10 Things I Want Our Other Kids To Know

Adam is home on fall break which means my routine is messed up. If my routine is messed up EVERYONE'S routine is messed up. I was just sitting here thinking that there are SO many things I wish I could tell my other kids. They are 15, 7 and 5. So I'm going to write down ten of them. Enjoy <3 p="p">
1) You are JUST as important, special, loved and miraculous as your brother. So many times we get caught up in appointments, medicines, treatments, therapies and school work that we don't take the time to look you in the eye and tell you that you are loved just as much. Even if we forget to say it, we see the 97 in 10th grade math, the 100's in all your 2nd grade classes and the fact that you are finally able to write an A beautifully! We are so proud of you!

2) I wish we could spend more one on one time together. I can't imagine how hard it is for you to step back and let your brother take up so much of our time. All three of you are so patient with us and wait until we have spare time to spend with you individually. Harold- you show us so much grace it's unreal. Emily- you're right there beside us, helping us take care of your brother. You always forgive us when we have to change plans. Ellie- my precious... You're growing up so fast. I love being surrounded by your pinks and purples, glitter and baby dolls. Stay little just a little while longer.

3) Your strength amazes me.  The hospitals, the surgeries, the needles, emergency rooms, doctors, and medicines don't scare you. If it does, you deal with it and move on. I honestly don't know how you do it. God gave you all amazing strength. You can, and have dealt with unimaginable things and you came out stronger.

4) It's ok not to be strong all the time. I know- kind of weird after number 3...but seriously. Come to us with your problems. Cry on our shoulders if you need to. We're your parents and we want to help. Nobody is going to love you more than we do. Other than God. Ever.

5) TELL US. About your stupid argument with your friend at school. That you just can't figure out this math problem. (Emily)  That moving up in Sunday school and having to leave your best friend behind is kinda hard on you (Ellie). That you want to play football and baseball (Harold).  We want to know the day to day of your lives. This is normal- and normal is GOOD! :)

6) Frustration is normal.  Sometimes we all have bad days. We all get frustrated. It's ok to be that way. If you're frustrated in a situation- take a step back from it. Just leave it. Go ahead. It'll be there when you get your emotions under control.

7) It's ok to grieve. Your brother won't be the star quarterback. He struggles in school. Every day situations are overwhelming to him sometimes. He won't give you any nieces or nephews. You will have to help him for the rest of his life. Some days are just bad days. It's ok to be sad about it. It's ok to think about the future and grieve the what if's, the never wills, and the how's...

8) We serve an AWESOME God. Never underestimate His power. Ever. You have been witness of many miracles in your brother's life. Never forget that. Even when everything is all doom and gloom. He's the light at the end of the tunnel. Rest in him.

9) Adam LOVES you. Even if he yells at you. Even if he cries. Even if he says doesn't. Even if it seems like he gets sick or has a bad day whenever we have something planned just for you. It isn't on purpose.


10) Never ever give up. Ever. On anything. It's a famous quote. I don't remember who from... but it's true. Do you! Don't give up! We'll all get through this together. Remember that 'Incredibles' shirt that Adam has?? Well you need one too!


I can keep going on and on... Hopefully the kids read this one day. For now- I'm going to work on showing them more often.

Special needs kids are amazing. Their siblings are sometimes even more amazing. They're the ones ditching friends for using the "r" word. They push wheelchairs and strollers for tired moms and dads. They are the ones hugging melting down kids in the grocery stores just so mom can finish at the cash register. They do the dishes when mom falls asleep sitting up after dinner. They get up early in the morning for that 10-20 minutes of one on one time before school. They know how to measure medicine and can tell the doctor every one of their sibling's diagnoses. Their world stops when ours does. And they carry on where we left off after we die.

 

To my babies : About your Grandmothers

If I could I would bring them back just so you could get to know them.
       None of you ever got the chance to meet your Nana (My Mama) on this side of Heaven. She wanted you all before you were even a twinkle in my eye. Every day she would ask me if I was pregnant yet. She chose her name "Nana". She wanted your Daddy and Papa to take you fishing and hunting with them. I wish I could have taken pictures of her or video taped her talking about her future grand kids. I am so sorry for not thinking ahead. She LOVED you BEFORE you were born. That is TRUE, UNCONDITIONAL love. You could see it in her eyes- they would just sparkle, and she would have the biggest smile on her face. She was SO looking forward to a future with you in it.
         Now about your Grandma (Daddy's Mama)..... She loved you ALL so very very much!
Emily- You remember Grandma rocking you in her chair and the fun you would have when she would pick you up from school. You also remember the love she had for ALL her grand kids. You were so special to her...she always took time out to sit and listen to anything you had to say. She also would tell you how much your Daddy loves you every chance she got. You had a hard time when you were little but it went away at Grandma's house. She took very good care of you with your Daddy and always made sure you had everything you needed when Daddy was working.
          Adams- You are the only grandchild that Grandma was in the room with when they were born. She was SO happy to be there! She didn't want to leave but Grandpa got her to after promising that he would bring her back the next day. Y'all rocked and rocked and rocked some more. When we left the hospital after having you we did two things 1) Ate lunch and 2) Went to Grandma's. She sat in her chair and rocked you all day long. She said you fit perfectly in her arms. The two of you spent many days just rocking. When doctors sent you home because they didn't know what was "wrong" with you or how to help she would sit and rock you. The whole time she would look at your Daddy and I and tell us that there "wasn't a thing wrong with that baby!" ... That you were perfect. She knew exactly what we needed to hear. YOU ARE PERFECT!
           Harold- Grandma's health got worse when I was pregnant with you. We used to go out with Grandma and Grandpa all the time and spend lots of time with them. She enjoyed wondering who you would look like and what your personality would be. She cried when Daddy told her your name was going to be "Harold Alan" just like Grandpa. She said she couldn't think of a better name and that if you ended up half the man he was you would be just fine. She liked to hold and rock you too. When you got a little older she loved to hear what you were doing and what new things you had learned. She called you "Keith's Mini Me" and loved your blond hair. You always sat by her and talked to her, sometimes for hours. You never forgot to tell her you loved her and she always said "I love you too Baby Boy".
           Ellie- Grandma loved it when you would sit with her and love on her. She was so happy to have another grand daughter. We didn't get to spend as much time with her as we wanted because we moved when you were 5 months old. She always told you she loved you and you always gave her kisses. I know she loved that.
           All four of you are precious, sweet, loving, smart, and beautiful. You didn't do anything wrong for your Grandmas to have died.. It's the exact opposite... God loves you SO much that he sent Jesus (his son) to die on the cross to save YOU (and me, and grandmas, and grandpas, and everyone) from sin.  NOTHING can separate you from God if you believe that. Both of your grandmothers believed in God and Jesus so right now they are in Heaven waiting on us! When your life is complete here on Earth and God calls you to Heaven you'll see them again. They are just out of our reach. The GOOD thing about Heaven is that time moves SO fast they won't even know we weren't with them! So smile babies- I love you so much and your grandmas wouldn't want you to be sad.

-Love you always, Mama

Observations

Our two boys are so alike..yet so different. Most of the time life goes on and we don't really think about it other times- like last night, it hits me right in the face like a ton of bricks. Harold slipped on the kitchen floor and bit THROUGH his lip. There was screaming, and blood, and tears, more screaming,  and then a four hour wait in the local hospital's waiting room. 2 stitches later we got home at 1:45 am. My baby boy woke up and he has been doing as well as could be expected today. This sounds (or looks) wrong when I say this..but thank God Adam didn't slip! He could have been very hurt, or worse.  I'm thankful for both my boys. They're my buddies and I wouldn't trade them for anything in this world. Harold gives us our daily dose of "normal" he's broken a bone, he's busted his lip, he's gotten into poison ivy, learned how to swim, etc. etc. etc. We get our mild heart attacks from him, bandage him up, and go on about our daily lives without thinking twice about it. With Adam it's like one mild heart attack that never goes away, but gets worse with every bit of "bad" news we get. He's fragile. He's never hurt himself from being " a boy" but his body fails him in some way every day. He doesn't know what it's like to get hurt, heal, and feel good again. But he smiles. His giggles make us all laugh even when we are in our own little pity party. He puckers his lips up like a fish to kiss us and tell us that he loves us. The kid takes every blow with grace. I kick scream and cry on the inside (sometimes on the outside too) but he just deals with it. Most of the time with a smile on his face. He knows everything is going to be ok. So we have two boys. Two VERY different boys. Two STRONG boys. I love them both with every bit of my heart. I don't know how our life is going to end up. I do know that there is nothing I would change about it.

Dear Adams

Dear Adams,
You are eight years, ten months and one day old today. The day you were born I didn't know what your little life would bring in mine.
        Our little boy, you were brought into this world surrounded by those who love you.  Daddy, Becky, Grandma and I held our breath waiting on you to cry right after you were born. Daddy and Becky left me to go stand beside you while the nurses worked on you. They finally got you to cry. It's like you did it just to get them to stop messing with you because you stopped as soon as the nurse handed you to Daddy. The world stood still for all of us as you quietly blinked those beautiful eyes just taking it all in. Daddy and Becky love you so very very much. They have been your cheerleaders when you need pushed and my backbone when I can't find the words to say to people.  Love them, Hug them every time you can. Besides me- they are two people you can always count on.
     Those four days in the hospital we enjoyed you. We didn't know what was going on in the background. You had the best doctor because he knew something was different. Dr. Young sat up with you all night the night you were born searching for answers. He told me he stared into your little face and asked you to show him what to do. That's when he did the first karyotype. He never told us that he ran tests on you. The results came back and he didn't believe it so he drew blood for another test before we went home.
       When we got home Daddy and I realized you definitely were different. I had to sleep with you or you would get really cold and purple toned, you were a happy baby but we had to get different bottle nipples because you couldn't get any formula out of the ones we had, when we held you you didn't even try to pick your head up.We knew before we left the hospital that you had failed your hearing test but they said some babies just take a couple weeks to get fluid out of their ears. A home health nurse came by to check on us and gave us information on Babies Can't wait. We thought that was kind of weird but you had a hard birth so we figured maybe you just needed a little bit of therapy to get your strength back.                    
     Our family was and still is awesome. Emily loved holding you and we often heard her over the baby monitor whispering to you while you napped. I know that Emily is a teenager now and gets frustrated with you sometimes. She loves you. Her heart breaks when yours does. Keep hugging her and giving her your fish kisses - she loves it even if she acts like she doesn't sometimes.
    You were two weeks old when we found out that you had XXY and your balanced inversion. You also failed the second hearing test. We were referred to geneticists, endocrinologist, physical  therapist, audiologist, ear-nose-throat doctor, and the cardiologist. The geneticists didn't know why you had the physical issues you had because they aren't directly related to XXY at least not as severely as you had them so they sent us home to "enjoy" you as long as you were here. The endocrinologist didn't know why you were so small and not growing well and there was nothing for him to do as far as the XXY yet so he sent us home to come back in 2 years. The audiologist recommended ABR testing when you got a bit "stronger" because you would have to be sedated and you were too small for hearing aids. The ENT said you were small but everything was ok since we found the right bottle nipples and you didn't have a swallowing problem. Then there was the cardiologist. You had an enlarged ventricle, the hole that everyone is born with was enlarged and not closing yet. He wasn't willing to do anything yet about any of that because you were small and weak. He said if your heart didn't start closing the hole and catch up to the enlarged ventricle he may operate on it when you got a little bigger. This is when we realized you had way more going on. We realized just how much we needed God to heal you. We went on with life praying for  more time with you. People stopped us and told us how beautiful you were.
      We moved to Albany, closer to Papa and my family. Papa didn't miss any of those early appointments. The three of us (Papa, Daddy and I) bombarded doctors with questions. I'm sure the doctors thought we were all crazy. Papa loves you unconditionally. You're his first born grandson. You look and act just like him. Treasure that.
       We moved back to Cartersville when you were one. Your little brother was born exactly 17 days before your second birthday. He's been your voice, your strength, and your partner in crime. He is your best friend. I hope you two are always there for each other. Life went on, you were healthy despite a few bumps in the road, we eventually found ourselves on auto pilot. We juggled therapies and doctor's appointments like we'd been doing it for decades. Prayer got us through those baby and toddler years.
      You got hearing aids at age 3. You started pre-school at 3 because Babies Can't wait stops at then and in the public school system you could continue your therapies. When you were nearly four we had our little girl, Ellie. You are such a good big brother to her. The two of you have a bond like no other. She looks to you during the scary times and you are her source of strength. You always tell her what's going on and always have a hug for her and tell her everything is going to be o.k. Please continue to be honest with her. I can't imagine what it's like to be so small and have such big worries.
       You have been sedated over 15 times for tests, you have had six surgeries (two surgeries done at one time twice). We have since found out that you have two more genetic abnormalities, one a deletion and one a  duplication. You have Autism, Cerebral Palsy, XXY, Severe hearing loss, Fibrous Displaysia, vision problems, low muscle tone and they have had to fuse c1-c3 in your spine to attach your head to your body. You also have a bone growing into the foramen magnum- where the spinal cord and brain stem meet. They have cut this bone once but will have to do it again as you grow. Nobody can tell us how long you will be here with us, but I'm believing you'll outlive us.
     For now- we love you. I wouldn't change you for the world. This life is hard. The blessings are unimaginable. You have a divine purpose, going around for 7 years with scar tissue holding your head onto your body is evidence of that. Countless people have told us how much you have changed their lives. We went years with people telling us how weak you are. You are not weak. You are the strongest person I have ever met. Keep the love for God that you have now and remember that He loved you first.  I am honored and blessed to be your Mama. I love you. " I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be."

A new year.... new perspective.

So far this year has been crazy, busy, hectic...and.... absolutely wonderful! Adams has had a lot of appointments so far (crazy I know .... only two weeks into the new year) We are now homeschooling all of our kids (Adams included) and he has a 98 average!!! We have had bumps in the road, the VPI surgery was horrible and I never want to go through that again. The make a wish foundation is JUST now getting through completing his wish (eh, what can ya do). We found out that Adams' hearing loss is strictly conductive and that the inner parts of his ears work perfectly.  And.... we're looking at another surgery this Friday. After the VPI surgery the anesthesiologist said that he had a really hard time intubating Adams due to his anatomy and the cervical spinal fusion. It took them 45 mins and a camera scope to get it done last time so this time they had to go through all the risks and extra risks with me at his pre-op. Through all the surgeries, doctors appointments, bad days, bad weeks and months Adam is happy. Adam loves God. Adam doesn't question why his life is the way it is. He inspires us to be better people. I want to  live my life right because when I die I want my family complete. Adam will be there when God calls him - I hope when he's 90 or older of course... He knows that he is here by God's grace to fulfill a purpose. I wish I could be more like him. I want to have the peace about our situation, scratch that, his situation that he lives through. Pray for my boy. God's will be done. I'm letting go of the wheel like I have so many times before and I know that while Adam is in surgery Jesus will hold his hand just as he does whenever Mommy and Daddy can't.

A new heart.... Or an old one healed.

About this time 8 years ago I was at home with my beautiful baby boy, he was around 6 months old and cute as a button! He was small for his age - wearing 3-6 month clothes, tiny little feet, itty bitty hands, cute little ears, etc...but he had a HUGE heart... The kid smiled non stop. I jokingly say that I had to remember to feed him because he never cried- well it's mostly true! Adams was a snuggly, squishy, sweet baby boy. We didn't know then, and are still finding out just how resillient he is. Also, what a MIRACLE he is.

If you know me, you know I love to take a shower, the hotter the water the better.... Add some good smelling soap and I'm in heaven! I do alot in the shower (other than bathe of course!)... That includes talking to God, "formal" praying, talking to myself (you didn't know I was crazy?!), and relaxing.

 We were getting ready to go back to the cardiologist to check on Adam's enlarged ventricle and hole in his heart. In my normal (lunatic) fashion, the night before A's appointment I prayed in the shower. It was a crying, pleading, heart breaking prayer time. I got mad, I got sad, I got strong, and that was replaced with weakness, it was actually quite bipolar thinking back on it LOL!... One thing that I DO know is that without God in Adam's life he'd be nothing. He wouldn't be here. Even THAT long ago, still in the honeymoon stage of having our baby boy we knew that.... maybe it was a window into what was to come over the next 8 years. Who knows.... Anyway, during all that praying this came to me. " I may not heal Adam physically. But I will heal his heart. " I thought this meant physically heal his heart (duh, me). Adam's heart DID check out much better at that appointment, in fact, we haven't seen Dr. Donner since! :D I was a happy Mama, Keith was a happy Daddy, Papa and Grandpa were over joyed, Grandma cried and said "I knew it! I told you all along that boy is going to be just FINE!" ....  It was a great day!

We've had hiccups, road bumps, black clouds that won't leave us alone, and blessings. All of the can'ts, won'ts, will nevers.... they are just yield signs to this little boy. I'll list some of them now:
" Adam won't crawl until he's at least 18 months old, possibly even two."- DONE- 12 months old :D (This kid drug his head on the floor for 6 months, all the time gaining strength"
"We don't expect Adam to walk until he's around 3 years old." DONE- 18 months
" This child's head was held together for the past 7 years with nothing but scar tissue, you must be really good parents because he shouldn't be here!" -DONE.... He's HERE, and right now playing on the playground with his friends at school! (Not to mention he's fallen down stairs, off slides, out of swings, off his bed, off the top bunk on his bed, etc all BEFORE the fusion)
"With hearing like Adams, he should be non verbal." - DONE- The kid won't shut up. Seriously. He's a blabber mouth. No, we don't understand everything he says but he'll get there... Wait and see.


Those... ^ those right up there ^^^ are just suggestions to this little boy. He's improving daily. He has a long, hard road ahead of him. NO- he hasn't been fully healed physically... But you should get to know his heart- It's full of gold..... and God. Never underestimate the power of prayer. Ever.

"God is GREAT!" - Adams. (Mommy, Daddy, Sissy, Budder, and Elwie think so too!)

Realizing you can't fix things.

I can't fix Adam. I can't change his DNA, I can't take away the autism and CP. I can't take his aches and pains out of his neck and head when the weather is wacky. I can't tell his medical problems, even his allergies just to leave him alone already. I have. I would. I still do. It doesn't work that way. If love could heal him, he'd be the healthiest happiest person on the planet right now. Yesterday was a quiet day, he barely spoke, generally felt icky because it was a rainy day. I guess the good thing is it wasn't contagious...the bad thing is, it wasn't contagious. If it was, it would run through the family then leave... this won't leave. We have to deal with things as they come the best way we know how. I hope that Adam learns one thing during his life, he is loved.

To Adams: The day before your 8th birthday

Dear Bug,
I want you to know that I love you so very much and I have always known that you were an extraordinary child...from the day I found out that I was pregnant with you I knew that you were going to teach me so much about life. I got pregnant with you during a huge change in my life, you suprised me that's for sure, but walking into that doctor's office first thing in the morning I gave it up to God... if I was going to have a child it was going to be because it was ordered by Him (and Nanna and Auntie Laura... My exact words before getting out of the car were " Ok Mama, Laura, and God...do what you want")... Being pregnant with you gave me the drive I needed to have a better life, every decision I have made has been to give you the best that I can... Your biological father still hasn't ceased to amaze me with his lack of care about you. It's his loss, we have gotten to enjoy every milestone, heartache, and triumph that has come with your life and I wouldn't trade that for the world. Your Daddy loves you as his own son, he cut your cord when you were born and has been right there with you ever since.  In 24 1/2 hours from now you will officially be 8 years old. This time 8 years ago I was begging for more time so I wouldn't have to have a c-section...that was the biggest fear I had for some reason. I didn't know how all this would turn out, I was expecting a perfectly healthy little boy because all of the testing the doctors had done came out just fine. I didn't know what was going on, you seemed fine.. I'm so sorry Bug... I'd give anything just to take a little pain from you....and if you do get mad at me sometime, I hope you forgive me. Daddy and I love you so very very much and are so proud of you! Don't ever lose sight of the fact that you have a purpose. Everything you go through we are right there with you cheering you on, catching you when you fall, and celebrating when you overcome obstacles... There will never be anyone else on this Earth that loves you as much as your family does... Time sure does fly little man, you aren't so little anymore. I hope you always make sure to hug me before school, keep that silly laugh of yours, tell your Daddy you love him SO much, and act like your Papa with your out from nowhere jokes and that twinkle in your eye. I don't know what the future holds and that is kind of scary but I know whatever comes, we'll take it and handle it as well as we can. Happy Birthday, sweet boy! May you have many many more.. We love you!

Rascal Flatts-I Won't Let Go Lyrics

For my bug..... I love you. You are the most amazing kid I have ever met in my life. YOU were formed by God , to do his work, and to change the world in your own little way. Our job as parents is to help you through, if only for a little while. I hope you have an amazing day at school. <3

I don't even know a title for this...maybe reality??

Warning- I don't even know where I'm going with this so excuse the extremely ADD blog post...
We got the call this past week that Adam will be off hold with MAW (Make-a-Wish) on Monday...and we all cheered... He is SO happy, we are SO happy for him. This is an opportunity for him to ask for anything in the world. They're awesome, He's awesome... I'm sad... And please don't get me wrong.... While I am grateful,  I wish there wasn't a need for this organization... I wish he never got approved for it... I wish nobody's child had an illness bad enough to even know about it. While you know that this is something that is supposed to be fun and light hearted you also know that your child is different. Your child has, is , or will face something that will threaten his/her life. That is a huge weight and in Adam's case, as with lots of other MAW kids, we don't know where we stand in the has/is/will area.
Adam had a rough day today, eczema flare up and the rain makes his head and neck hurt.... hopefully this rain will pass and I'll have my happy boy back. He did have lots of hugs for his Daddy this morning. I think he is happy that Daddy doesn't have to work on the weekend anymore, we all are!
I'll keep everyone posted on the MAW stuff of course, hopefully he won't have to wait too long for his wish to be granted, he's too excited!

Comfort for a cold night...

Anyone that is close to our family knows about the macaroni bowl. I don't know where my Grandma got it or even how long she had it, all I know is that it is o.l.d.... That bowl has been an integrate part of our family since I can remember. The only thing that has ever been made in it (that I know of) is macaroni. My grandmother's macaroni was the cure all for everything , colds, flu, heartaches, and was always there during happy times too. My Grandma ended up passing it down to my mom before she died. With Grandma's macaroni you don't eat anything with it. Just get a big old bowl of goodness and chow down. No... wait....you savor the first bite. At Grandma's there was a "mmmmmmmm" in unison, at my Mama's the same "mmmmmmm".....and now it's the same at my house. It is hot to the touch, but warms the very soul too. You know that whoever made it did so with love, and just for you.. It's just a bowl with some food in it, but it's what happens around the bowl that matters. The tears of sadness, and of joy surround it....but most of all it is filled with love.  I hope my kids cherish  this like my family does, I hope that the memories flood back for them just like they do for me long after I'm gone, and I hope that every time they make "Grandma's  macaroni and cheese" it brings them comfort because it will be a huge hug from all of us.  Spend time with your family, make it a point to talk to them and spend time with them....especially if they are old. Time goes by SO fast. Think long and hard about what's in your "bowl" and how people will remember you.

2 months down 4-10 to go and we'll be??? Doing whatever this little guy wants!

Know what he wishes for????

How amazing is that?????  I'm relaxing just looking at this picture.

Oh and he wants this too

I'm so stinkin excited for him!!!! I'm sure he'll have a ball (of course we will too!) a whole week of YES....because NO won't be in our vocabulary (unless there are any dare devil stunts or things that are just never allowable lol) 

We had a GREAT Christmas and are SO glad it's a NEW year!! Surely this year will be better than the last!? 

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 :)

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 them...it 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 toys...you 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 :)

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.

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!

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.

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!

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.

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.

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 ...baby 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, lawyer...you 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

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.

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

Update.

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.

Friday.

 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.

While I'm waiting

EEG was yesterday. 5 business days until we find out the results....it 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 short...now we wait. and pray.

While I'm Waiting - John Waller