Anther deep thought from Jon. (Patti and I are heading to Mexico in 2 days, and I wanted to get this off my chest first.)

The topic of evolution has come up so many times recently that it seems worth addressing.  It seems like every show that I have watched recently, or article, or radio news story has had some reference to an animal or human evolving in a certain way. I am adamantly opposed to, and actively speak out against “such rubbish”.

Ok, to set the stage for this I am going to state that I am a Bible believing, God loving, Christian. The thing that strikes me the most about the whole topic of creation/evolution is that your belief or lack of belief in God seems to make all the difference.

For example, I see a bunch of systems in organisms that can’t evolve in stages – The Respiratory System, The Circulatory System, The Inner Ear, to name a few.

The Respiratory System:
The basic requirements are a vent for air to enter and leave, an organ capable of handling airflow and an organ that can transfer gases into and out of blood without letting the blood out – OR – a set of valves that allow water to be directed from the mouth to pass over gills and an intricate set of gills to extract the oxygen.  Oh, and don’t forget that at the exact same time you need a circulatory system that can make use of the oxygen to fuel the cells in the body.  A vent in the body that is not associated with any other air processing would be catastrophic; lungs not attached to tubes and vents would be catastrophic; etc.  Even if such a deformed creature did ever exist it would certainly not be “the fittest” to dominate its competitors for the bazillion years required through trial and error to oops its way into completing the pieces of the full system.  Remember its “Survival of the fittest” not “Survival of the weak, malformed half-step, that’s required to get to the next actual fit model”.

The Circulatory System:
Basic requirements are a liquid substance that can carry a variety of gases, a cell wall structure that knows the difference between good gas and waste gas, complete with an osmosis mechanic that can make the exchange with the liquid in a split second, a filter that removes expended cells, and a mechanism that continually creates more cells… oh and a complete respiratory system.  Try taking a single cell organism and injecting it with a foreign liquid and see what happens. Heck, inject it with some simple insect blood and see what happens. The result from such experiments is called ‘death’. For sure there are insects that have a small heart and an exoskeleton and no veins or arteries.  The blood just pumps out into the body cavity and back into the heart, but it still has all the required pieces.  (I’m not even going to start talking about what the kidneys do and what an evolutionary catastrophe it would be to either not have them or not have them work properly.) Please explain to me how a DNA miss-alignment at conception could result in the spontaneous development of all these systems at the same time. And if you can’t do that, explain to me how any creature could live and dominate the evolutionary game long enough to get all the pieces working together.

The Inner Ear:
The basic requirements, nerves that connect to the brain that can process a new and unique signal, a membrane that is responsive to sound waves, several finely tuned floating bones that connect to the nerves in such a way that the sound waves produce an electric signal that can be sent to and interpreted by the brain. This is one of the systems in the body that a half step may not be catastrophic, but would also not afford any benefit.  No benefit means natural selection has nothing to ‘select’. Imagine all the species that would have to exist with no hearing and dysfunctional attempts at an ear for one DNA lineage to randomly make it all the way to hearing.  The fossil record provides no such examples.

I have MANY more examples that make no sense to me.  But here’s the rub:

If you are an atheist, you don’t automatically say “Well, I’ll be! There must be a creator and therefore a God.”  You say, “There must be an explanation and dammit, I’m going to figure out what it is because I ‘know’ there is no God.”

If you are a “theist” then you say, “Obviously, your arguments are rock solid; jolly good show. There is a God and He made it all. Thou shalt suck lemons, atheists!”

The belief in the Divine is the basis of these thoughts, NOT SCIENCE! Science does not start with a conclusion and work backward. As a Christian, I start with a belief in God and my world view and my “how did humanity come to exist” thoughts are all based on that.  I will never see creatures as possibly evolving because my knowledge of God is at the core of who I am. I am most definitely biased.  Conversely, if atheism is at the core of who you are, you will never see the possibility of God’s involvement… you will never see a lack of evidence or contrary logic as proof for the creation side, but rather just another challenge of ‘science’ that is yet to be discovered, or logic that needs to be adjusted.  You are also most definitely biased.

I have yet to see a creation / evolution debate end in an alter call where people give there lives to Jesus because the creation side proved its point.  I have seen the creation side prove its point, but all that I have ever seen from the other side is regrouping and a challenge to come up with a better argument.  For that reason I stay way away from the whole debate most of the time, cause whats the point? But maybe its just me, maybe its just on my mind cause I have kids that are taking those subjects in school, I’m just opposed to every TV show, documentary, newspaper article, etc. basing all their comments and explanations on evolution.

What do you think?


What’s in a label

another post from Jon

In the summer of 2011, right in the middle of dealing with cancer and a 1 yr old baby, and… everything, we had an assessment to see if Jeremy had ASD. Being the geeky, need-to-know people that we are, we went to the assessment armed with DSM-IV self tests, and a whole host of facts about Autism, Asperger Syndrome, and mental health issues. Asperger’s explained everything: pedantic rules, unexplained extreme anxiety, very poor social development, inability to empathize or sympathize (while at the same time being very concerned about anyone being in pain or acting upset), single-minded unyielding focus on certain topics with the inability to focus on almost anything else, and a whole host of other stuff.

Light Reading
Light Reading

I’m not totally sure why, but he was not diagnosed with ASD, but rather Extreme AD/HD (one of the most extreme cases that BC Children’s mental health had ever seen).  I was so upset.  People think that that is weird or that maybe I wanted the money and programs that are available to kids with ASD, that are not available for AD/HD kids.  Some think that a diagnosis that is of a “lessor” disorder should be good news.  That’s totally missing the point.

Labels (or proper diagnosis) don’t change anything about the person.  Jeremy is an amazing and incredibly bright boy, that struggles with a host of things.  Remove him from the medical system and nothing about him changes.  With or without a diagnosis he is still smart, and still doesn’t know how to connect with a guest in our house, and still cannot read the faces or emotions of the people around him, and would still never get invited to a non-relative’s birthday, and would still destroy very valuable things that are not important to him, and would still not be able to tell a joke to save his life.  He would also still be able to look at a box of junk and invent almost anything he can think of with creative problem solving that boggles the mind, and he would still melt when he stumbles on something that earns him praise.

There are reasons why he didn’t get the label of ASD.  One of the reasons is that he would get angry and loose all ability to communicate when he was very young.  So we drilled into him how to express what he was feeling.  We could not understand how that could be so difficult but after years of walking him through: “are you ‘angry’? are you ’embarrassed’? are you ‘frustrated’? are you ‘sad’? …” he got to the point where he knows, at least academically, what emotions there are and what they apply to.  So if he is being assessed and is shown a picture of someone expressing an emotion, he might be able to access that academic information and tell you they are ‘sad’ or ‘happy’.  Put him in a classroom where he leaves his desk in the middle of a lesson to collect another broken pencil lead (literally a desk full of tips of pencils that had broken), he could not tell by looking at her face or body language that a teacher was getting impatient with him.  Another thing that I think worked against us is that we came in with so much information and were so convinced that it was ASD, that the psychologist kind of felt like she should push back and examine other possibilities…. So we got “Extreme AD/HD with Anxiety and Sensory Processing Disorders”

The label of ‘Extreme’ AD/HD got us new meds and more advanced medical care and it helped a little.  Add in “Anxiety Disorder” and meds for that it made some things better and some things worse.  Add in “Sensory Processing Disorder” and that explains some things and gives us strategies that help a little (weighted blankets, sensory deprivation rooms, sensory toys, dog clickers… he desperately wants one of these.)

Here’s the issue for me: If I take Jeremy to a summer camp where they have qualified supervisors that know about children’s mental health issues and I say “here is my son, he has ADHD / SPD / Anxiety”, then he gets treated thoughtfully, but he will still likely have a good handful of avoidable negative experiences.  If I say “here is my son, he has Asperger Syndrome”, then he gets treated in a way that avoids almost all problems.  That’s where a label makes a difference.

A label doesn’t make the actual condition better or worse.  It doesn’t validate, exonerate or diminish you as a parent. It doesn’t make symptoms go or come directly.  But it does give you a common language, terms that you and the people that you work with understand right away.  It does give you access to tools and strategies that are unique to the issue.  It does give you the ability to sit your extended family down and say, “our son has _____, and the symptoms for that are ______, and this is how we deal with it, and this is what you can do to help”.

Its a lot harder to have a diagnoses that doesn’t cover the issues and you are left trying to say something like: “hi, here is our son with ‘Alphabet Soup’, but he’s also got issues with social skills, and he has odd things that crank him up with anxiety and they don’t seem obvious, so if you see (here is my list of 10 things for Jeremy to avoid) any of these, then you might need to let him go take a walk outside, and if you play sports you will need to watch what his ‘teammates’ do and say to him because he doesn’t understand… (and at this point they are tuning you out and wondering what monster you are sending them).”

After working with the current diagnosis for almost 2 years and trying everything imaginable with some very very good behavioral therapists and occupational therapists, our amazing home school is using some of their resource money to pay for a private reassessment for Jeremy.  The behavioral therapist is attaching a note about her work and observations and has told us, “if he doesn’t walk out with an ASD diagnosis then I am in the wrong career.”

I’m hoping soon that I can just say without qualifiers or exceptions that: “Our son is autistic.  He has Asperger’s. If you don’t know what that means then educate yourself – watch the Temple Grandin movie, read a book or two, watch the first season of Parenthood (not totally accurate, but close enough). Then armed with that information, please come and be an involved and help us out… or at least understand what we are dealing with and cut us some slack.”

I’m not saying that anyone is doing a bad job or is not supportive. In fact we have very good family and understanding friends and great church youth leaders.  But even they are struggling with trying to understand how to treat J with a diagnosis that is very complex and doesn’t cover everything rather than just reading up on what it really is.

So we wait for the reassessment; maybe August, probably September.  We’ll let you know how it goes.

~ Jon

Voter Turnout

(post by Jon – don’t blame Patti, and I’m not saying who I voted for or why)

We just had a provincial election in British Columbia.  BC politics is always weird, but this one was off the charts.  ALL major polling authorities had the Liberals (the most right wing party we have at the moment) getting annihilated by the New Democratic Party (the most credible left wing party). Pollsters gave a wide lead to the NDP, but on election day after the votes were cast the Liberals not only won, but gained more seats in an unprecedented reversal of pollsters predictions and now control almost 60% of the provincial legislature.

This guy must have kicked a bunch of dogs, ’cause he lost.

The other issue that has been talked about at length here is the voter turn out. On election night it was said that only 48% of eligible voters actually made it to the polls.  Later that number was revised to 52%, but still that’s not a lot of democratic involvement.

People blamed the media for overstating the NDP lead, which left people feeling that they didn’t need to vote. People blamed the pollsters and questioned their legitimacy. People flooded call-in radio shows with a wide variety of thoughts on why the vote went the way it did and why the voters are not turning out.  Veterans called in, enraged, to talk about what they fought for. People offered opinions on voting reform, making it easier to have people vote, and even making voting mandatory.

I don’t think we should make it easier to vote at all!

I heard someone speaking recently that stated that democracy was designed for an educated and enlightened people. And for the most part the educated and enlightened people make a point of voting; for this I feel confidence in our system. But what concerns me is that our society and education system is not turning out fully educated and enlightened pupils.  I’m not saying that teachers are doing a bad job. But teachers do face a challenge when it comes to teaching about the economy.

Think about what you know about the economy and how it works.  Now think about where and when you learned that information.  The economy is the pool water that we all share.  When the pool level is up we have enough room for everyone, even if we are not sharing fairly.  Some might have more water, and some might have less water, but all have water to swim in.  Some might take way too much water and intervention might be needed to make them be reasonable, but not at the expense of the total volume of water in the pool.  When the economy tanks, the pool gets drained and we all have less water to share. Picture being in a crowded community pool where it really is too crowded but everyone is swimming.  Then picture about 20 people trying to share a blow-up kiddy pool; doesn’t mater how hard you try, no one is swimming. That’s the economy.  There’s a lot of things that a government can and can’t actually do, but all that I really want is a fair playing field, then I can take care of myself and those around me.

Now think about teachers.  AS A GENERAL RULE (and I know someone is going to point out some great exceptions), teachers start out as students who are not taught about the economy, then they go to school and get their teaching credentials in an environment where socialism rules and the economy is ignored, then they go to work in a fairly safe microcosm of society where jobs are secure, pensions are livable, and the greatest interaction with the economy is buying a house or paying student loans, where interest rates go up and down for some reason. They don’t get involved in investing capital, suffering economic failures, reinvesting windfalls, hiring, firing, or anything else involved in building enterprise or driving the economy.

I don’t fault teachers for this at all, but it does leave a big hole in the education and enlightenment needed to decide who should govern. Most of the people that I know that know anything about the economy (and some of them ARE teachers), learned it through life experience or through involved parents that took the time to share what they know about the topic.

Stats show that people with more life experience are more likely to vote, which at this point means sacrificing some of your time, getting in your car, driving to some designated place, waiting in line, proving who you are and then casting a ballot.  I do not invite the day that youthful inexperience, who knows more about Angelina’s double-mastectomy than politics, can click on a link on their smart phone, authenticate with some digital ID and then cast a ballot for the Rhino Party cause they think it would be funny. I do invite the day that youth at the age of majority, would be willing to stand in line in the rain to cast a ballot for the candidate that they think is best for our society and economy. But regardless, I don’t care what the percentage is; if only 10% of the population is educated and enlightened about what is going on in the world, then I only want 10% to vote. (I am not saying that we should be all right-wing – a bird needs a right wing and left wing to fly.)

Here’s one of my suggestions: hire a special class of teachers specifically to teach about the economy, the marketplace and entrepreneurship, made up of retired successful business people.

What do you think about voter turnout or how would you address this issue? Do you think that young people today are actually prepared to vote for what is good for all?

~ Jon

Not like an elephant

My dad used to ask odd riddles. (I would never do that to my kids…) One of the riddles went like this: How do you carve an elephant out of a block of wood?  The answer is: You take a chisel to a block of wood and knock off anything that doesn’t look like an elephant.


As dumb as that it, it’s relevant in raising a family in today’s world.  You have to know what your family is supposed to “look like” and knock off stuff that doesn’t look like that.  I guess its also like driving a car; after a while things just look like they are supposed to.  You can’t really explain why you stop before going through a green light, but something just doesn’t fit the normal and then a car runs a red light right in front of you.

This happened today for me with my daughter. Angelica has fought cancer, and now she is fighting to get back her strength and mobility.  She wants a car, she wants a job, and most of all she just wants to be normal (at least as ‘normal’ as one of my kids can be).

She is taking a class at school called ‘Planning’.  In this class they discuss all kinds of relevant stuff, like what skills will actually make you successful in the real world and how to think critically and how to prepare for a career and how to apply for a job.  This part is awesome!!!

In teaching the class, her teacher wants everything to be ‘real’. He wants them to make resumes with skills that they actually have, select a job from the local paper that they might actually apply for, write a cover letter for their tailored resume as if they were actually applying for that job, and then conduct a mock interview where you explain why you want the job and what your qualifications are.  This part is awesome!!!

The line was crossed for me when her teacher (name blurred to protect the well-meaning) told her that she couldn’t apply to be a “mother’s helper” because she can’t run after kids on a playground if they start to run away. Again, this is all in the name of making this exercise ‘real’, and I kind of understand the point.  This went back and forth a little bit, but today Angelica got this note:


An alarm went off inside me… Now that I have processed it, written a response, received an apologetic call back from the teacher, I know perfectly well why this is bad, but I wrote the email before even fully thinking it through… I just knew it didn’t “look like an elephant”.  Here is my reply:

As per attached, I do not agree with this and I want it to stop immediately!

Angelica has fought cancer with every fiber of her being for over three years. It has been one of the most difficult things that I have seen a child go through. Angelica was very athletic and was talking about signing up for baseball before she was diagnosed with cancer. The most painful part of the treatment for Angelica was what it stole from her in terms of time and opportunity. Now she is in a place of working very hard to recover and we are constantly reinforcing for her that she can do anything.

In an attempt to make this job interview as real as possible, I believe that you have crossed a very sensitive and very real personal boundary. The facts of her “medical condition” have only been discussed at length with Mrs — and Mr —. By repeatedly questioning Angelica’s “mother’s helper” job application and telling her that she couldn’t do that job, you are 1) incorrect about her condition, 2) incorrect about what a mother’s helper job is, 3) acting in a manner that will be harmful to her recovery, and 4) breaking the spirit of my daughter.

  1. Her condition is such that she should avoid running or doing major impact, but is completely capable of it if needs be. I don’t believe that its really her responsibility or requirement to provide you all the details of her condition to take this class. If she says that she can be a mother’s helper, then you are in no position to say otherwise.
  2. We have employed a couple mother’s helpers in the past and it did not always include taking care of children. A mother’s helper may be required to do household chores so the mother (who is still in the home) can spend time with their child. A mother’s helper is not the same as a nanny as a nanny is left alone with the child and chores. If Angelica applied to be a mother’s helper to our family, and I knew what I know about her capabilities, I would hire her in a heartbeat.
  3. Angelica needs motivation to do all the physio that she is required to do. Her motivation right now is that she wants to buy a car, and she needs a job to do that, and she is doing her physio as hard as possible so that she can get an actual job as soon as possible. By making her focus on limitations (that aren’t actually there) you are taking away her motivation.
  4. Angelica, who holds her emotion in to her own detriment, has broken down in tears about this. She is getting the message from this process that she is not good enough, that she is broken, that she could never get a job. My daughter has the spirit of a fighter, and in fact she has fought through cancer to live. But it took a lot of effort on the part of us, her parents, school counselors, friends, neighbors and family to constantly encourage her to fight, to win. I did not tolerate negative reinforcement then, and I will not tolerate it now.

I believe that walking the kids through real world scenarios is VERY VERY good. I wish that I had been taught what it is to apply for and compete for a job when I was in school. I understand the motivation for making it real, but I ask you to step back from the “realism” in this area.

I was impressed when I read my own email. The teacher called me right away, immediately saw my point and has set out to amend the situation.  I wouldn’t always jump in to fight for my kids, but there are times when I do jump right away and I can’t really explain why… I just know what my family is supposed to look like and I’ll knock off anything that doesn’t look like it.

When do you jump in and fight for your kids, or let them fight for themselves?

A record setting pace

When I was 20 years old (seems like half a lifetime ago) I ran in the Vancouver Sun Run 10K and had a time of about 42 minutes.  I’m told that’s pretty good.  My new employer has been entering a yearly corporate team to the Sun Run and I signed up to go.


When I signed up I had the idea in my head that I would try and beat my previous time which would require a significant amount of training from where I was(am).  Regardless, when you sign up you are supposed to put in the time that you predict you will finish in, and I conservatively put in 46 minutes or something like that.  This time effects your bib number, starting position and so on, as faster runners get to go first to prevent bottle-necking on the race course.

So I started running a few times a week.  I had a goal, a date to aim for, and I was excited about getting back into running.

Then Patti decided to start an 8 week “Couch to 5K” program but didn’t want to run alone and asked if I would join her.  I can’t put into words how quickly my goals changed.  Before she even got the full question out of her mouth, I no longer cared at all about the Sun Run or my time.  I immediately had a new goal; to be Patti’s running partner.

There are challenges that go along with this.  For starters, I might be turning 40 this year, but I can still run at a decent speed without training and I can definitely run a full 10K without stopping, even if the time is a bit high.  So my first challenge is to make Patti feel that she is not holding me back or cramping my style by getting me to run/walk/run through a fairly light 3k over 30 minutes.  Also, I’m still signed up for the Sun Run and I still have a low bib number coming so I need to not be a total mess out there, so I need to fit in the occasional 10K as well, but the goal is now completely different.

Why?  Why would I change my goal so fast?  Typically ADHD people don’t like to change goals once they are set on something.  On top of that I have wanted to beat my 42 minutes for 19 years and this is my first crack at it.

Because, Patti and I are better together.  Patti is an amazing person.  I don’t think I’m that bad of a person myself.  Both of us have accomplished a decent amount on our own, we both have skills that are unique to us and we both have imperfections and problems.  But when we do things together we rock!  I’m not just saying that; we’re amazing…. Really!!!

OK, so in all honesty our weaknesses match our spouse’s strengths in an uncanny way and when we rely on each other’s strengths we are just… better.

Patti and I were talking about this the other night while we were running (actually I talked and Patti concentrated on breathing and managed a “yea” once in a while.  She’s a good listener when she’s running….) We were BOTH talking about this the other night while out running and it came up that she feels that her blog only represents a half of her. Certainly there are things that we don’t share on a blog, this is after all a public forum and we share a lot, but we do choose to share some stuff and not other stuff.  What she meant is that the readers of this blog only get her side of things, and you don’t get mine.  Not that my opinions are all the different, but that sometimes my perspective is.

So we have decided that I will start contributing to the blog and not just as a guest blogger, but under my own name.  Just to warn you, sometimes I’m all surface level, geeky, odd humor, and sometimes I’m deep and philosophical.  Patti is generally somewhere in the middle all the time…. See we complement each other even there.

So as the title says, I’m running for a record setting pace.  I’m not aiming to beat 42 minutes on a 10K; I am aiming at running more, farther, faster with Patti on whichever trail we happen to be on, as long as we are doing it together.

See you soon…


BTW: As you can see from the picture, my bib number for the run is 2955 which puts me in the yellow zone which is way too close to the front… but if I beat 50 minutes I’ll be thrilled (and a little surprised).

A New Day

Jon started his new job today. He left the house at 7:30 this morning because he has no idea how long it’s going to take him to get there in rush hour traffic and he has to be there at 9am.

This is a HUGE change for us and while a part of me thinks that I’m a lot more ready for something like this to happen in our family (as opposed to a year or even 6 months ago), there another part of me that has no idea how this is going to work.

Obviously we will do what we have to do in order to make it through, but this is the first time in a very long time (approximately 8 years) that Jon will be rocking the “daily grind”,3 outside of the house, on a Monday to Friday, 9-5 kinda deal with an hour of commuting on either side of the day.

This past year has really taken a toll of me and while I used to believe that I could do anything and everything….I now feel like I have no choice in the matter and somehow I just have to survive. I often hope that in the very act of “surviving” that I will be able to heal enough to the point where I feel strong again. At the same time, I wonder if that’s even a possibility. You know how if you break your leg and get it set properly, put a cast on it, rest and let it heal; it will heal better and faster (and almost as good as before) than if you just carry on limping and walking on your broken leg, doing what you’ve got to do. Sure it might heal eventually, but it may heal crookedly or you may not get full strength and/or mobility out of it, but the intensity of the pain might not be as severe as it was as first….

I kinda feel like that second scenario is playing out in my life. I feel a bit broken and tired and like there is no option to re-set, rest and heal and I’m just hoping and praying it will all be okay eventually. I DO feel stronger than before, but I’m so acutely aware of my fragility, compared to the strength that I feel I used to have and that’s……well, that’s tough!

I’m sure that the kids and I will fall into a routine of sorts, and I know that families do this all the time, but right now it feels a bit daunting.

culley (3 of 211)

I’m so THANKFUL that Jon was able to get work. In faith, I’m confident that it will work out and that we will be okay. According to feelings, I’m not so sure.

On Vacation…

Up at Ross Lake

We’ve been going to Ross Lake since the year we got married (that makes it 16 years) and we’ve only missed a few years. Last year we did not go, cause we were in the hospital all summer. What a blessing it is to be able to take Angelica (and the rest of our healthy children) up to the lake this year and have her health good enough that we can be out of cell phone range, because we don’t need direct access to the hospital right now.

It seems like we haven’t been very plugged in to work or school or other things and taking a vacation from all that right now is somehow wrong, but we have been living in a pressure cooker for the last year and a de-stress is very much in order… so look for us again (with fresh pictures from our wonderful Ross Lake) after August 29th.

Please Tell: What does your family do for vacations? What do you do to de-stress? Please share a vacation or camping story here for us to read when we get back…

We Love You All.


Happy Birthday Josiah

Today, Josiah turns 4. We are so proud of our little man and all that he adds to our family. Josiah, or Siah as most people call him, is very very very kind and loving and joyful. He is also younger than Jeremy by almost 7 years and wouldn’t stand a chance of being treated fairly, except he can very most definitely assert himself.

Josiah came into our world as a miracle. We had lost four consecutive pregnancies, and had basically decided that it wasn’t going to happen. The timing was all off, we shouldn’t have been able to get pregnant right then, but it happened. Patti’s brother, Chris, had his accident not long after and that consumed most of the pregnancy (and explains why his name is Josiah Christopher Culley). And then Josiah was born.

He has had a personality all his own since the day he arrived. He stole my heart right from the beginning. He has the ability to lighten the mood in the room, (or to do the complete opposite). He loves small fiddly things that he calls his “doo-dads” and says the most adorable things like “Gramma, you are my present”. He calls his favorite people with the word “my”… “My Brynn and my Chris are getting married and I’m their bear boy (ring bearer)”. Josiah is an amazing son, and Siah, I love you more. (He tells me that he loves me, and I say I love him more, and he says I love you the most, and then says “I win!” really fast, and it always makes me laugh).

We are fairly practical and don’t do much to celebrate a first or second birthday. Those parties are nice, but the kids don’t remember them and are mostly overwhelmed at why life got so weird for one day. But come age three, its party time…. Except in Siah’s case, we basically skipped his party last year, as Angelica’s treatment was overwhelming, and so this brings us to today.

Siah Looking at Daddy
My favorite photo of Siah - I am in his eyes

This summer is a bit of a cave for us… I mean that in the sense that it feels like a tornado went through our house last year and the violent winds, picked up and threw around our emotions, our energy, our direction, our fears, our life and left the house just a month ago. The cancer treatment has switched to something far more manageable, but just like a tornado coming and leaving, life isn’t just ready to get going right away. You have to repair the damage. I use the term cave, because the storm has moved on, but normal is unlivable and so we are temporarily living as simply as we can while we repair emotionally, spiritually, physically, and in every other way. We will live in “normal” again, but we need the summer to be able to.

Siah Today
Bear Boy

With that said, as of Monday, there was no party planned. As of today, we are having a party. If it is the only thing that gets accomplished today, then it will be a great day.

Josiah is sooooo excited. Angelica has already given him a present, and he has fully clued in to what is coming. He is telling everyone that he is getting a “ball that turns into a bird” for his birthday, and it took some doing to figure out what that was, but he is indeed getting some of those.


Tuesday Morning Update

Well, we are still here. Angelica’s counts have been coming up VERY slowly. The good folks at BC Children’s want to make sure that when they send Angelica home, she won’t end up getting sick and having to come right back… They want her immune system to be strong enough.

Its hard though, because Angelica is not sick. She is completely healthy. The concern is not about her current health, but her immune system strength. It feels so frustrating to be sitting in the BC Children’s Hotel and just hanging out, knowing that Patti could really use a lot of help at home, and not being able to go home and help.

Alexandra turns 13 in two days and has a big party scheduled for tomorrow. We should all be at home today and helping to plan the party, but instead we are waiting to hear from the doctors to find out if they are going to “risk” sending her home.

So please pray that we get to go home, that Patti doesn’t stress too much about the party, and that Alexandra’s day turns out fantastic tomorrow.


Friday Night Update From BCCH

Its Friday night here at BCCH and I thought I would update everyone on how things are going here.

Playing Settlers of Catan. We've each won one game.

Angelica’s cultures remained negative through the 48 hour mark. This is really good, because it means that we don’t have to stay here for another 14 days. Her temperature has remained normal for almost 48 hours, and so by tomorrow morning, that hurdle to leaving here will have passed.

On the negative side, Gelica’s WBC (white blood count) remains extremely low, and that needs to come way up before we can go home. Finally here CRP (C Reactive Protein), which indicates inflammation in the body is slightly elevated from yesterday, and that needs to trend down (This is an odd indicator, because any inflammation in the body will raise the CRP including bacterial infection, viral infection, sore gums, zits… A really high CRP is definitely a bad infection, but slightly elevated could be anything, so they just need to see that its heading down and not up.)

Walking helps to raise the White Blood Count

At this point, we are healthy and feeling fine, but can’t go home till the WBC comes up and the portion of that that indicates the immune system fighting cells needs to be above a certain level (right now the level is “sample not enough to even bother testing”).

This is the part that really bothers me. It seems that when we come in here, it doesn’t seem to carry on business-as-usual at home. Something has gone wrong at home each time we’ve been in here it seems. Now Patti is dealing with illness and kids that can’t come in and visit and everything while we are here, and I’m not able to help her, because if I find someone to come in here and be with Angelica, I can’t go home and pick up whatever Judah has and bring it back here and risk a setback with Angelica. (well I haven’t been able to… we have a plan for tomorrow that includes me decontaminating in a hospital shower before I come back to Gelica’s room)

We are tired. We function better when we are together. Please pray for a really good WBC and a lower CRP.

Thanks, Jon