But imagine the joy of watching this child learn to hold toys the past year.  Imagine this child who cannot speak but lights up a room with his smile.

Michael and Nicole Zane lived with the realities of two different fevers turning into aspiration pneumonia and parainfluenza virus in the last year with their eight-year old son Jake.  But, they are happy he now can choose his own toys—especially vibrating ones that will make him giggle.

Jake was born with Pallister-Killian Syndrome (PKS).  According to the PKS kids website PKS is a chromosomal abnormality that can include the following characteristics:

• Low muscle tone
• Facial features such as high forehead, broad nasal bridge, and wide spaces between the eyes
• sparse scalp hair at birth
• high, arched palate
• hypopigmentation
• extra nipples
• cognitive and developmental delays
• diaphragmatic hernias

PKS is considered a rare disease, with fewer than 1000 cases diagnosed in the US.  But it is far from the only rare disease.  Did you know that 1 in 10 people are afflicted with rare diseases?  That’s over 350 million individuals worldwide!  Sadly, 30% of children with rare diseases die by their 5^thbirthday.

30 days from today is the World Rare Disease day!  The R.A.R.E Project, which supports advocacy-research-education of rare diseases, encourages you to WEAR JEANS on 29 February 2012 to increase awareness of rare diseases, since 80% of rare diseases are genetic in origin.

You can also help unite 1 Million for RARE on the Global Genes Facebook page, or donate a bracelet to 7000 bracelets for Hope campaign.

To help support the R.A.R.E Project, I am part of a blog-hop today.  There are over 40 bloggers committed to spreading word about rare diseases, which impact so many families.  Feel free to read any of the blogs writing about rare diseases today

Hopefully by joining forces with other rare diseases, additional funding can be found to find a cure for some of these so-called orphan diseases.

For today, Jake and his two siblings, six-year old twins named Brandon and Kayla will live and love within their family.  Brandon might play soccer or ride his scooter after school, Kayla might start a new art project or attend gymnastics class. Hopefully Jake will grab onto one of his vibrating toys, while they are all surrounded with family and friends who treat Jake like any other family member.  His parents truly believe that having Jake in their lives will make his siblings more compassionate adults, as they help and love their brother daily.

Nicole, Jake, Kayla, Brandon and Michael Zane

I am blessed to be able to “share the joy that is Jake”  (quote from Jake’s mom Nicole) with all of you. C

PS.  Here are all the other blogs sharing about rare diseases today.   I am having trouble getting all the Avatars to show (WordPress issue, not mine), but you can link to any of them here.

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We will all be writing to spread the word about World Rare Disease Day, which is on February 29th. Come tomorrow to meet Jake, an adorable boy with one of the more than 7000 rare diseases. C

Yes, it’s very different, as she now tries to include the life-changing role of mother with the challenging, evolving, creative role she has held in the many years we have worked together.  It can certainly be overwhelming, trying to manage the changing facets of our lives.

Do I tell her how long it takes to find that balance, to work and parent?  How it shifts just when we get into a routine, sometimes subtlety, sometimes glacially? How even a minor shift can throw off the pace, change the day’s goals?  How I feel like maybe I have found it—a couple days a month—now that my oldest is 17?  Oh, and we all have a different center, and what is balanced for you  is confusing to me?

First, give yourself a break.  Let yourself get used to your new routine, enjoy quiet moments with your baby—they really do slip by before you know it. After time, you will find a balance of work, baby, partner, extended family, friends, pets, home, illness.

BUT, one day you might realize that you lost a bit of yourself along the way. I know I did, as did many of my friends. I wish someone had advised me to within a year try to remember what you love to do–or want to try– when you are not working, mothering, partnering, cleaning, shopping, erranding, sleeping.   Explore your mind, challenge your body,probe your soul and do not feel guilty for continuing your own journey through life.  It will give you peace, relief, joy, quiet. A smile.

I think that finding something of your own is so important to happiness, whether you choose to work outside the home or not, once you have kids.  We all know people who can only talk about their kids, their kids, their kids.  Boring. Yes, I want to hear about their accomplishments, their tragedies, their amusing moments.  But be able to converse about the world outside your home too.

“Don’t let your circle of friends get too small. Variety keeps life interesting,” that’s the advice I have given my kids since they were young.  And I live by that myself. C

From work, I expect to slave many hours per day at my computer, on the phone, in meetings.  And for those extra hours I will get more demands from clients, tighter deadlines, project piling on until I learned to say NO!, an occasional thank you. Vendors are working harder to keep up with rapid technology changes, the same tight deadlines, and the new products reaching across departmental lines.

I have learned to lower my expectations of my children’s grades, especially when they are viewable daily online. A recent conversation made me realize I was striving for unattainable perfection in them.  I will accept the reality that my kids are putting in extra effort, some subjects are easier for them to comprehend, and some interest them more than others.

As they get old enough to choose their electives for next year, they need to select ones that interest them, so they can start to form their own future paths, with some open conversations about where that path might lead. Outside of school, I expect that they will make mistakes, hopefully not repeat them.

I have been married over twenty years, with many of the “normal” events of marriage shaping the adults we have become–moves, children, illness, job changes, pets, new hobbies,old hobbies, loss of friends and family, illness, planting a garden, choosing paint colors, buying a new car-a sofa-toilet paper, vacations, volunteering.

Sometimes I have absolutely no expectations, making it easy for Bob to succeed.  And sometimes the everyday distractions make it possible for us to succeed together.  Ever make a to-do list that’s impossible to complete in one day? One week?  A lifetime? A marriage to-do list never ends.  And to set sky-high expectations will only doom it daily.

From my friends I have learned to accept their offerings–a meal, a smile, a text, a phone call, a gift, a flower, a joke, a card–with grace and gratitude.

And from myself, as my abilities to do much have diminished since surgery, I have lowered my expectations for myself.  I have raised the expectations for my family to contribute more with the house cleaning, the shopping, the cooking, the laundry, the dogs.  Being forbidden to lift more than 10 lobs for a full 12 weeks has certainly reshaped my reality.

And tonight, my expectations for this blog post have dropped dramatically from what I envisioned while walking to what I have typed into this computer.

C

PS.  The morning after addendum on 1/12/11 is that I realize that this list of expectations could be much longer.  I have left off a myriad of people/organizations we have expectations for, who may or may not live up to them:  the President, local politicians, the mail lady, the next U2 concert I attend, the grocery store clerks, bus drivers,  the next episode of “Top Chef”.   The list goes on.

I say, bring it on!  The crowds may thin out by next month, but with the obesity problem hitting our nation right now I think we should be  thankful that people are thinking about their health, at least moving from the front of their TV and computer screens to raise their heart rates for awhile.

I read an article this week in the Chicago Tribune about a gym that recently opened, specifically for people who want to lose 50+ pounds.  Once they “graduate” they leave that gym. The article also talked about overweight people feeling uncomfortable, unwelcome in “regular” gyms since they can only walk a short while, struggle in classes.

I now have more empathy for those people who feel awkward in a gym.  I had a hysterectomy two weeks ago, and just this week I went to the gym to walk the treadmill.  And right now it is a vveerryyy slllooowwww walk.  At first I noticed a few people around giving me hidden glances.  I found myself explaining to people who I know why I was only walking, at first embarrassed by my “exercise”.

But, after about 30 minutes, I realized that I was at least doing something to get healthy again, turned up my music, secretly smiled to myself and kept walking.  Then went back the next day and walked more.

So when you see someone moving slowly, it might be their first time at the gym.  Or maybe they are recovering from an illness, injury, childbirth, surgery. Don’t look sideways at those who cannot figure out a weight machine–offer to teach them.  Give a smile to someone looking nervous before their first class.  So they can’t run as fast as you on the treadmill?  Get that smirk off your face and be your own competition.  And know that we do notice you looking.

It’s the only exercise I can do for six weeks–no yoga, no horses, no cross country skiing (if it ever snows this winter), no walking with my two dogs, no weights.  But I will continue to  walk on the treadmill, outside on spring-like Chicago days, to stay in some shape.

So, no more excuses.  Get off your butts and move.  And if all you can do is walk, I applaud you. I may join you.  Happy new year. C

I forgot how intimidating it can be to speak in front of a group of unknown people, especially when it is on a controversial topic, and you do not know who is for and against your opinion.  We do not walk into the meeting and sit of separate sides of the room or wear colors to state our opinion.  Some people were at the meeting to discuss other agenda items, which muddled the audience more.

The previous meeting had been solely about the proposed drug testing, with about 100 attendees, the majority speaking out against the proposal from what I have been told and read about in the local papers.  This meeting only six people signed up to speak, four against it and two for it.  Only one person for the proposed drug testing and me against it had not spoken previously.An interesting side note that neither person who spoke for it has students currently in the district but both live within the boundaries.

After speaking, the board decided to send out a second survey to LZ District 95 parents this upcoming week.  ALL DISTRICT PARENTS should read very carefully and respond to this survey.  The last survey was so poorly written and skewed to achieve their goals of pushing this agenda through–inane questions similar to “Are you against drugs?”  that I encourage you to respond directly to the board if you feel there is bias in this survey’s questions.

Also, I think that EVERY parent should reach out individually to the board to tell your opinions.  This passion and reasoning are what the board should be listening to.  Attend the next open meeting to state your opinions (early November) before the school board puts this proposal to a vote potentially in November.  The board seems to be putting a HUGE stock into this survey, so make your voices heard.

Even if your children are in elementary school, you will be impacted by this proposal.  Do you want the school district given the authority to randomly test any students involved in extracurriculars and with parking privileges at any time–no parent present–or do you want to be able to monitor your children’s activities yourself?  The supreme court has previously ruled in other cases that all students cannot be tested, which to some of us means that there is inequity in the education if the school district proceeds with this.

No matter which side of this sensitive issue you fall on, this is such a great opportunity for us to talk to our children about drugs–what are THEIR thoughts on the proposed drug testing?–and show them that we care enough to get involved in this important issue.

A synopsis of the meeting I attended last week from the Daily Herald can be found at http://www.dailyherald.com/article/20111014/news/710149902/   .C

1/2/2011 addendum:  The random drug testing was voted down by the school board after reading the results from the survey and listening to the parents.  This process really showed me–and taught my kids–that speaking up CAN have a difference.  We can’t always win (like this time) but it would be worse to not say anything, lose, and WISH we had spoken up.  C

Dear Lake Zurich School District 95 Board Members:

As the mother of three children in the LZ District 95, I am opposed to drug testing at LZHS, or anywhere in district 95.  I am also adamantly against ONLY drug testing of kids involved in extracurricular activities and those with parking passes.

There are several reasons for my opposition. First and foremost, it is MY responsibility as a parent to monitor or test for drug or alcohol usage. I do not think that “randomly” choosing students—who are involved in school activities—to test is the job of the school district.

Second, I feel this is a huge invasion of privacy for our children.  Though I cannot change rules already in place about repercussions from other offsite drinking/drug use, I personally do not think that the school district should be testing for things students do off site, off hours, off school days.

By implementing drug testing, you are assuming that my children are guilty until proven innocent.  Unless they are behaving strangely or putting themselves or others in danger, I do not think that they need this additional stress or imposition in their daily school lives.  Worrying about exams, classes, homework, social pressures, participating in teams and activities, and outside jobs is stressful enough for these teenagers. They should not have to worry about being pulled out AT ANY TIME for being drug tested.  Being singled out will add additional stress to each day, wondering if they might be next.

What about the hair testing itself?  Online research will show that hair testing shows a bias to dark haired or dark skinned individuals.  While that may actually benefit my children, I do not think this is fair for ANY child.  And you will penalize a child for activities they may have participated up to 180 days ago?  Wow, that is shocking.  Maybe I should be grounded today for things I did in college.

Has the board seen the many websites that sell products to help pass a hair drug test? The kids who might try something one time probably won’t buy these products, and they might fail a test.  Some of the “cusp” kids who aren’t quite sure which road to take might take the easy route of either buying those myriad or products or simply falling “out of notice” of the school board random testing by uninvolving themselves in all activities—and perhaps moving down the wrong path.

Finally, my daughter currently at the high school and I talked at length about these issues – which is exactly what parents are supposed to do.  In addition to having similar feelings, she insists that the results will not stay confidential.  With texting making the gossip grapevine almost instantaneous, students will be able to communicate who is tested, who is removed from activities, etc.

While I think that the school board had good intentions with this effort, I strongly believe that the board should listen to the residents and let us parent our children and the district educate them.  And remember that these are teenagers, who will make mistakes.  Isn’t that one way we learn—even as adults?

I remember first watching The Lion King (on VHS no less) shortly after Tara was born, as she lay sleeping in my arms, home alone.  I knew nothing about the movie and –spoiler alert!!–I was stunned when Mufasa was killed during the stampede.  Now, this is a Disney film, so I should have known a parent would die, but thankfully we had the non-surprising redemption by the end.  I cried, I cried during and after the movie.

This was Tara’s movie of choice for several years.  I honestly think I watched or listened to The Lion King over 100 times. We fast-forwarded  when Scar recruited the hyenas with his Nazi-esque song, toddler terrifying.  It’s even scarier on the big screen, but thankfully all of my kids beyond that today.  We recently found the stuffed Simba and Nala from when Tara was younger, a few of the myriad of The Lion King memorabilia we owned.  We all love the Broadway show of The Lion King too.  So in the spirit of the original film.

Five days after the movie refrains of “Hakuna Matada” and “I Just Can’t Wait to be King” are sung, hummed, laughed en masse or in private. It’s truly time for my kids to take their place in the Great Circle of Life.  C