Zachary's first rejection

I knew when we received Zachary's diagnosis we would be in for a lifetime of rejection. Being different, being disabled, being out of the ordinary always carries with it various levels of rejection, whether it be through friends, family, schools, sports, buildings or companies.

Zachary recently received his first rejection. Of course, the letter came to me, and Zachary, thank God, is still too young to have to explain anything about it.

A previous life insurance policy on myself lapsed and so I applied for a new line through the company I have other insurance products through - State Farm. I've been with my agent for six years and when I approached her about it, she came over and we went through the paperwork. One of the things I wasn't even aware of was having a child as a "rider" on the policy. Simple enough, the child is just included or attached on the parent's policy and if something happened to the child, they would be covered for $10,000. A relative small amount - enough for funeral costs and what not. A simple child rider...sure, I said, and we went further through the paperwork.

A couple of weeks later, I received this letter in the mail.



I read it a couple of times when I first received it, kind of dazed at the pettiness of it. I was willing to pay a pretty decent premium on my policy with Zachary as a rider, and they rejected him based on his cerebral palsy. It was a simple, lowly $10,000 of coverage. Their candor was admired though - they definitely did not dance around the subject or use another excuse. It was straight and honest.

What to do next? Do I go through and remove Zachary as a rider and continue with my policy?

One of the other decisions I made after receiving his diagnosis was the promise to not be friends with, associate with or do business with anyone who would reject Zachary based simply on his disability. So I let the rubber meet the road.

I called up my agent and explained clearly to her I would not be following through with the policy. She had not known about Zachary's rejection, so I explained it, read the letter on the phone, and simply stated my above family promise. As a logical person, I explained to her I did not take this personally and understood completely that it is just a very large corporation with a set of stated guidelines on who and who not to give insurance to - detailed facts be damned.

I further explained to our agent the fact that Zachary is healthy, has the potential to live a normal lifespan, is cognitively great (according to us, family and all therapists) and is at no risk of suddenly dying from his cerebral palsy. While I was disappointed by the result from State Farm's robotic analysis, I understood the big corporation approach. So I ended the call by stating as of now (though Obama's plans are to the contrary, but I digress...), it is still a free country with free market choices and I would be in the market looking for a new insurance company who would accept Zachary for coverage and would subsequently move all my insurance products over to that company.

She didn't know what to say, apologized, and that was the end.

Now begins the search for the new company.

Farmers was the first option and things seemed to be going well with them. Farmers honestly stated they would reject Zachary, too, on a life insurance rider, but they have a policy which allows for an internal broker to find a company that will say "yes" if Farmers says "no". They were able to find an outside company, Protective Life, which has an A-rating and will accept any child as a rider, no questions asked, up to $20,000. Protective Life would also allow the child, once 25 years of age, to take on the policy individually and multiply the coverage up to five times. However, Farmers was unable to effectively match or beat the rates of my other policies, so the search continues. Though I will keep Protective Life in mind.

While talking with the Farmers broker, I probed the "extreme future" question, to gage what life will be like for Zachary. I told her I'm a conservative, I'm going to raise him to be independent and take care of himself and I believe he will be cognitively fine. Yes, he will have some physical disabilities, but I have no doubt he can grow up, get married and have a family of his own and be the provider for the family. Once having the family of his own, would he be able to get life insurance for himself? Her answer - NO.

So this is just a peak into the further struggles Zachary will face in the real world when he goes off as an adult. He won't even be able to get a life insurance policy to cover his family. The rejection continues.

Rather than seethe at the way the cards are stacked against him and us, I'll be taking a proactive approach. This has spurred me to be much better with my finances; to be goal-oriented on paying off all our debt as quickly as possible; to work hard to establish a bright future for him; to assist him in overcoming the rejections of the world and to find solutions through the problems.

This is just the first of many rejections to come. Luckily, this one did not have much emotional value attached to it. Oh do I dread the day(s) when the more emotional rejections will come - the name calling, the dismissal of value, the loneliness, the ignorant, the plain and downright mean and evil.

No, this is just the first. And while it's only silly insurance, it still hurts for the reminder of things to come.

"The Arc Is" - Summit of Hope 2009 Video for The Arc of Jefferson County

This is a video I did for the Arc of Jefferson County. They are a local chapter of a nationwide organization (a lot of support dollars come from Arc Thrift Store) serving children and adults with cognitive, intellectual and developmental disabilities and their families by providing individual advocacy and training. Every year, the Jefferson County chapter (the county I live in) holds a banquet fundraiser called the Summit of Hope.

They always have a video created beforehand to play during the middle of the banquet. It features different stories of families, what they go through, and how the Arc has helped them. This year, I volunteered my producing, directing and editing skills towards the project. My friend Dirk, did the camera work. This is the finished product. Hope you enjoy.

http://www.youtube.com/watch?v=2YvCmj7VUX4

*I tried embedding it, but the video format is larger than this blog frame so 1/3 is cut off, so visit the YouTube page instead.*

Fighting the Abortionist Culture

This article from the Washington Times was posted in a parent-to-parent listserv I belong to. It is great to know there are people forming groups/ministries to counter the "throw away baby" disease permeating our current culture.

It is good to know there are still people with morals, values and a deep love for God out there.

Zachary's first Adam's Camp adventure - Early Start Program

Colorado has an intensive therapy camp organization called Adam's Camp. They have a different age group camps - the older kids get to go up to the mountains for a week (parents too) for a real camp adventure. The younger kids, Zach's age, go to a 5-day, 3-hour a day therapy session at a Denver-metro location called "Early Start".

A description about the organization from their website:

Adam’s Camp is a Colorado-based nonprofit organization created to provide a variety of intensive, personalized and integrated therapeutic programs for children with special needs and their families as well as recreational programs for youth and young adults with moderate developmental disabilities.

Based in Denver, Colorado, Adam’s Camp offers a variety of programs for kids with special needs from infants through young adults. The Intensive Therapy Programs and Transition Program provide team based, interdisciplinary treatment. Small groups of pediatric therapists work one-on-one with 5 children over 5 consecutive days. They focus on each child’s needs and assets, providing coordinated, outcome based treatment.

Families are a big part of all therapy programs. Adam’s Camp offers families the support they need to understand, treat, advocate for and enjoy their child and his siblings.

Once we heard about this program from a resource fair put on by the Arc of Jefferson County, we signed Zachary up immediately. For a week in March, Zachary went through this intensive therapy camp going through a variety of different therapies - Physical, Occupational, Music, Speech and Group Playtime.

It was exciting to see Zachary thrive in this new situation. We were a bit concerned before because he didn't seem too interested in being social with kids - just adults. But he really "connected" as two-year-olds can with the kids at the camp. We got rave reviews from all the different therapists about Zach's personality, ability and intelligence. It put me to tears to hear all the therapists tell us how incredibly smart he is, how determined and how much tenacity he has to overcome his obstacles.

These are things we as parents knew in our heart, but it's so amazing to hear them confirmed from credible third party professionals.

The camp was terrific and I would definitely recommend it to anyone in the Colorado area. There were families from the CO-NM border and from Iowa who came for this particular camp.

At the end of the camp, the therapists present us with a book on Zachary. It has pictures and reviews of Zachary on all sorts of levels.

I scanned in all the pages and posted them here - yes, proud parent bragging away. But in situations like ours, it's joyous to have something to brag about every now and then.

Four-Alarm Surprise

It takes me way too long to sit down and write, I know. Anyway, back in late February, we were given a HUGE surprise that completely blew us away. The chiropractic office where we get Zach's HBOT treatments told us they needed to contact Renee's parents to clue them in on details for a surprise for us.

It was scheduled for Feb. 21. So, when that day come around, we were led out to east Denver where the Fire Department has their training facility. We went up to a classroom where other families with special needs kids were gathered. There were two big firetruck wagons in the front of the classroom. I started thinking this was a special class to teach kids about fire safety in unique circumstances (with disabled kids) and Zach would get a chance to ride around in the wagon.

The organizer, Tony, gathered everyone together and started talking. Tony explained how a year ago he was talking with a firefighter co-worker of his who had a son with CP. Tony asked if there was anything the fire department could do to help out; how was he doing; how was the family, etc. The co-worker responded they were all doing well and handling the situation, but the thing that really killed him was his son would never be able to ride a firetruck. Tony responded, "we'll change that."

So Tony and a few other firefighters custom built their co-worker's son a firetruck wagon. The child loved it so much, they decided to do this every year for a special kid. Tony takes his son to the same chiropractor we do for HBOT. He had seen Zachary several times and secretly chose Zachary to be the next one to build a wagon for.

And here they were presenting it to us! Renee and I had tears in our eyes, it was such a tremendous and wonderful surprise. Such outpouring of care and love from relative strangers! The wagon is absolutely amazing! It has real working lights, a bell, a ladder on the side. The front grill has his name cut out of the metal, and his name is emblazoned on the dashboard inside. The wagon is also upholstered inside, has cup holders and a pull switch to turn on the lights.

Zach's going to be crusin in style!

After the presentation, they had a whole list of activities planned for the training facility - drive a video-game firetruck, go into a smoky training house to find a baby doll, and get to go up 100 feet in the air in the firetruck bucket.

Massaging and Stretching Zachary

A YouTube viewer had asked us to post a video about massaging and stretching Zachary. Renee takes care of this usually after his bath time and the entire session can last for 20-30 minutes. It's a long process. I video'ed her and prompted her to discuss what she was doing. She's a massage therapist by trade, and a darn good one too, so Zachary is blessed to have such a skilled mommy.



For any other parents with children with CP, especially with hypertonic muscles, we hope this can help give you some tips or guidance in stretching and massaging your children. This is very therapeutic and will help their muscles, movement and range of motion. Also, if there are any questions, I'm sure Renee would be more than happy to explain anything in more detail by email response or comment response.

Zachary on Film

My brother in law, Gary, is in Film School. He had to create a 16mm film project for his application into the Bachelors of Fine Arts program. He chose Zachary as his subject and this is the edited film of Zachary and his walker.



I'm copying Gary's "Disclaimer" that he put on his YouTube channel. Although he says it's diminished, we all think it looks great and especially love the part towards the end where Zachary smiles.

*Disclaimer* The film to video transfer has severely diminished the quality of the video. The colors are desaturated and the lighting seems to have been brought down. This is not my fault. Seriously, you should see the film. Anyone got a 16mm projector? *Disclaimer*

The film was shot with a Bolex 16mm camera on Kodak 500T film stock. This is more experimental than narrative, since that is what the film program at UCB focuses on.

Pictures in February

Momma and Zach.

Watch out! Zachary's driving.

Sitting up and playing with cars.

Cool hat Zach.

You so funny.

Top 10 reasons to oppose the stimulus

http://www.freedomworks.org/publications/top-10-reasons-to-oppose-the-stimulus

HOW MUCH MORE WILL IT TAKE FOR AMERICA [I.E. THOSE WHO VOTED FOR OBAMA AND ALL THE DEMOCRATS] TO WAKE UP?

Ah... the emperor has no clothes

Charles Krauthammer wrote this wonderful little piece in today's Washington Post.

An excerpt:

After Obama's miraculous 2008 presidential campaign, it was clear that at some point the magical mystery tour would have to end. The nation would rub its eyes and begin to emerge from its reverie. The hallucinatory Obama would give way to the mere mortal. The great ethical transformations promised would be seen as a fairy tale that all presidents tell -- and that this president told better than anyone.

I thought the awakening would take six months. It took two and a half weeks.

And Bush was the fear-monger?!?!

Obama warns that we MUST pass the stimulus bill now or the nation WILL NEVER RECOVER!

"This recession might linger for years. Our economy will lose 5 million more jobs. Unemployment will approach double digits. Our nation will sink deeper into a crisis that, at some point, we may not be able to reverse," Obama wrote in the newspaper piece titled, "The Action Americans Need."

He rejected the argument that more tax cuts are needed in the plan and that piecemeal measures would be sufficient, arguing that Americans made their intentions clear in the election.

"I reject these theories, and so did the American people when they went to the polls in November and voted resoundingly for change," he wrote.

The arrogance of this guy stinks as bad as a lip-stick wearing pig wallowing in it's own dung. He rejects more tax cuts - great way to learn from history regarding economic recovery. What happened to the American spirit? What happened to "hope and change"? What - it all rides on this stimulus bill Obama? Way to be confident in the American idea, the American toughness, resilience, endurance of Americans. I guess in order to form the socialist government he wants, we all must give-up on our American independent nature and rely on the government for EVERYTHING.

Apparently we NEED this "saving" stimulus bill sent by the "savior" to pass Congress for Obama to sign or WE WILL NEVER RECOVER AS A NATION!!! (Dah, dah, daaaaah!!!!)

(From Glenn Beck's radio program and website): "But saying that our economy may never recover if he doesn't get this stimulus package, let me just put this into perspective.

We're never going to recover if we don't get the $50 million for the National Endowment For the Arts, we may never recover if we don't get $380 million in the Senate bill for the Women, Infants and Children's program, we may never recover if we don't get $300 million for grants to combat violence against women, we may never recover if we don't have $6 billion for university building projects, we may never recover if we don't have $1.2 billion to provide youth summer jobs, and this bill defines "Youth" to people up to the age of 24. You'll be paying for those.

We will never recover if we don't have $2.4 billion for neighborhood stabilization activities. We may never recover if we don't have $650 million for digital TV coupons. We may never recover if we don't get $150 million for the Smithsonian. We may never recover if we don't have $34 million to renovate the Department of Commerce headquarters.

We may never recover if we don't have $500 million for the improvement projects for the national institute of health facilities. We may never recover if we don't have $44 million for repairs to the Department of Agriculture headquarters or $350 million for agriculture department computers. We may never recover if we don't have $88 million to help move the Public Health Service into a new building, not for a new building. To help them move to a new building. We may never survive if we don't have that $88 million for a moving truck!

We may never survive if we don't have the money to convert federal auto fleets to hybrids. This country may never recover if we don't have a billion dollars for the census bureau. We may never recover if we don't have $89 billion for Medicaid or $30 billion for COBRA extensions or $36 billion for expanded unemployment or $20 billion for more food stamps. We may never recover if we don't have $850 million for Amtrak, a train that hasn't turned a profit in 50 years.

America as we know it may never recover if we don't have $87 million for a polar ice breaking ship, never recover. Let's not look too deeply into why we would need a polar ice breaking ship if the poles are melting and won't have any ice! We may never recover if we don't have $1.7 million for the national park system or $55 million for the historic preservation fund. We may not survive if we don't have $7.6 million for the rural advancement program or $150 million for the agriculture commodity purposes or $150 million for producers of livestock, farm-raised fish and honeybees. We may never survive. We may never recover unless we have $160 million for paid volunteers at the Corporation for National and Community Service for the community volunteers, the National -- wait a minute. Why are we paying the volunteers?

Look, we may never survive if we don't get serious about renewable energy. Our planet has a temperature. It's very sick. We have to do everything we can. For instance, would be ridiculous for, you know, me, the president, to take Air Force one out on its maiden flight, to take a 747 jumbo jet from Washington D.C. for an out-and-back excursion to the House Democratic caucus retreat at the Kings Mill Resort and Spa in Williamsburg, Virginia, where the 747 is parked in Virginia. It would be crazy to take a 157-mile trip in a 747 jumbo jet when you've got teleconferencing there in the White House, because the Earth has a temperature and that's why America may not ever recover if we don't act now and pass $2 billion for renewable energy research or $2 billion for clean coal power plants in Illinois or $6.2 billion for a weatherization assistance program which basically is weatherstrips for underneath your door!

We may never survive if we don't have $3.5 billion for energy efficiency and conservation block grants or $3.4 billion for the state energy program or $200 million for state and local electric transport projects or $300 million for the energy-efficient appliance rebate program or $400 million for hybrid cars for state and local governments or $1 billion for the manufacturing of advanced batteries or $1.5 billion for green technology, loan guarantees or $8 billion for innovative loan guarantee program or $2.4 billion for carbon capture demonstration projects or $4.5 billion for the electricity grid or $79 billion for the state fiscal stabilization fund. We may never recover if we don't do these things right now. Don't think. Do it now! Or we may never recover.

Is anyone insulted?"

Interesting blog post

This blog post has been circulating the internet via email buzz. My father-in-law sent it to me. Thought it was pretty intriguing.

http://euphoricreality.com/2008/11/28/my-predictions-for-the-obama-presidency/

Can you love them more?

Since doing the mild Hyperbaric Chamber Treatments, Zachary has really increased in verbal babbling and has been able to pronounce a few words like dada, gimpa, papa, done. We decided a long time ago it was definitely time to get him into yet another therapy - speech. All our outpatient therapies are with the same location, so we decided to get in their line for a full speech-therapy-evaluation.

This location's speech therapy department is so flooded there's a long waitlist just to get therapy services, let alone the initial evaluation. So we were surprised and excited when a cancellation came up and we were next in line.

We went into the appointment with a great positive attitude and were really happy because we knew if we just laid him on the floor, he would begin babbling for her and she would be impressed with his verbal skills. She began the evaluation and conducted her "tests". She would ask him to point at the right picture in a book, shake little objects out of a bottle and other weird stuff. Zach even played on the floor and babbled his little head off.

Then at the end of the evaluation, she decides to tell us her prognosis for Zach. "He's not going to be able to talk for the majority of his communication and will need augmentative speech devices to communicate."

Not going to talk?

Augmentative speech devices?

Did you hear him babbling? You're saying this to a parent on their FIRST speech evaluation. Like I'm supposed to know what the heck augmentative speech device means. All I can think of is Stephen Hawking's voice computer. And how in the world can you just say he's not going to talk - he's NOT EVEN TWO YEARS OLD for crying out loud!

However, at the time I was more flabbergasted and stunned than anything. I asked if she was looking too much at his diagnosis and not at him specifically. She replied that the diagnosis has much to do with it, but she wasn't very helpful or seemed very positive about him talking. She approved him to get therapy services and put us on a three-month waiting list. Yea.

Renee and I sank into depression by this hard blow that came out of nowhere. Renee held it together more than I that day. I was a wreck - popped a xanax and was checked-out. It was too much for me to handle at the time. All the positive build-up we've had over the last several months, all the progression and development, all the great achievements, and then BOOM - the air's knocked out of your chest cavity and the clouds of doom & gloom swirl overhead.

Given a day or so to sort it all out after the evaluation, we both decided the prognosis was absolutely ludicrous. We were not going to accept it and just like anything else with Zachary we are going to be extremely proactive and he will speak. I'm in the process of finalizing a decision on a freelance speech therapist to start working with him from home right away.

All that to say, I think I found myself loving Zachary more. It was just a feeling at first, but I started thinking there were changes in the way I spoke to him and the way I handled him. It seemed as if I was “loving him more” – being sweeter, spending more time, concentrating on his needs or wants more. I knew the prognosis was not going to be correct and I knew Zachary has the capabilities and determination to exceed anyone’s expectations. And I especially knew no one loved our little bugger more than Renee and I.

As time goes by, you get back into the normal routines and grooves of life and sometimes these “special” heightened feelings go back to normal levels. But for a time, I felt like I did love him more than I already did.

So, back to the title of this post… Can you love them more?

More to come...

I just got back from a whirlwind of business dealings for my job and have a ton of work to do. I do have ideas for some great posts especially with what's happened to us recently.

We were told by a speech evaluation person that Zach wouldn't be able to talk for his major form of communication.

We're looking into stem cell therapy and have a call with one institute in Australia today.

I'm thinking about a series of products to market based on Zachary's life and our story.

Zach's PT and OT costs from Children's are getting higher and higher each month since our insurance will not "cut off" at a out-of-pocket max when it comes to therapies.

And we've come to the realization that within the next year or two, we have to find a ranch-style house as the one we're in is NOT practical for Zach either in a walker or wheelchair.

So in time, when writing is more pleasure than business, I will elaborate on these points.

A father's Christmas present

Ever since we started the Hyperbaric Chamber Treatments, Zach has exploded in his verbal. Mostly its just babbling and experimenting with sounds - gobbildy gook if you will. But every once in a while, Zach will get out a purposeful word.

On one momentous occasion (un-videotaped of course), I was giving Zach his nighttime milk and with about a quarter left to go, he pushed back and said, "Done." I was shocked! Had he really said it? I decided to investigate and tried to give him more and he promptly tightened his lips and arched back with a disgusted look. He was DONE. And he said, "Done"!!! Praise God, it was amazing!

Earlier in the month, I was on a business trip and Renee used her cell phone video camera to capture a moment meant to melt a faraway father's heart. It was an early Christmas gift - one of the BEST ones.

Here it is.


(We will also be posting-as soon as I find the DV tape-a good clip of Zach babbling away. Renee and I truly believe this is a direct result of the Hyperbaric Chamber, for what it's worth).

MERRY CHRISTMAS!

From our family to yours, we wish you all a very Merry and Blessed Christmas!

As we open our presents, drink delicious cups of holiday cheer, eat Christmas dinner, laugh (shaking our "bellies of jelly") and play with family and friends, let us all remember where our focus should be - on those things which are eternal.

We are blessed with family, friends and even strangers. And we're even more blessed to be counted as part of the family of God!

Matthew 1:23
Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us.

Luke 2:8-14
And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.

And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.

And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

Glory to God in the highest, and on earth peace, good will toward men.

Zachary's Fundraiser Part 2

I want to add to the post below:

Renee and I are incredibly and deeply thankful, humbled, grateful and appreciative for all those who 'invested' into Zachary's Benefit fund. It is a sheer blessing we truly are in awe over.

Zachary's needs are being met medically and therapeutically because of the gracious giving, support and love from friends, family, strangers, friends of friends, and even local businesses.

We will NEVER forget that and our gratitude will forever be on those who helped us and God for making it all happen.

Zachary's Fundraiser - Smashing Success

It's been two months and it's just proof of how crazy busy everything has been since Zachary's fundraiser (Oct. 18). I've now had time to put a short video together of the breakfast and silent auction as well as write about it.

The Zachary Charlan Benefit Breakfast was an excellent success. The actual event took place on Saturday, October 18th from 6:30 - 9:30 AM.

The idea for a fundraiser originated from Renee. We were drowning in medical bills and wanted to get Zachary into alternative therapy treatments such as hyperbaric, which insurance does not cover. Also, because of Colorado's Medicaid budgetary issues/problems/mess, even though Zachary has a top ten qualifying disability to receive Medicaid, he is on a years-long waiting list to actually receive the benefits. The story of Medicaid in Colorado is a lot more convoluted and difficult than that summary, but it gives you the picture: nope, we don't get it and won't be getting it for a LOOOOOONNNNGG time.

We are solutions-people, meaning when there's a problem we'll find a solution to it ourselves rather than sit back, whining and complaining the government isn't taking care of us. So I thought of getting another job, something for nights or weekends or even seasonal help to make extra money. Renee, knowing it was one of many solutions, objected because I already work full time, and if I worked even more then it would take time away from me being with Zachary and Renee. The result of which would cause even more stress and strife in an already stressful situation. The reverse was true when we thought about Renee taking on a paying job, even part-time. Who was going to watch Zachary? Would we pay to have a babysitter only so Renee could work in order to make enough money to pay the babysitter? It would get us no where and fast. Plus it would add on to the "time with husband and child" dilemma. Not to mention the fact that a special needs child NEEDS the full-time attention of a parent (i.e. MOM) and with additional stress and strife would only affect Zachary's overall quality of life in the home negatively.

On the encouragement of some family friends, Renee though it would be a viable idea to have a fundraiser. We would have an event to raise money to pay off Zach's existing medical bills (which were sitting on credit card statements because of Children's Hospital's lovely billing system... but that's a story for different day) and with any surplus, create an account strictly for Zachary's medical and therapy needs - an account that could pay not only for his regular medical costs, but also for alternative therapies not covered by insurance, like hyperbaric, accupuncture, chiropractic, etc.

I was opposed at first. I did not want to ask for money or take any kind of hit in my pride. After prayerfully considering it and looking at our other options, I was convinced by God, Renee, counselors, my pastor and others it was OK to do. It actually went back to one of my core beliefs - I believe in times of trouble, I can lean on the church and my community. This was all going to be for the benefit of Zachary and I would do anything for him as a father. I would beg on the street corner if I had to in order to get him what he needed medically. It's what we do as dads. So why not a fundraiser? I sucked up my pride and decided to go through with it.

[Side note: "John Q" has become one of my new favorite movies, mostly because I understand the main character. Now I'm not saying what the main character did was right or wrong. I'm also not saying that I would do the same thing. It's just a great movie showcasing the emotion and love a father has for his son and how far a father can go to save his child's life.]

Now before anything else, I want it to be clearly known Renee was the major force in planning this entire event. She was absolutely amazing in her organization and hard work - all of which was put in for Zachary. To make sure an account for him would be legit, she called the wonderful IRS and sat on hold for an hour and a half until she could talk with someone who set her up with a EIN number under the Zachary Charlan Benefit title. I also spoke with two different tax attorneys to get all my facts straight before we moved forward with sending the invitation flyers.

We told our pastor about the idea of having a pancake breakfast fundraiser. Well, he just happened to be good friends with the the owner of Abrusci's Restaurant in Wheat Ridge. The restaurant owner heard our story and donated his restaurant to host the event. He even offered to handle the breakfast food through his vendors. The restaurant does not usually serve breakfast, so when the owner inquired of the cost of breakfast food, the vendors were curious what it was for. He told them it was for a fundraiser for Zachary to help pay for medical and therapy treatments necessary to help a boy with cerebral palsy overcome a myriad of physical challenges. The vendors in turn donated all the food necessary for the event! Eggs, toast, pastries, potatoes, sausage, bacon, OJ, milk, etc, etc!

The idea was for us to have a free/open breakfast - no cost per plate or per person. It was based on donation only. That way families with many kids could come and eat for free and not feel obligated to have to pay more than others.

Renee also thought it would be good to do a silent auction. So through the help of Renee's mom, our Young Marrieds Group friends, church members and other friends and family, about 40 different auction items were gathered/donated including Mary Kay baskets, Wine & Cheese basket, Hunting Gear sets, books, autographed books, quilts, scrapbooking sets, restaurant gift cards, golf lesson at Golf Galaxy, rounds of golf at Buffalo Run, gym membership at Better Bodies, jewelry basket, beautifully framed photographs, etc.

Now I also wanted the benefit to be purposeful and informative, rather than just a fundraiser. The benefit was held before the election and Colorado had a ballot measure called Amendment 51 dedicated to end the waiting list of services for children and adults with developmental disabilities. We got two representative volunteers from the campaign to come to the breakfast and do two presentations, complete with flyers, buttons and yard signs. By the end of the breakfast, every single yard sign was gone. [Note: I did not include the campaign talk on the video, mostly because the ballot measure failed miserably in Colorado, so for right now Amendment 51 is over and done with. We did what we could, but quite honestly it was a tough sell when the language on the ballot description begins with the words "Do you want to raise your taxes $187 million..." especially during this time.]

In order to bring the community into our lives, I wanted Renee and I to address the crowd to explain exactly what cerebral palsy is, how specifically it affects Zachary, his improvements, his cans and cannots, and what we are doing both medically and therapeutically (both conventional and alternative) to help him. [This is the main core of the video clip - one of our presentations.]

We decided to run the benefit in "waves" so we would have a 6:30-7:30 wave of people for breakfast, then 7:30-8:30, and 8:30-9:30. We would do "presentations" of the Amendment and our talk on Zach during the mid-point of each wave. It worked out very well, although the first wave was dead except for one couple (so we only had two main presentations), but when 7:30 hit the people came steadily. Then at 8:30 it was swarming. In all we had around 200 or more people attend.

We originally planned on just using one room (in the video, it's the room where the food buffet is located) for everything, with the main dining area of the restaurant on reserve for any "spill over". Well by 8:30, both rooms were full.

Overall, it was extremely successful. We actually had many people come up to us and thank us for having the event and talking about Zachary's condition! God has truly blessed us by providing bountifully what Zachary needs to pay for his medical and therapy costs. We are able to get him hyperbaric treatments, music therapy, chiropractic, and soon accupuncture. We also do not have to stress over how we're going to pay for the other conventional therapies like physical, occupational and speech nor the upcoming eye surgery, nor the botox treatments, nor the new prescription eyeglasses, nor intensive therapy camps.

We will definitely manage Zachary's account very well and every single penny goes to his needs. Eventually, we will move the fund over to a Special Needs Trust, which has more legal protections and exists as a standalone legal entity (and will not affect his Medicaid standing, once he gets off the waitlist).

So here's the video - it starts out with a view of both dining rooms buzzing with activities of people eating breakfast and perusing the silent auction items. Then it goes into our pastor introducing Renee and I to the crowd as we talk about Zachary and concludes with another fast-forward look all the people.

Zachary, Lord of the Rings

Zachary loves anything he can do on his own. He loves getting praise for doing actions as well. One of the recent activities he's learned is to take off toy rings from their stand and then re-stack them. It's difficult for him to do it - requiring a lot of concentration and energy, but we are so proud of him.

This is a little video I put together of Zachary being the Lord of the Rings (cheesy, I know, but that's how I roll sometimes).

Zachary rolling & army crawling

I took this short video over a month ago, but just had time to get it on the computer and post it now. Zachary's been rolling over for quite some time now and has learned to army crawl a bit. Even in the span of a month, he is doing so much better now than he was in this video. He has more control of his left hand and can army crawl better.

I'll have to update soon with more recent video. But this gives an example of his movements recently - hey, he's mobile! We had to get a gate for our stairs, praise God!

Inspirational person with CP

This was an ABC News "Person of the Week" story.

http://spotlight.news.yahoo.com/v/10682338/abc/20081115/av_abc_wnt/_ynewsspotlight_abc081114_wn_pow

Blog Fan

So we were at our ARC Mobilizing Families class last Thursday for the resource fair and one of the resource representatives recognized Renee and I from our blog. They had been a reader ever since they surfed upon our blog from searching Amendment 51 information.

It was just a really nice feeling to be recognized randomly and in person, from our blog. They were Christian too, and commended us for talking about our faith.

Although I may not have a ton of blog hits or huge fan base, it was just really meaningful to have someone we did not know previously recognize us.

Zach's first artwork

It's been a rough week and a busy one. On Monday, I busted my bursa sac in my elbow. That was pretty painful. Tuesday... let's not talk about Tuesday. Wednesday, small group; Thursday ARC Mobilizing Families class; Friday, Zach got botox and phenoyl injections again; Saturday, I had to be the substitute preacher for our church.

But I got something to cheer me up: Zachary's first artwork. He painted a pumpkin gourd at Occupational Therapy using these soft styrofoam holders to create a bigger grip on the paint brush.

So here I get to be a bragging parent! It's definitely a expressionism piece.

It's the Great Pumpkin, Zachary Charlan!

Another photo journal. This is us visiting the local pumpkin patch and carving pumpkins on the kitchen floor. And another great sensory integration session with Zachary. He got to feel the guts and seeds - all the ooey gooey goodness of pumpkin carving!









You didn't tell me you were gonna kill it!

What I believe, What I Vote For

I write this post on the eve of the election, not to be divisive, but to explain my beliefs in what I hold near and dear to my heart; what I value; what my worldview is; what I honor and respect; what I believe is best for my family; what I believe is best for my special needs son; what ultimately molds my decision as a U.S. citizen during this time.

I’m one who often times is passionate to a fault, too engaged and argumentative – this affects my tone and body language. It becomes intimidating to many around me. Because of this, I have made a very big effort to back off getting so wrapped up in politics. Don’t get me wrong – I’m still involved and have the ability to conduct civil discussions. Rather, I was convicted by the word of God to hold back and relax.

The Apostle Paul tells us directly in Romans 13:1b, “For there is no authority except from God, and those which exist are established by God.” No matter who you vote for, no matter who wins the election – it’s already been determined and sanctioned by God, the Ultimate Authority. We humans love to wrap ourselves in the emotions of it all, thinking we are so powerful.

Jesus stated it matter of fact right to Pontius Pilate’s face. In John 19:11a, Jesus answered Pilate, saying, “You would have no authority over Me, unless it had been given you from above;”

McCain, Obama, Nader (yeah, right!), but whoever wins, it is all part of God’s will.

The word of God has such powerful effect. It changed my heart instantly and I decided not to get so wrapped up in it all. God’s got it under control. I still have a duty as a citizen of my country to go out and vote for the best candidate, the best party most reflecting the values and principles set forth by God’s Word. I still have a God-given mind, opinions and a duty to participate in our democracy, something I carry through every voting year.

That all being said, knowing God has it all under control, here is my worldview, which affected my voting decision.

I believe in national security – protection and security for the entire United States as a nation-state, safety and security for individual families and people across America. One campaign believes in protecting us from our enemies. The other believes they should sit down and talk with them.

I believe in the sovereignty of the United States of America. One campaign will enforce and utilize the sovereignty of America to protect its citizen, interests and allies. The other would seek permission from the United Nations and poll the world’s approval before taking action.

I believe in the sanctity of life. One campaign has a voting record supporting life, showing their belief in the sanctity of it. The other has voted for death-on-demand, approving even the most atrocious, heinous acts of death.

I believe in personal responsibility. One campaign believes in personal responsibility, especially in their reform platform. The other campaign and affiliated political party believes on blaming every one else, especially Republicans, and putting your responsibility largely in the hands of government.

I believe in small government. One campaign wants to reduce the size and scope of government and stop it from becoming a “big brother” entity. The other wants to expand government in many aspects of our lives to the point of declaring they know what’s best for us.

I believe the U.S. Constitution is as viable a document today as it was 200 years ago and should remain the spine of our nation. One campaign agrees and will protect the freedoms given to us by the Constitution. The other campaign believes the constitution is fundamentally flawed, especially when it comes to mandating or allowing for the redistribution of wealth.

I believe in free market capitalism. One campaign believes in the American dream, to work hard and be successful, to have a free market, capitalistic society rewarding people for being hard workers and entrepreneurs. The other campaign believes in redistribution, sharing of the wealth – a socialist ideology – brought about by higher and higher taxes.

I believe in the First Amendment. One campaign allows free speech, talking with the press openly, even having the guts to appear on talk shows and parody shows that lampoon them night after night and whose cast members openly hate them. The other campaign has shoved three newspapers off the campaign plane this weekend and has blackballed news stations because reporters had the guts to ask tough questions.

I believe in the Second Amendment. One campaign believes in an individual’s right to own firearms and to defend themselves and their families and has a clear voting record protecting it. The other campaign has the most anti-Second Amendment voting record for any presidential ticket, ever.

I believe in lower taxes and fiscal responsibility. One campaign’s presidential candidate has never asked for an earmark on a bill and believes in cutting taxes for businesses and the middle class. The other has asked for hundreds of millions of dollars in earmarks, has voted for higher taxes on those making $42,000 a year, keeps lowering the yearly wage (from $250,000 to $120,000 in a few weeks – signs that it will keep going lower and lower) for their new tax plan and has an ultimate plan for grandiose spending to implement their social programs and huge expansion of government.

I believe in checks and balances within government. One campaign will be the check and balance to the Congress and has a clear record of working well with others across the aisle to get jobs done. The other presidential candidate has never worked with anyone across the aisle to get the job done, and if elected could bring in a very far-left one-party government (and Supreme Court justices).

I believe in racial equality. One campaign has not brought up race at all. The other has played the race card repeatedly and without warrant.

I believe in times of trouble, I can lean on the church and my community. One campaign supports this philosophy. The other believes all citizens should lean on the government for help.

I believe in the special needs community. One campaign has a candidate directly affected and involved in the SNC. The other has no such connection nor personal experience.

I believe that America is the greatest nation in the world. One campaign believes this. The other believes more in America’s flaws, wants to change the fundamental dynamics of what has made our country the greatest on earth, institute socialist policies, weaken our standing in the world (and the wife of their presidential candidate has never been proud of her country until her husband was running for president).

I believe the President of the United States should be a well-qualified individual with years of experience under their belt. One campaign’s presidential candidate has 22 years of military experience and more than 25 years of Congressional experience. The other’s presidential candidate has absolutely no military experience and had only two years of Senate experience before announcing his presidential run.

I believe sacrifice for your country should be held up to the greatest of esteem. One campaign has a presidential candidate who shows the visible, physical effect of sacrificing for his country as a POW for 5 1/2 years (and gets lampooned by “the media” for these physical deformities). The other presidential candidate has sacrificed nothing for his country.

I believe in the United States military. One campaign’s presidential candidate has given 22 years of his life to serving in the U.S. military and believes strongly in the power, resolve, success and ultimate victory of our forces. The other still cannot admit to the successes of the military in Iraq after the surge, and disrespects the military by considering it a mistake for the thousands of soldiers who gave their lives.

I believe freedom is not free. One campaign knows this all too well and has the scars (and military sons serving) to show it. The other presidential candidate does not understand nor appreciate the principles of freedom coming with a price.

I believe ultimately in Jesus Chris as my Lord and Savior, sovereign over all and that the Bible is the true, inerrant Word of God. One campaign believes in the foundations of this country on Christian principles and has a Christian presidential candidate and a VP candidate who is staunchly conservative Christian, believing strongly in the absolute truth of God’s Word. The other has lampooned the Bible in speeches, claims to be a Christian, has a voting record suggesting otherwise, and has a 20-year pastor of extremely questionable, extremist views, all of which are very un-Christian.

As I said above, this is what I believe and what directed my great freedom of voting. This is not to persuade, demean another’s decision or be divisive. God is in control over all, He is the one that I will always rely upon, He is Lord and Savior; not a presidential candidate.