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 3^rd Year knowing that we have CCHS and many more to come J

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!

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!

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.

http://oscar.go.com/nominees/documentary-short-subject/our-curse

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!

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....

Cruising with a child on life support (Trach & Vent)

Yay, we did it AGAIN!  Another one of our Mission Impossible events after knowing we have CCHS. Though, this experience we are sharing is based out of the Houston Port with Princess. We are not sure what other ports or cruise line would do.  We went on our first cruise from Houston, TX to Roatan Honduras, was supposed to go to Berlize as well but due to the weather, that port of call was cancelled and our final stop was Cozumel.  We went on our cruise with Princess.  Honestly, since it's our first cruise, it's already a PERFECT cruise, even though my other friends who has been to several different cruises told us that this is not the best but trust me, I am not complaining.

We didn't want to be late, so, we started our journey the night before.  We were at a hotel near Galleria.  We unloaded the stuff that we needed, of course his vent, ambu bag, etc.  All of the sudden, we said, where is the emergency bag?  Gosh.... we did not realize that we forgot to bring our emergency bag.  Thank goodness, mama happen to grab an additional trach with her in her handbag went we left.  I was very tempted to post a message asking MOTB if anybody is living near Houston that can give me an extra step down Shiley 3.5 trach but I guess I didn't think that it was necessary at that moment.  But after the incident which I will mention later, I think it was definitely something that I needed to do.

Anyway, we left that morning.  We were all excited, headed to the port.  I called the coordinator with Princess, when we were arriving.  It was definitely a VIP experience, when we got there, they signaled us and told us to drive straight to the front loading area where else others will still have to wait in line for their turn to get down.  After that, we were brought through the employee entrance, which again was a lot faster and I really appreciate that as I try to not expose him to too many people and that was perfect.  The only thing is we didn't get to take the "Welcome" cruise picture, which isn't a big thing at all, because most of it didn't turn out good anyways. 

We were excited as we were leaving.  We were supposed to leave at 4pm but somehow, it was delayed and didn't leave till 5pm.  As we were leaving, suddenly, the captain announced that we had an emergency and someone needed medical attention and we need to go back to the port?  Really?  I quickly texted my other friends to make sure that they know we were not the one that needed medical attention. 

Anyway, it was a fun night and day and suddenly, you just didn't feel well.  You had your fever and then just couldn't keep up your sats.  I am glad we brought the POC, if not, we would have been in big, big trouble. 

Then, came our first formal night, we were all dressed up ready for our pictures.  Mama let you play with the bread,etc and suddenly, you choked.  You showed signs of distressed and you were turning color.  I quickly took you out of the chair and laid you down under the lights.  I tried suctioning but nothing came out.  We realized that our emergency trach wasn't with us, it was up in the room, we forgot (another red flag and lesson learn with the trach baby to always have your trach with us.  CJ ran up as fast as he can and suddenly, you just gave up.  You just decided to quit breathing.  I told mom, we are losing him, we are losing him, I've got to get the trach out thinking that it could be a plug.  I took the trach out but saw it clear, I started bagging with the mask and then you started fighting me a little and you coughed and started crying again.  I am thankful that the waiter and his supervisor took it seriously and called 911.  But of course, but the time they came, CJ came with the trach and we immediately put the trach back in.  Suddenly, your sats are 98-100, you no longer need oxygen.  I thank the medical team that came, they told me to sign a paper saying that I declined to go to the medical office for further assessment.  They told me, you've done it all after all.  This little fighter ended up just sitting down playing his ipad and acted like nothing had happen.  We finally had the opportunity to take our formal family picture.  Honestly, I barely could smile because I didn't feel good for the rest of the night.

The rest of the cruise were just wonderful.  We managed to take more family pictures. 

We made it!  It was scary, there were a lot of things that we learn and we will continue learning about you and our life with trach and vent. 

Tips for special need parents:

1) If you made the reservation over the phone, immediately inform them that you are traveling with your special need child with wheelchair.  That way, you will get a room that is wheelchair accessible, which is at least 1/3 bigger than the normal rooms.  If you made the reservation over the internet, call the cruise line immediately to get a wheelchair accessible room.

2) Fill in the form, you should be able to find the form to fill for Special Need assistance and information on each cruise site.  If not, ask them to forward you the information.

3) Contact your local DME as soon as the booking is made to ensure that they reserve the Portable Oxygen Concentrator (POC).

4) Have a check list of what to bring.  We learn from our mistake.  We accidentally left our emergency bag.  Please note that we are lucky to get a syringe from them but if not, remember to bring the items that you don't usually use at home daily.  

5) For the vent patients, we have converted our 17" Targus Laptop Backpack.  If you see pictures of us carrying a backpack, we are actually carrying the vent.  I am planning to get another big laptop back with a handle and wheels so that we can roll for our next trip.  Also, we cut the side of the backpack, typically those segment is used to store mouse so that we can connect the vent circuit and still carry it.  Also, I have to put a small towel at the bottom so that the laptop and the side pocket's hole that I cut match and not break the vent circuit.  

6) Always bring extra because you won't be able to get much from the Medical department of the cruise.  

7) Don't count on the medical team on board.  Base on our choking and quit breathing incident, the nurses that happened to be there on our cruise did not have vent and trach experience.  When asked, she said that she has some, which you know it means none.  I thanked her for coming but she responded - You did it all by yourself.

8) Definitely have to bring extension cords, extra plugs because there is probably 3-4 outlet and it isn't enough for our machines, we had the vent, humidifier, pulse machine, CO2 machine, nebulizer, IPV, Portable Oxygen concentrator.  Some can be unplug while using the other but some has to be used concurrent.  Extension cords is crucial, if not, you will end up doing gymnastics like us, hopping over cords and with 2 other young kids besides Laynson, that has became a challenge. 

Lesson learn:

1) Always remember to bring our emergency bag.

2) Never let anything stop us from what we want to do.  It may be difficult but easy that life?
3) We bought a 17" Laptop bag with wheels so that we can roll the vent rather than to have to carry it all over.

Conclusion:
We are will be heading to the Alaskan Cruise in August of 2015 via Carnival this time!  

Saying goodbye is the hardest thing to do....

I left grandpa that day with a heavy heart.... though, I am so happy that you were also able to see your great grandfather.  Things that the doctors told you that you were not able to do were done...

I took off and headed back home alone.  I saw grandpa... he does not look like the grandpa that I left 3-4 months ago.  He lost 30-40 lbs within this 3-4 months.  He was diagnosed with TB, Lungs and Liver Cancer stage 4.  He barely could walk much, all he does is sleep all day long.

It's really sad.... I kissed grandpa many many times when I left that day.  I knew that it was the last time that I would ever see him in our lifetime.  I took off crying... wondering why life is so cruel... why do we have to know each other and love each other and yet, we have to say Good bye.  But I am also very happy and grateful that I got this chance, to see him for the last time before anything happens.  I asked myself, is it good that I had this chance or for some people, they don't even have the chance to say goodbye as their loved ones left suddenly.

Why is life being so scary?  Why???

Grandpa thank me, he said, he is very grateful that I came all the way to see him, to take care of him.  He told me that I'm his best grandkid of all, I take good care of him, I buy him lots of stuff, I give him lots of money.  I feel that since I am not there to take care of him, that's all I can give him.  I also thank him for being such a wonderful grandpa.  He loves me so much, growing up, he does everything for me.  He wouldn't even let me take my plate to the sink, he would do everything for me.  He built the BEST patio ever for me... made my house so pretty.

Grandpa, you just don't know that you are the smartest grandpa that I've known... you know so much, from cars to machines to building stuff.  You may not have the opportunity to get a degree but to me, you are smarter than all the other engineers out there.  You were very very sad.... I've never seen you cry... you were such a strong man but when I left that day, you broke down and you cried.... we both cried because it is so hard to know that this is our last time seeing each other.  

I'm very sad... but I will always remember all the beautiful moments we have cherished together.  I love you grandpa.... I will always remember you.....

The longest 10+ minutes in my life.... I thought I lost you forever!

Dear Laynson, I am so grateful to be still able to hold you in my arms.... you were gone.... lifeless for over 10 minutes.... I was bagging you and praying in my heart... God... please give my baby back to me.... Please and as I was bagging,  I was screaming.... Laynson, you can't do this to me... you can't leave me, you have to come back to mama... Laynson... you need to come back....  Friday, 1/24/2013.... a little past midnight... my heart stopped for as long as you were gone. :(

Please do not do this to me.... I love you and I need you.  You have to promise to never leave me, I have to watch you grow up, go to school, I have to yell at you to do your homework...  I have to see you get married, I have to see you do the impossible, like we always do.  Please... Laynson.... you need to quit doing this.

So.... this is all how it began.... I just got home from Landon's funeral on Thursday night, was tired as I flew home from another city and went straight to the funeral. As I got home, Laynson just got up as he was upset, it was about 9.30pm. He started fussing and turned blue, I ran and help my mom and the nurse and we managed to bag him, just another one of our regular episodes. When my mom played back the video, mom saw that Laynson was sitting on his high chair, watching his tv and at that time, his trach was out already. The nurse did not realize that. He started coughing, I guess he realized that his trach isn't in and was starting to get mad cos the feeling is different. The nurse quickly picked him up and yelled for me. I ran out and saw him turning blue, quickly got our ambu bag and bagged him. I realize that the feeling is different, I asked her, is the trach in? She looked and said oh no, it's out. I quickly switched out and started bagging him with the mask. She tried to cover the hole but it doesn't seem to be working. I quickly reached for my b tank, where my other ambu bag is and started bagging him. It was then I realized he wasn't coming up. I reached out to the phone to call 911 while my nurse starting giving him CPR through the mouth. I had to pass the phone to someone else because the 911 operator was just driving me nuts. I yelled at him because he was asking too many, saying like you said your son has a trach, where is the trach, etc... I got so mad, I said just send the damn ambulance here! I kept on bagging him while my nurse is doing chest compression. As I bagged him, I was screaming, Laynson, you cannot do this to me, you need to come back, you cannot leave mama  

Paramedics finally came, too calm, asking questions again while taking over my bagging. Told me, it's ok, we are ok because the machine finally picked up some readings... his pulse sox machine says 40s-50s oxygen. That's when I said, we've got to put the trach in (Which I know that is my biggest mistake, I should have done that before but my protocol was always to bring him back up and then put the trach on). They told me to step aside and be calm, we are ok.... I said we are NOT ok.... our oxygen is at 40s-50s.... finally, they put the trach back in and managed to bag him and brought him back up to 100. Laynsons eyes finally open but he was not responding, he looks straight through my eyes.... he was soft, like in a vegetable state. And during this whole time, my mom kept on saying... oh no... it's too long, he's gone for too long, I think this has made me conclude that even though Laynson is up, he has brain damage. We quickly went up the ambulance, I kept on calling him and he wouldn't respond to me, his eyes are open then but later just shut. I move him and called him many times, he just wouldn't wake up at all anymore  I had a zillion things that ran through my mind.... when I kept calling you and you wouldn't wake up.... I was thinking, am I going to be asked if to turn off life support for you as you will never wake up.... I asked God, why must he take you away.... I was scared.... I really was.... I cannot lose you. 

Finally in the ER, they were trying to get an IV in, he moved slowly and later started fighting. It took them close to 20 pokes to finally get 1 IV in. We were later then moved to the PICU for observation. 

You woke up the next morning, not wanting to do much.  I was afraid you would do the things you do anymore, I asked for kisses and you were reluctant, you took a step back... I was sad.  But you started warming up and stood up on the crib.  You looked at mama and mama asked for a High Five and you gave mama one, a slow one and soft one, not like your usual but you did it.  I was so happy, I said to the RT.... my baby remembers his HIGH FIVE....

After a while, you just started your usual.... you did your Kung Fu Panda moves... trying to escape your crib.... Mama calls it The great escape....

After that, you were wanting to eat, etc... I am so happy, I've got you back.  It makes me think about how we feel comfortable about what you have but in a split second, you can snap and be gone.  Lovely boy, mama loves you a lot, please do not do anything like this EVER.... I told Dr Copenhaver, mama needs a cardiac pacer really soon because mama's heart stops each time you do funny things :)

I love you sweet baby boy!  Thank you God for giving you back to me, it makes me feel so happy and thanking him each day for you!

1st year home..... YAY.... we did it! Happy 1st Anniversary!

I still remember being so anxious that morning.  It was THE DAY!!!! The day where I was supposed to carry you home, bring you home in a baby carrier, in your "going home" outfit.  Of course, that didn't happen, when we left the hospital, you were 5 months and 2 days old instead of 4 days old, mama still bought you a cute little outfit because it was a special day.  Yes, typically, I expect to bring home a little baby that wears a newborn size diaper but nope... mama brought home a BIG baby.  Mama's baby wears a size 3 diaper, same as your middle brother who is 2+ years old and guess what?  Mama definitely did not expect to bring home a baby that has teeth!  Yes, you do have teeth when you got home.  

FAST FORWARD...... 1 year later....

I am so proud of you, yes, we have scary moments, like having to call 911 exactly a week after we got home because you decided to quit breathing on us for over a minute.  Miss Yemi (our favorite night nurse) was talking to mama, we were looking back at a year ago, she said, if we just need to bag 3 times that shift, it was a GREAT night.  We go anywhere from 15 to over 20 times sometimes.  Yes my dear, that's why we are losing nurses because we do not resuscitate babies like that.  Anyway, yes, we have our ups and down but I am so proud of you.  Today, being exactly a year after we came home, you are walking, not a whole lot but quite a bit of steps. 

Look at how much you have grown?  Mama is very happy and proud of you little Laynson.

Btw, this shirt belongs to Uncle Lionel, so, this shirt is approximately 25 years old. 

Yay!!! We've got back our nursing hours.

So, ever since I saw the letter stating that your nursing hours will be cut from 168/ week to 112/week, mama has been stressing.  Yes, how would I manage?  It's not easy at all, even with 24 hours care, I am already like a cartoon running around going after your 2 older brother's activities plus work and business.  There isn't a day I go down without feeling like I am still not done with everything.

Mama was so nervous, mama called in on 9/6 at 10 am and mama invited Ms Sharon to be on the phone be with us if in case there is anything that mama cannot understand, at least Ms Sharon will be able to help us.  When we first started, the moderator said, we have decided this morning that we will resume all hours.

Thank you so much to Dr Gelfand and Dr Jenelle Wong for their letter.  I guess mama now learn another new thing in life!!! You are such an amazing mama, you teach mama so many things, now mama knows the system to fight Medicaid too.  :)  Happy happy... mama did the happy dance today.

Ohh... and Miss Cassandra is back, finally :)

Sitting down here at working, thinking about the day I read about CCHS, not knowing that one day, I would have a CCHS baby.

I have been traveling to work every other week now.  It's nice that I still have my 24 hours nursing but looks like they want to cut it down and when that happens, I am not sure how it will affect me.

Sitting down here, I have been thinking about the day where I was reading about this boy in UK.. apparently he fears to go to sleep because without support when he sleeps, he will not get up.  Little did I know that almost 2 years later, I have that problem.

Life is just full of surprises, sometimes, you may have already come across something but at that moment, it's just something that you glance through but when it hits you, then you remember... ahh... I read about this years ago. 

 

 

I'm tired.... thinking that I need to prepare stuff to fight with Medicaid to get my nursing hours.  Just not the thing that I feel like doing.  

I am currently reading Life without Limits, Nick said that everybody serves a purpose and when you talk to people, they will tell you that God is polishing me and wanting to equip me with things for future.  At a moment, I thought God wanted me to change career, but looks like... he wanted me to learn to be a schedule, a nurse, a pulmonologist and now an attorney?  Hmm.... well, I'll go now, whatever his plans are, I am sure I will be able to do it as I will fight for my little one.

 

We made it to NEW YORK... like the song... if we can make it in NEW YORK, we can make it ANYWHERE!

A year ago, on 6/22/2012, I was told that Laynson has CCHS, on 6/23/2012, we talked to our Pulm and it sounded like as if we will have a tough life ahead, as if it will be difficult leaving Dallas, TX where we live. I am so proud of Laynson, he is so strong and fights for everything, a year late, we are at NYC. This picture means a lot to me and Laynson. I want to show and tell him that I am so proud of him, and that this picture was taken with the statue of Liberty with us, telling him like the meaning of the statue, freedom.... 

Even though we have CCHS, that doesn't mean that we are stuck, we are free to do whatever we want as long as we have determination. We also managed to see one of the wonder of the world, Niagara Falls. Yesterday was exactly a year we had the trach, also the first time I met an angel Shelley . I want to thank all of my CCHS family for always being there for us, answering my questions and suggesting stuff to help Laynson. Without you guys, I wouldn't be able to take a picture, I cried inside as I was laughing with joy, it's like the song, IF I can make it in NY, I can make it anywhere is how I felt, my favorite Frank Sinatra song.

What is it like to raise a special needs child?

Some people has asked me, what is it like to raise a child with special needs?  I didn't know how to answer that question, not until I read an article.

There are a lot of moms out there, a lot of you know what you are going into, having a baby, expect sleepless nights, expect having to deal with crying and whinny baby, expect them to eat solid, expect them to sleep through the night at 4 months, expect them to crawl, then walk but for some of us... we were the same way, we expect to have our baby at full term, for the moms who has more than 1 kid, it's a "been there, done that" deal.  But sometimes, for some of us, you expect to "been there, done that" but without a warning, you've been thrown to a situation where you have never know exist.  When you were pregnant, you were never expecting to have to put your baby on a machine to help him breathe, never expect to see a hole in your baby's throat, never expect that your baby has to eat through tubes, never expect that your baby will never move except for their eyes looking at your, for me, the worst is that I never expect that I have to resuscitate my baby everyday to keep him living.

Some of us refuse to accept the fact, in fact, I myself had a tough time, trying to accept the fact, I hide behind the closet for several months, having to be on anti depression just to get up in the mornings to go to the hospital to see my baby, yet having to deal with 2 other kids at home and then, I was still working from home and dealing with my side business.  I still remember, one day, I really went into my closet, shut off all my lights and started crying and crying for over an hour because, that's where I felt like I was then... in the dark, crying and nobody to help me, asking WHY ME?

Months later, I slowly came out of the dark and realize that life has to go on.  But, when people ask me, what is it like to raise a child with special needs, I really didn't know how to answer them until I read the poem below.  It inspired me and I know that I deal with the mommy and babies business, for those mom who has to go through what I am, as well as those who just started going through and having deal with things that they totally didn't know that if they could or not, please read the poem below and WELCOME TO HOLLAND!

For me... I've been to Italy (2 Healthy Boys) and expected to go to Italy again but ended up in Holland the last time but I love Holland and Holland is where we shall stay, if you don't know what I am talking about, please, you have to read the article below and here is my BEAUTIFUL HOLLAND!

And here is Laynson, REACHING FOR A CURE someday so that not another baby and mommy have to go through what we went through!  CCHS.

Please note that this is not written by me, a mom actually shared this:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’...s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I can't believe what I just read! I don't know you anymore!

Laynson, this is not about you, this is about me.  I am very, very upset.  I never believe that I would read this.  Someone who promised to care for us, and that would walk every step of the way with us doesn't appear.  It is so easy to just say that I will walk with you and then disappear.  I don't want to say who it is but I am sure the person knows.

I am so sad, growing up, I care so much about everyone, I don't know why I am the one chosen to have to suffer all this that you have been going through, I don't know why you are picked as well.  Occassionally I quit asking but I haven't.

So, today, I read something that broke my heart into pieces.  I wouldn't believe it and that after this, I think I know where we all stand and let's just not have anything much to do with each other since money is more important.  When your life is perfect, all you care about is YOURSELF! 

Thanks for showing me who you are and I will remember this day for the rest of my life.  Though, I will tell you something and that if anything happens to you, I will still be there for you, because I have a heart, I am a human, even a stranger that I don't know, I would give them gifts, like Sara's Smile, I don't know her family but after reading about her family, and that her dad lost a job and she wouldn't have birthday gifts, I made sure that I sent her something.  I will do the same for you but know that where you stand in my heart now!

Disappointed Laura!

I survived being gone for 2 days after CCHS!

Thank you God for allowing me to successfully survive 2 days being gone from CCHS!  Yes, I was very anxious, nervous because I have never left you since the day you conceived.  Though, the original plan was, after you are out, mama would travel for work again 6 weeks later.  Of course, life is never as planned, I wish it is, then, things would be more expected and not as scary.  Who knows that 8.5 months is when mama finally got to go back to work.

I know, again like I say, those who wants to judge me, please go ahead and judge me.  Please talk behind my back, saying that I am a bad mom who leaves my kid alone, especially when my baby is a special need baby.  It's so easy talking behind my back.... but it's ok.  Please go on but for me, I am so happy. 

I still remember, 7.5 months ago, after knowing that you have CCHS, Dr Gelfand told me, Malaysia's got to come to me and that it sounded like, if I am lucky, I get to go out of Frisco, at most to Dallas.  It is definitely heart breaking.  It sounds like you will never see your grandfather, you will never have a life!!!  Though, you know mama since you were in mama's tummy, mama stayed strong even though mama gone through a lot when you were in mama's tummy.  Mama traveled for work till mama was 35 weeks, mama was on the plane with your 2 brothers, headed to see your dada at 36 weeks and we came back at close to 37 weeks.  Yes, agree that after being in the NICU, it was a crazy idea but mama wanted to show you that we are both strong people.  We are fighters.... we don't just say we cannot do it and let go.  

Mama want to tell you that, unfortunately, we have CCHS, we will let CCHS delay us but we will NOT let CCHS STOP US from doing whatever we both want!

Ok, mama admit, throughout the day at work, mama was busy watching you on the phone or internet, making sure that you are ok.  Mama saw Miss Cassandra playing with you, Miss Yemi giving you hugs and kisses at night.  Mama feel happy that we have loving nurses like them, so that mama can work peacefully.

Mama didn't get home till 9.30pm, flight was cancelled and had to fight to get a spot on the last flight out.  That use to be mama's past life that mama is reliving, even though Dean and Denny was frustrated but for me, I was enjoying it.... I did not complain one bit, I appreciated it instead :)

Allen allowed mama to go back to work every other week.  That doesn't mean that mama don't love you, in order to have a better life for everyone at home (including you especially), mama will work harder and hopefully will succeed in mama's career as well as business.  I love you sweet Shen Shen, BB and DD!

It's tough but mama made it!!! First travel after CCHS.

It was so hard leaving you and your brothers behind but.... life must go on.  We are not going to let CCHS stop us from doing what we originally plan in life.  Yes... those of you who constantly love to judge people, judge me, go ahead.  You must be wondering, how on earth a mother can leave her kids behind traveling for work?  I am sorry but that's the nature of my job, if I want a better life for my kids, if I need food to be place on the table, if I need a roof over my kid's head, this is what I've got to do! You don't have to tell me what to do for my family, you don't know what is best, maybe you think that it's better of this or that way, but please... this is my family, this is my sons, this is my life, so, before you think of judging me or telling me what to do, please remember that!

Look at you, mama is so proud of you...  you are sitting by yourself and thanks to Miss Launa, she's teaching you how to catch up to kids your age.  You are such a strong boy, please don't ever get mama wrong whenever mama feel sad thinking that you are not a normal baby :(  It just hurts so badly, thinking that you could be a perfectly healthy baby.  I know you are trying really hard, I worry, I seriously worry that you maybe slower in everything including school, it's sad.  People keep telling me, worry when you cross that bridge, it's hard... again, this is not you, not your baby, not your family, it's so easy to say such thing.

I hate going to normal facebook, because that's not normal for me.  People are having kids, having perfectly healthy babies, their sibblings get to take pics with their newborn without tubes hanging everywhere.  Instead, I find myself going to closed facebook group, places where I now belong, where we belong.  I feel that a lot of times, Facebook is just a show off, people are showing off what they bought for their daughter, people showing off their healthy kid walking.  Yes, that's pure jealousy, I admit it.  I guess today is just not my day.

Though, mama is coming home... mama hasn't been lucky at all, so, my first flight back is delayed, 4 hours delayed.  It's ok, mama will come home, mama misses you and is watching you over the ADT app.  I love you sweet baby!

Why are some people so inconsiderate and so insensitive?

Well, honestly, it's sad and mama try to shy away from these type of people.  People that are inconsiderate, insensitive.  There were people who asked, what's wrong with you?  Do you have down syndrome but they already saw pictures of you.  Friends that I have not talk to over 15 years would all of the sudden be so caring, asking how's my life where else when everything was ok, they never bother to even say Hi on Facebook but as soon as they hear that Laura had a baby that had to stay in the hospital for months.  Then, they send PM through facebook, talking at first and then indirectly asking about you.  I don't really share much to them, why??? Because I just didn't want them to gossip about me and you behind us.  I am sure, it will be a fun topic when they go out with the girls saying... Ohh... you remember Laura Wan?  Did you know that she recently had a baby and I heard that her baby.... blah blah blah.  That's human.

I seldom go to the normal Facebook page, so many of mama's friends are having babies or had babies, yes, they are so happy to post pics of their normal kid.  Mama is still grieving... yes, even 8 months later, I am still.  I may for the rest of my life, I don't know when, maybe someday I will stop but I am still.  I tend to find myself going to the CCHS page, Texas Mommies of the Miracle page because those are the people who actually shares and understands how I feel.  Even my closest relative won't know how I feel, they don't know that they are being insensitive but it's ok.  I continue to just share their happiness but they don't know that they are hurting me inside.  Had a friend that told me the gender of her baby and was excited, the next sentence is.... and baby is a healthy one.  She obviously did not know how I feel.  Yes, I felt offended.... it was like a smack to the face, showing off that she has a healthy baby growing but guess what?  When you were in mama's tummy, you were as healthy as can be because you were breathing through mama.  You did not have any issues at all, we all didn't know that you had this until 6 weeks later but 30 mins being out, you were already in the NICU.

Though, mama continue to count the blessings, after being in that Facebook group, mama realized how lucky mama is, you are mobile, you don't have a G Tube, yes, you have a trach but we can eventually take that out.  I always tell people, we live by the seconds, we don't know what the next second would be, but it's ok, we live and pass this second.  We can and will have plans but if it's delayed, it's ok, we both know that it won't be stop because we are both fighters!

Anyway... this is you and mama.  Picture of you before mama leaves for the first time to work.  Shen shen and mommy time and camwhores!

Ok... let's be serious!!!

Ok... now... let's act SILLY!!!!  Look at you, how happy you were!

I feel lucky to have this baby in my life :)

It's your dada's birthday today and tomorrow will be the first time mama is leaving :(

I am getting really really nervous.  In fact, I have butterflies in my tummy now thinking and knowing that I will be gone for 2 days and all I will see is you through the camera over the internet.  Will you be good?  Will you be ok?  OMG.... I just don't feel good now, feel like throwing up not knowing if you'd be ok my little baby.

This will be how mama will see you, yes, there you are, talking to one of our favorite night nurse, Miss Lorpu.

Our first birthday celebration as a family after the going through a scary period in our life :)

Yes, and birthdays is about the boys, not us, they requested 3 candles so that they each get to blow one :)

Thinking about it makes me really nervous.  Also, dada has been home since 12/22 and now he has to go back to his regular routine again :(  Why happy times goes on so fast?  I love you little baby boy!

Happy New Year 2013 baby, this will be a great year going forward!

2012 is a horrible year for mama.  We had family issues when mama was pregnant and then, after you were born, mama's life turned upside down.  Then, business started sliding because mama couldn't get shipments fast enough and couldn't answer customers fast enough.  At the very end, we've got news of Aunt Betty, whereby she was hit on Winter Soltice day and passed away on Christmas.  I hope this year will never repeat itself, it's such a horrible and cruel year to at least our family.  I do not wish to ever have to relive this.

Though, we promise each other that we will have a great year going forward.  So, we started off our New Year with FOOD of course.  We brought you to gong gong's favorite Chinese Buffet.  Yes, look at you, such a big boy, sitting down on your own, holding your favorite mum mum crackers. Of course, you ate some food from the Chinese Buffet, you ate some cheese cake... sorry, mama love chubby babies and made sure that you ate something that will fatten you up :)

Look at you, you were so happy and excited

Ohh... yummy food!

Mama, see, I am actually eating, it's not for show.

Ok, after that, your Ah Foo said he wanted to make us steamboat (HK Style)!  So, off we went to the Chinese Groceries for the first time.  Ok, this is your first time shopping, I am so proud of you.  You did not fuss at all, instead, you were enjoying, looking at things, people but unfortunately, mama needed to hide your trach because somehow, Asians are different, they would stare at you and probably even talk infront of you and not even behind you wondering why you have a trach and machines.  Sorry, mama don't understand why but mama learnt not to do that :)

Look at how cute you are... ohh and mama purposely took a pictures of you and the Asian bottles... hehehe.

Shopping with Yee Ko

and...

Tai Ko!!!!

We had a fun day out and ended up eating Steam boat at home.  It was good since it was a cold day.  I wish and pray that we will forever have good days, ok, I know mama is being silly, it's ok to have bad days but just a dot bad, nothing like what we went through last year!!!  Love you boys and especially you little fighter!

Nursing Home Stay - DONE! You are APPROVED for Medicaid

In order for us to be approved by medicaid, mama had to bring you to Gainesvillee's nursing home.  It's the closest one to us apparently.  But, you may wonder why we had to bring you there?