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.

This entry has nothing to do with Christmas

When I was in my early to mid 20's, I worked out at the gym at least 4 days a week, and walked several miles a day. One day after a very intense aerobic workout, I started having sharp, stabbing - almost crippling pains in my lower left leg and foot!  My trainer told me I had shin splints and to lay off on working out for a few weeks, keep ice and heat on it, yada, yada. Since then, I have flare ups on occasion. I DO NOT work out any longer.. I haven't had a regular exercise routine in about 11-12 years, and this is one reason why.  The pain comes back at least twice a year, and it's debilitating! I decided to do a search on shin splints treatment on the www this morning, and everything I've read, says that the pain is located on the inner part of the shin, My pain is on the outside of the shin, all the way down to my toes and even my toes cramp really  bad. (imagine having severe toe cramps, you know how your toes cross over each other?) It started Sunday... and the only thing I can think of that triggered it was going shopping on Saturday.  We did a lot of walking on concrete floors and I was wearing high heeled boots. Maybe this is what did it. Anyway... I know some of you out there (irun, Andrea) (?) work out a great deal, and thought maybe you had an answer for me. C'mon guys, give me some hope that this will go away before tomorrow! LOL! I'm a worrier (big,time) My brother was dx with Muscular Dystrophy 2 years ago, when he was 45, and he's always had these really bad toe and finger cramps like me. He was once very athletic, a fireman. Ran and worked out every day and thought the same as me... (worked out too hard today) When he was diagnosed, the Dr. made him stop working out, said it was damaging his muscles. He has since, retired from the FD after 20 yrs with them. My Dr. says I probably won't ever have MD, but I worry about Stephen's future. I know he could have it. Something about that gene that effects only male offspring of the Mother, and female offspring of the father. (My mother is the carrier) Still, when I see my leg & foot actually cramp to the point it curves inward, it's scary. I've rambled more that I intended. So, does anyone have any treatment advice?

See? It has gotten better...

Ah, you see? I told you that it's gotten better.  This picture was taken last year at the Galleria (a local mall) The Galleria does something very special for Special Children every year. They give them breakfast with Santa. (somehow, we missed it, this year) There is a 5 star restaurant and hotel located at the Galleria as well, and their chefs cater an amazing breakfast to the children, teachers, parents.. etc. Served from their best silver, on their best linen. Wish I had a picture of that!  It's really beautiful, and would make anyone feel important. I suppose you could call it the royal treatment. Also, they offer free carousel rides, free pics with Santa, and a big goodie bag, packed full!  So-you can see from the photo up there that Stephen no longer cries, but he wants to get his hands into Santa's beard so bad! (notice, santa is having to hold both Stephen's hands away from his beard) Oh, that poor man, I do hope he got paid well that day. There were hundreds of kids lined up, far as the eye could see' "The line stretched all the way to Tarahote" :P (Made me think of the mall scene in A Christmas Story-although this Santa did a very good job, acting cheerful, whether he was or not)

ps:: So many of you will be happy to know that for the first time (in almost a YEAR) Stephen's dad and I are getting some respite, this afternoon! Whoohoo, lunch and shopping! Yep! Stephen's behavioral specialist who worked with his intensive in-home behavior/communication program, and has advocated for him within the system, is providing the respite! (God bless her!)

Some Journal Links

I wanted to recommend some journals that I've been visiting recently.. I've noticed this is something I don't do enough of...I click in and click out. Sometimes I leave a comment if I have time. But... These are a few that I've been enjoying and keeping to myself.. Now-I share with the rest of my Journal friends :)  When/IF I have enough free time, I will add to my favorites (which is rather difficult, as I find a new favorite every day! (Not enough room!) May I suggest, look over in my favorites on the left and visit Pamela's Journal directory; She has done an amazing job putting this together. Again, Thanks Pam!

Watching My Sister Disappear (I just stumbled on this, this evening. A very warm and heart touching story. I plan to visit this journal regularly. She touches on a subject very close to my heart)

Admire the Magnolias (Brenda has been a dear friend of mine for a few years now. We share the common bond of mothering special needs boys)

Once and Again (once known as Jslack, has returned, Thank God! I missed her and I'm happy to have found her again :)

Dad's Tomato Garden (reminds me of my own dad)

Stephen's first Christmas

I'm not even going to write a story, here. The picture above, says a thousand words! (A special THANK YOU to my best friend, Beth ~ for making this graphic for me!)

Oh Lord, and it's only Tuesday!

Man, what a week it's been! And it's only Tuesday! Stephen is sick with a cold. (major bad for him, it takes forever to leave his system bc he has Asthma) A word of caution for parents of toddlers or older special needs children: My dad gave me a glider/rocker with a rocking footstool thing. (you know what I mean) Stephen becomes obsessed with anything new, that comes into the house. Last night, I heard Stephen, rocking away in the living room while watching TV, as I was getting his Vick's vapor bath ready and I didn't think much about it. All of a sudden, I heard a blood curdling scream, and he met me half way down the hall, holding his left ear and screaming his head off! I could see the marks on the left side of his face, and his ear was red, and bleeding behind it. He's nonverbal and unable to tell me what happened, but I assumed after hearing the rocking, he must have gotten his head, hung up in the footstool! (he's been playing with that since it came into the house) the mark on the side of his face is exactly the size of the wooden parts that swing. Thank God, he was able to get himself out of there, without breaking his neck. I've heard horror stories about recliners and a member of our Angelman community, lost their 11 yr. old son a couple of years back, bc he got his head lodged in the foot-piece. he's okay, other than bruised, but it could have been tragic. I just wanted to let parents know, so you can all be careful with those things. Pray for my lil' buddy, he's really sick today, and we were supposed to go to a party at the Center tonight.  (bummer) Thanks...Oh, and btw, look at the picture below, He looks JUST like his dad in this picture. He couldn't deny him, if he wanted to! :wink: And stay tuned, I have more holiday themes to come, if Stephen allows me to post anymore today...

Like Father-Like Son

This is my favorite type of photo! You know, the ones that you snap when they are unaware? This is one of my favorite photos of Stephen and his daddy. My husband, NASCAR fan from way back. It’s even rubbed off on me, after all of these years. It’s very difficult to not be a race fan in my family. My brother watched the races on TV and went to the races (before NASCAR was cool) All of my cousins love racing. I have a few cousins who race stockcars. I have even been caught at the dirt tracks, and got headaches from the fumes, chunks of red, Alabama clay in my hair and felt the dirt and grit in my teeth from getting so close and cheering for my cousins. Of course, we had to have a boy, and he had to follow in everyone else’s steps and he loves NASCAR! We pull for Dale Earnhardt Jr. Oh, the things we’ve collected of Dale Sr. and Dale Jr. #3 & #8..

Just look at‘em up there! Stephen, clapping his hands, pulling for D Jr. Daddy, holding Stephen close, anticipating that next turn… you can see it in their eyes. So glued to the TV {{Go, Dale! Go!}}Intense. Leaves you wondering-who won the race, when this picture was shot. I don’t know…I don’t even recall which race it was. The important thing to me, was capturing this moment. Father and Son, enjoying a sport together. My husband doesn’t talk about it much, but I’ve seen the look in his eyes when we drive by the ball field and he sees little boys Stephen’s age out there, playing & their fathers coaching. Being a MVP in his high school days, I can almost feel that void that he probably feels for his son, yet never talks about. But, then when I come across this picture, I realize they haven’t been cheated out of anything. There really is no void, unless you decide to dwell on it, which we’ve chosen not to anymore. That picture up there is a real-Father and Son moment. Just like any other. The way it should be. Never take anything for granted. Enjoy the simple things. These are lessons I’ve learned. Thank you Stephen, for letting me see life in a special way. I’ll never take moments like this photo for granted.

A couple of my favorite Christmastime recipes

“Mia, will you bring that cheese ball?” Recipe

This is probably the most popular cheese ball I’ve ever seen. Every party we’re invited to,  I don’t even ask, “what can I bring?” anymore. It’s always the following cheese ball. So, you will need the following if you want to make this. Be ready to be bombarded with requests everywhere you’re invited, for this one. In fact, they may invite you, just for the cheese ball. The original creator of this recipe was a dear client of mine, almost 20 years ago. I can’t take credit

2-8 oz blocks of cream cheese

6 oz grated cheddar (I use sharp, and grate it very fine)

1-4 oz can deviled ham

½ c chopped green onions

1 tsp garlic salt

1 tsp poppy seed

Mix thoroughly, you’ll need to get into it with your hands and mush it up really good. (I like to use disposable gloves for this part) shape into a ball and chill. Serve with your choice of crackers.

~~~~~~~~~~~~~~~

Also, we love these: 1-2-3 appetizers (easy, and great for Christmas breakfast!)

3 c bisquick (sp?) In fact, this recipe is on the box J

2 c grated, sharp cheddar cheese

1 lb sausage (mild or hot, whatever you like)

Just like you’re making the cheese ball, you have to get your hands into this and mash it together really well. Shape into balls (I use a melon ball scooper) Bake in a preheated 400° for about 15-20 min.

My daddy expects these on the table Christmas morning! Last year, I used turkey sausage, he and my husband both ate them anyway, but said, “don’t make those again.” They like venison sausage very much though. Ugh, barbarians!

Answers for Andrea's Friday five

:Andrea's Friday Five:

1. Do you enjoy the cold weather and snow for the holidays?

We only have Cold weather, not snow. And I only enjoy it at the holidays.

2. What is your ideal holiday celebration? How, where, with whom would you celebrate to make things perfect?
Anywhere with my family. A few years ago, my parents rented a chalet in the mountains, and we had our 1st white Christmas! It was cool to sit in the hot tub on the deck, and watch the big flakes coming down. Stephen loved it too. To make things perfect, would be if everyone is healthy.

3. Do you do have any holiday traditions?
It’s becoming a tradition to have Christmas at my brother’s house, bc there is more room, & Martha Stewart can’t hold a candle to my SIL’s decorating! We eat before opening gifts and ALWAYS watch the movie, “A Christmas Story” We know everyone’s line by heart. J

4. Do you do anything to help the needy?
Yes, bc we both have known how it feels to be needy, and we want to pay it forward. Our church donates to the Jimmy Hale mission, year around (shelter for homeless), our offerings go to that mission. (My husband takes an elderly gentleman, who lives across the street to the Dr. bc he has no car-I think that is sweet)

5. What one gift would you like for yourself?
Peace.

A few of our favorite charities

Obviously, we're big supporters of the Special Olympics. We've already donated $10 (read:SloMo's pounds for a cause) I have a list below of a few of our other favorite charities and links.

After almost 11 years, we still have no concrete diagnosis for Stephen. We do know, however that being born three months premature, he probably has Cerebral Palsy. He was diagnosed with that at age 2, then the neurologist wanted to do genetic testing because of his rare heart defect. Other than the heart defect, Stephen has strong similarities with Angelman Syndrome, although all of the tests for this has been normal to date. Of course, who knows what kind of tests will be available in the years to come. As his mother, and knowing he was blue at birth and was unable to breathe on his own, I know in my heart that he suffered  brain damage, and I can see atrophy on the images they took of his brain. I have very little medical background,  but enough to know that he has brain damage which occurred during or shortly after his birth.

http://www.jpkf.org/mrsites.html
 link above taken from the Joseph P. Kennedy Jr. foundation website, below

http://www.jpkf.org/

Special Olympics:http://www.soshopping.com/resource/media/sliders/soad01_slider.html

 

Angelman syndrome:http://www.angelman.org/

United Cerebral Palsyhttp://www.ucp.org/

Go to my other journal (link on the left sidebar) and read my, the gift goes on story, about how good deeds always come back around, and sometimes sooner than you think. I'll continue with some Christmas cheer, and other pictures and stories about our family soon! Plus, I have found so many Journals that are really getting me into the Christmas spirit, I'll list them... Come back soon. Bring some hot cocoa, okay?

 

First 24 Hours

The quality of these photos are not very sharp bc there was no flash-photography allowed in the NICU. I'm quite sure you all know the story of Stephen's birth. But for more details and photos, etc.. you can read his full story on his webpage, which I have not updated in 2 years. But.. the story of course, is the same.

The 1st picture above, was the first time, I ever saw his face. I wish the staff had prepared me for the tubes that were going in and out of him.

The 2nd photo was snapped moments later, the first time I was allowed to touch him. You can see how careful I was, I didn't want to break him. He weighed 3 pounds, 5 ounces. He was almost 24 hrs.old before they let my friend wheel me to the NICU to see him. By the way, Susy, did I ever thank you for being there, and for taking these first photos? Thank you, they are priceless to me.

Before this moment, I had only caught a glimpse of Stephen. He was blue and his cry sounded like a new born kitten, crying for it's mama. I didn't understand why they wouldn't allow me to see him for 24 hrs. Looking back, and knowing that the frst 72 hrs were the most critical, I now understand. I don't really know how to describe the following weeks, because everything was so uncertain. On New Year's Eve, he was diagnosed with a congenital heart condition (see his website) For the 1st few weeks, I was afraid to touch him, hold him, or even look at him for too long. I didn't want to get attached and then have him taken away from me. That shelter I built around my heart was useless, I already loved him and the attachment began when I saw the + sign on the home pregnancy test. ... Stay tuned for more Stephen stories! He was born on 12/26/92 so this time of year drags a lot of emotions out of me.

Entry # one

Hello friends!  I do hope that I haven't created too much confusion with the "new" journal and all. It's still me, the same old "Aims" (My nickname, which is my first name, "Mia" spelled backwards) Now you all know why... aims... In case you were wondering...

I am looking forward to this new journal. Don't expect me to be that different. Nothing's changed except for my address.  Stephen and I decided to keep daily gratitudes and attitudes up and running, and hope to make an entry every now and then. We just moved down the block a little. How do you like our new place? I know, I have some decorating to do ... ::wink::

Well, Stephen's in bed, and Daddy's in there putting up the tree w/out me.. so I better run! Thanks for stopping by and keep coming by!