Sunday, January 31, 2010

Recap:  Yesterday I expressed that I want this to be a blog about Living.

I am inspired to live a great life because of my beautiful children and the students that I interact with daily.

Today, I was asked “How is it to be a Mom of not only one child but three children with disabilities?” The best way I can explain it is by posting this poem that I have hanging in my bathroom called “Welcome to Holland” This was written by a mother of child with down syndrome.

Welcome to Holland

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

Until next time,

E

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Saturday, January 30^th, 2010

A continuum of yesterday…

I asked for council from my friend Rocky yesterday. Rocky is an avid reader of my blog. As far as I know he reads daily and really believes in what I am doing. I asked him for his guidance about what I am writing. I often wonder…Is this interesting? Am I writing enough? Do people care? What should I write? Am I holding back? What is this blog supposed to accomplish? Who should read this? The truth of the matter is…I am not feeling as motivated as I was before in regards to writing this blog. AND the truth is…I committed to writing this for 365 days. In the past I have not done well with following through with what I say …i.e: losing 20 pounds, organizing my house, reading, working out 4-5 x’s a week, etc.. Should I go on? I refused to let this blog be something I didn’t follow through with! I made a commitment to you as a reader and most of all to God.

So…I decided to reach out, I spoke with Rocky and he asked me one question… “What information are you holding back?” Rocky knows me well enough to know that I haven’t been 100% authentic when writing…and he also knows me well enough to know that my intentions are to be 100% authentic. So, I thought about it last night…about what I wanted to accomplish through writing this blog. This is what I came up with…I was told when I was 16 years old when I became pregnant with Taylor that I wouldn’t be able to accomplish anything great with my life. Then when Taylor was born 4 months premature I was told by the doctors and others that no only would I never be able to accomplish anything great in life but she would never amount to anything in HER life.

Up until 6 years ago I always believed that I was only worthy of having a certain life. So for 10 years I spent my days taking my children to therapies, doctor’s appt., being a typical housewife and doing all the typical housewife stuff. Don’t get me wrong…I am grateful for those 10 years because I was able to be at home with my children and really establish a relationship with each of them. I was blessed to be able to be there for them and provide exactly what they needed in order to give them a more productive life.  I wouldn’t trade those 10 years for anything.  However, I didn’t go on a vacation those 10 years, I weighed 30 pounds more than I do now, I never believed that I was ever worthy or capable of graduating from College or looking a certain way, or feeling a certain way. Therefore, my marriage and life reflected it. I was told early on that I “couldn’t” or “wouldn’t” have what I dreamed of or wanted in my life. I realize now…how truly unhappy I was. I was so unhappy with myself that how could I be happy with any partner in my life. My ex-husband could have been Brad Pitt and I still wouldn’t have been happy. I didn’t have God in my life, I believed I was unworthy of anything! Especially, unworthy of being loved unconditionally. I will explain more tomorrow.

Tonight, I will leave you with this….

This is a blog about living. Living the life that God intended for each of us to live. So…what am I going to write about? Simply, how my children and I live.

Until next time,

E

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Friday, January 29th, 2010

A busy day it has been! So busy in fact that my legs ache. My body was aching so much, I was wondering if I am getting the flu again…and then I realized that I haven’t hardly sat down at all today. So, before I close my eyes…I will share one moment…

I received a message with a video attached to it on facebook this morning. The message and video was from a girl named Kristen who is in her mid-20s. Kristen has cerebral palsy. She friend requested me on Facebook a few weeks ago after seeing one of my YouTube videos. She is now friends with all three of my children on Facebook. Kristen made a video for the kids. It was really cool to see her and to see the similarities she has experienced. What a blessing it was to see her say how this blog has helped her….it gave me my excitement back to continue to write this blog. Thanks Kristen for helping me!!!

Until next time,

E

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Thursday, January 28th, 2010

Until next time,

E

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Wednesday, January 27th 2010

FMOTD: Taylor left me a voice message today and she said at the beginning of the message “This is your daughter calling. Not the daughter with the walker, but the daughter without the walker, thats me!” I wish I knew how to record it and put it on here. It was pretty funny.

It has been raining here all day! I think I have said it one other time…and I will say it again…I absolutely LOVE the rain! I love it, love it, love it! The streets and city here in Las Vegas seem to be so much cleaner afterwards…and there is no question that we need the rain!

Yesterday, I was able to resolve some of the current challenges that I have been facing at the social security office. This time I out smarted them! I took reinforcement. I took Taylor with me!!! We got there right when they were about to close the doors and Taylor walked right up and knocked on the doors…they couldn’t resist. The security guard said “Ok, just this once” and let us in. Thank you Mr. Security Guard!!!! We were the last ones in there so our visit went very quickly and smoothly! I don’t think they would have let me in if Taylor wasn’t with me. Just something about her smile…you can’t resist. I wish could say that is the end of the saga of social security income & medicaid for individuals with special needs, however I have a feeling that the adventure will be continued.

I am currently sitting at a coffee shop waiting for the 3 little children to finish their Church Small Groups. They each attend a small group house roughly two times a month. Each group is consisted of a group of students (40-50) that are roughly the same ages, who attend our church, live somewhat in the same area, and go to nearby schools.

Jorden @ Breakaway w/ Central Christian Church

It is well worth the 45 minutes it takes to get each of the kiddos to their individual groups. These groups have changed my children’s lives. I really mean that! They each have had the opportunity to connect with other kiddos their own ages that accept each of them where they are in their life…AND one important fact is that each of these children is given the opportunity to put Christ in the center of their life (it doesn’t get any better than that!) .

Taylor at Camp with Central Christian Church

Honestly, I never thought my children would  ever have had the opportunity to be with a group of students their own age independently (without me), attend Camp out of state, and simply have a group of people that know everything about them and accept each of them for who they are. It’s absolutely wonderful. I just want you to understand one thing…on Sunday when I take my children to church (www.centralchristianchurch.com)

My children walk in those doors where there is roughly 5,000 people that attend each Sunday, and each one of my children go their own way. They go to their age group services, volunteer, and socialize in the coffee shop. I never worry, because I know that if they need assistance it is never far away. The body of Christ is near! Their is hope for each of them…it is evident. It truly is a blessing for all of us!

Time is up! Gotta round up the troops!

One more thing…I have a new favorite song that I caused Erin & Jorden to say “Really? Again?!” The repeat button is on when this song is playing! I can’t hear it too much! Hope you enjoy it like I do!

Until next time,

E

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