EEG's and fear.

Next Friday. 9 am. Why, oh why, oh WHY does this terrify me? It won't hurt him, we wont be staying in the hospital, just there a couple of hours. But. I hate the word "but"....we hear it too often. Same thing with the world "complicated" .... ugh. Ever since our appointment with the neurosurgeon then the developmental pediatrician I have been in a constant state of heart attack. I spend lots of time with my sunglasses on....basically keep the radio off in the van, most of the songs that I like now make me cry....and sit here watching tv....sometimes I write blogs then delete them because WOW I am a crazy, emotional, irrational person lately! It boils down to this....fear. All I want is for my children to out live me. We've already lost a baby. That was the most helpless, horrible....lonely part of my life. And I never even held that child! I don't even want to imagine what its like to bury a child.... This "stuff" that Adam goes through forces us to. I guess its the fear of the unknown. Or maybe the fear of the known. Probably just fear.  I believe in God. I trust God. I love God. But. ...... I wish I could be like that blue eyed string bean of a boy. He walks into these hospitals and doctors offices with a smile on his face, and no matter what the news is, he walks out of those hospitals and doctors offices with a smile....He is the picture of strength. THAT is why he's my super hero.....

Martina McBride - God's Will

Selah - I Will Carry You (Audrey's Song)

Uncle Kracker - Smile

Adam's song....Ok well its by Uncle Kracker... "Smile"

You're better then the best

I´m lucky just to linger in your life

Cooler then the flip side of my pillow that´s right

Completely unaware

Nothing can compare to where you send me

Lets me know that it´s ok yeah it´s ok

And the moments when my good times start to fade

You make me smile like the sun

Fall out of bed

Sing like a bird

Dizzy in my head

Spin like a record

Crazy on a Sunday night

You make me dance like a fool

Forget how to breathe

Shine like gold

Buzz like a bee

Just the thought of you can drive me wild

Ohh you make me smile

Even when you´re gone

Somehow you come along

Just like a flower poking through the sidewalk crack and just like that

You steal away the rain and just like that

You make me smile like the sun

Fall out of

bed sing like bird

Dizzy in my head spin like a record

Crazy on a Sunday night

You make me dance like a fool

Forget how to breathe

Shine like gold

buzz like a bee

Just the thought of you can drive me wild

Ohh you make me smile

Don´t know how I lived without you

Cuz everytime that I get around you

I see the best of me inside your eyes

You make me smile

You make me dance like a fool

Forget how to breathe

Shine like gold

buzz like a bee

Just the thought of you can drive me wild

You make me smile like the sun

Fall out of bed

sing like bird

Dizzy in my head

spin like a record

Crazy on a Sunday night

You make me dance like a fool

Forget how to breathe

Shine like gold

buzz like a bee

Just the thought of you can drive me wild

Ohh you make me smile

Ohh you make me smile

Ohh you make me smile

Just pray.

Bad case of the what-ifs.....anything you can think what if about has been thought of already. Nothing different or any worse going on...just normal every day stuff for us. Just pray.

I'm going on a journey

I Am Going On A Journey

I am going on a journey,
Won't you come along?
I need someone to help me.
A person big and strong.

I'm walking on my journey
But my feet are very small.
Can you stand beside me,
And catch me if I fall?

At times when I can't keep up
With life and all its fears,
Can you put me on your shoulders
And wipe away the tears?

When the steps I take are not big enough
And it's hard for me to grow
I know I can depend on you
To let me take it slow.

I'm going on a journey,
Please, won't you walk with me?
I need someone who understands
The place where I should be.

I promise when the road is tough
And you want to turn back home.
I will hold your hand real tight,
So you won't feel so alone.

I'm going on a journey
I don't know where it ends,
But if we walk together,
We can always be best friends.

And when the journey's over
And we find where we should be.
I know that you will be so glad,
You took this path with me.

I'm going on a journey,
Please, won't you come along?
I need someone to guide me
A parent—big & strong.

Written by Sally Meyer

Blessed are those.

Blessed Are Those

I. Blessed are those who stop and listen to my chatter. You may not understand me; but I love when people talk to me, for I long for companionship, too.

II. Blessed are those who take my hand and walk with me when the path is rough, for I easily stumble and grow weary. But thank you, too, for letting me walk alone when the path is smooth, for I must learn independence.

III. Blessed are those who take the time to tell me about special happenings, for unless you make special effort to inform me, I remain ignorant.

IV. Blessed are those who wait for me. I may be slow, but I appreciate your patience.

V. Blessed are those who are not ashamed to be seen in public with me, for I did not choose to be born thus. It could have been you as well.

VI. Blessed are those who do not pity me, for I don't want pity. All I want is understanding and respect for what I have learned as well.

VII. Blessed are those who notice my accomplishments, small as they may seem to you. I must work long and hard to learn many of the things you take for granted.

VIII. Blessed are those who include me in their games, even though I may not understand the rules, I still like to be included in your activities.

IX. Blessed are those who think of me as a person who loves, and hurts, and feels joy and pain just like you do, for in that respect I am normal.

Author Unknown

Looooonnnng Update

Hello friends! Lots has been going on lately. We bought our first house (yay!!), new van (yay yay!) and Adam is going to a small private school (thanks to special needs scholarship) and Harold and Emily are homeschooling (triple yay!!) Since the last blog Adams has been diagnosed with mild Cerebral Palsy. bleh. What is this 8? or 9 different "conditions"? We had another MRI due to back pain and it showed slight pinching, a mass in A's skull and more deformed vertebrae. Had to wait 3 months for a CT scan to check "progression". SO glad we have a good neuro-surgeon!! The CT scan was...well...revealing. I wish I could say he is healed. Life as we know it has changed for the better, and my child has become "whole". But. NO. God seems to tell me no....a lot. I'm not mad. I don't hate him. I just flat out do.not.understand. Adams' spinal cord isn't being pinched. The bottom part of his skull is slanted forward, towards his face. That's part of the mass in his skull, for some reason his body figured he needed more of 'something' back there. It also means that the hole that holds the "connections" between the brain and spinal cord is compromised. The cord is resting on his skull. Fun stuff. I'm no brain surgeon but that can't be good. What makes it even scarier is that the front of the vertebrae (i think it's C-1) is just a calcium depost. Not quite bone. and only one small spot. TRUST ME- it is NEVER good to see a SURGEON who you think has GOT to have seen it all...deflate. He let out the biggest sigh while he was on the phone with whoever was reading the CT scan. About the 3rd "this is a difficult case..and yes, i understand" coming from his mouth to whoever was on the other end, let me tell you .... I wanted to snatch my baby up and run....get in the van and leave....never ever go back. I don't know if it was strength or fear that made me sit in that chair. I had to sit through the decision making. No surgery, not because he doesn't need it. But because he's difficult. He's young. Hopefully the calcium will turn to bone, and fuse with the bone under it. Back in 6 months for X-rays. 50% chance of major, major, did he mention how major this surgery was enough? surgery....any time we go he may say its time. He won't do it until its absolutely necessary because he basically has 1 shot to get it right. Adam has 1 chance to heal right. Until then, no football (like my kid with autism, cp, xxy, and severe hearing loss is going to be playing football anyway!) , any contact (or potentially contact) sports and absolutely nothing that can put pressure on his spine....THAT is a tall order! SO SO SO SO SO glad we got enough donations to buy his car seat....We are ETERNALLY grateful to our friends and family for this. Now we get to be scared to death until Feb. Pray pray pray that this turns to bone and fuses naturally....Pray that we get enough donations to order his service dog....just pray. I need to find the joy that we had almost 8 years ago. I'm tired of the tears, I'm tired of the fear....I'm just tired tonight.... I'm going to add some poems and stuff that's getting me through this time.

Footprints

One night a man had a dream. He dreamed He was walking along the beach with the LORD. Across the sky flashed scenes from His life. For each scene He noticed two sets of footprints in the sand. One belonging to Him and the other to the LORD.

When the last scene of His life flashed before Him, he looked back at the footprints in the sand. He noticed that many times along the path of His life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.

This really bothered Him and He questioned the LORD about it. LORD you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me.

The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you. ~unknown

The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.
Horace Bushnell

apology and update :).

OK so I stink at blogging! I am going to promise again to blog more ..especially since SO much has happened since the last time! It stinks to have to type super long entries LOL! Anyway...wow...August was the last time and now it is March?! The year went by SUPER fast for us. OK....so they put Adam on hospital/home bound until his appointment with the neurologist....Seriously I am SO glad he doesn't go to that school anymore! The neurologist looked at all of Adams scans and since the spinal cord is NOT affected by the malformed bone right now he's putting his scalpel away...we have to go back every so often for follow ups but no surgery, no halo, NOTHING for at least a year :) Adams didn't end up with a cleft but his neck is wider than normal with his palate resting on the adenoids so as he grows and they shrink more than likely the doctors at the craniofacial clinic @ CHOA will have to put fake ones back there... He had the check up for this last month and so far so good...Hopefully it will never come to pass. God has had his hand on this little boy since day one and I don't think he's stopping now :) Adam had 4 teeth pulled due to over crowding a couple of weeks ago and is recovering very well from that..This surgery was step one to braces that he'll get next year. We saw the developmental pediatrician (Dr. Rubin) at Huges Spalding ( another CHOA) and unfortunately (or fortunately..its all about perspective!) he was diagnosed with Autism PDD-NOS.... I am coming to terms with it slowly but surely...The "A" word has always been the elephant in the room that nobody paid any attention to. The RN came in and talked to me about some of the things he does (the road drawing and emotional stuff) and brought up the "A" word...She said that Dr. Rubin and a couple other people wanted to talk to me about it and left the room...I had my mini breakdown in the bathroom. Took a few deep breaths and sat back down in my chair. I faced them as bravely as I could for Adam. I didn't cry in front of them. I don't know why but that's my thing...never let them see you cry...i don't want anyone to feel sorry for Adam or for us. This is the stack of cards that we were dealt...and that Adam was dealt. I don't know why....i don't know how and it seems like it never ends. one day we will know the reason.. Or maybe we wont... who knows? I do know that my life has been changed dramatically by that little string bean. My silly, happy, inspirational little boy....I also know that he has changed other people's lives. It always floors me when people that I barely even know tell me how he has changed them for the better. It warms my heart and is confirmation that all of these trials he goes through...the doctors, the pricks and prods...every bit of it is for a reason...My baby has a purpose! If we can keep things in perspective and look at the bigger picture...the miracle that he is even here...the even bigger miracle that he is healthy we will be alright!

Doctoring and all :P

So A-man is on the list for the Marcus Institute....There are 170 families ahead of us. (Really? Wow....) So it will probably be about a year before he is seen there. We'll have to work out school, babysitters, etc when the time comes..I'm working on crossing bridges when we get to them instead of worrying myself into a tizzy....I'll let u know when that happens LOL! July 16Th we got some bad news about Adam. The bones in his cranial/cervical junction are all compressed with the very top bone looking malformed. He will go see the neurosurgeon in August to see exactly how to handle this as it may mean that part of his brain is growing into the hole in that very top bone, which can make his spinal cord and brain fight for room. Best case scenario is that he will have physical therapy and his neck will be stable enough to do so, physical therapy will increase his range of motion so he can do simple things like turn his head from side to side without using his shoulders and he will be able to button his own pants and tie his own shoes :) Best case scenario for an unstable neck is that our angel will have a halo....for 8-12 weeks and depending on what severity of traction they have to use he'll either be in the hospital for 1 week and at home for the remainder or at the hospital for the entire time....Mid case scenario is that he'll have to have a rod and fusion surgery to stabilize his neck and that will mean a couple weeks in the hospital and recovery for idk how long at home....worst case scenario is basically brain surgery, rod and fusion surgery and halo....which means long periods in the hospital and a long recovery at home....Praying for the best....Preparing for the worst. That is the only way to survive this type of thing I think. Or it works for us...whichever. Right now he can't do anything where he might twist his neck...so PE and recess are out at school. We had a meeting on Friday to draw up his 504 plan. I'm beginning to not like the principal more than I didn't like her last year. She kind of wanted us to withdraw him without even being able to get services at home until all this is over with....Sorry but only being not able to do 2 things out of the entire day doesn't constitute us withdrawing him. They'll have to do what they do for other health impaired children and find something for him to do instead. I'm starting to have a deep need for Adam to have normalcy as much as possible in his little life. Every tid bit of "normal" we have is special...School is his "thing" he LOVES it and I will fight how ever long I have to to keep him there. He needs it, it makes him happy.... And my job as a parent is to fight for my children. So I'll go to meetings, I'll send what i need to send, I'll sign what i need to....it doesn't matter. One thing they have got to realize is that I am not weak. I won't stop fighting for him until there's nothing left to fight for (everyone does what they need to for him) or I decide that its enough. Anyway we're getting ready for church right now so I'll stop blogging for now.... Keep us in your prayers, Lord knows we need them! Thank you to all who send a positive thought and prayers our way...we feel them and draw strength from them on days when we have none left.... LOVE!

Update...

Thanks Kristi for reminding me what the addy was for this blog!! SO anyway Hows about an update?! NOTE: THIS IS RANDOM!!!!

Ok SO A-man is done with school for the summer and starts FIRST grade on July 30th!! He and I are SUPER excited! We have a doctors appointment just about every week this month. 2 the week of the 14th :) I can't wait to go to the Marcus Institute...sounds like a very interesting place that is devoted to helping children that others used to write off :) I am SO blessed that nobody has written my child off as "unhelp-able" It has taken 6 years but now he has a team of doctors who, along with his family, are devoted to making him the absolute BEST he can be. We don't expect overnight improvement. Its going to be a (mostly) up hill battle..He will never totally be "normal" BUT I believe that he WILL be an amazing, wonderful, self supporting, person who thru his trials and tribulations will learn something that many of us do not get the PRIVILEGE to learn....I don't know what that is yet...but its not my lesson ..He has already taught me so much..I thought I knew everything...but I was wrong! (see I can admit to being wrong from time to time lol) Little man is trying this best to teach me patience... imagine a 6 year old with a 2 year olds impulse to do strange, often destructive things...I'm trying to learn to be patient with him and my other kids and I have come a long way..but I'm not perfect...its gonna take a while...lol. My house is messy 90% of the time even though I clean constantly throughout the day...I just spent 20 minutes picking up a billion straws that he decided he needed to strew all over the house. Why? Who knows. He knows..but he wont let me in on his secrets lol ! There are days when I absolutely think he really has an agenda..That is to drive me absolutely bonkers (like in the fetal position rocking in the corner bonkers) but then he smiles, or laughs, or hugs and kisses me and I realize that he is just a very very different person than I am. He sees things differently than I do. I just over the past year have realized that he sees BEAUTY in mundane things. he can look at a pile of sticks on the ground and make something out of them that we never thought of... While doing tasks that are every day for us, he's bored. He cant concentrate on learning to read, or listening to a story, even watching most TV shows...but give him a pile of sticks (or in this case a new pack of straws) and he concentrates, he makes something out of them.... If you watch him you can see it in his eyes.... you can almost hear that wheel turning in his head :) His teachers, doctors, friends, family and I have to find a way to unlock him.. we need to find a way that will let us into his world.. Thank God as he gets older he's letting us in a little more...I'm sure the neighbors think the weirdos down the street need to find something better to do than make letters and shapes out of sticks, or count the blades of grass in the front yard..but its ok...I regret this but I spent years...yes YEARS embarrassed of my child. That was a hard sentence to type... I wasn't embarrassed of how he looked or walked or anything like that....I just wished that when we were out of the house he might wait until we were in an empty aisle in Wal-Mart to ask me a question or rearrange things on the shelf. I can't handle the pity stares, or even dirty looks... I know what the people in the store were thinking... (hey! i used to be one of those people!) I'll go over some peoples thoughts at Wal-Mart last week.. 1)"Man shes got a lot of kids to be so young!", 2)"He looks different, I know he's not Down's syndrome but....something is definitely different", 3)"Bless his heart!" ( Come on! We all know what that means!) 4)"She really needs to discipline that older boy for getting all the stuff mixed up on the shelf" 5) "what did she do to make that poor little boy cry like that!?" (well ya wanted me to discipline him and now I'm the devil himself for leaning down and whispering in his ear for him to stop?!) OR....this is what I love: "....................." I love the blank stare....The kid has hearing aids and glasses...I mean REALLY it's not like he's got a hand growing out of the top of his head! OR you're just jealous that you couldn't get YOUR hearing aids in neon blue! I bet that's what it is....Younger people , thank God, aren't as big "stare-ers" as older people. I love older people but really....y'all taught me that staring is rude...but you can do it? Anyway it was just easier not to take him ...or put him in the cart so he couldn't reach anything and shh him very quietly the whole time we were in the store. NOW ..go to the store with me...we rearrange LOTS of things (I make sure to put them back)....we yell songs walking down the aisles if Adam wants to sing...the kids get free cookies that HE gets to ask for.... We wear flip flops on the wrong feet in the middle of the mall... and now I stare back...then I hold my son's hand....and smile....funny thing is the nice people smile back and I know they were just curious....the mean people back down and turn their heads or walk off and mumble under their breaths.....most of the time as I say "Have a nice day!" to them.

This blog totally didn't go the way I planned it LOL! But Anyway now that I can log in I'll be able to blog more often! We are still waiting on the Noonan's testing results so keep your fingers crossed, prayers prayed, all that jazz....Not expecting it to be negative but just praying for answers.....that's all I care about anymore...I just want answers..

A little background info

Our 5 year old son was born on April 19, 2003 5 days past his due date :) My water broke in the middle of the night and we had a beautiful baby boy 39 1/2 hours later...yes 39....hours...AFTER my water broke....i know..i know. OK so anyway we enjoyed our stay at the hospital for 4 days. Everyone came to see Adam and even the nurses doted over him. The next thing we know it's time to go home!! We stopped by hooters across the street to get some chicken (don't go there right after you have had a baby...trust me on this) then went to my hubby's parent's house so they could see their new grandson outside of the hospital! The next few days were happy, tiring, and stressful all at the same time... I had started out breastfeeding but decided that Adam didnt like it because he always cried so he turned into a formula fed baby (and slept and slept....still to this day if you feed him and get him warm he's fast asleep). A few weeks later (or was it over a month? I can't remember the dates I was too tired!) The doctor told me to bring the baby in he had to tell me something. IMMEDIATELY we went into panic mode. All kinds of thoughts ran through my head... We all knew something wasnt right..he was kind of (for lack of a better word) floppy...like he couldn't support his neck like most newborns can or anything....if you laid him down on the bed after a bath he stiffened his arms and legs out so anyway...off to the doctor we go...We were blessed to have Dr. Young as our pediatrician who I will reccommend to anyone in the cartersville/acworth area. Dr Young tells us that our son has XXY. It does NOT mean he is part female as far as physically.So he refers us to a genetic counselor, performs an ekg, and all that good stuff. Babies Cant Wait gets involved immediately and they are a GOD SEND ....they helped adam so much through the first 3 years of his life. We take Adam to the Heath dept for his hearing test...he fails....take him back a couple of months later, fails again...they end up having to do an ABR hearing test (google it...i dont have time to explain it lol) and find he has moderate/severe loss in one ear and borderline normal hearing in the other. around age 2 he gets his hearing aids finally!! at age 3 he started stars pre k in cartersville... I went round and round with that school until he ended up only going 2 days a week for 1/2 a day and he got his therapies outside of the school system on the other 3 days of the week. For the first 3-4 years of his life he recieved Occupational, Speech, and Physical therapy. I loved his therapists, every single one of them, but did not like the fact that they weren't optimistic. You've got to realize something about Adam....he's going to suprise you! They thought he wouldnt crawl until age 2....crawled at 13 months old ..it was my mother's day present that year :). They thought he wouldnt walk until age 3. He was walking at 18 months old. They thought he'd have to be held back in Pre-k.. He is a kindergartener right now ....right on time. We may hold him back this year but not because of learning concerns but because he's pretty immature. Anyway children are resilient ADAM is special. Not because he needs special attention, or special help...but because he is a gift from God! He isn't perfect. Some people would say that he isnt 'whole' but he has taught us so much in his 5 short years that have taken us a lifetime to learn.

My first blog about my life with a special needs son ;)

Ok so I'm not really good at blogging yet...maybe someone can help me in that department. This is my first blog about raising my son, Adams, who has special needs. I started this blog with the intention of raising awareness for XXY (Klinefelter's Syndrome) which my son has and also so that parents, children, family and friends can kind of see into our lives and maybe someone will get some understanding on what life is like for us. I welcome everyone's comments... and honestly if you feel like a blog is "about" you ...well maybe you should think back on things...not make a big deal about it but keep it in the back of your mind to watch your words and actions when it comes to families that have children with special needs.