A Day At The Park

Taking a look around AOL J-land last night, I see the after Christmas-Funk has lifted. We are in higher spirits...

It was time for us to take those new toys out and play at the park. I won't say anything else about that. If you click on the album...our story is there. Have a Happy New Year!

ps::I'll try to make a New Year's entry...Can't wait to look around J-land this evening to see what you are all doing. As for me, I still haven't had Christmas with my whole family. (my Mom and Dad came over for a little while on Christmas day.)We are going to my  brother's house tomorrow for our family Christmas. I will be making my cheese ball tonight and taking a swig of champagne here and there. (I better make that cheese ball first) It's been our tradition since having Stephen to NOT party. We sit home and watch Dick Clark, and let Stephen stay up and watch it too. (he has sparkling grape juice)

Stephen's 11th B'day. Bittersweet for me...

Stephen’s 11th birthday was the day after Christmas. Just look at that picture up there, doesn’t he look happy? Well, he is happy. Stephen is one of the happiest children you’ll ever meet. After spending almost 10 years of my life around mentally challenged people, I’ve noticed for the most part, they all have a unique ability to be very happy in spite of their circumstances and overwhelming obstacles. I sometimes envy that ability. On parenting a mentally challenged child, I have to say that it’s had it’s ups and downs. Sort of like a roller coaster . Sometimes, I feel that it is more of a challenge for me than for Stephen. To him, everything is normal. Because, it’s all he knows. He doesn’t know the hopes and dreams that I had for him while he was growing inside me. He doesn’t know that I already had his piano teacher chosen. He doesn’t know the school he was suppose to attend. He doesn’t know what team his father dreamed he’d play football for. He doesn’t know the dozens of books I read to prepare myself for parenting. Books that I wasted my time reading, and eventually donated them to charity. They do not apply to him, or to us. Since he was born, little by little I noticed he was different. With much guidance from other parents of challenged children, teachers and doctors, I have a whole new childrearing library with book titles like, “What to do when your child is challenged.” I know it sounds silly, but for years, I held onto the misconception that he’d grow out of it. Each birthday, being a reminder that this is how it‘s going to be. Always. Each year, I realize more and more that he won’t grow out of it. I know now that this is false hope, or denial. I’ve spent most of these 11 years trying to find a cure, a miracle or a way to bring him out of it. Instead, I should have been searching for a way to accept it. I’m learning that acceptance is something that comes with time. Even after this long, I still find myself in a state of shock at times. His birthday is supposed to be a happy occasion. And for him it is. To me, it’s a reminder of the way things were supposed to be. But I am slowly but surely accepting it. It’s a daily struggle. But a struggle that has been worth every step. His innocence, smile, laughter and unconditional love is what makes it possible.  Along with daily prayer...and a story that I almost know by heart. (below)

cont) Prayers, and unanswered questions

When you’re the parent of a child with any form of disability, believe me, you’d do anything to make them, what society has labeled as, “normal.” I’d probably even take him to a witchdoctor if I really thought there was a chance he could be made whole. I remember a few years back, we took him, in the dead of cold winter to a TV evangelist, with hopes that when we left, he would be “healed.” Another disappointment. He had a severe asthma attack in the cold wind, while we waited in line for 3 hrs to get in. After a while inside, he was crying so loud, we were asked to leave bc the show was being taped and he was interfering with the audio system. Let me tell you right now, how hurt we felt. I still support my God and my local church, but that’s the extent of it. We gave an offering that we could not afford to a man in a white suit, who owns a private jet, and was asked to take our crying child and leave. Without our miracle. Another little girl about Stephen’s age, had CP and was in a wheelchair, and she too was asked to leave bc she was crying. The verse that comes to mind is~Mark 10:13-16 13. People were bringing little children to Jesus to have Him touch them, but the disciples rebuked them. 14. When Jesus saw this, He was indignant. He said to them, “Let the little children come to Me, and do not hinder them, for the kingdom of God belongs to such as these. 15. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.” 16. And He took the children in His arms, put His hands on them and blessed them.

 I’d be lying if I said that I don’t still pray every day for God to “heal” Stephen. As a matter of fact, it hit me at the oddest moment today. I was sweeping the kitchen floor, and I had to put my broom against the wall and I sat at the table in tears, asking God for three things. 1. Why? 2. Please, heal him. 3. If you’re not going to answer the first two, help me cope with the loss that I still feel. I'm so tired of the grieving.

Welcome To Holland

WELCOME TO HOLLAND

By::Emily Perl Kingsley

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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. 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....and 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."

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

Lyrics to "O Holy Night"

O HOLY NIGHT

1847~Lyrics written by::Placide Cappeau~Composer::Adolphe Adam

O Holy Night
The stars are brightly shining
it is the night
of our dear saviors birth

Long lay the world
in sin and error pining
'til he appeared
and the soul felt it's worth

The thrill of hope
the weary world rejoices
for yonder breaks
a new and glorious morn
oh fall on your knees
oh hear the angel voices!
oh night divine
oh night when Christ was born

oh holy night
oh night divine
oh holy night
oh night divine

Truly He taught us to love one another
His law is love, and his gospel is peace;
Chains shall he break for the slave is our brother,
and in His name all oppression shall cease.

Sweet hymns of joy in grateful chorus raise we,
let all within us praise His Holy name;

Christ is the Lord,
oh, praise His name forever!
His Pow'r and glory
ever more proclaim!

His Pow'r
and glory
ever more proclaim!

 

Almost Christmas

Well, midnight and I CAN'T sleep! I forgot to mention in my below entry, that I got a much hinted for Christmas gift! A digital camera! YaY! Now, if I can only get the hang of it..Three hobbies that I have always loved to do..Writing, Photography, and Painting/Craft projects. I began art classes and writing a journal while in 4th grade, then took up photography in my teens. Laid it all down for a while, getting married young, and going to work in the salon (another form of art for me, hair styling) I love making people feel better about themselves, especially elderly people~I've always had a heart for the elderly and/or disabled people. Hence, God granted me the gift of Stephen. My masterpiece as far as I'm concerned

Unlike me, I'm really at a loss for words tonight, I'm just rambling. I have my list of to-do's dancing in my mind for tomorrow. I am visiting my Aunt Ressie to exchange gifts in the morning. I have always loved her and her home. The only word that best describes her home is PEACE. I have always felt a sense of peace in their home. Sanctuary-like peace. That is what I long for in my own home. That is my BIG Christmas wish for myself and my family this year~peace. Hearing Trish sing this song, "O Holy Night" makes me shed bittersweet tears. Tears for the Christmases of yesterday, that are etched into my mind and heart. Tears for the new memories and the ones to come. Tears for the true meaning of~O Holy Night. This song describes how I believe all Christians feel or should feel about our Savior. Before I go to sleep, I will fall on my knees and be thankful for the night, Christ was born. Above this entry, I'll post the lyrics to "O Holy Night"(since there's a limit here) and close with a "Merry Christmas" to all of my friends.
 

All I Want For Christmas

This picture tells the story of part of our exciting day! I had tons of last-minute things to do. I went to my friend's salon and did some work there, and stopped by my mama and daddy's house to sneak my daddy's presents for mom out of his truck into mine, so I could bring them to my house and wrap them~when I got a phone call from Stephen's dad. He told me that one of Stephen's teeth was missing, and he was pretty sure that it's a permanent tooth, so we began to panic! I mean..Just look at that smile! We can't have him, snaggletoothed! His smile is so endearing! I cried all the way home bc Paul was sure that Stephen swallowed the tooth, it was nowhere to be found. His dad called a highly recommended pediatric dentist emergency number. I couldn't believe that Stephen's pediatrician recommended MY pediatric dentist! He is still practicing!?! So, the very sweet man, met us at his office, and examined Stephen for us...and guess what? It was a baby tooth! I thought he'd lost all his baby teeth, but apparently, they lose them up to age 12 or so! Hey, how was I to know? So.. here is a big picture of my baby with a big ol' gap in the bottom of his sweet-drooly smile... I'm just happy that it was a baby tooth. STILL can't find the tooth, so I guess it's being digested right now (ewwe!) Plus, he told us that the one behind it is almost ready to come out too. Being a heart patient, and Cerebral Palsy, we're going to have to hospitalize him for just a cleaning! The dentist we've been taking him to, just hasn't done a thorough job, and my old dentist is very experienced with special needs kids. I couldn't believe that Stephen loved him and even gave him a high-five before we left. What a day. What a relief! Now~We're just waiting for Santa AND the tooth fairy to come! Only..there's no tooth under the pillow.