Deuce BABY!!!

It has been a while since I wrote and there is soooo much to write about!

For starters Max was accepted in a program at the Governor Morehead School for the Blind. A sweet lady name Susan comes to our house twice a month to work with Max. Susan and another lady from CDSA-Children's Developmental Service Agency, name Pam came last Wednesday. They both fell in love with my Sweet Max...I mean how could you not....let's be real!

Pam did an E-LAP (Early Learning Accomplishment Profile) assesment on Max and was excited to report that he is right on target (9 month old level) on all skills and a 12 month level on motor skills....WOOOO HOOOO! GO MAX!

They were both very positive and hopeful for Max. Susan who specializes in visually impaired children (for 27+ years) even said he may not even have to read braile........."Come again", I said... I could not believe it...yes I could, but seriously....there is absolutely no way you can doubt God! Right there in my living room...there he was...again...yes I am talking about God folks. I'm thinkin' he was probably chillin' on our big comfy brown chair enjoying Dino Dan on the tube while listening in on Max's assessment. When Pam got to the part of the assessment where she tested Max's motor skills...I'm quite certain God bopped Max on the head with his "Holy-Oh yes I can" wand.

MY KID IS AWESOME!

So anywho...he is doing really great. He is crawling all over the dang place. I swear I saw smoke behind him the other day-he gets around so fast. You would never know he had PFV...he goes straight to what he wants....toys, food, food, more food, bottles, everything. The latest new thing is the words he started saying....

I was feeding him the other night and I have made a habit of repeating what things are over and over and putting his hand on whatever it is so he can feel it and know what it is...just in case he can't clearly make them out. So anyway I was feeding him mac and cheese and each bite I'd say "mmm nummy nummy cheese". Now I do this everytime I feed him..."mmm nummy nummy green beans" etc...well this was his first experience with the mac and cheese folks. Right before the last bite as always I said "okay Mr. Max, last bite, make it a good one"....and right after he swallowed that last bite of his mac and cheese...he opened his mouth wide for another bite. I said "all gone"...Do you know this kid shook his head no-no and said in a voice like someone with a voice box, with a chin to chest, eyes lookin' up,  angry look=CHEEEESE?! OH BOY...I got scared so what did I do?...got the kid more CHEESE! He got through half of the other mac and cheese and said DEUCE. I was puzzled...Did he poopy aka drop a deuce? Does he want to play poker? Is he straight tellin' me he is on his deuce serving of mac and cheese? Well he said it again and...AND I tell ya...he POINTED at his DEUCE...POINTED people...(inserting black church choir here)....HE SEES HIS JUICE and he POINTED at it. I freaked! I yelped and clapped and carried on. I said "yes baby....very good"...He was over it and not impressed with my cheering skills. He looked at me, rolled his eyes, through his hands in the air, palms up, pointed at the juice again and said DEUCE...like Mama...really? Can I get my deuce please?! I have never been so happy to give my Max deuce ever!!!! I just really love me some deuce now!

A few weeks ago I picked Max up from school (daycare). We were havin' a Max-Mama jam out session to BEP's My Humps. When the song was over I heard Max carrying on a 1 man convo. in the back seat and all this time I had thought he was enjoying my sining'...anyway I tunred the music off and just listened to him...Max:"Olly a bob wa, tay n na weend, scootn, BABY..." Oh it was so cute how he said it...and I said baby back and he said it again; so the whole 10 minute drive home from his school, Max and I did a remix of Baby Got Back....Max would say BABY and I'd say got milk...he thought it was so funny, well not really, but I thought it was so tooshay people...tooshay!

We are really enjoying all these little things...he does something new everyday it seems like.

Max's Obama signing in...

It is Thursday 8/25/11. My sweet Max turned 8 months on the 21st. I just cannot believe how fast he is growing.

Last Thursday we went to UNC for a second opinion on Max's eyes because I really felt like he was seeing better. His doctor's name was Dr. Ulrich and HOLY AUSSY...he sounded exactly like Shrek. Max didn't fuss at all. I had prepared myself for him to at the very least get upset during the drops to make his pupils dialate and my little fella just laughed at the nurse putting the drops in. Dr. Ulrich examined his eyes with another one of those contraptions that the dad on Honey I Shrunk the Kids wore while swinging around the back yard in search of his tiny shrunken chiRRen. Unfortunately he agreed with Dr. Toth's diagnosis from Duke...Bilatteral Persistent Fetal Vasculature...geez...is that not the most awful sounding thing ever!?! I will never understand why they insist on calling these terrible things such God awful, long, look-a-like how you spell the sound of a sneeze, names that nobody understands. I am going to call it "Dunno" from now on...Since thats pretty much the only answer we have gotten regarding the &^*%^ thing...What causes it? Dunno, What can we expect? Dunno, Well do you know what he can/can't see? Dunno, Can it fix itself? Dunno...Dunno...DUNNO.

You could tell Dr. Ulrich felt sympathy for us. He tried to be as positive as possible. We explained that we wouldn't change a thing and how we loved Max no matter what and that we know without a doubt he will be just fine and dandy...Then Dr. Ulrich explained (in Shrek's accent) how he has 2-8 month old, identical twin boys at home. He smiled as he told us how much he adored them and still with a smile on his face he said they both have Cystic Fibrosis...but we love them all the same and wouldn't change them for anything...

CRICKETS

Dang...this man here much like the angel nurse at Duke just really makes you realize there are amazing people in the world and no matter how bad you think something in your own life is...it could always be way worse.

When we left I had to go back to work. Allen had picked Max up from daycare and brought him to the appointment and I met them there. On my lonesome way back to work I remember looking at my husband drive away in my review mirror in the opposite direction. All I could think about was how my sweet, innocent little baby boy was sitting in his car seat in the backseat of my husband's truck, probably saying Obama (what he calls me) or dada, and cooing sounds-WHAT COULD HE SEE-was all I kept thinking...is everything just a blurr, can he see things up close to his face??? and My eyes filled up with tears. I did that thing all us woman do when we try to get it together...I looked up, took my right hand and fanned my dern eyeballs hoping the tears would dry up and I could go on about my day and get home to Max without breaking down and jacking up my makeup before going back to work.. I had held it together so well and stayed so positive in the doctors office. I am just so sick of the unknown...I WANT ANSWERS! I want to know exactly what he can and can't see and WHY this happend to my baby! I finally made it home and there was booga boog happy as a lark in his exersaucer. He heard me come in and was just uh smilin'! Peace came over me. Thats what I had needed all day...this little guy is my happiness. There is nothing better that being a mom...especially when your the mom of the world's most awesome little guy EVER...we are going to kick "DUNNO's" ass.

Obama-mama signing out...

July 4th...Max's First



So it is about 2:30 pm and I have been up since yesterday mmk!?! Lord have mercy why do babies teeth and get gas?!? I hit my first breaking point today-with my patience and all..................................................so that was a lie-I have had a few, but today WOOOOWEEEEE! I had to put Max down and walk outside for a breather. I felt so terrible! I just could NOT do it anymore-all the screaming and nothing that I can do to make it stop. I hope someone out there can relate!

The baby tylenol finally kicked in and my fingertips are straight up numb from baby orajel overuse! No worries folks...I only put it on his gums twice in the last 24 hours, but I tried an unGODly amount of times. The poor kid's nose, left big toe, and right ear lobe are not feeling a thing! How I managed to miss his mouth to that extent is neither here nor there...I really tried. I don't know if it was from lack of sleep or if I am just flat out going crazy, but I just could not get it on his poor little gums. We screamed and cried together today....I was on the verge of slapping the rest of the orajel on my forehead in hopes it would numb my headache because it sure did do a number on his gums once it met those suckers and his poor left big toe hadn't budged in hours.

Mommy is off to take a nap...Dear God, please, pUH-lease-just one hour?! To be continued....

Well the baby orajel...doesn't do jack for a headache. I got a joke of a 20 minute nap...Good news is Max's left big toe is back in action...bad news is-he is tootin' what sounds like the hot damn national anthem and screaming in between...I guess his impression of fireworks...I really wish I could take it away bless his heart!!! You know how you learn your babies cries? The tired whiny cry, the aggrivated hungry cry, then there is the awful pain cry...How his teeny-tiny lungs manage to make that scream is beyond me...It is just wrong-1) for them to feel pain that would make them scream that loud and 2) for them to be able to scream that loud!!!

Well booger bear managed to sleep right through the fireworks. I was so glad that our neighbors did fireworks on the 3rd. Max really enjoyed them after getting over the loud sound they made. He looked right at them in the sky. I stocked up on sparklers...he will love them for sure.

We got our free book bag full of books in braille and toys for visually impaired kids today from Seedlings. Allen and I were super excited because they have a thick lesson book for him and I so we can learn braille with Max.

Feeling so blessed and thankful for my life...my amazing family, awesome friends, and especially my perfect Max! Praise GOD!

My Problems Are BIGGER Than Yours Sooo...

This is not and will never be the case for anyone...Each of us have our moments in life, where you want to give up, or you question God, or whatever it is that you believe in...you feel angry and cannot for the life of you understand why or how, whatever it is that you are going through is happening to YOU!!! What did I do so terribly wrong to have to go through this? Well hello there-my friend in low places YOU are not alone...


After finding out about our son Max having PFV many friends and family members opened their hearts to us...even some strangers. As terrible as it may seem talking with other people and hearing their trials in life and hearing their hearts pour out to us with so much love and comfort was INCREDIBLE!!! Allen and I were in the hardest place we had ever been...felt pain we had never felt, we got angry at God...even wondered if he had just completely "left the building".


I started thinking of my life...all of it. The times I felt I was in the lowest of lows...and somehow I managed to come through it and be better because of it. All of the stories my friends, family, and strangers had shared with me...trying to put myself in the shoes of these people and attempt to feel what they were feeling or had felt...I even found myself again asking why for them? For the love of God I cannot understand why...


His mom and 2 sisters that absolutely adored him...Getting that phone call at 3 or 4 on that October morning that their son/brother had been shot and killed for absolutely no reason at all...he was such a loving and genuinely kind hearted person...not one enemy in the world...the 3 of them still being strong people, praying for others and finding comfort in knowing that God needed him for bigger things...


Why at 29 does she have cancer? She has 2 daughters and so much life left to live...She still wears her gorgeous smile and stands strong as an advocate for MS. She explains that there is still much hope for her, but no cure for MS and how she will continue to fight for a cure not for her own illness, but the one that shes witnessed hurt others with no hope...


How could such a loving mother of a beautiful daughter not be able to have another child? The other child she had always planned to have? I can remember playing barbies with her as kids and it never failed she always had her family of four in her souped up red barbie vette; Yet she still sends prayer and words of comfort to my family and even said she doesn't know how we are being so strong...She is the strong one to me...


Why would this happen to anyone? A 27 year old single woman's home catches on fire, her 3 year old son is saved-unharmed, her house is gone, she lays in a hospital room now 3 months later, with both legs amputated due to infections caused from her burns, and speaks with a voice box as a result of the smoke inhalation, she fears seeing her own son because she can't bare the thought of frightening him as this was not the mommy he knew...HOW GOD?


The awesome mom with a beautiful little girl. The little girl I am sure she had always dreamed of having and loving so unconditionally...why is there even such a thing as Post Partum? The fear she must feel wondering why...She adores her child so how could she feel these things of not wanting to hold her sweet little baby?
And still she comforts others and prays...


A mother of a now 18 year old amazing daughter who is blind and limited on one side of her body...not because she was born this way but due to a car accident she was involved in at age 7. The pain she must have went through and still goes through seeing her beautiful daughter go through all of these unnecessary obstacles in life...And still she comforts others and has the best since of humor...still shares her "best thoughts" on all things...All the while devoting her life to ensure her daughter lives her life to the fullest...


The young mother of 2 who has been in love with the same man since grade school, now going through a brutal divorce due to his long battle with alcoholism...she still prays for my family and sends words of comfort.


The lady dear to my heart that at one time in life was married to an alcoholic that abused her...she is a strong and beautiful woman with the most amazing little person in the world now...she inspires me everyday.


A friend who is in the midst of losing both of her parents to terminal illnesses, of which live on the other side of the Earth...yet she still hugs Allen and I and explains how she hurts for us and prays for us.

Or the mom that got in a care accident and as a result her youngest daughter was killed, as she was a passenger. This woman still stands strong, prays, and devotes her life to being the best mother and grandmother she can be...


The list goes on and on people...You think about all of these things and step back and realize no we aren't alone in our trials throughout life. We all have bad days, we all at times wish things were a little different, get mad when someone cuts us off on the road, have moments when we do things or say things in a fit of anger that we later wish we could take back...you can't. This is our life...it has molded us into the people we are. The hard times make us stronger and give us compassion to be strong for other people in their time of need. I realize that to each of us our problems are the hardest because it is our experience...and rightfully so. What may seem petty to one person could break someone else's soul. We all have the opportunity to better someone elses life everyday...we just have to choose to do so. Whats small to you may be the world to someone else.


I really wish I could personally thank each and every person that has emailed, called, and prayed for my family. Moments like these...the hard ones...these are the times I know without a doubt there is a higher being...to me thats God..to you maybe something else....I am thankful that my situation (Max's situation) is not worse, I thank God for my life, all the smiles, laughs, and for all the amazing people we are lucky to know and most of I thank GOD for my precious Max.

My cousin sent me this and we found it very comforting...thanks Allison!

"One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky. In each scene I noticed footprints in the sand; Sometimes there were two sets of footprints, Other times there were one set of footprints. This bothered me because I noticed during the low periods of my life, When I was ...suffering from anguish, sorrow, or defeat, I could see only one set of footprints. So I said to the Lord, "You promised me Lord that if I followed you, you would walk with me always. But I have noticed during the most trying periods of my life there have only been one set of footprints. Why when I needed you most, you have not been there for me?" The Lord replied, "The times when you have seen only one set of footprints is when I carried you."

Big Wheels Keep on Turnin', Proud Mary keep on Burnin', and We're Rollin'...

Well today was my first day at my new job and I was nervous as heck...especially with the latest news about Mr. Max. I woke up to my little guy's sweet cooing sounds, followed by his rasberry kisses...or fart sounds as Allen calls them.


I am thinking Max had over heard his dad and I talking about my having the "willies" about starting a new job...He had an unusual expression on his face like he was nervous for me...

I picked him up, kissed his face a gazillion times while singing his Grandpa's favorite song to sing to him "I Wanna Kiss You All Ovah...Ovah, and Ovah, and Ovah". He did his usual giggle for about the first 10 kisses, followed by the slight grin, which then turned into the full blown "ALRIGHT ALREADY MAMA! JEEZ LOUISA!!!!" whine. I patted his soaked bum and headed downstairs to change the dipes and get our mornin' eat on. Now I have never been a morning person, but since Max is, I am &*^%$#$ trying my best to turn into one. I usually turn on Nick Junior just to have a little racket in the background while I pull a master chef in the kitchen making our breakfast in the microwave...beep beep beep...breakfast is ready.


So anywho...I started feeding Max and telling him how today was going to be a great day like I always do. I told him to be nice to all the little people at "school" and then I went into how this was mom's first day at her new job and how I was super nervous. I am telling you folks, he pushed his bottle out of the way and placed his lttle hand on my hand, patted it, then rubbed it as if he was comforting me like old folks do to young ones....Are you serious Max? He looked right at me...yes looked right at me and smiled for I'd say about a second...Then he realized his bottle was missing in action and poked out his bottom lip-which might I add is the cutest pout face EVER!!! He was back to eating, but I gotta tell ya that my willies were vamanos!!!!

Off to the closet I went, Max in toe. I had to pick the perfect outfit for my first day. I asked Max to help me...I guess I had hoped he would have another growny pants moment and select a magnificent outfit-my new boss would compliment Max's selection and I could tell her that "Yea sooo, my awesome little 6 month old genious picked out this little number"...She was sure to be impressed! The kid grabbed my robe that I have had since junior high...Okie dokie son, this is serious business so you are gonna have to chill with dad for a bit while mama gets ready mm k! Of course I put the robe on with my serious business heels and glanced in the full length mirror...topped it off with a straw hat...ya never know...besides I needed a laugh!!

We were off to a fabulous Tuesday. On the way to Max's "school" we jammed out to Ike and Tina Turner's Proud Mary. Max absolutely loves me to sing, I mean it is his favorite thing next to applesauce, the kid thinks I am famous HELLO! He said something like Carry Underwood aint got nada on my mama...I dunno kids say the darndest things right...Moving on...so I began singing to little man...I left a good job in the city, dun dun, workin' for the man every night and day, and I neva....K, so here is where the "willies" came back. God really has a sense of humor right!?! Of all the songs to jam out to on this morning...really? I started thinking to myself "Self-you did leave a good job in the city..."(Note insert: Folks I just googled Proud Mary lyrics and do you know the lyrics are actually-Looking for a job in the city, working for the man every night and day-I have been signing that I had left a good job in the city since I was 10 years old and was obsessed with the movie Whats Love Got to do With It? Damnit why didn't anybody tell me?-nope correction just checked a better source and I was correct all along...goes to show you can't google everything)...What'ev...so Max started fussing aka yelling Mama sing it....so I did...big wheels keep on turning PROOOOUD Mary keep on burnin', and we rollin'-hit it Max-Rollin', rollin', Rollin', rollin' on a rivah. We pulled into his daycare and after the look on Mrs. lady in the blue car's expression I realized our jam-out session was OVAH and I turned down the volume...

Mrs. Lady In The Blue Car's expression

Mary was not proud no mas! Really Mrs. lady in the blue car....AT-TI-TUDE! I mean-all I am sayin' is...based on my observation of this lady's age, she was sure to be in her teens,during the release of Proud Mary...therefore we all know good and well Mrs. LADY IN THE BLUE CAR had jammed out before back in her day. Sooo what did I do? I cranked that sucker back up and finished my jam-out session with my son...thank you-come again!  You don't have to worry though you have no money, people on the river are happy to give, BIG WHEELS KEEP ON TURNIN', PROUD MARY KEEP ON BURNIN"...

Morg has officially had a "Coming to Jesus Moment"...

Whew...my latest coming to Jesus moment! Yesterday on my way home from work my emotions took over me. I was on my way home, driving down highway 40 as I have for the past 6 years. This day was different though...I was jamming out to my ipod and Reba McEntyre's song "If you SEE Him" came on. I looooost it people! I started balling! Now when I hear the words see, look, drive, picture this....or anything related to sight it takes me right back to that God awful consultaion room...where I was told my son is permanently visually impaired.

I of course hit the next button and it was the Zac Brown Band..."Free". I turned it up and got myself together. Low and behold Zac busted out with "All you neeeeed is LOOOOOOOOOVE!" Oh boy! Tears of joy started pouring out of my eyes. Here is where I had my coming to Jesus moment. I hit repeat on my ipod and sang along....LOUD, I'm talking I was not on 40 anymore I was on stage with the Zac Brown Band!

I started thinking of how this unfortunate situation is a blessing in disguise so to speak. All of these thoughts started rushing into my head...Man I cannot wait to learn the guitar so I can teach Max, we can learn how to play it together....I need to get on craig's list and find a used one, we can still go to the zoo, instead of "whats dat mama" I would hear his sweet voice say "whats that smell Mama? whats that sound?", I would respond with "son that is an elephant, it is a rather large animal, and that is the obnoxious sound that it makes, like daddy when he is sleeping, and that smell son is his stinky, much like daddy's to", I picutred us laughing together about it, OH HERE IS MY PART...sing it Zac...ALL WE NEED IS LOOOOVE, WE'RE FREEE AS WILL EVER BEEEE", then I thought...shoot we will still go to Vegas, we will play the heck out of Roulette, Craps, and bang the hell out of some slot machines together and watch Max light up once the slot machine started ringing, then I realized well this mug is going to be asking me after every hit...did I win anything? how about now? Ohhh thats a longer sound I won didn't I? Whew I can mess with him on that!!!

 Black Jack is overrated any way as far as I am concerned. Then I started thinking about when he gets older tears of joy still falling down my face going down 40 singing FREE, he may not build a car with Allen, but they can workout together, and build something else-well, scratch that....maybe not build something, but I was certain they'll figure out something awesome to do together, forget that they could still build a car together...Allen: son pass me the (insert name of tool here as I know none), Max would feel the tool his dad needed and pass it to him....it went on and on. I was excited inside. Excited to learn with Max over the years and watch him be an inspiration to people. I was getting close to my exit and Zac and I were on the part of the son that goes Lay underneath the harvest moon, do all the things that ....Just before reachin my exit I look over and there was a red honda accord idling next to me...this woman was looking at me like I had escaped from the looney bin...Now I don't know what y'all do when you get caught singing in the car but what I do and what I did in that moment, was grab my cell and lift it up in front of my face and move my mouth like I was talking to someone "Blah blah blah"....I nodded my head as I ever so slightly tilted my phone so that she could see it to ensure her I was alright...just chit chattin on muh cell phone mmm k...She zoomed off!

Whatever....so I got off at my exit and that feeling was still in me...and still is now. I asked God to keep this feeling in me and guide me on our journey of raising Max. He sure enough will to! Thank you Jesus! Need a button to press to insert a choir at an african american church...those ladies break it down....that my friends is what I felt in that moment....My coming to Jesus moment. Praise God.

It wasn't a bad dream....

I woke up this morning by the sound of my sweet son making silly cooing noises, heard through our monitor. It hit me that yesterday was not a bad dream...

My son was born on December 21, 2010. He is my only child. Words can't even begin to describe the feeling I had the moment I held my little man for the first time. This is it...my purpose in life! I remember thinking of all the things I wanted to do with him...take him to the zoo to see all the animals (wondered how he would say elephant), take him to the museum to see all the cool things (all the why mama, how come mama, whats dat mama), take him fishing, read books to him and eventually listen to his sweet little voice start reading to me, watchin' my son and husband fulfill my husband's dream of buying and rebuilding a 60's model hot rod with Max and one day giving it to him to drive, all the way to his 21st birthday----keeping the Alexander family tradition alive and woo hoo takin' him to Las Vegas for the first time...The list goes on and on. I even went as far as writing letters to Max while I was pregnant...telling him how he kept me up all night kicking and that he seems to think my rib was a football. I would write how excited I was for him to get outta there and all the fun things we would do together.

We took him home and began our new lives together. All of my dreams for his future continued endlessly. He was about 2 1/2 months when we got our first stab in the gut (atleast thats the best way I can describe what my husband and I felt) the day his pediatrician told us he wanted us to take our perfect little boy to Duke to see a neurosurgeon. He was concerned because Max did not have a soft spot and his head was in the low percentile. What the heck is this 30 something year old doctor talking about? So Max is a hard headed little guy...I could have told him that...he clearly doesn't know Allen and I...He then said a bunch of big words that went over my head not only b/c they sounded like chinese, but because my heart was sinking to even think something was wrong with my Max. I went home with the doctor notes and googled and wikipediaed all the information I could about the long word on this piece of paper-Craniosynostosis. I saw pictures of little children with deformed heads, words like congential defect, seizures, diminished intellectual capacity.....Anger and sadness took over my whole being! I prayed to God over and over and literally begged him to just make this all ok....not my child! We went to Duke after 2 weeks of the unknown and way too much research...He had an MRI and the neurosurgeon came into the overlit, sterile smelling room and sat down. He smiled and said Max is fine he just has some metopic ridging (premature fusion of the metopic suture)! I really wish there was a button on this keyboard right now that I could hit and insert a symphony of playful music that shoots beautiful fireworks out of your monitor...thats what I felt inside at that moment! PRAISE GOD!!! I am telling you I really felt like GOD was sitting right there with us in that room munching on a hot dog, smiling, and enjoying the beautiful music and fireworks with us. Pass the mustard God, pass the mustard!!!!!!!!!! I am pretty certain had I been given the opportunity that day to compete in any sport in the Olympics to represent the USA...I would have won like whoa!

                                                                               

HERE WE GO AGAIN...We were sitting at home one night and our little man that normally was content as a chubby fella eating cake, was screaming and crying non stop. Nothing would comfort him other than me sitting on a yoga ball and bouncing him...so I did for HOURS! He hadn't kept any formula down that day. I told my husband that if he didn't keep this last bottle down we were going to the ER!! He seemed to be doing ok and then I went to change his diaper and it was litterally full of blood. The drive to the ER was a blurr. We got him in there and after 8 hours of waiting we were told that our son had an intussusception which meant his small intestine was basically imbedded in his large intestine. They did an immediate air enema. It worked after several tries. We stayed at UNC for the next 2 nights. Surely this was it...I get it God your testing our strength....mmk we are winning the next World's Strongest Man contest...for sure...we got it. We are good to go, passed with flying colors! This has to be IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

NOPE! Little did we know the hardest was yet to come!

Max went for his follow up appointment with his pediatrician at about 4 1/2 months. His doctor said that he was really concerned that his head was not growing like it should and he was also concerned with the fact that Max was not focusing like he should at this stage. He wanted us to go back to Duke AGAIN to see a pediatric specialites doctor. So we did and they did a chromosome test and then told us that we would have to wait about 6 weeks for the results. Here is where this keyboard should have a button to press that would insert fire truck sirens, loud obnoxious horns, and cause smoke to pour out of your monitor-exactly what I felt at that moment. YOU HAVE GOT TO BE KIDDING ME-6 WEEKS?!!!?!!! They also scheduled Max to see an opthamologist. So a week later we went back to Duke to see the next doctor. He was given an eye test. He followed light and movement, but would not look up. They took us to a doctors office and in walked the opthamologist...he turned out the lights after putting on what looked like the head gear the dad wore in Honey I Shrunk the Kids when he was trying to find his shrunken kids on that concoction he made that swung him around the back yard! There was a bright light on this contraption and he began looking in Max's eyes. Max just looked at this guy with a look like..."Pssht...this guy. Do you see this guy Mama? There is something wrong with him." He kept smiling at the doctor with this sarcastic laugh like "Where did this fella come from?" The doctor was tickled by Max's personality. He stepped away from Max, flipped the lights back on, and said "I think he needs to see a retina specialist...he has retinal dysplasia". Max litterally laughed again with a big smile like "nope sir...nah theres nothing wrong with me...your the guy wearing the solar system on your head...k...lets get it straight." All jokes aside my heart sank again (Fire siren button hit here)! Well we finally get his test results back and all is well again...it came back normal! I was sure they just didn't want to tell us that he actually had a chromosome they had never seen before...they'd show me the results and say we have never seen this here before...I would explain to them...oh that-that there is the AWESOME chromosome...it only runs on the Alexander side...no worries, but they didn't! What do they know!

Yesterday (6/23/2hell) we went to his appointment with the retina specialist at Duke for Max's intense eye exam. I was sure when we walked in we'd be greeted on a first name basis by the 50 other specialist we had previously seen at Duke, but not the case. We went in very optimistic-all will be fine...maybe he will jsut need surgery to correct it or he will just grow out of it....They took him back to put him to sleep and examine his eyes. After an hour my husband Allen and I were asked back to the consultation room...Consultation Room my a*s! This room was so small the doctor came in am pretty much sat in my lap!***CRICKETS***

Doctor Toth:"Your son has Persistent Fetal Vasculature."

Me: "Ok, so where do we go from here? Will he need surgery or just outgrow it?"

Doctor Toth: "Your son is permanently legally blind, he will never be able to drive or play sports...

Everything went blank. I heard no sound even though the doctor's mouth was still moving. My hands started feeling really cold and I had this piercing pain I had never felt before in my heart and stomach, I started sweating and then came the uncontrollable tears....A million thoughts started racing through my head uncontrollably...all those dreams and plans I had of taking Max to the zoo to see the animals, the "whats dat mama" as he pointed at something he was looking at, him learning to read, building that hot rod with his dad to drive, going to Las Vegas to play cards...Then came anger! I did not feel God in this room. Where are you? WHERE ARE YOU? Why my son...why Max? I didn't even feel like God was listening in that moment. I can't believe your letting this happen to my innocent sweet 6 MONTH OLD SON>>>WHERE ARE YOU?!!!!!!!!!

I don't really remember much of the consultaion after the above. The next thing I remember was a nurse coming in and saying we need one of Max's parents to come to him in the post op room. As I managed somehow to walk down this long hall in my fit of anger I heard the sweetest sound....My sweet baby Max's cry for me! I ran to him and took him out of the nurses arms and  in to mine and he stopped crying immediately! I held him so close and held back my tears as best I could and then...There was GOD! Strength I didn't know I had came over me. I comforted my little guy all the while God comforted me!

I sat there holding Max. Nurses in the room started talking about everyday things...(I heard one say how she couldn't wait to get off that it was one of those days...too many patients and how she could not wait to go on vacation.) Woop here comes my anger again...I was fuming! How dare this nurse stand there clearly seeing me holding my son with the puffy red sad face I was wearing and tears sitting on my bottom eye lid CLEARLY ABOUT TO FALL! WHAT THE HELL IS WRONG WITH THIS WOMAN? Right before I had the chance to grab this woman's scrub shirt with little sunflowers all over it...There was GOD working again...A nurse standing over in the corner that didn't know me from Adam, was not Max's nurse and had no clue why I was upset walks over and says nothing...she just hugged me tight! She stepped back and asked if I wanted some water or a blanket then asked if I was there alone or was someone out in the waiting area...I told her my husband is out there. She told me she was going to go get him and bring us to a private room and ensured me she'd be right back and SHE WAS. She must be an angel. She took me and Max to Allen and our family was together....there was God again working his magic! The Angel Nurse explained she was going to give us a few minutes. She cmae back a few minutes later and said in a southern accent "Honey I just read what was goin' own' in little Max's chart. I understayand what y'all are goin' through and I am so sorry. My son was 6 months old too when he was diagnosed with Cerebral Palsy. Honey my heart broke much like y'alls is raat' now." My heart hurt for her...how dare me be upset...CP would be way worse...we are lucky. This Angel Nurse was so compassionate and kind....Thank you God for her! She explained that her son was perfect anyway and spoiled rotten. "He's now 13 and tells ya when hes happy and booooy he sure will tell ya when he aint, but he is somethin' else. I promise you it will be OK. GOD chose y'all to be his parents b/c he knew you could handle it and give Max everything he needs." Praise God for Angel Nurse!

About that time things began getting blurry again and the next thing I knew we were home. My mom and dad were there and my dearest friend's Jess and Kris came to visit. Many family members called and emailed with kind words and prayer. Shortly after I went to bed....hoping this was all a nightmare....it wasn't.