Tuesday, April 26, 2011

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?

Tuesday, April 19, 2011

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!


Sunday, April 17, 2011

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!

Thursday, April 14, 2011

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.

Tuesday, April 12, 2011

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! :-)