The Coolidge Controlled Chaos Project

A few weeks ago I just let go, I just couldn't hold everything all at once a second longer. The day I let go, I was in my boss's office and everything spilled everywhere. The only thing that I could think to say was "I need a break, can I take a break"? And thankfully she said "yes".  That was when the "Coolidge Controlled Chaos Project" was born.

What is the "Coolidge Controlled Chaos Project" you ask?  Well, it actually is a project that started a few months ago but we didn't know that's what we were doing. The "Coolidge Controlled Chaos Project", also known as "CCCP" (just for my friend Meme) is an attempt at controlling the chaos in our lives instead of Chaos controlling our lives. We can't ever get rid of it but there are probably a few more thing that can be done to help keep it reined in a little better but we just haven't had the time to do it. I have finally figured out, we have to MAKE the time. So I am making some time. 

I am currently taking a 2.5 week leave of absence from work to welcome Chaos into our lives, to love it, to feed it, to nurture it and to make a place for it in our new home. And the count down is on to make it happen!

But like I said, this project didn't start with my LOA, it started when we decided to move to a one story house. Chaos lived in the old house but it was never invited and it would follow Chase around relentlessly!  They would throw things from the 2nd floor playroom. They thought it was fun to play on the stairs and fall down them. And they thought it was hysterical to climb on bookcases, slip on chairs and go to the ER for stitches. So we let go of a little extra space and got ready to sell our house. We hadn't even put the house on the market and we ended up with an offer and then sold it 3 days later with the help of our fabulous relator, Heidi Mansoori, at 5 Star Property.  The move allowed us to take the house element of chaos out of the equation, giving it a smaller area to play.

We kept Chaos a bit confused by going to Bethesda, MD in June for our trip to the National Institutes of Health 2 weeks after we moved. It was one of the best trips I have ever had. I read 2 books and slept more hours in one night than I can even remember. Big shout out to Andy for organizing everything!  It was perfect!  But I still hadn't figured out why it had worked...Chaos can't surprise you when you invite it.

Chaos snuck back up on us once we got back from the NIH.  We found out on that trip that Chase and Madison's neutrophils and white blood cells were bottoming out. We had to go back to the Hematologist for more appointments, more tests and more outrageously expensive blood work bills. And with this issue still unresolved, more waiting.  I hate waiting.  But on a good note, Madison completed her one year anniversary of weekly infusions this summer. Way to go Madison!  We miss you Dmitri!!!



Chaos really took hold of the new house when Andy accepted a job requiring extensive travel. Andy had been on kid duty for the last year and it was time for him to get back in the work game and this was/is the perfect opportunity.  But it meant we needed to add to the team and that was easier said then done... Long story short, Madison's "sweet" disposition had 2 sitters quit in tears in the middle of the day leaving me with Andy traveling and no one to manage the new school schedule. I lasted about 6 weeks before I finally cracked.

So the time is now to welcome Chaos with open arms into our house. I am ready to understand Chaos with it's unique personality and to help guide it into our lives...  Because, Tick-Tock-TIck-Tock....the clock is ticking.


Some of us think holding on makes us strong; but sometimes it is letting go.
Hermann Hesse

Do you have that closet? You know the one, the closet by the front door that instead of hanging up the coats everybody just throws them on the floor. And it’s not just coats, it’s the back pack, the shoes, and the clothes from yesterday that didn’t make it into the dirty clothes hamper.  Maybe this closet is under the stairs with the vacuum and the 3 computer monitors and the box of receipts, and the lost library book that nobody can find because the bag of Goodwill stuff got tossed in there after you missed the pickup date.  

Everybody’s got one (maybe 2?) of these closets, right?  Tell me you do! Most of the time you can close the door of the closet when company comes over and all is good, right? There are, also, certain people that you don’t mind if they peek into that closet because they don’t care that you don’t hang up the coats, you’ve seen their coats too.  I, personally, just don’t like my coats hanging out ALL the time and I still hope that one of the kids doesn’t walk by and decide to just open the door of that closet to expose the mess on the floor.

Having 3 kids with a rare genetic condition can get your closet pretty messy, pretty fast. There are sometimes when you just can’t keep up with the amount of clutter that gets thrown into the closet and it seems like there is never any time to straighten it out.  Well, the last 2-3 weeks, my closet has just gotten way too full and coats are not just spilling onto the floor, they are projectile vomiting out of the closet. My closet isn’t just hurling its mess onto family and friend, I feel like everybody who sees me gets a coat thrown on them. I have no idea if strangers can tell that my TTD closet exploded.

But I get it now…seems like every day I understand a little bit more and today I understand that I will really never be able to CLOSE the closet door completely. There is just always going to be WAY too much stuff in there.  To know me, is to know a person who struggles and champions 3 kids with a rare, incurable condition and that makes my closet explode so I WILL always have a coat or two hanging out.  I need to be ok with that. Thanks to all my fabulous friends, family, and support people who understand me better than I ever will and who simply and kindly hand me a hanger so I can tidy up my TTD closet a little bit at a time.

World Rare Disease Day - 2012

World Rare Disease Day - 2012

January is almost over and I am happy to report that Madison has met her deductible for the year! We will meet our family deductible the 1^st week of February and our out of pocket max should be taken care of sometime in March or April.  And this is just the stuff that I know about. That’s how ya roll when you have 3 kids with a rare genetic condition.

February 29, 2012 is World Rare Disease Day.  The main objective of Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives.

I am hoping to help raise awareness by being more open about how our RARE condition affects my family.

Trichothiodystrophy, which is also called TTD, is an autosomal recessive disease, characterized by brittle, sulfur-deficient hair and multisystem abnormalities. The hallmark of this condition is the brittle hair that is sparse and easily broken.  It is also associated with Ichthyosis which is dry, scaling skin that may be thickened or very thin. That is what I thought TTD was when I first heard the diagnosis.  I thought the kids would have a little dry skin and cute, short hair.  Well, they do have some dry skin that is maintained with lotion and the kids’ hair is short and super cute thanks to our fabulous hair dresser (if you are in the Dallas area call for her number – she is amazing!).  However, as I live each day, add each new specialist; I find out TTD effect so much more than skin and hair.

TTD is a rare.  Last stat. indicates that there are 112 cases identified world-wide and 19 in the United States (we have 3 of them).  A rare disease is defined as a condition with such a low prevalence in a population that a doctor in a busy general practice would not expect to see more than one case a year.  Again, our doctors see 3 cases… multiple times every year.

You may say we should go to Vegas or play the lottery but the stakes we are playing with are pretty high.  Considering the following statistics, I think I will keep what money I have in my pocket:

·    30% of children with RARE disease will die by their 5^th birthday (3 out of the 3 have made it past this mile-marker.  Chase will be 6 next month)

·    75% of rare diseases affect children. (100% of our kids are affected)

·    These rare conditions are chronic, life threatening and FATAL (We are doing our best to beat this “fatal” statistic)

·    There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment (We treat symptoms and hope for the best)

We recently were referred to a hematologist to evaluate 2 of the 3 kids for immune deficiency.  At this visit we were told that we may be gambling more than we thought.  We were told that Chase has “Lazy T-cells”, that he is an “immunologic time bomb”, and that he should wear a mask when he goes outside to play (Chase is a 5 year old BOY).  We were told that Madison should continue her school at home, that she should wear a mask when she is around people, that there is another IV medication that she can take if her labs drop below a certain level, and that the only way to “fix” her immune systems is to have a transplant (Madison is 9). That news came last week so it is pretty fresh but I guess I am happy that there are a few options before we hit that transplant decision!

When we first got the Trichothiodystrophy diagnosis, I thought it was a condition that affected the skin and hair… a form of Ichthyosis. But TTD is so much more than that.  This TTD is BIG!  I worry every day about doing stuff that most people don’t even think about. I worry about taking the kids to school, having people over, an ear infection that turns out to be MRSA, and a stomach flu that leads to dehydration.  TTD is not a condition that you can put a little lotion on and be done with it; this TTD is determined to educate me on a whole spectrum of body systems from dermatology to hematology and everything in between like audiology, endocrinology, gastroenterology, immunology and ophthalmology.  You know what is really funny; I don’t even have a dermatologist.

Be aware; Care about Rare.

If you want to blog hop to other Rare blogs, follow the below link…

<script src="http://www.linkytools.com/thumbnail_linky_include.aspx?id=127101" type="text/javascript" ></script>
To get involved: http://globalgenes.org/