Thursday, December 23, 2010

The forgotten post

I can. NOT . Believe I forgot to post this!!!!!!! NO C-COLLAR!!!!!!! Adam had his 6 week follow up , after x-rays on the 15th of this month. "The fusion is solid!" The best words I've ever heard. Hands down. Adam is a wild man....back to normal.. He even said to me today: "Mom!!! I'm not sad anymore!!!" ..... Hallelujah. We don't have to walk into that neurosurgery office for another 4 months. Hearing aids will be ready the 28th, eye doctor the 30th and speech pathologist/dentist/orthodontist next month along with C.P. clinic. Baby's gettin some new shoes! Hopefully his back and legs will get to feeling even better and Mama and Daddy won't have to buy shoes so often because he wears holes in the right heel. Merry Christmas!!!!!!! May ALL your dreams come true :)

Tuesday, December 21, 2010

a little about the other littles ;)

Ok so for the first time since my mom died, I'm really into Christmas this year. I've decorated :) even the outside of the house!! Nothing amazing is going to happen, the kids won't wake up to a new bike or swing set....There isn't a new Lexus in our living room....but.... Everyone that is supposed to be here IS here. It has taken me a long time to come to that realization. I miss my mom, Keith's mom, Aunt Laura, Evie and our angel, our little precious one that we never got a Christmas with. OF COURSE I'd love for them to be here and have a wonderful, cozy, post card Christmas. That wasn't the hand of cards we were dealt though. Sometimes I think they can see us and know what's going on with us. To probably does look like a postcard. Or, maybe it looks like when you're driving around to look at Christmas lights and you see that one house with the curtains open. You can see the lights on the tree, the kids playing with their new can almost smell the dinner that took all day to cook. It warms the soul for me to see that. Not that I'm the creepy stalker type, but you know... lol. These past few months have really made a change in me. I do still fuss at the kids, they still get in trouble...but every time I am SO thankful. We have four GORGEOUS kids who have never gone without. They have all had their struggles and all persevered. We've almost lost the two boys but every night they are tucked in with their matchbox cars and whatever else they sneak into bed. Harold was born with a heart rate below 50. Cord tied around his neck at least twice. Nothing but sheer determination on both our parts, my husband's prayers and strength, and the skill of a wonderful midwife brought him in this world.  Ellie is the light at probably the longest, darkest tunnel Keith and I have ever traveled down. Now our world is filled with fairies, princesses, and everything PINK! Emily is the strongest 13 year old I've ever met. From the first time I met her she's made my heart melt. Through everything she's been right there with us. She's down to earth, genuine, and just down right beautiful inside and out. She knows what she wants in life and is willing to do anything to reach her goals. We live for their smiles and kisses.. I hope that they know they are the best gifts we've ever gotten and we are truly blessed to have them in our lives. There isn't anything  grand going on here on Christmas day, but our hearts are bursting, in the best way imaginable :)

Sunday, December 12, 2010

Life isn't fair, glimmers of hope, and Christmas.

Life. The older I get the more I don't understand. I thought it was supposed to be the other way around? Anyway. Adam had two appointments this week. The first was at the audiologist he's seen for oh, 7 years or so :P. We love Jill. We trust Jill. Jill is awesome. But, we can't see Jill any more for anything other than ordering hearing aids, and getting them programmed, oh and ordering ear molds. Insurance red-tape has taken yet another trusted specialist out of our life. I never imagined seeing all of this. Anyway... We met a new E.N.T. yesterday and he's pretty cool, Adam liked him and trusted him. OH and got clearance for new hearing aids!! Congratulations, your kid is still severely hard of hearing!! Woo HOO!!! (sorry for the sarcasm) 
My kid is awesomesauce.... He picked out zebra striped hearing aids with red and black swirled ear molds. Yes, we get excited about ear molds! Yes, I let my children's personalities flow.... I believe that our personalities are "ours" before we're born, God made us the way we are. Not that we can't improve, but we should never ever conform to someone else's idea of what's "right" or "normal".
So ...we get home from all that awesomeness and for some reason I decide to start talking to Adam about his Make-A-Wish. Bad idea. How on earth can something that is supposed to be so..... um??....Happy? Spin you downwards so fast??? Oh. Yeah. The whole life threatening illness thing. Anyways, he wants to go on a trip. Don't know where yet, but that's the direction he's headed. Maybe we'll swing south and visit with Mickey and Shamu for a while.... Swim with dolphins in Australia, Cruise on over to the bahamas....or maybe just keep to ourselves in a little beach cottage. Whatever he decides he'd like to do I stand behind him 150%. its his time to shine, our time to forget about all of this mess, and just enjoy. Unfortunately with that comes the realization that there may come a day where our lil man doesn't fill our house with sunshine, we don't hear those awesome tear rolling belly laughs of his, and we may not get to see that twinkle in his eye that he's had since I don't even know when. THAT is why we are determined to make his life the best we can make it. Our children know that life is short, and unfair and they've known this forever. They get scared, heck....Keith and I get scared. But...we can't live like that. We have hope. We have had hope when nobody else has. We've been told to just take him home and enjoy him...Um no. We've had hope through 1,2, 3, 5, 6,8 and 9 diagnoses. All different. All heartbreaking. All filled with HOPE for his future. This Christmas is the best one yet. He's here. God has heard our prayers and answered them. We have more time bought for us through the hands and expertise of amazing surgeons, who took the time to listen to a crazy mom..... and that small still voice that wouldn't quit telling us that there was more going on...Right now, all is well in our world as 3 little snoring children are all snug in their beds. Thank you , God, for sending your son. THANK YOU so much for answering our prayers for our son.

Sunday, November 7, 2010

We're home....About the surgery

Tuesday we got up early and drove down to Children's for Adams' surgery. It was a quiet drive, I think that Keith, Emily and I were all in our own little worlds. We were able to play with him a little bit and love on him before they called us back to the pre-op room. The nurse was very nice, and the anesthesiologist. Dr. Reisner came in to make sure we understood what was happening after surgery and to get my cell phone number so he could have the nurse call with updates. He said the surgery would be around 5 hours. They gave Adam his Versed to keep him calm so they could put him to sleep easily and there wouldn't be any separation anxiety. A few minutes later they wheeled our hearts out on that stretcher. I watched him until I couldn't see him any more. We were lucky to have people that care about us and Adams there. Grandpa, Papa, Becky, Ms. Jean, Mr. John, and the Repasky's were there. I gotta tell you..... If you have a child, never,ever, EVER be away from them for so long they ask you who you are when you say hello to them. That is inexcusable. Adams' biological father never even said "I love you" during the two days they were here to his son, and hasn't called to see if he's OK or even at home. But enough about that. About every hour and a half the nurse would call to give us updates and after what seemed like years the part of the surgery that Dr. Reisner did was over. He came out and said that every thing went as expected and Adam tolerated it well. Then he had to go back into the operating room to help Dr. Wruble with the fusion part. It is humbling to see two well known doctors come out of the back sweating and looking exhausted after working on YOUR child. Dr. Wruble told us that basically Adams has been walking around all this time internally decapitated. The only thing holding his head onto his body was scar tissue. I was shocked. We all were shocked. How in the world can a child walk around like this and nobody realize it...He shouldn't have made it this far. Then the light bulb turned on. God. God has always had his hand on this little boy and he's not stopping now. This whole time I've been praying for God to show me that he's in this. That he knows what he's doing and that there is a plan. Dr. Riski first found the compression in just a normal every day x-ray. Keith and I were determined to make Dr. Reisner SEE that there was something more going on, we felt it in our hearts and it was a feeling that couldn't be relieved no matter how many scans, x-rays, and visits we had. Dr. Reisner did the last set of x-rays to just double check because Adams had been falling down more often. Thank God for good gut feelings on the doc's  part. That guy is a smart, smart man. He knows his limits. Dr. Wruble is amazing and I'm glad that he took the time to consult with Dr. R. and agreed to help with the surgery.  I can see now that all things go according to HIS plan. I laughed when Dr. Reisner said they were taking part of Adams rib....but that's exactly what I asked for (God showed me right there he has a purpose). I was afraid of Adams being in a HALO..well Dr. Wruble said the fusion was so solid he would just have a C-Collar. (God was there too) I dreaded seeing my baby boy on a ventilator.. Adams did so well they weaned him off of it in the recovery room. (God) Day 4 after surgery Adams had NO pain medicine and came home.  We were supposed to be in the hospital at least 5-7 days but there was nothing they were doing that couldn't be done at home. So here we are. (God)...... Of course there were bumps in the road, needing oxygen longer than expected, no appetite, and just over all being sad on Adams' part. But he's OK now. I got my buggie smiles back! We are all home, and all happy. Physical therapy starts soon and I'm sure he'll get annoyed with the collar sooner than later. We'll work through those things as they come, as we have always done. But right now it is a lazy Sunday morning spending time together and thanking God for our miracle. The little boy who has beat all odds. And there is a reason for it...just watch. You'll see it too!

Thursday, October 28, 2010

Auto pilot.

Smile for the kids, talk about meaningless things, clean the house, walk the dog, wash clothes, take Adam to school, cook dinner, rinse, repeat. I guess I'm officially on auto-pilot. If this part of our life was a movie, I'd turn it off right now and take it back to the rental place. Or change the channel. I always knew life isn't cookie cutter. My life never has been cookie cutter, and that has prepared me -some what- for raising Adam. I work pretty well under pressure, chaos doesn't bother me. And, unfortunately, I've learned that when everything is quiet, and I'm alone, reality hits. Its nothing against anyone, I'm just private in my hurts and fears most of the time. Blogging is the first time I've let all this out and it really is therapeutic.
   Adams legs have been hurting him the past few days, he can't take anything for it because of whatever reason they don't want you taking pain meds when you're about to have surgery, so please keep him in your prayers. Surgery start time is 10 am on Tues.

Wednesday, October 20, 2010

Surgery date, and info

Surgery date is November 2nd .... start time is 10 a.m. Dr. Reisner said he is going to try to do the C-collar instead of the HALO device so I'm happy about that. Kind of. Just means that my job will be even harder on keeping him safe until the bone graph takes and the fusion heals. The thought of my baby's chest being open, a part of a rib taken out and then his neck and skull, oh that baby's neck and skull has always worried me. Right now I'm trying to keep my eyes on coming home and how much of a weight will be lifted when he's all healed up.
 There are times when this doesn't work and I find myself holding my breath. Lord, I don't know how I'm going to do this. My son, my baby, this sweet little soul who has always been wise beyond his years....He's never done anything to anyone. I can't and don't want to imagine life without him, yet we have to have a "plan" in case something goes wrong. When I heard his sweet little cry the day before easter 7 years ago I never imagined any of this.
Don't get me wrong, I wouldn't trade a day without him for a day with a different "healthy" kid. But when you have a child who has special needs, you do grieve, you do suffer a loss, yes your child is still with you but your hopes and dreams are still shattered to a certain extent. This surgery for Adam seals the deal. He'll never be catcher , or any other position on a baseball team, forget football, soccer, hockey, anything can hurt him. The hearing was obvious at birth. That was enough.  The genetic issues, was a little more than enough. Autism reared its ugly head, I have to admit that was unreal. Then Cerebral Palsy joined the party....the only thing I thought at that point was SERIOUSLY?!? and NOW. This. Wow. My life has turned into a lifetime movie. My child is an original. There has been and never will be another child like him. A part of me says "thank GOD!"  Another part struggles with knowing he'll never know a child who is his by blood. Anyway, how's that for ADD?
 Back to surgery. Please pray for him. Please pray for us....please pray for me, pray for God to hold me up when they wheel him away. He's got 2 grandmas and a baby brother or sister up in heaven and I pray that they hold his hand when I can't. I pray that God gives him the sweetest of dreams while the surgery is being done, and afterwards recovery is a breeze, pain will be minimal, and there won't be any drama.  Hopefully November 2, 2010 will be the first day of the rest of his life, a step forward. I hope he takes off running too!

Saturday, October 16, 2010

Surgery update

Surgery will either be on this coming up Tuesday , Or next Tuesday, as it looks right now. Dr Reisner said that Dr. Wruble will be the one doing the fusion part, he's supposed to be the best one to do it. They will have to cut open his chest to take part of his rib to form a bone graph, then they will do the rest of the surgery. He said it will be a very long surgery and to expect Adam to be in ICU for a time...I'm not sure how long that is, but I'm guessing more than a day. He said he asked Dr.Wruble if there was any possible way we could wait and he said no, he needs it done now. So that's where we are right now. We are trying to make this weekend a relaxing one doing things he likes to do. Prayers are appreciated, thanks so much for caring about our little boy.

Friday, October 15, 2010

A short one.

In order to keep my personal sanity, I'm keeping this one short.
Adams will have surgery before the end of the year. Considering it's the middle of October, it won't be long now. We very well could be spending Halloween, Thanksgiving, or Christmas sitting by our little boy's bedside. His 3 favorite holidays, other than his birthday of course! He thinks its a holiday anyway LOL! The girls have one recital this month, and one around Christmas. Ellie's 4th birthday is December 29th. Keith and Emily's birthdays are both in Feb. No matter what, for one of the kids, or all of the kids, this is just going to stink.  My heart just isn't in the  holiday season this year. We bought 2 pumpkins, haven't made them into jack-o-lanterns yet. Costumes are bought. No plans for  Thanksgiving, or Christmas. We haven't even looked at trees or gifts. Anyway...for the scientific ones.
C1 and C2 both slip. The vertibrae in your cervical spine are supposed to move about 5 mm when you look up and down. Looking up Adam's move 14mm when looking down 13mm. Normally, the doctor would go in and fuse the two together, and possibly a plate and screws on the back of the skull for C1 and a screw at C3. There is one problem when it comes to that for Adam. The base of his skull has grown abnormally, growing into the area where the spinal cord is. As Adam grows, as with all bones, this will grow too. We all know what happens when something damages the spinal cord. So, in order to avoid that, they have to cut it out. This is all deep inside the body, none of these bones can be felt. So Dr. Reisner is going to meet with the other doctors in his office and let us know the exact game plan and hopefully the surgery will be scheduled as well. If  I don't hear from him Monday by 12 noon, I'm to call him. This is all very meticulous work and we've been reminded over and over again how major this is. We could lose him, he could end up paralyzed, anything could happen. I have a hard time with this, of course. Little man has been through so much, I'm sure he'll come through this....God always has great things planned for us, I'm going to trust in that for Adam too.

Wednesday, October 6, 2010

well this blog ended up all over the place.

That's what this feels like. From the time I was 3 I wanted to be a mommy. If you asked me what I wanted dolls...and lots of them...My sister and I had LOADS of dolls, sometimes the same exact doll in triplicate. I never wanted to win the Nobel Peace Prize, cure cancer ( if love was the cure my Mama would still be here though), or even be a doctor or lawyer. I wanted to be a mom. 10 years ago if you asked anyone who knew me what they thought I would end up doing with my life they would say....driving a minivan full of kids to soccer practice. Well they got the minivan full of kids part right. I was 22 when I got pregnant with Adams. SO young, so naive. I had dreams of my child being the quarterback, pitcher, straight A student, scientist, doctor, get the picture. In the past 7 years every bit of that has gone down the drain. Now it seems that we're just praying he makes it to his next birthday. Sounds dramatic....but no. groundhog day. How in the world did we get USED to hearing how he shouldn't be here??? Why doesn't hearing how hard his life has been and will be just send us into the depths of despair? In  a perfect world it would be because we know God has him...and we do know that, but in this case someone keeps hitting the rewind button..... God always heals, always answers prayers in the way you want them answered. But no. I have to remind myself that praying for my son to be healed may not end in some lifetime movie-esque way. Our beautiful blue eyed, dark haired little boy one day might slip quietly away from us...and that could be his healing. But for now we're stuck in rewind...every day is the same, every week is the same, MRI again Friday, neurosurgery appointment again Weds.... They may decide to do a surgery that would save his life one day, or they won't. Who knows? I'm at peace with the fact that he's special needs, his hearing is as good/bad as its going to get, CP doesn't progress, his Autism seems to be at a standstill because of changes we've made to accommodate him,  and his heart physically looks fine, even though his EKG's always come back abnormal. He makes good grades with the accommodations set for him at school. But no. Somewhere between rewind and fast forward somebody stuck a "but wait there's more" in. I don't know what to do with this spinal thing. I've tried to shove it in with all the other things we've come across and either conquered or accepted as "Adams". It just does.not. fit. How? Why? WHO? Seriously? Does God do this? Would he send us this little boy to change us, and other people, then take him away like that? Really??? Are our lives going to be this constant state of wondering, hoping, wishing and praying, and dread? There are some people out there who probably think I'm just being melodramatic....but. When you sit there and hear a surgeon tell you that he is a "complicated case" and were looking at "major major surgery" that we'll have to "call any friends, family, and grandparents that want to see him just in case" especially so we "wont be alone" during Adams surgery...then...and only then...tell me I'm being melodramatic. When they put your son on restriction from anything that can put pressure on his spine because it could kill him, tell me I'm being melodramatic for holding my breath every time he falls down. Adam felt horrible for 3 weeks with no explanation. He still doesn't feel well but wants to go to school so I let him. Hopefully the MRI will tell us why. Maybe they can do the surgery already so he can be 7 again. Hopefully we'll find answers so we can breathe..Then maybe the kid can sleep until 7:30 on a Saturday without the rest of us drawing straws to walk down that dark hallway to make sure he's still breathing. Then maybe God can press play on our lives....instead of rewind. I'll update Friday when we get home and then Weds afte his appt if all goes well

Tuesday, September 28, 2010

Oh Happy Day!!!! On a more positive note :)

EEG results....WITHIN NORMAL RANGE =) woo hooo!!! Of course, they reminded me that this was just the short test..but guess what I . don't. care. We will deal with that aspect later, if there are any continuing problems. Anyways that is my super happy fun hallelujah post..Now off to yell at the hooligans and fix supper. Grandma's mac and cheese of course lol

Surgery Update.

The surgeon called last night and said that C-1 is slipping in Adam's spine so we have to do an MRI as soon as possible, hopefully this week but probably next week, to see how bad. He is out of town next week so our appt to see him probably won't be until the 2nd week in October, unless they can get him in tomorrow. He stated Adams' condition as not critical but definitely serious. He's not going to rush into surgery but not going to drag his feet either. He's hoping that there isn't any damage being done to his spinal cord. Hopefully he can get this fixed before that happens, or the MRI will show that it won't hurt his spinal cord, those are the two good options. He's talking more along the surgery lines now than he has in the past. Adams is still on restrictions physically. I really didn't want him to have to go through surgery right now but at this point I feel like if they can help him have a better life then I'm all for it. Not being able to run and play or even wrestle around with his little brother is no life for a 7 year old boy. Not to mention we hold our breath every time he falls. Anyway....more tests...more waiting. The story of our lives.

Saturday, September 25, 2010

Tim McGraw - Live Like You Were Dying - HQ (Official)


This is probably the one post I've never wanted to post. Adams symptoms from the skull, cervical spine issues are progressing. They did x-rays on Friday to see if his neck is stable. It is not. The neurosurgeon was hoping that the calcium deposit that he has in his neck would be enough stability to buy him some time to hopefully grow and not have to have surgery for a while, if at all. I guess hope wasn't enough. We left the doctor's office yesterday afternoon without an answer as to what he's going to do. He is going to talk to the radiologist at some point over the weekend and call me by Monday. I was told to have my cell phone on me at all times to receive his call. He will decide one of two things.....either to do surgery now or not. This will depend on the how severe the instability of  his neck is. If it's not too bad he'll probably repeat the scans and revisit the surgery option in a couple of months. If he needs the surgery now he'll do it. The only other way he won't do surgery is the worst case scenario....and I'm not even going to talk about that. I told him that I'm at the point where something needs to be done to help my son and he agreed...he just has to see from the radiologist if its worth putting Adam through. Not quite sure what he meant by that but I think he was talking about if its not too bad from a radiological standpoint. No news on the EEG yet either. Anyway this is our update, we're spending the weekend relaxing from home and trying to have a no tears, no drama weekend for Adam. Thank you for your thoughts and prayers......we appreciate everything so much.

Thursday, September 23, 2010


 I've written this blog several times and erased it. I don't want to be negative...Friday.....tomorrow. Ugh. No matter what the outcome tomorrow, I'm going to feel like my heart has been ripped out all day. Sad thing is, I'm getting used to that feeling.

Saturday, September 18, 2010

While I'm waiting

EEG was yesterday. 5 business days until we find out the wasn't bad , really. Adam was, as always, SUCH a trooper! We kept him up until 12 last night and woke up at 6 this morning because they wanted him to be tired so he could sleep through part of the test. Anyway....with an EEG they put this abrasive cleanser on your head in the spots that the mark for the electrodes, then conductive cream, electrodes, and tape. Adam layed through all that with NO problem.....At one point he reached his hand out to me so I took it and held it. I smiled at him and he smiled back, then said "You're ok mom. You're ok." I choked back the tears and told him yes I'm ok. He has this way of giving me a look or saying something to me when my heart  is breaking. I try very hard not to look or act worried in front of him but I guess I'm not so great at it.  He was so great. I love that little boy with every bit of heart I've got and then some. I worry sometimes that the other kids feel like they aren't as loved, or don't get as much attention as they should. Its a very hard balance having a special needs child when you have other children. It takes SO much time and effort that frankly we're exhausted. I hope there are no seizures on the test...but at the same time if there aren't then something else is going on. So long story we wait. and pray.

While I'm Waiting - John Waller

Thursday, September 9, 2010

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.....

Wednesday, September 8, 2010

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.

Friday, September 3, 2010

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.


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

Tuesday, March 2, 2010

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! was the last time and now it is March?! The year went by SUPER fast for us. 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!