Anyway, I haven't been up to a lot of things every since he was born. He was born on April 29th 2012. Ever since he is born, my life has changed and will never be the same. All of the sudden, without any warning, I am a special need kid's mom. I have been into a deep depression whereby I just felt like hiding in the closet and not come out. For 6 weeks in NICU, we have done test over test over test and everything has come back normal but the question is, WHY does he stop breathing or does shallow breathing? It was that bad till he went into a seizure and had to be intubated multiple times. For those of you who has babies in the NICU before, you probably know what intubation is, for those who has healthy kids, like my first 2 kids, you will never know and will never understand how it is to see your baby that you have carried in you and loved for 9 months suffer with a tube in his mouth just to help him breathe. 6 weeks later, I was told that my son has a rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS), also known as "Ondine's Curse". When I was told about Ondine's curse, it sounded really bad, it's like I have been cursed.... the truth is.... I am! My son will stop breathing or does shallow breathing causing his CO2 to raise. When he was 3 weeks old, he had a seizure due to a CO2 level of 199 (Normal range is 35 to 45). Thank goodness, he did not go into a coma.
As of today, August 19th, I am still in the hospital, we just moved out of NICU last week to the regular ventilator floor. Most of you make small decisions such as whether to put them in a day care or not, whether to use cloth diapers or not... for me, I had to make a decision where by I have never imagined I had to, which is to trach my son. For as long as I have lived, I have never been asked to make such a difficult decision, to me, when I was asked that question, it's like you are asking me to turn off the life support of my son and to let him die. Yes.... it is not the same but to me, it is because you are asking me to take a normal life away from him but then again, I was asked another question, do you want him to live? YES!!!! But I know, some of you probably had to make the decision to turn off life support of your baby and actually had to do it, so... for me, it isn't that bad after all compared to some of you. I cried and cried and when I saw him being pushed back from the OR with the trach and tubes connected to his ventilator, it just felt like I am seeing a knife cutting through my baby's throat.
I HATE walking into NICU daily, there are days where I really have to drag myself there. I needed to see my baby badly but why... why do I have to go to NICU to see him? I just didn't understand. I had 2 healthy boys, I had a normal pregnancy, I had a perfect delivery but why 30 mins after he was born, he was sent to the NICU? At first, I did ask... WHY me? Why am I chosen? Some console me, telling me that God will not give me something that I cannot handle, I ask, is this something that I can handle? NO.... I cannot, yet, I have to pick myself up as I have a family to support, I have 2 other boys that needed a mama and needed food on the table.
I asked my husband yesterday, do you think I can survive by just sleeping 2-3 hours at night and just 15-20 mins naps here and there daily? He said no, and the truth is I tried really hard and I couldn't. During the weekdays, I try to stay in the hospital with him and if my dad doesn't bring the boys to see me in the hospital, I have to drive back home. There are occasions where I fell asleep awaiting for the traffic light and awaken by the honk.
I used to be a girl with goals, with dreams, I am so happy that I work really hard to achieve what I want. I have a day job, I work from 8 - 8+pm in the office, I immediately go back to the hotel (as I travel for work) and work from 9+ to 1-2am daily without fail. I started off with selling a few diapers a week to what I have now. I think of ways to promote by business but after April 29th 2012, a tornado has swept through my life and left me in a total mess. That's my life now. I scramble each day, I cry when I am alone as I needed to show my family that I am still strong and going but the truth is, I feel defeated.
Yet... I have to see message that customers leave me, telling me that YOU SUCK... You have the worst customer service ever, you have the slowest shipping ever. Yes... that's me now... I have nothing but I SUCK in every ways! Thanks for telling me that! It really does bother me and I don't blame my customers... customers are always right. When you have a near perfect (never perfect because grass is always greener on the other side) life... then, a few days late on receiving a product would make someone really mad, I had to be threaten each time... threaten to be given a bad feedback, threaten to be told as the worst diaper company ever.... I am SORRY.... I didn't mean all that I've done. I didn't mean to ship late, didn't mean to be sending the wrong colors, didn't mean to upset anyone at all.
I haven't been going to facebook much for the longest time, if I am on, I am constantly on the CCHS group page, finding reasons why my son is doing this and that and talking to parents, asking them what they went through with their kids, looking at family with older kids to assure myself that my son will live. I don't go much to the regular facebook because I am sad... yes, I envy you guys with normal and healthy kids, pictures of your babies with you guys... I don't. It hurts me so badly. A dear friend told me to cry it out, to grieve... she told me, Laura.... you need to cry, you need to let your feelings out, you lost a child.... you lost a healthy & normal child that you were expecting. You need a period to grieve, yes but I feel like I don't even have time for that. I hardly go anywhere now as I feel really upset seeing people carrying their beautiful baby out, where else, I hardly can carry him much because it irritates him and whenever he is irritated, he holds on to his breathe and turns blue and pass out. For normal human, when they pass out, the brain will automatically send a signal and the kid will breathe again, unfortunately, it doesn't happen for him, once he pass out, if we do not bag him, he may eventually die.
There are several occasions whereby I told my customers the reason why I am late, why I am making mistakes and I still remember a customer telling me... you shouldn't mix business with personal. That's why I said, it took me a while to write this on my business blog since this is personal but the truth is.... I am a human, I have my personal life. I wish I can forget about my personal life and just focus on business and treat as if nothing has happened but unfortunately... I am not able to :( My life is my family, my day job and my business. I cried on my way to the hospital today, I asked myself, will I ever smile again in my heart. I try to smile outside but inside, I feel like I will never smile again. I also remember a customer telling me to stop my business to focus on him, I wish I can.... if the doctors or God can tell me that he will be in this situation for 6 months or 2 years or a definite answer, yes, I will do that but unfortunately, no... this is a life long disease without cure... in the mutation numbers, he is the worst case and I cannot afford to stop my life to just focus on him, like i say, I need to put food on the table, a roof over my family's head. It's not something that can be fixed with a surgery and poof... he's a healthy and normal child.
I just wanted to share my feelings with some of my customers who actually cares for me, thank you very much for keeping us in your prayers. Everyday, I hope to get up and everything that happened these couple of months is just a dream and it's just a nightmare unfortunately... I know that it will not happen. I know that God has chosen me for a reason and I have never blamed him. I just hope that life would be easier on me. Thanks for listening and I know for some of you who still hate me and thinks that I deserve this... I am sorry for making you guys upset and disappointed.
Regards,
Laura
Dedicated to my sweet baby boy, Laynson : http://www.laynson.com
