Friday, February 22, 2013

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

Monday, February 4, 2013

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!