Why Don't You Blog More Often? (or Perspective, Part 2)

Not too long ago a friend of mine asked me, "Why don't you blog more often?  You say you like doing it and people enjoy reading it...so why don't you get on there and write more"? 

 First of all, I really do enjoy writing in this blog.  It's sort of emotionally liberating to write down whatever is on my mind...to let it go and release my thoughts into the cyber world.  This blog helps me organize and "flesh out" the random and crazy thoughts that bump around in my head: things like how I love my children equally but differently and how we as people have so much in common if we'd just take the time to look.  I love this blog because it gives me a way to share my stories with people and remind myself of important times in my past.  This blog is a journal and a diary and a letter to anyone who wants to read it.  It is a place for me to reminisce, inform, remind, inspire, and brag and I really do enjoy being here.  So...back to the question then, "why don't I write in my blog more often"?  The sad truth is, I just don't have the time.

I tried writing in the blog about a week ago when I had some free time and I ended up deleting the entire thing because it was just one big pity party and I didn't feel good about what I'd written.  It was about poor poor me...I'm so busy that I don't even have time to sit at the computer and write down a few paragraphs.  Before I posted about my tragically ladened life, I went back over my old blog posts and finally I got to the one that started it all: the one about perspective.  Geez, that was a bit of a slap in the face!  Here I am feeling sorry for myself because my life is so full and active.   Let's put it all into perspective:  my calendar is overflowing with activities and events that I've chosen to be a part of.  Now, granted, some of the things that I do are not by choice but out of necessity such as doctor's appointments and therapies for John.  But even things like taking the boys back and forth to sports or cub scouts are not burdens, I really enjoy seeing my kids participate it these activities.  I love seeing them grow in their skills and friendships.  I volunteer in their classes and at their school because I WANT to.  I want to see what their doing in class and help the teacher.  I want my children to be able to enjoy things like a school variety show and play and if that means I have to help make it happen...then so be it!  I chose to be a stay home mom for this reason...so I could be a big part of my boy's formative school years.  I want to be a presence in their lives while they still want me to be present.  So, if that means taking them to sports and cub scouts and volunteering to file paperwork in the back of their classroom for an hour, if it means making sure John sees the right doctor's at the right time, if it means heading the committee for the school performance and carving out time to go to a student of the month assembly or a reflections reception then I need to remember that this is an honor and a privilege and a CHOICE that I made when Eric and I decided to have children and when I decided to forgo working to be a full time mom.

Other things on my calendar include bible study, dinner's, lunches, mani/pedi's with friends, and visiting with my grandma.  I love going to bible study every week.  The love and acceptance and fellowship from these remarkable women is something I crave in my life.  Dinner's and lunches with friends...seriously, how can I complain about spending time with good friends?  It may take time and effort to clean the house or organize and prepare a meal but it is all time well spent.  It may take time out of my day to go meet at a restaurant but if I'm going to complain about that then...geez...I don't deserve the friends I have!  And having someone massage my feet and paint my nails while I visit with a good friend...again...seriously...how in the world can I complain about that?!?  Visiting with my grandma is something I do out of love, respect and a strong family bond. She's always been there for me and now it's my turn to return the favor and be there for her.  My grandma is 87 years old, she lives about 60 miles away from me but I make it a point to see her at least once a week.  She is frail and tired and craves company.  She has a full-time caregiver but she just lights up when her family comes in the room.  Even when things are busy and hectic I go visit Nanny because, you know what, it all boils down to perspective again.  The dirty dishes in my sink aren't going to care if they sit there a few more hours but Nanny will care if I said I was going to come see her and then cancel because "I'm too busy".  The laundry can wait another day or two but a day or two to Nanny may seem like a lifetime.  

So, that's why I don't blog more often.  I have a full, active, crazy life that keeps me going all the time.  I have a wonderful family that needs my attention, love and support every day of the week.  

I will continue to write and blog as I can because I really enjoy it but I refuse to feel guilty because I don't blog on a regular basis.  This blog is just one of many things in my life that makes me happy and complete!

Oh, and did I mention that I signed up for a tennis class?!?  :-)

What Do You Have In Common?

"What do you have in common"?  Last week I went to a women's bible study. At one point we were asked to form groups of 6-8 ladies and, in ten minutes, find out what we had in common.  We were told that nothing was too small and that there would be prizes.  So, I get together with a group of women that I'd never met before and one of them says, "I wanna win this".  Someone else says, "me too", another, "oh yeah, there's always good prizes", and so on until we discover our first commonality: we are all competitive and want to win the "what do you have in common" contest!  Now, don't forget that when we were given our instructions we were told that "nothing is to small to count" so, at first, we were throwing all sorts of things out there:  we were all women, we were all at a bible study, we were all in the same room, we're all daughters, we all had shoes on...etc...after a while we had to start discussions and conversations to find out what else might connect the eight of us but we found out things like we all own ugg boots, we all own a crock pot, we've all been to Hawaii, we all had some member of our family in the military and we'd all had the chicken pox.  After the ten minutes were up we had come up with 35 things that the eight of us had in common.  We figured we'd be in the running to win the prize.  The first group announces that they found 8 things in common, second group: 12, third group: 8, fourth group 6, the fifth group said that the only thing they had in common was that they didn't have anything in common.  Well, needless to say, we won. 

After the meeting I started thinking about the game and it made me sad to realize that a group of eight ladies sitting together for ten minutes couldn't come up with any similarities.  I started to think that too often, as people, we are quick to see how different we are in things like skin color, political views, clothing choices or parenting styles but we are slow to acknowledge how much we truly have in common.  Basic things like we are all human, we live on this earth together, we are all someone's child.

I loved how during the commonality game our group was able to come up with quite a few superficial things right off the bat but after discussion and conversation we came up with some really interesting and deeper similarities.  

It makes me wonder, when I walk into a store or a movie or I'm sitting in a waiting room and I look around at all the people...what do I have in common with them?  Who else in the room has had a parent die of cancer?  Who has a spouse in the military? Who enjoys theater? Who likes soccer?  Who has a child with special needs?  There is always someone else out there who can commiserate and understand what we are dealing with.  There is always someone, somewhere, that has been through or is going through a similar situation.

I guess what I learned from this exercise in similarities is twofold.  First, we all have things in common, some things are quick and easy to identify while some may take a bit of discussion and conversation to uncover.  Second, we are never alone in our journey.  We will never be the only person to have experienced a certain joy or despair.  Many people have gone through the same trials and celebrated identical triumphs as we have. There will always be someone out there who has had a similar path in life. To me that is comforting in a way.  Although I may not always know the people who have dealt with the same issues as me, it's reassuring to know that I'm not alone. When I do actually know people who are dealing with similar issues, it is a blessing to have someone who can empathize and sympathize.  For example, I'm part of an online group for parent's of Kabuki kids.  I love this site because even if we, as parents, only have that one thing in common, it is a strong, emotional bond that connects us.  We are able to talk about the accomplishments of our kids, the hardships, the frustration and the love and we all completely understand what the others are going through.  Then, as the online discussions grow, we find out that it's not just Kabuki syndrome that we have in common.  The discussions grow and change as we learn more about each other.  It's amazing to me how once we start talking to people and looking past our differences, we really do have a lot in common!

So, that's what's been on my mind...

Praiseworthy

"You shouldn't praise your kids for everything they do".  This was the topic of an article I read a few weeks ago.  The author was basically saying that one of the many problems with kids today is the fact that we, as parents, teachers, coaches, etc..., praise and compliment them for everything they do including mediocre or average work.  For example, a child who gets 7 out of 10 on a spelling test is told that they did a "great job" or a kid who makes 5 mistakes during a 3 minute piano recital is told "well done". 

Now, I agree with this idea in theory.  We shouldn't praise our children when they only do so-so...we are teaching them that so-so is good enough and that they don't need to strive to do any better. We are teaching them to be mediocre adults.  Would I scold my child for producing average work?  Of course not.  I might, however, say something like, "that's not bad, but I know you and what you are capable of, and I know you can do better." 
Where I have an issue with this concept is: you have to know the child in question before you decide what mediocre really is. The standard that you hold your child up to should be the child himself, based on his own strengths and talents, weaknesses and limitations.

I have two examples from my own boys. 

First, as you all know by now, my oldest son, John has a genetic disorder called Kabuki Syndrome (KS).  John has mild to moderate cognitive delays and has difficulty staying focused on a single topic. John learns things slower and differently than typical kids his age and he really struggles with taking tests. 
Every year in California, kids in second grade and higher take CST (California Standards Tests).  The child's score is categorized into 5 categories: far below basic, below basic, basic, proficient, and advanced.  Schools strive to get all children into the proficient and advanced categories.  Well, John took the CST last May.  He had a few modifications to the test taking environment but he took the same test everybody else did in language arts.  A few weeks ago we got his scores.  By just one point he made it into the proficient category!!!  Did I scream and shout and tell him how proud I am?  You bet I did! Did I tell him he's amazing and smart and that he did a fantastic job on his test?  You 'betcha! Because John's barely proficient is another child's perfect score!  John had to work and struggle and put in extra hours and be drilled on test taking strategies.  He put in so much effort for every single one of those points and he deserved every bit of praise and compliments I could give him for that proficient score.

Now, just so you don't think this only pertains to special needs kids.  Let me give you another example with my typical son, Robert.  Robert plays soccer.  He's not great but he enjoys the sport.  During practice, the coaches work Robert pretty hard and give him a lot of extra time and attention because his skills are not quite as strong as some of the other players.  At home, Robert and I will practice and kick the ball around.  He also helps out at his brother's VIP soccer practice.  I know how much time and effort Robert puts into soccer but he's just not a natural.  At Robert's last soccer game, during the last 2 minutes of the game, the score was tied 3 to 3.  Our goalie kicks the ball out into the field and it lands right at Robert's feet.  My heart stops.  Then, I watch as Robert turns with the ball, dribbles a bit up field, makes it around a defender and passes it perfectly to one of the other forwards who powers it into the goal!  They won the game 4 to 3!  Robert didn't score the winning goal but his footwork and pass allowed one of the stronger players to make the goal.  I know, and his coaches know, how much effort Robert has put into those basic skills of stopping the ball, dribbling and passing.  To someone else that might not have seemed like much...but to Robert... it was huge! Those few seconds were the culmination of years of practice and I (and his coaches) made sure he knew what a fantastic job he did during the game and that his fancy footwork and pass lead directly to the goal that won the game. We praised him profusely for what others might consider average soccer skills.

I guess what I'm trying to say is this:  it is definitely possible to lull our kids into thinking that average is ok when we praise them for passable work and mediocre performance.  When we tell them that they are doing "great" when the are really just doing "alright" then they don't feel the desire to strive for anything higher.  However, when our kids put in the time and the effort and do their best and try with all their might and they are still just proficient or average, I think they deserve all the love and praise we can give them.  They need to know that doing their best may not make them the best at something but that the effort they put in is noticeable and praiseworthy.

So, that's what's been on my mind...

My 9/11 story

September 10th, 2001, I was in Boston with my husband and 14 month old son.  We'd been visiting my husband's family and friends in New England but we were finally headed home.  The first leg of our flight took us from Boston to New York and then we would be on our way back home to Virginia.  When we landed in New York, however, we were told that our connecting flight had been canceled due to thunderstorms in the area.  The airline was nice enough to put us up in a hotel and asked which flight we'd like in the morning.  I told Eric I'd like to sleep in and take the later flight around 9:00am but he was ready to get home and we opted for the earlier flight at 7:30am.  So, on the morning of September 11th 2001, I boarded a plane in New York with my husband and young son.  I remember sitting by the window with John in my lap.  He hadn't slept well the night before and was dozing with his head on my shoulder.  After takeoff the plane turned over the water and out of my window I had a complete view of the New York skyline.  I remember seeing the twin towers with the early morning sun reflecting off of them.  There seemed to be a bit of a golden haze over the city and I remember thinking that when viewed from the right perspective even a big city can be beautiful.  I didn't know it at the time but a little more than an hour later the skyline that I'd just been admiring would be destroyed forever.  After we landed and got our baggage we took a taxi home. When we got back to our house I finally remembered to turn my cell phone back on.  There were 4 or 5 messages from my mom left in the last 15 minutes or so.  I called her back and she was the one who ultimately told me about the plane crashing into one of the towers.  She had been frantic because she knew we had been stuck in New York for a night and knew we were flying out that morning.  I don't know if there is such a thing as retroactive fear but I remember actually shaking thinking about how close we'd been to these horrific events.  I watched on the news as the towers crumbled and thought that earlier that morning I'd seen those towers shining in the sun.  I remember wondering what would have happened if we'd chosen to take the 9:00am flight instead of the 7:30am flight.  Would we have taken off at all?  Would we be stuck in New York?
 Less that a week later my husband left with VFA 143 to fly combat missions for Operation Enduring Freedom.  This was one of the most difficult times in my entire life. 

We all have our stories and memories of 9/11.  Every American remembers where they were when they heard the news of the planes crashing or saw the towers fall.  This is just my story...just one tiny piece of the American consciousness of that horrific day ten years ago.

A Golden Summer

So, I took the summer off from blogging.  I did this for a couple of reasons.  First, we were really busy!  We took three big vacations: Seattle, a road trip to the Grand Canyon and Colorado, and family camp. Also, my husband retired from the military in July and we had to plan and host his ceremony and reception.  Then, when we were actually at home we went on a lot of day trips around San Diego and Orange County.  Could I have blogged while on vacation?  Sure...but the real reason I took the summer off was because this was a Golden Summer.  What is a Golden Summer you ask?  Well, let me tell you...  It's a term I came up with for a summer vacation that you spend with your kids when you and they actually enjoy spending time with each other and want to be with each other!  It's a summer when they are old enough to make their own breakfast and let you sleep in, get themselves dressed and brush their own hair (most of the time).  It's the summer when you can talk to them about more mature things and get their opinions and input on events and activities.  It's a summer when you give them more freedom to do the things they want to do but they still come back to you for hugs and kisses and cuddles. It's the summer they stay up late but still want to be tucked in at night.  It's a summer between innocence and maturity.  A summer between independence and attachment.

Before a Golden Summer, you, as a parent, spend a lot of your time taking care of your child's needs.  Not begrudgingly...it's just what you do.  You change diapers, pick out clothes, help them get dressed and brush teeth.  You talk about things like Mickey Mouse clubhouse, purple dinosaurs, and the Wiggles.  You make meals and feed your kids and plan your daily schedule around nap time. 

After a Golden Summer, you, as a parent, still want that family time together but your
pre-teen/teenager only wants to spend time with friends, or on the computer, or playing video games.  Your kid is as likely to scowl at you as to talk to you and you can't pry the smart phone out of their hands.

During a Golden Summer, your kids are independent enough to take care of themselves but still want to be with their parents.  It's the summer you truly enjoy being with each other and love being together as a family. 

Many families will have lots of Golden Summers and they are so lucky and blessed.  Some might only have one or two and how sad for the family that doesn't have any.  I also think that the Golden Summers often make a comeback after the tough teen years. And for those of us who have kids with special needs, our Golden Summers may look very different from someone elses or they may come a lot later than others.  I just know that this was our first Golden Summer and I cherished it.  I loved being with my boys this summer, traveling and talking, laughing and loving.  There were some tough times too, after all, they're still kids and brothers, we had our fair share of arguments and disagreements.  It wasn't a perfect summer...but it was definitely Golden!

You have the whole world in your eyes

Wow!  I haven't written in ages!  The last few weeks of school were crazy and hectic and then, on the last day of school, I picked up the boys after class, put them in the car, drove to the airport, got on a plane, and started our first summer trip!  We just got home and I've finally settled in enough that I feel like I can take a few minutes to write. 
This thought has been on my mind for a while now.  Well, actually, since the last day of school.  On that final day, Robert came out of class loaded down with his backpack, yearbook, a beach ball and a huge folder full of paperwork and art from throughout the year.  We took a few minutes to look through it before we went to the car and this one picture stood out from all the rest.  It was Robert's self portrait.  For an eight year old, it wasn't a bad likeness, but that's not what struck me.  I looked at it and said to Robert, "Wow, this is really good!  Especially the eyes.  I love the colors you used...you look like you have the whole world in your eyes."  Those words and all that they implied,  stuck with me.  I began to think that for him, "having the whole world in his eyes" means so much more than the color of the crayons he chose to use for his picture.  Because at eight years old, he still does have the world in his eyes...for him...anything is still possible and within his reach.  He explained to me once how, when he is a grown-up, he will have a job that will let him do all of his favorite things and still be a paleontologist (which has been his goal in life since he was three).  He said that he will obviously have to read about Egypt and dinosaurs to be a good paleontologist and he loves to read. He will then have to go explore the area, digging around and looking for bones and artifacts.  Then he will have to write about his findings (another thing he loves to do) and, of course, he will do his own sketches and artwork.  Then he will create models of his discoveries with Lego's.  These Lego sculptures will be so amazing that they will be in museums and people will ask him to create rides at amusement parks about his Lego creations and then he will make board games and computer games and wii games about all the things he discovered as a paleontologist.
I LOVE IT!
Could he do it all?  Right now...in his eight year old mind...YES...he could.  Will he always believe it?  Probably not...how many of us still believe it? 
Of course, I want my son to grow up and get a good education and become a "fine adult", but what do we sacrifice by becoming adults?  I think we loose the world in our eyes.  We start to realize that we should pick a single educational goal.  That we should really have one (or two) vocational aspirations and only a couple of real careers in our lifetime. 
I know that Robert will grow up to be something spectacular.  I also know that when he starts taking about what classes he wants to take in high school and what he wants to major in when he's in college, then I'll know he's become a man and lost the boyhood dream of becoming the Lego building, ride creating, computer game programing, author/artist/paleontologist. 
Wouldn't it be nice if we could all go back and remember when we had the world in our eyes and everything was full and rich with possibilities?  When we still believed that we could be that professional athlete, the movie star, lead singer in a rock band, the astronaut, the president.  Those were good times! 
I think as parents and adults we should be slower to tell our children that "those things aren't all possible" or "you'll never be able to do all of that when you grow up".  We shouldn't always be so quick to say, "well, that will take a lot of work and YEARS of college" or "very few people become professional athletes/singers/actors, you should focus on something more realistic".  They will discover these things soon enough.  Let's let them dream and imagine and "have the whole world in their eyes" for just a little while longer...

Too Many Rights Can Make A Wrong

It has been over two weeks since I wrote in my blog!  I started this blog with such good intentions, I just have so many things on my never ending to do list that blogging keeps getting pushed to the bottom.  Which actually brings me to the point of this post.  We've all heard the saying: Two wrongs don't make a right.  Well, I've come up with a new saying:  Too many rights can make a wrong.  Let me explain.  I have a teaching credential and a license as a speech therapist.  I could have a job but a long time ago, Eric and I decided that my skills, time and effort would be better spend at home, spending time with our boys and being actively involved in their school and extra curricular activities.  So, I'm a stay-at-home mom.  What I've found, though, is that over the years I continually take on more "jobs" and have less and less time to actually spend with my boys.  Right now I am on the PTA board, I am the hospitality chair for the PTA, I am room mom for two classes, I volunteer each week in both classes, I am a den leader, cub scout treasurer, as well as cub scout membership and registration coordinator. I am doing all of the right things, but I am doing so many of them that It's actually turned into the wrong thing for my kids.  I am doing so many things FOR my boys that I never actually have time to spend WITH my boys.  My time is spent creating lessons and den activities for the cub scouts, going to the scout store to buy belt loops and arrow points, volunteering backstage at the rehearsals and performances of the school variety show, coordinating volunteers for the school carnival, writing and requesting donations for the raffle baskets, buying items for the baskets, creating the baskets, requesting food for teacher appreciation luncheon, buying drinks and paper goods for said luncheon, putting the luncheon together, coordinating gifts and treats for teacher appreciation week, coordinating volunteers for the fourth grade fiesta, buying sombreros and tablecloths for the fiesta, planning field trips, on and on and on...I think you get the idea.  All of these things are good and need to be done...but they don't all need to be done by me.  When my boys get home from school, I'm still working on other projects as well as trying to do the regular household stuff like laundry, dinner and cleaning.  So, everything I've taken on and everything I'm doing in the name of being a "good stay-at-home mom"  has sort of backfired on me.  Because (1) I rarely stay at home and (2)  I'm not being much of a mom.
So, I have vowed to not take on as much during the next school year and I've tasked those around me to hold me to my word.  Yes, I will still be involved in my boy's school and after school activities but when they come home from school I want to be able to spend that time WITH them not just do things FOR them. 
In my life, I want to make two things right and their names are John and Robert.  I don't want to spend all of my time doing all of the good and right things only to find, one day, that I've lost my time with them.

We All Have A "But"

Ok, I know it goes without saying that we all have a butt, however, I realized recently that we also all have a "but".   Let me explain:  A "but" is when you say a, seemingly, innocent or innocuous statement and then change the entire meaning of what you say with a "but".   The "buts" in our house are really getting to be a problem.  Let me start with mine.  Eric or the boys will bring up something they want to do, such as camping, or go to Legoland or take a certain summer vacation.  I will say something like, "Oh that sounds like fun, BUT __________ (fill in the blank)."  I'll inevitably change the meaning of "oh that sounds like fun" by tacking on "but we don't really have time for that" or "that's a little too far away for a weekend trip"  or "I think it will be too expensive". 

Eric's "but" is "I'm sorry I'm late, BUT..."there was a lot of traffic", "a last minute meeting came up","I decided to go surfing with the guys".  You get the picture.

John, my ten year old with Kabuki Syndrome, also has a "but".  Part of his syndrome is that he has almost no verbal filter: he says what he thinks, when he thinks it.  Yesterday at the pool, a toddler started fussing.  John's response was, "why doesn't that mom take care of her baby so it will stop crying!"  When I asked John why he felt the need to say that out loud, he said, "I knew I shouldn't say it...BUT it was true".   We hear that a lot from John, "I knew I shouldn't say it...BUT..."I wanted to" or "that kid was too loud" etc...

Finally, there's Robert's "but"  Robert can get so wrapped up in an activity that he doesn't want to be pulled away from it for anything.  Often when we call Robert or try to get his attention he doesn't answer.  When we finally go hunt him down somewhere in the house he will say, "I heard you BUT...I was still working on this lego thing" or "I was in the middle of a chapter" or "I was playing a game".

As a speech therapist I had to learn the parts of speech in great detail.  Of course, most of you already know that the word but is a conjunction (conjunction junction, what's your function).  However, different conjunctions are used for different reasons.  But is used to show opposite or conflicting ideas.  The conjunction so  is used to show result.   I understand that sometimes "buts" are necessary, however, often, a "but" is just an excuse. So, my family is going to work on decreasing our "buts". Instead of using a word that implies opposition or a conflict of ideas we're going to use a word that shows results!   We are going to replace our "buts" with a "so".  I will try to say, "Oh, that sounds like fun SO lets do it!"  John is going to say, "I knew I shouldn't say it SO I didn't!"  Robert's new response will be, "I heard you SO I came running!"  Eric's new mantra will be, "I'm sorry I'm late SO I brought you flowers!"  :-)

Yes, I know that all of that is just in my fantasy world of the perfect family BUT I do think we all need to be a little more aware of our words and what we are actually saying and expressing with those words.  If something sounds like fun...then let it be fun!  Don't damper the meaning of the words by being contrary.

At the beginning of this post,  I said that we all have one. 

 So...what's your "BUT"?  :-)

The Book and The Rose

A while back my son made the age old, often heard by parents statement:  "you love _____ more than you love me!"  I replied back with the age old, often used by parents statement:  "no I don't, I love you both the same."  Well, that night, as I was lying in bed, I started to think about what I said.  Do I really love my kids the SAME?  The answer is, no, I don't love them the same.  Now, that doesn't mean I love one more than the other, it simply means I don't love them in the same way or for the same reasons...I love them DIFFERENTLY. 
I hope as I write this that my thoughts translate well to the written word because I really don't want my feelings to be misunderstood but as I was thinking about my boys and my love for them I started to compare them to gifts...gifts from God...wonderful, precious gifts.  However, gifts come in many shapes and sizes, in other words: gifts are different.  I see John as a rose bush (I know my son, in all his boyness, probably wouldn't enjoy being compared to a rose but I'm still a girl and think in girly ways).  So, God gave me this rosebush to tend and take care of.   I have to make sure I plant it in just the right area to make sure it gets enough sunlight to thrive.  Every day I need to water it and and prune it and check it for pests.  I need to protect it from harsh weather and insects. It's a lot of hard, tedious work but if I'm diligent and put in the effort, then I will be rewarded with amazing blooms and flowers with the most wonderful fragrant scent. 

In Robert, God handed me a book.  A book that I can enjoy and read and watch as the story  unfolds. A book that holds a story so complex that all I can do is read it daily and anticipate where it will go next. A book with a story that lights up my imagination with all it's fantastic possibilities. A book that helps me relax and smile and sometimes, actually, laugh out loud.

So, because John is my rose and I have to work harder with him does that mean I love him any less?  Of course not!  I am, however, acknowledging that having a child with special needs is hard work, any parent with a special kid that tells you otherwise is lying (to you and themselves).  But I love John all the more because of the effort.  My hard work shows in the incredible, confident kid he is.  He has to work so hard just to do what typical kids take for granted.  So we work, John and I, we work on handwriting, over and over and over and finally one day, he writes his name: legibly!  What a huge accomplishment!  I'm so proud of him and his determination.  We work on social skills and looking at people when he talks to them and then, a teacher at school stops me after class and says, "John told me one of his jokes today, and HE LOOKED ME IN THE EYES WHEN HE WAS TALKING!"  Wow! Another huge step and it's because John and I did the work.  There are so many little stories like this and all the time and effort are worth it and I love him so, so much because I am helping mold his already beautiful soul into a truly amazing person. When you help create something fantastic you can't help but love it and be proud of it!

Robert is my book.  He is easy, he is fun, he is creative, he is smart, he is kind and he is inspiring.  His life is like a story to me that I get to watch as it unfolds.  It's exciting to me to "read" his narrative on a daily basis.  His story is full of adventures and dramas and, no doubt, there will be plenty more to come.  Is my book perfect?  No, of course not.  Sometimes a page tears and I have to mend it.  Sometimes the story takes a turn that I'm not very fond of...but for the most part I just turn the pages and enjoy the story.

So, there you go, my book and my rose...my gifts.  Neither one loved more than the other, just loved differently...for different reasons, because they bring such different things into my life.

I told this analogy to a friend of mine and she said, "I think my son is like a puppy you get on Christmas morning.  I love him, he's cute and adorable and so much fun but by the end of the day I'm so exhausted just from trying to keep up with him!" Gifts are definitely unique! :-)

All the people in our lives are gifts, they bless us in different ways and require different amounts of effort .  What kind of gift are your kids?  Husband? Siblings? Parents?  Friends?

What kind of gift are you?

Kabuki Syndrome - Part 1

My oldest son, John, has a rare genetic disorder called Kabuki Syndrome.  Obviously, since it's rare, not many people have heard of it and I'm constantly being asked, "what exactly is Kabuki Syndrome?"  Well, it's actually a fairly complex syndrome, but in a nutshell, here it is:


Kabuki syndrome (KS) was named by the doctors that discovered it in Japan back in 1981.  They chose this name because of the facial resemblance to the makeup worn by the actors in the traditional Japanese Kabuki theater.  The facial characteristics they used to make this comparison are highly arched eyebrows, thick eyelashes, downturned lower eyelid, large/wide eyes, blue sclerae (the white part of the eye), flat nose and large/protruding ears. 

As I said, KS is rare, it only occurs in approximately 1 in 32,000 births (lucky us).  However, it may be underdiagnosed because up until recently it was only identified by the presence of certain physical, medical and cognitive characteristics, which could also look like other disorders.  In August of 2010 the gene responsible for 70% of KS cases was discovered.  This will make it easier for future cases of KS to be identified.

Almost all kids with KS have five main characteristics:
1.  unique facial features (described above)
2.  skeletal abnormalities
3.  dermatoglyphic differences
4.  mild to moderate intellectual disabilities
5.  short stature

Along with these characteristics many of these kids also deal with a myriad of medical issues which could include:
hypotonia (low muscle tone), cleft or highly arched palate, feeding issues, behavioral difficulties, recurrent infections, hearing loss, heart defects, kidney anomalies, hypodontia (problems with their teeth), seizures, immunological abnormalities and weight gain during puberty.

Most of these kids are followed by a team of doctors including:  genetics, cardiology, ENT, audiology, opthamology, orthopedics, dentist, urology, immunology, hematology, endocrinology, gastroenterology and neurology.  They also benefit from Physical therapy, occupational therapy, speech therapy, behavioral therapy and sensory intergratoin therapy. 

The baby years are difficult for these kids (as well as their parents) because the babies often have feeding issues and failure to thrive.  Because of their susceptibility to infection they often have numerous respiratory, ear, urinary tract and skin infections.   On top of that, these babies are usually poor sleepers.  

Childhood also offers a wide array of issues.  They usually have gross and fine motor delays which can affect school work.   KS kids almost always have expressive and receptive speech delays and they have difficulty with appropriate social skills.  They have a hard time staying on task and focusing.  They often have sensory issues and they tend to perseverate (this is an obsessive behavior which means they say or do or think or ask the same thing over and over and over again).  Honestly, KS kids act a lot like an autistic and ADD kid rolled into one!

What is adulthood like for a KS kid?  There's not a lot of research out there yet and it really depends on the severity of the medical and cognitive impairments.  Although some of the medical issues may become more problematic as an adult, KS kids seem to have an average lifespan. 

Ok, I know that all read a bit like a journal article...sorry.  I was trying to present this in an unbiased way and not let my emotions about my son cloud the way I presented the syndrome.  The most fascinating thing to me about this syndrome is that despite all these kids have going on in their little lives, they are some of the nicest, kindest most generous kids you will ever meet. 
Life with Kabuki Syndrome is a daily adventure for John and our family.  The challenges are numerous...but so are the rewards!

http://www.kabukisyndrome.com/

Lesson Learned

I try to teach my boys the difference between feelings and character. Feelings can't be helped or changed...they bubble up inside of you and they are what they are. They are your natural reaction to an outside stimuli. Character is how you choose to act on those feelings. For example: you may feel sad or disappointed that you didn't get that star wars lego kit you wanted for your birthday...your character is defined by whether or not you cry and throw a fit or decide to use the target gift card you got from your grandma to go out and buy said lego kit. You may be angry that the ref at your soccer game gave you a yellow card...your character is whether you yell and argue at the ref or continue to play your best. You may feel happy when the kid who has been teasing and bullying you all week at school falls off the top of the jungle gym...but your character is defined by whether you point and laugh or say, "hey dude, are you alright?" So, these are the lessons I teach my children. This morning I made myself a cup of coffee and sat down at the computer to write a blog entry. I'd been thinking about it for a few days and was excited to finally have the time to type it up. For almost an hour I wrote about Kabuki syndrome (the genetic disorder my oldest son has). I added a picture, proof read it and...clicked on the wrong button...I deleted the whole thing!!! Then in my frantic efforts to recover my lost entry I also deleted a game that Robert (my youngest) had been saving on the computer. Guess what I did...I threw a fit! Robert looked at me from the doorway and I said, "Robert, I am so so sorry I really blew it...I lost something on the computer that I'd worked really hard on and then I accidentally deleted your game." Then I threw myself on the bed and just sort of whined (I know...real mature). Anyway, Robert came over, sat by me, put an arm around me and actually started rubbing my back. He said, "I know it's frustrating" (The same words I use on him all the time). What a powerful lesson I got from my eight year old boy today. He is a kid of amazing character and I'm so proud of him! I'm also very glad that, in this situation, he choose to listen to my words and not follow my actions!

The Note That Started It All

I posted this note on facebook about a week ago. The conversation with my friend that I write about in this note, and the impact it had on my life's perspective were pretty profound. It had been on my mind and in my heart for a long time. Finally, I decided to write it down. I'm still not sure why I decided to share it with my FB friends but I'm so glad I did. My friends had such wonderfully nice and supportive things to say! It seems that in writing this note I helped myself but maybe helped a few of my friends with perspective on their lives too! It also helped me realize what an amazing support group I have out there! I felt so good after writing down my thoughts and feelings and I got such positive feedback from my friends that I decided to go ahead with my idea to start a blog. So, here it is...the note that started it all:

Don't know why I feel the need to write this down but it's been on my mind for a while now so I thought I'd put it here...maybe I should start a blog. Anyway, a while back, a girlfriend of mine who is my age, single, with no kids, who I've known for a very long time said to me, "you have had such a charmed life." I looked at her with my mouth slightly open, a bit wide-eyed and just a little confused.

I began to think of my life: my mom and dearest friend, died way too early at the age of 55 after suffering through three years of ovarian and lung cancer and all of the chemo, radiation and surgeries that went along with it. I watched my dad suffer my entire life after a terrible car accident that left him broken and in pain. He was addicted to pain killers, got bladder cancer, acquired MRSA after hip replacement surgery and ulitmately died at 66, again, way too young. My two boys never got to know my mom, their Boppy, and they only remember Poppy sick and in pain. They will never know the love that only grandparents can shower on a kid. Speaking of kids...I have a son with a rare genetic disorder, Kabuki syndrome. In the first five years of his life he was in the hospital as much as he was at home. Twice in his little life we almost lost him. Once from an unknown infection, the next from RSV when he spent five weeks in the hospital. Four weeks in the PICU in a coma, hooked up to more machines that I've ever seen. No parent should ever have to see their baby like that. Since then we've spent every day trying to understand and figure out Kabuki syndrome, how it affects John and how we can make his life easier and better. He's medically fragile, ADD, autistic, has a heart condition, issues with his bones, he's hypotonic and apraxic. Every day is an adventure and a struggle. To make it even more difficult, I'm married to a man in the military so he's gone...a lot! There have been deployments from six months to a year with week long trips scattered throughout. During those times I have to deal with all the things I usually deal with: boys and school and doctor appointments and therapy appointments and house cleaning and grocery shopping and meal making and homework but I also have to do the things my husband usually does around the house " yard work, dog poop :-p, trash, home repair, computer fixes, discipline, bills. I have to be a mom and a dad. Also, my grandmother is 87 and in poor health and it has fallen mostly on me to help her. Thank goodness she now has a full time care-giver but it's so hard to watch her mind and body fail her. On top of all of this, I'm losing my sister, my best friend. I never ever thought that anything would or could come between us...but I was wrong. We are squabbling over decisions made by my parents before they passed away. Now the person who I talked to every day (multiple times a day), who I shared my happy thoughts with and told my deepest darkest secrets to...now we rarely talk at all. Not only that...but she's going to move out of state soon so the chance of us actually getting over this is slim. I'm sad because I feel abandoned, I feel like she's all the family I have left in California and soon I won't even have that anymore. I feel bad for my boys because they are losing their cousins...their best friends...I know how it feels. My heart is breaking over this.

So, after my friend told me I have had such a charmed life...these are the thoughts that quickly go through my mind. I don't voice any of them. I simply say to her, "Oh really, what makes you say that?" "Well" she says, "You grew up in a family that loved and supported you, surrounded by parents and grandparents that would do anything for you. They were there for you even when things got hard and they never gave up on you. You and your sister always got along and actually seemed to enjoy each other's company...you didn't fight all the time like I did with my brothers and sisters. I remember that you would actually go to family reunions in the summer and talk about all your cousins and aunts and uncles...how cool is that? To be surrounded by family. You got to be the lead in the high school play and you were on the varsity soccer team. You were talented and athletic! You were a princess at Disneyland and traveled the world as a Disney entertainer. You met your husband in the most romantic way: the Navy pilot falls in love with the Disney princess...in Singapore, no less! Does it get any better than that? You've traveled the world with your husband and the Navy. You are married to a hero, for God's sake! You have two beautiful kids who love you unconditionally. Yeah, I know that John is special but you have the chance to teach him that special is ok. You are molding two little lives...I don't get the chance to do that."

I listen to all she says. I think about how I see my life and how she sees it. I focus on the fact that my parents are gone, she remembers the loving family I grew up in. I'm sad that my boys won't know their grandparents but, luckily, they were amazing parents and showed me, by example, how to be there for my boys. She talks about all the amazing opportunities I had as a teenager and young adult...things I rarely even think about anymore but need to remember more often because not everyone had it as good as I did. I complain about my husband always being gone and all the work it creates for me and she reminds me that this life has alowed me to see the world and my husband is an amazing man. Way too often I think about how hard it is to have a child with special needs but, she's right, I have an amazing opportunity to teach both my boys that different is ok. It may be harder but it takes a strong person to be different. I get to help guide these fabulous boys from children to men. Wow...what an honor! I forget that these two fantastic kids love me for who I am...simply because I'm their mommy. This is a blessing that not all women get.

I guess it's really all about perspective. Sometimes you need to see someone else's view of your life to put it all into perspective again.

The Title

I decided to write a blog but couldn't come up with just the right title. I knew that I wanted my name in it because I'm quite proud of my special, unique name but that's the only part of the title I was sure about. I thought about it alot, said some out loud to see how they sounded, asked my friends on facebook to give me some suggestions (got a lot of good ones too). I even typed some as web addresses to see what they would look like online. For example, I thought about naming my blog, "Temre's Take" you know, like my take on things, but when you write it out as a web address it becomes: http://www.temre/ It now says Temre Stake. Not sure if that sounds like a new crime fighting name for me or if I'm going to be writing about a sharp piece of wood used to kill vampires but either way I didn't like the way it looked so I didn't use it! Finally, I thought, " Why do you even want to write a blog? You're not an expert in any subject, you're not terribly knowledgeable in any one area, what's the point? What are you going to write a blog about"? My answer: It's just a place for me to write my random thoughts, ideas and inspirations. It's just a place for me to offer my perspective on things. It's just a blog about me, that I might one day be able to share with my boys. So, that's where the title came from, this blog is just about me, just Temre. So, that's where it started...now let's see where it goes! :-)