Monday, June 22, 2015

3 years ago today, we were diagnosed with CCHS.. 3 years later, we are living the dreams :)

Wow.... can you imagine, today would be 3 years that I found out that you were diagnosed with something that has no cure, diagnosed with what I pray it isn’t but it is… CCHS.  I still remember, it was a Friday, I was getting ready to go to the hospital to visit you.  I just took my shower, I was in the bathroom, at around 5ish, the phone rang.  I saw the number, I recognize it…. I knew it was coming but I was living in denial.  True enough… they said, Baby Wan (that’s what you were known in the hospital) has CCHS.  We need to schedule a care conference with Dr Gelfand tomorrow.  Are you guys available?  Yes, of course… not a happy tone, a sad tone.  I don’t know what is CCHS but reading about seems deadly.  We are doomed!  But… on the other hand, it is better than undiagnosed, at least you have a term, which means there are others who has it and hopefully we can follow along.

Rewind…. Several weeks before you were born, people asked me, are you nervous, are you prepared, etc.  My answer… nah… been there, done that.  I can do it in my sleep now.  The truth is…. I have NEVER BEEN HERE, I HAVE NEVER DONE THIS!  You read books like what to expect when you are expecting… what to expect the first year.  There is no book that says, what to expect when the unexpected happens.  I jokingly told myself, maybe that’s what I would do someday.  Write a book that says, What to expect when the expected happens or what to expect with CCHS. 

Though, it really isn’t that bad.  Yes, the next day, 6/23/2012, we had a care conference with Dr Gelfand.  I did not know what to expect but I still remember asking that question, we have family back in Malaysia, can we travel back to see them.  His respond was, you will be lucky to travel out of Dallas with nursing help.  My world came falling apart.  Yes… we are doomed.  Right away, the trach surgery was ordered as ASAP.  We needed to reintubate him.  Oh no… can we not do that?  It hurts me seeing that, can we do the mask?  He said, ok for a few days but if not, we have to do it. 

Sometimes in life, it is just unexpected.  We cannot go by the books… of course, if everything is by the textbook, life is perfect.  Though, I am one proud mommy.  I would not change anything about you.  I love this little CCHS boy who makes funny jokes, there is nothing you cannot do.  I love you Laynson Lim very much J  Happy 3rd Year knowing that we have CCHS and many more to come J

Wednesday, May 27, 2015

What does family means? Life lesson son.

Dearest son, I guess I am upset about somethings and I want you guys to learn from this lesson.  Mama gave birth to all 3 of you boys and in mama's eyes, there are nobody that mama love most or least, I love all of you guys the same, maybe in different ways because like Laynson requires more help in keeping him alive, Laynden needs help in keeping him in sight and Laynce needs help in keeping him less dramatic. :)  Yes, funny but you boys have real different personalities.

Anyway, growing up, I will need you guys to help each other as much as possible.  You do not charge any one of your brothers, rich or poor for anything and you do things for them for free.  Why?  Because you guys are brothers.  It doesn't matter if you provide services for a living, you will NEVER EVER charge them and if you get $ back, give it back to them.

Your grandmama always tell us that it's not about the $$$, after all, we are only sibling once in our lifetime.  Unfortunately, not all of us are practicing that because some people think they are providing service, blood or not... it doesn't mater.  But... that's something that I wouldn't do.  Not only would I be giving my time and service and not take any money but I will do more because they are my siblings.  I guess, even though I may look like the less fortunate one in the family, I do believe that what I do for the family, God has eyes to see and he is making my dreams come true.  No matter how much people hoard and be selfish and greedy.... you will take longer than you should because you of what you did or did not do.

Good luck to those who hurt me.  Unfortunately, talking out loud about it, didn't help.  To the person who hurt me again and again.... you think you love me, but honestly, you don't.  It's ok.... I don't need any love, I have always been taking care of myself and the family.  After the email, I was so upset for 2 days.  I picked myself up and console myself but yet again, you want to try to destroy me again today.  It's ok... you can take everything but just bare in mind, once I move, I will never set foot into your door and this is it.  You will just be a hi bye friend to me.  There are a lot of people that hurt me and yet I still talk to them.  It wouldn't be different, I will still talk to you but just know that you lost me for good.

So boys.... when people get hurt, it is the end of some things so, keep our family line strong.... we need each other.  I love you boys!

Wednesday, April 29, 2015

I am 3 YEARS old!!!!

Wow.... what an incredible journey it has been.  I guess the days approaching your 3rd birthday has been challenging for me.  I am not sure why the 1st or 2nd birthday, it wasn't as bad but this year.... everything just came back to me like it was just yesterday.  I can picture walking into the L&D, expecting you to come out and waited for you at the post op room but you never came.  Instead, you went into the NICU and never came back out till months later.

Oh my... what should I say to you Laynson?  I don't know where to begin, let's just start with "I am so very proud of you".  Things that were told that you will not do or take forever to do, you proof them wrong. You are so smart, unfortunately, they keep saying that you are smarter than Laynden who is almost 2 years old.  I guess Laynden just keeps more to himself.

Anyway, mama came back earlier just to make sure mama got to say Happy Birthday to you.  I love you and you have to promise mama that we will have uncountable birthdays together!

Tuesday, February 3, 2015

Our Curse ~ Yes.... it's mine too... Ondine's Curse....

Too bad, we were not there at 2014 CCHS conference, so, we didn't get to watch "Our Curse".  Not that I am not watching my own daily but yes, heard many raving reviews about this short documentary.  And YES, it was nominated for the 2015 Oscar Short Documentary, I hope they will win, it will increase the visibility of CCHS and please, please find a cure someday.

God is great!  Can you believe that he knows that I am in this little small town in Greensboro, NC and he decided to entertain my travel for work by having Geeksboro Coffeehouse Cinema to show it?

I can't wait to watch it and will be bringing lots of tissue paper!!! Yay!!! Finally get to watch it!

Saturday, January 24, 2015

A year since the scariest day of my life - 01/24/2015

A year ago, I almost lost you, it was the scariest day of my life.  When they were able to revive you, I thought you had brain damage and holding and bagging in the ambulance.  I imagined the worst, people asking me to turn off your life support machines and let you know.  At that very moment, I felt like the world is so cruel.  Why would God do such a thing, giving us hope and such a cute son and then take it away.  The journey from the house to the hospital took forever is how I felt.  They told me that there were police cars, fire engines, etc but I saw nothing, all I knew is to dash up the ambulance, we need to save you. 

But you have always been a fighter.  You have the fighting spirit of your mama, but on the other hand as I think about it, I think you are the one the stronger one.  Mama has learn so much from you.  You fight, you disagree, you are rebellious and all that in you makes who you are today and this is the spirit that keeps you here today.  I am so proud of you.

On 1/22, grandma called me telling me that you are sick again.  You can't be off the vent.... again, I cannot help it as I just read about how Landon passed away.  His mama wrote ever detail of how he passed on and I cannot help it but to cry like a baby because I cannot imagine being Brandy and the saddest part is to bury her son on her birthday.  Again, I thought, what has this sweet lady that inspires so many people and she is the one that I look up upon to continue my journey deserves this?  I was so worried, I cannot help but to think about scary stuff.  All the what ifs???? What if God just gave me one more year with you and he's about to take you away?  Sloane passed away around 2.5 years old suddenly.... it is so scary.  I have seen you gone in front of my very own eyes, I am scared.

I decided to take no chances, I've got to fly home.  I took off and found the last fight out of Greensboro, NC.  I didn't care what time I would land,  told myself that I needed to go home to see you.  If in case anything happen, I wouldn't forgive myself for not being with you.  Honestly.... finally 1/24/2015 12.26 am came.... I didn't want to live through this moment.  I went to bed and slept.  I am so glad... it was just another day and I know that eventually, I will over come this day.  I love you sweet heart....