Random thought - Just Do It!

My dearest Marisa and Ethan,

Friday, 6/22/2012:       I think mommy has too much time on mommy's hands if I can sit here & watch the clock ticking by.  It's the start of another hot summer day, which makes it really hard to get a jump start on the day.  HOWEVER, when you get to be my age, you will want to take in every moment that you have to do what you want to do.  Even if you don't have any idea on what you want to do for the day, sometimes the best thing in life is the "unplanned" stuff just like yesterday!

Daddy decided to make his work day short.  He came home & spent the rest of the hot summer day with us.  It was really funny when all four of us lay laughing in the bed while Ethan tried to decide on which "middle" he wanted to take.   Your brother was quite smart when he decided to squeeze on top of you to be smack in the middle.  Marisa, do you remember how you've always said that being in between mommy and daddy was YOUR spot?  I love watching how you and Ethan try really hard to be THE one in between mommy and daddy.  Hearing you, daddy & your brother laugh just made my day!  Although it was hard to leave the comfort of an air conditioned home, we ventured out to make more memories.  It started out with you driving for once while we are all together!  Daddy sat in the back with Ethan & mommy was your guide.  Without a plan of where to go or what to do, you just drove.

Our 1^st stop was Chick-fil-A for your cookies & cream milk shake & Ethan’s French fries.  Daddy did not get a treat since he had fallen asleep.  When he finally woke up, we were in Manassas on our way to Potomac Mills.  He asked if we were near a Chick-fil-A.  Ahem, you snooze, so you lose!  Daddy asked how could anybody sleep with mommy talking non-stop.  Hey, I was giving directions & keeping Ethan company…. He mimicked mommy’s directions “100 lights from now, you have to take a right & make sure when you have a chance to move to the right lane to do so & oh did you give a signal so that you could move to this lane & do you want some French fries, mommy can get them for you, don’t be too close to the other car”…what the heck?  Me?  A back seat driver?  Not a chance…it’s difficult to have you or your daddy drive because I’m always the person to give directions.  It would be super when you are able to familiarize yourself with the area…now, if only I can get your daddy to do the same.

Random thought ~ Oh yes, I love it when mommy pick a piece of clothing for you to try on; you would always hesitate & at times would say “no”.  I’m not too old that my taste in clothes is not up to par!  But oh, to have your daddy picked the same outfit for you to try on; you would gleam from ear to ear.  What’s up with that?  

You know what though; I am extremely happy that you are that close to your daddy.  I remember what it was like to believe that your daddy is the entire world to you.  This helps to remind me of how much I loved & adored my daddy too.  Although he passed away since I was ten years old, I still remember the feelings that I had experienced when my daddy was around.  Watching you & daddy has really helped mommy to continue to have such fond memories of your grandfather.  Thank you!

I guess driving around town doesn’t bother your daddy much when he knows that it’s for you.  From Woodbridge, we ended up at the Eden Center in Falls Church.  We just had to finish off the day with bubble drinks.  By the time we returned home, your brother had had an hour nap before his bedtime & mommy ended up having to stay up with him until two am when he finally was ready to go to bed!

The point of this message, my darlings is that sometimes you just can’t plan life…just do it and see where life will take you!

Blog Hop: Say Cheese!

Dearest Marisa and Ethan,

Darlings, mommy’s been feeling that the past four years we’ve have been living in a bubble.  For the longest time, I felt that we were the only family living with special circumstances.  There were moments where mommy felt an overwhelming fear that tomorrow would never come.   I felt that smiles would never come after moments when you guys get so sick.  It’s a bit scary (although, mommy may not have looked scared) when you guys are not feeling well.  It is in that moment that mommy needed to have faith & hope that our Heavenly Father would carry you both and all that mommy needed to do was pray.

When mommy started writing this blog, it was one of the avenues that mommy felt would capture mommy’s thoughts & feelings and hope that one day, you two could read them.  After many entries, mommy’s been able to connect with others who were experiencing some of the same joy of motherhood, some struggles & fears of being a mother, many trials & triumphs of having children (let along having a child with special needs), and some with awe inspiring experiences that they were willing to share their stories & pictures. 

With that said, today is a day to share and this is a hop for bloggers who are advocates, people with disabilities and/or have a connection with disability through blogging.  Meriah at With A Little Moxie and Rebecca at The Bates Motel are two of the ladies who are passionate about sharing.  They’ve inspired mommy to do the same so this week, we will say “CHEESE!”  

Pictures, lots and lots of pictures!

Family Time at  the Theodore Roosevelt Island (a national memorial located in the Potomac River in Washington, D.C.)  Ethan decided that he was a pitcher for The Washington Nationals & threw his daddy's red Ray-Ban sunglasses into the river.  It was awesome to watch this in slooooowwww motion, or so it felt for daddy.  Boys will be boys...

The National Museum of National History.  Ethan loved being able to roam around and explore.  I love taking him there so watch his face shine!  Marisa and Gabby were great sitters or chasers.

Our visit to Richmond with one of Ethan's favorite cousin, Amanda.  Well, she found out how fast this little monkey can go!  Run, Amanda, Run...she also saw Ethan's other skills...singing & dancing, which reminds me to get her recording.

Lunch with daddy...puts a smile on all of our faces!

 
This is a Blog Hop!

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1. Just a Cool Dude | Visit blog	2. Summer Photo Clear-Out | Visit blog
3. Ouch! Our grandson decides to be a skateboarder : ) | Visit blog	4. Baseball Baby Pictures from What A Team | Visit blog
5. Riding the Crazy Train: Diary of a Delirious Mom. . . Enthusiasm in Pictures | Visit blog	6. Chunky Chicken, Youre My Tuna of the Sea | Visit blog
7. Just Like a Movie Star. . . | Visit blog	8. 10 special needs of special needs parents | Visit blog
9. Every day life at the Purdy house is purdy crazy.  Follow our journey on our blog. | Visit blog     10.  Wednesday Special Needs/Disability Blog Hop:  Say Cheese! | Visit blog

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Perfection

My Dearest Marisa and Ethan,

Today was set aside to celebrate fathers; however, your daddy said that he doesn't believe in a "father's day".  Just like mommy, daddy believes that every day that we get to watch our babies grow, laugh, smile, and be happy are "mommy's & daddy's days".  He made this comment while vacuuming the rooms upstairs. 

Your daddy woke up this morning & gave mommy some snuggle time before going to the kitchen to pour himself a cup of coffee.  I guess bringing him breakfast in bed was out of the question.  Daddy said that he is not a very "sentimental" person but I beg to differ.  I know how much he loves having family time with us after a long day's work.  I also know how much he loves to listen to you & Ethan laugh and talk with one another.  I see how happy your daddy is when he watches you play with Ethan because I would always catch a glimpse of the huge grin on his face.  I know that it takes very little to make your daddy happy…all that you & Ethan would have to do is say “hi daddy”.

My darling babies, having a father who not only loves & treasures every moment that he spends with you guys make my heart skips a beat.  I am so honored & blessed to have a person with a strong family value, a great sense of humor, an obsessive knack for honesty & possesses a great sense of integrity.  Without a doubt, your daddy has a great capacity to love unconditionally!  He is your number one advocate.  His life’s pursuit is to encourage you to reach for the stars, to lift you up when you are at your lowest point, to laugh & cry with you when you need for him to, to help you conquer all of your fears, and to support you in your future endeavors.  Always remember that your daddy’s biggest accomplishment is having you as his daughter & Ethan as his son…you guys are his pride & joy!

 

Wednesday blog for being special

My dearest Marisa and Ethan,

Yes, mommy is a bit behind on writing a "Disability Wednesdays' Blog Hop" that was introduced by Rebecca.  It's ingenious to find a way to share our thoughts & feelings regarding our day-to-day experiences with a child who was born with a certain disability.  Last Wednesday, a question was posted about our connection with disability (Disability Wednesday).

Mommy truly believes that God picked mommy especially for you two angels.  You see, He knew that mommy needed this special love that you both can only provide.  It's difficult for mommy to even consider that being born with a genetic condition in which a person has 47 chromosomes instead of the usual 46 is disabling.  Mommy have learned (from reading) that some of the symptoms that may effect Ethan include but not limited to:

• Mental Retardation
• Developmental Delay
• Simian Crease
• Poor Muscle Tone
• Brushfield Spots
• Microstomia
• Growth retardation
• Gap Between Cranial Sutures
• Microcephaly
• Craniofacial Abnormalities
• Altered Growth And Development of Social Skills

Let mommy begin by saying that I'm not an expert on genetics nor am I an expert on disabilities. Prior to Ethan being born, I have very little knowledge of  Trisomy 21 or have minimal exposures to disability.

October 16, 2007, the day that Down syndrome was introduced to mommy & daddy.  The moment that the doctor told mommy & daddy that Ethan had recognizable characteristic features of a child with Down syndrome.  Mommy saw the doctor's mouth moving but only heard sporadic words coming out of his mouth.  I don't even remember who this doctor was because when mommy went into the operating room, mommy's doctor was a girl!

I guess being deaf in one ear did not help mommy that day especially when mommy was "selectively" listening to the doctor.  Words like almond shape eyes (mommy thought ~ now that was a stretch,  because we are of the Asian descendant), a small nasal bridge that looks pushed in (hello again, we are Asian), weak muscles (hypotonia) tone (okay, he was only a second old - wouldn't be jumping out of his bassinet any time soon), something about his feet & short hands (again, look at mommy's hands & feet...plus mommy thought that the doctor was telling mommy that Ethan did not have ten fingers & ten toes), weak abdominal muscles making his tummy stick out (well, mommy always thought that a baby's tummy should be round & plumped out).  These words glazed passed mommy's ears.  All that mommy could see was the angelic round face & the pale white color of his body.  My precious baby boy's cry was pure magic to mommy's ears.  His was just perfect!  Mommy memorized Ethan's little button nose, luscious rosy red lips, glimmering iridescent eyes, ten fingers & ten toes, and the sheer ebony hair running wild on top of that perfect shaped head (yes, even your grandmother said that Ethan has a perfect shaped head fit for a crown).  Little did we know how true her words were...Ethan is our little prince. October 16, 2007 was the day that we were introduced to the word Trisomy 21; however, the 17th of October was the day that we received confirmation.  Sure it was devastating to be told of our son's limitations;  however, we were determined to not set limits to Ethan's possibilities.

Being a person with Down syndrome does not define Ethan.  What makes your brother special is his ability to love without hesitation & to consume our days with his smiles & laughter.  Our lives have been profoundly enhanced by Ethan's presence.  Being able to witness his abilities has been inspiring.  I know that Ethan will reach every milestone that a child have to reach & having an extra chromosomes has made a positive impact on our family.  With Ethan's every accomplishments, he has taught us not to under estimate the power of love, patience, encouragement, laughter, positive attitude, and determination.

It's amazing to be to connect with folks with similar stories about trials, triumphs and inspirations.  Each day we learn & each day we've gained a deeper appreciation of people, places and things.  Thanks for sharing!  The creator behind this Disability Wednesday hop is Meriah.  

Long reflection but thank goodness that I had to stop

When I started this blog, my intention was to write about my thoughts & feelings & the experiences & the lessons that I’ve learned & the hope that I want to pass onto my children.  What I wanted most was for my children to read my stories in order for them to get to know me for being more than just their mother.  So today, I’m going to begin my blog by addressing some of them… 

My dearest Marisa and Ethan,

 

It’s Monday morning on the 4^th of June.  I’m feeling a bit somber right after such a perfect weekend & right after turning a “year” older.  I know that when I was young (say in the teens), I couldn’t wait for my birthday to come around.  Not that it was celebrated with a huge shebang but because in my mind, it was having the thought that I would be able to have more freedom & would have the opportunity to live my life.  Yes, when you are in your teens, you just can’t wait for the whole enchilada (especially the part of living your own life & being in control).  So Marisa, mommy understands perfectly well how you are feeling.  I’m old but not too ancient to still remember what it was like to be forever young.  Mommy understands first crush, first love, first kiss, first dance, first job, first heartbreak, first disappointment, first accomplishment, and first of everything!  My sweethearts, just don’t be afraid to try everything first.

After having so many birthdays, I now just want time to stand still.  I don’t want one single millisecond to pass me by.  I LOVE my life & it’s all because of you two & your daddy.  Yes, there are so many twists & turns in life; however, having you both in mine is my greatest blessing!  LOVE your life & don’t be afraid to make choices my darlings.  Make every seconds count because you guys will be mommy’s age sooner than you all think.

My birthday weekend started off with attending Ethan’s “graduation” party.  Although it was not his graduation, Marisa made it even more special for Ethan & me by attending this party.  It was so adorable watching how proud Ethan was to show off his classroom.  I can’t believe that my little baby is becoming such a big boy.  See how time flies?  

On Saturday, I was pretty excited to finally be able to attend a meeting at the Leesburg ARC on “IEP – Individualized Education Program”.  I was looking forward to learning from other parents about their experiences, progresses, processes & goals that they’ve established for their child (children).  Remember a few months ago how mommy was going crazy in trying to work on Ethan’s IEP?   Yes, finally, I thought that I could go & learn about something really great!  

Unfortunate for me, when I spoke with daddy while driving to Leesburg, he said that the decals on the license plate had expired.   What the heck?  We’ve been driving around with an expired tag for over two months!  Note to self and to my babies; don’t forget to be on top of deadlines & expiration dates & anything else that’s important.  In addition, be flexible & understand your priorities!  Daddy wasn’t quite clear of where I had to go…he said something about going to the County’s office, DMV, inspections, etc.  Thank goodness that when I dropped off some clothes for donation at the Salvation Army, that I asked folks there about where to get these decals.   I spent a good half of my Saturday morning standing in line at the DMV.  Another lesson ~ don’t be afraid to ask questions!  I guess I should be thankful for the opportunity to learn the differences between decals (registration, personal property tax and emission & safety inspection) for our car.

It was a good thing that mommy was out & about since nine o’clock in the morning.  The weather was perfect ~ light breeze & the sun was beaming through the clouds & trees, making mommy’s drive truly enjoyable.  I love you both to pieces but it was pure joy to just have a moment to myself.  I was able to drive with the windows down & the sunroof open & listen to my kind of music.  Yes, to also sing with compassion to the songs that I knew the lyrics to that both you and Ethan are now appreciating (LOL “laugh out loud” ~ the 80’s music presented on Glee has helped bridged this gap).  I drove without a care in the world & a dumbfounded smile on my face (Marisa, you can laugh now since the word “dumbfounded” did actually came out of your dad’s mouth ~ our secret joke).  I was jamming to songs that brought fond memories of my childhood, THIS feeling, was the kind of feeling that I want you and Ethan to have…something that brings warmth to you heart & smiles to your faces & makes you glad that you’ve survived your most difficult times!

It was so great to return home with Ethan all set & ready.  Marisa, you are such a great sister & you are an enormous help to mommy.  We spent the rest of Saturday at a picnic, at the Town of Herndon’s annual festival (I was craving a funnel cake), a special treat at Sweet Frog (Ethan’s favorite), and ended up at the South Riding’s annual festival for the firework display. 

 

 I could go on and on about the day but this blog is getting to be too long.  I will have to post something later about these events & my birthday on Sunday but for now, I want to finish off with this past Saturday, June 2.

Received a massage from daddy, which was really sweet.  Marisa, do you remember what daddy has told you? He said that to keep mommy guessing, he has never wanted to “spoil” mommy by giving mommy something that is expected.  He likes being spontaneous & doing things out of the ordinary.   I guess I understand his logic because at times, I too feel the same way.  When you hear things repetitively or receive things expectedly, those senses of sincerity or value just become so mundane.   And by all mean, you know that your daddy is not a typical or common character.  He is special & truly one of a kind!  Oh gosh my baby girl, my wish for you is to be blessed with a man who makes your heart skip a thousand beats when you think of him.  The one who makes you laugh with his nonsense & makes you smile when you look at him.  The one who makes you giddy by hearing the sound of his voice & the one who makes you blush when he takes care of your children.  I hope that this man, who is lucky enough to have your heart, can also keep your feet on the ground but also value you as his equal.  This lucky man should be strong enough to wipe your tears & gently enough to hold you in his arms to make everything else disappear.  This ideal man should not be afraid to ruffle your feathers by NOT agreeing with you 100% but diplomatic enough to not make you feel that you are NOT wrong.  I hope that this man will be for you as daddy have been for mommy…the greatest friend, your best friend.