playground for Clayton and are continually working on landscaping our backyard (most of which is necessary because it is on a slope or at the bottom of a hill and so we have to landscape properly to prevent erosion/washing away, etc.  All of this we are doing on a pay as we go basis though so we can only do so much at a time.  I'm pretty excited that this next week or so we are finally going to start covering our front porch!!!  Thank you Jesus!  That has been a long time coming.

But now comes a new year and the opportunity for well organized changes.  Obviously changes can be made whenever, but I think there is something to feeling like changes are organized by the new year and a clean slate.  So we are definitely making changes.  We have gradually made changes in our lives since Clayton's cancer, but this year will be the year of swift and dramatic changes in our lives.  Things from how we eat to how we live.  So I'm excited for change and moving forward!

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 kicker...insurance 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 then...ba- 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!

Surprise...

So, we're in shock.  This is a HUGE unplanned SURPRISE.  It is very early, but we couldn't keep this secret from our immediate family and we knew they wouldn't be able to keep it to themselves for long, so we decided to go ahead and announce it on our own terms.  My due date should be around December 4th.  We are obviously still in the miscarriage high risk zone of the first trimester, but we decided to share in spite of that.  We decided that no matter what happens, this was part of our story with Clayton and we had no reason for secrecy.  If for some reason this pregnancy does not work out than at the very least some of our family might now have some answers they've been wanting to know and George and I might find a few answers ourselves.  We are whole-heartedly along for the ride of whatever master plan He has waiting for us.

I was alone when I found out and quickly became hysterical telling George I needed him home.  Once he got home, I couldn't even tell him.  I just sat on the edge of the bed crying pointing at the bathroom.  He kind of laughed when he saw the tests everywhere.  He handled it much better than I did.  Apparently, he had already told someone he suspected as much.

We have talked about this for years.  I know some folks have wondered since it's been nearly seven years since Clayton.  It has been a very delicate subject for me.  I have always felt like with Clayton, being Clayton, I "couldn't" have another child even if I wanted to.  He demanded so much.  And I am happy to meet those demands.  So even though we have considered the idea, we have never felt free to make that choice.  Now I've broken two of my own rules.  In discussing it, we knew if we were going to, it would be in the next couple years, but I told myself I would not be pregnant for our fall Disney trip and Clayton would have to be a full 3 years NED.  We are a couple months from 3 years NED, but we won't do his tests until September.  And if all goes well, I'll be 7 months in Disney now.  All of which is less than ideal to me.  But I keep telling myself two things...(A)  For it to happen now might be a sign that with all we have going on with Clayton, this is our only window and so God rushed things along and (B) George was willing to do whatever I wanted, but I was never able to make up my mind, so this way, God showed us His decision, which brings us back to (A).

So why was I crying?  Well, when I took the test, I glanced at it as I set it on the counter only to see that the lines were starting to form already.  Mind. Blown.  But I didn't have a chance to watch it change because the dog had peed in the house and I was off to clean it up before Clayton went to sliding.  Ironically, the dog is in heat right now; poor thing has trouble holding in her pee since she's been this way.  So when I got back and saw the positive results, I immediately looked at Clayton and burst into tears.  It has finally started to feel like he and I have a handle on things.  We can do so much on our own now.  The idea of throwing another child in there just seemed to ruin that.  I didn't want anything to take away from Clayton.  He runs our little world and we let him.  This would change everything.  The idea of taking anything away from him just broke my heart, he deserves all of us.

Next there was an immediate flood of anxiety.  Crap can I have a healthy baby...will I be healthy...can I make it through labor and delivery...aww shit.  My first pregnancy was anxiety ridden from the beginning (but especially from 14 weeks onward) and I can't foresee this one being much different.  The last seven years have given me a lot to be anxious about.

On that subject I know there will be some people who think we are crazy or irresponsible for this to happen given everything with Clayton.  I know that whether folks are positive or negative about this most folks will wonder in the back of their mind about the health of this baby.  So let me say this...We aren't stupid.  We know due to our first experience and every day since that we might be in for a lot of heartbreak.  And what we ask is that if you are negative or pessimistic about this life event of ours, please keep it to yourself.  It's enough that I feel inadequate on my own as a mother-to-be, I really will not be tolerant of any outside negativity.  One of the most important things for me will be to suppress my fears and anxiety throughout this and those anxieties will be challenge enough without the ( possibly unintentional, but still) hurtful thoughts of others.  Because know matter what people think, I can say that we have already thought about it and whether someone might realize it or not it is hurtful to me.  Like I said, I have always been sensitive with the idea of another child.  The negative thoughts of others are why.  Not because I care what folks think, but because those same thoughts swim in my mind everyday, I don't need to be reminded of them by outsiders.  In fact for as much time as possible throughout this pregnancy, I am going to be trying to forget them when it isn't absolutely necessary to bring them up.  I aim to be as stress free and healthy as possible for this pregnancy.  So even if you are expressing your concerns out of love, don't.  There is not a concern anyone could have I haven't already had, plus a million more.  What we need is positivity and prayers.  Please just pray that this will be a healthy baby and that I will be healthy throughout this and nothing will happen to me so I can still be here for Clayton during and after.  I mean it, we desperately need those two prayers!  

I do want to point out to some of those that are concerned, that there are plenty of families who have had a child with health concerns and who have still gone on to have heathy children.  We have always been told there was no genetic fault from George or I with Clayton's challenges.  A random gene mutation is responsible for everything from his learning challenges to his severe medical needs.  Which by the way we adore his learning challenges.  They only make folks love him more.  We would not trade those for anything.  It is only the medical stuff we could do without.  Even some of the medical would be ok, just not all of it.  We have been exhausted from it all and it has definitely been taking its toll lately.  But that's another post entirely.

Since we did not knowingly make this decision, we have a lot to figure.  But we'll figure it out.  Thank God we are at least settled in our new house and George will be over half way to his degree when the baby comes. When the baby comes should be interesting enough because it will be in the middle of George's final exams for school.  Poor guy, he's never gonna get to sleep.

All of that said, I have grown more excited about it since finding out.  All part of my anti-anxiety plan.  Focus on the fun stuff...and lots of reading to distract myself.  It's funny because Clayton is both the number one reason I don't want another child and the number one reason I do.  Such a tug of emotions.  The idea of him having a buddy makes me ecstatic!  I think that for kids like Clayton, siblings are important and beneficial in every way.  I just have to get past the idea, that Clayton won't have all of me now.  I also think the timing of Clayton's development with this baby's could be extremely helpful to him as far as communicating and progression goes.  There is so much good that can come from this if we can get past all the shock and worry.  Shock is an understatement.  I made George go get more pregnancy tests and a different brand just to be sure there wasn't some fluke.  I really and truly could not believe it.

So anyway, SURPRISE! And please, please, please pray for our family with this next chapter.  

The Elephant On My Chest

Days like yesterday leave me feeling like someone or something...maybe an elephant...is standing on my chest.  Aside from being emotionally spent, I literally just feel this huge weight.  It's all a horrible cycle.  Clearly I'm not afraid to go above and beyond for Clayton.  Been there, done that.  But at some point I get hopeful that there will just be peace.  And then we find out his kidney it progressively moving in the direction of end stage renal failure.  This was our number one concern since he was in utero.  BUT then he got cancer, his scoliosis got worse, he began having respiratory concerns, etc. and we thought maybe that kidney will keep kicking.  It was doing so well.  And had made it through so much. After all, weren't all those challenges enough?  Couldn't he get a "get out of jail free" pass in the kidney department.  

Of course not.  That would be too easy...and well, easy just wouldn't be our style.

Then after confirming and clarifying things yesterday with the doctors, I am of course thinking of Clayton, but I start thinking of me too.  I lost my social life long ago...about the time Clayton was born.  I've lost touch with my girlfriends from grade school and college.  I rarely ever do anything for me.  No manny-pedis or movie nights or music concerts or football games or casino visits or whatever else folks do for fun these days.  Even gave up my chance of having a career.  And all of that was ok.  I adapted.  I'm a chameleon like that.  I changed to better suit my life with Clayton.  Even building ourselves a small house in the country, getting some chickens and building a dream of being a homesteader.  And I LOVE it.  Every. Single. Bit of it.  It is a life that without Clayton I likely would not have.  Clayton leading me down this path is the biggest blessing...next to him of course.  I LOVE my life and wouldn't trade it.  I relish in the joys of living simply.  I adore learning and practicing lost skills that so many of our grandparents practiced and so many of my generation and our parents have brushed to the side.  I love feeding my chickens every morning, checking for fresh eggs, watching my chickens (hilarious), watching the pup and the rooster play ( oh yes...even more hilarious), planning my gardens, canning, making my own homemade peanut butter or almond butter or bone broths, finding new ways to cook whole foods, learning to process our own meat, learning to make the most of the land we live on, respecting the land we live on...all of it.  It is my life.  I love it.  I am beyond blessed to have it.  I wouldn't have it any other way.  I am truly learning to embrace what is important and disregard what really doesn't matter.  Why this spill about how I love my simple life?

Because when learning what is coming, I think about Clayton yes...But then I think about me.  I think about again being ripped away from this life I have built and being once again displaced in another city, our family again split up and ripped away from my lovely little life I love so much.  

And then I feel like a jackass for being so selfish to think about myself that way.  And then I justify it to myself saying better to think selfishly than act selfishly.  And then I just feel like a jackass again for trying to justify my selfishness to myself at all.  And it just becomes this anxiety ridden cycle of feeling devastated, selfish, guilty.

For some reason I just feel like we've been through enough to the point that there should be an end to it all and yet there never is.  It just keeps going and going.  And I'm not talking about little things like doctor visits, labs or even trips to dallas.  I'm talking about big things.  It was major kidney stuff when he was born and for his whole first year and a half.  Then cancer right after his 3rd birthday.  Then a massive orthopedic undertaking right before his 5th birthday and now right after his 6th birthday we are back to major kidney stuff.  And of course there are the autism challenges and respiratory issues amidst all of the above.  This all takes a toll on us as a family, but there is also a huge toll it takes on each of us as individuals.  It does take a lot of effort to be a family when there is so much time to grow apart being strewn out with hundreds of miles between us for extended periods of time, but I think there is also a question of the effort it takes to stay sane when you constantly feel like you are losing yourself to having to fight another health battle.  We keep trying to move forward together and individually and we keep getting set back.  It's like George going back to school to finish his four year degree.  He just got started this fall and now this.  But we are going to press on and try like hec not to let this deter his end goal.  It's hard though.  When there is constantly something working against you trying to hold things together or find progress amidst the chaos, keeping your sanity even partially intact seems nearly impossible.  And I've said before it can be hard watching others move forward in their lives when you feel like your just stuck all the time.  It feels like crap, if we didn't have our challenges we could be doing those things to.  But we do, so we can't.

I try like mad to think of the wonderful blessings we have.  Like our house.  That is a HUGE accomplishment.  George is just over 30 and me just under 30 and we have already built our own house ourselves.  That is massive.  And having had the timing work out so perfectly that we had the opportunity to build it between our ortho problems and our kidney problems is such a blessing.  We also got Clayton a puppy in July.  Without siblings and much socialization, he desperately needed a companion.  And the timing between getting in the house and our kidney problems again worked out to be such a blessing having given us time to have her go through her puppy months with me and Clayton around all the time and get her house trained before she is left alone with George all the time while Clayton and I are away.  So we have gotten to move forward is some ways and I just keep trying to think of those and stay positive.  And appreciative.

This non-stop fight-for-your life roller coaster we seem to be on often just leaves us feeling like everything is closing in.  Like we can't do anything right and are constantly failing.  Like we are very alone.  Like we are selfish as individuals for thinking of ourselves and our wants when Clayton's life is all that matters.  Like there is no end. No peace.  And we can't really do anything about it.  Elephant on my chest or pains because my heart hurts...doesn't really matter.  We have to keep waking up every day, putting on our big kid underpants and saying (with varying levels of confidence) "We got this".

Always looking for the light through the darkness...