WOW! I don't even know where to begin on what was supposed to be an awesome family day that we have looked forward to for so long! Alex went to sleep last night at 1:00am if that gives you a clue as to how our day started! He woke up at 7am because he had to go to the bathroom. Well we took care of that bedside so I was hoping he would go right back to sleep... well then I had to fix his leg, get his breakfast... Randi got up at 7:30 so that I could go back to sleep for a bit... he finally fell back asleep till 9:50 and then I had to get him up so we could get ready to get outta here. Well once he was awake... he wanted to be dressed, in his chair and out... Randi and I had to throw on our clothes, brush our teeth and head out. We got to the jeep, he wanted to ride in the front so he could recline. That's when the hell began! Suddenly the child in the front seat with me was not Alex Michael but I believe he was Rocky's evil twin! As we are on the interstate just crossed over Emerson, Evil twin decides to open his door as I was going 70 on the interstate and the doors were NOT locked. YES... I SAID NOT LOCKED AND HIS DOOR FLEW OPEN! I forget I am dealing with the mind of a 5 year old sometimes! I had to pull over... I am freaking out, yelling like an insane person.... "Alex, why would you do that?"... "You know better...are you crazy?" "Do you know what could have happened to you?" and so on and so on! His response " I wasn't trying to open the door, I thought it was locked... I wasn't going to fall out anyways, I had a seat belt on"....WHAT THE FRENCH TOAST??? OMG... Randi and I were freaking out... I couldn't get out and shut the door, cars were coming fast on 95 and I didn't want to get hit but I couldn't reach the door from my side to close it. Randi had all kinds of crap in the backseat she had to climb over to the right to get out and shut his door.... ADRENALINE RUSH MUCH? So then we get back on the highway and EVIL TWIN starts trying to move gear shift from drive to neutral and trying to grab the steering wheel saying..." I can't reach it... see" ... as he grabs it! So I was trying to hold his right hand, while driving, as he is digging his nails into my wrists and hands and trying to bite me... so Randi is now trying to grab his hand so I can drive and he is trying to do the same to her.... WHERE IS MY KID ALEX? WHO IS THIS IN THE FRONT SEAT? He is trying to spit on us, bite us, spit what he calls Trach Boogers on us.... coughing them up and then trying to get loose to wipe them on us... just OUTTA CONTROL! The only thing he DID NOT do was make his head spin and throw up on us! This went on for the entire ride home... which consisted of 25-30 minutes... we were in what I would easily define as hell! The sweet loving jovial Alex we had for Friday and Saturday was gone and we had someone I do not know! Sarah was coming over to bring us our new puppy and I had to threaten they would not be coming unless I saw an attitude change in 2 seconds. His response..." One one thousand"..."Two one thousand"... "ok, it's been changed"! "I'm sorry mom, ok I will be good now". ARE YOU KIDDING ME? Well that lasted all of 5 seconds because he then turned to Randi and said "Get outta my face, I can feel you breathing on me with your nose from the back seat"....WHO ARE YOU KID? My heart was pumping so fast and I was soooo stressed out that entire car ride home that I couldn't wait to get to the house and outta that car..... away from him so I could calm down! Out the car, into the wheel chair... up to the house.... FIRST CHANGE to be made...NO RAMP... "Mom, why are you throwing me all over the place, dang.... just get me in the house"..."You don't have to kill me before we get in the house".... and so on and so on because I bumped the wheelchair a couple of times trying to get him in and over the step into the house. 2ND CHANGE, carpet has to be ripped up.... he cannot navigate at all on the carpet and I cannot have him dependent on me 100% or he will never recover as he should....... Into the house... "I want to lay in my bed".... YOU GOT IT!.... Into his room, out of wheelchair... onto his bed.... 3RD CHANGE... Bedrails for sure! As I just get him into his bed... I receive a text.... as I am reading the text... a phone call.... both in regards to feelings being hurt that they were not invited to the birthday party! This is where my day really went south and ruined my supposed to be awesome day with my family after being gone for 81 days! I can't even begin to explain the emotion at that point what I was feeling and really just disbelief of what I was reading and hearing! First off let me say this..... for anyone who is feeling left out or upset that you were not invited.... if you read my blog... go back to where I say that the psychologist made me give visitor control over to Alex. Alex decides on a DAILY basis who can and can not visit him.... I have NO CONTROL over that. Alex had FULL CONTROL over his birthday list. I made a list of people and he, Randi and I went thru it and he said yes or no. This party was for ALEX... not me, not you...not my family... ALEX. I had family members that were NOT invited that DID NOT take it personally nor did they call me and ask questions. We are dealing with a BRAIN INJURY.... not Alex.... the Alex we all know and love is not FULLY HERE right now. Yes he is miraculously recovering at superman speed but what you may not understand is that he is NOT fully recovered and we still have a very very long way to go! Anyone who visits gets 30 minutes to an hour.....you may see a glimpse of the real Alex but for a second. Anyone who truly knows Alex knows that he does NOT curse in front of me, whether he does with friends or not... he would never do it in front of me.... those of you who truly know Alex... he is 98% of the time very respectful to me and other adults ie. his Aunt Randi and those who truly know Alex know that some of what comes out of his mouth would be filtered! My point... he is not fully recovered and I cannot control his thoughts, words, feelings or expressions at this point. He has a brain injury and no matter how great he looks on the outside... there is alot GONE on the inside! Most of the right side of his brain is GONE.... some of the left side is GONE due to a stroke.... To think that I maliciously left anyone out or am keeping someone deprived from seeing him is to say the least ....astonishing! I have opened up my WHOLE WORLD to the public and let everyone in on good days and bad days.... everything I do is for ALEX and noone else. ALEX IS MY MAIN FOCUS and that's where it is going to stay. If anyone has a question as to why they were not invited then you will have to take that up with Alex when he is fully recovered. I wish I could have invited EVERYONE that has been supportive thus far.... there are soooo many of you... behind the scenes.... meals, cards, money, emails, gifts.... etc. It's just not possible at this point and that is what the homecoming party is for! Yes, I know I said that the party was limited and believe it or not... it was! It was limited to who ALEX wanted there, plain and simple. He may want you to visit on Monday and by the time you get here decide that he does not ... that's the only way I know how to explain it so that you can understand it. We go from A-Z in a matter of seconds and he loves me one day and hates me the next! If you ask to come visit and I tell you today isn't a good day.... it really isn't a good day and I am saving you from the EVIL TWIN that he can be. He hurts me and Randi's feelings everyday... we know how to take it... I am afraid you won't. I have enough stress to deal with besides worrying about if he is going to hurt your feelings or say some off the wall crap that I can't control. If you love Alex.... I just ask that you understand and be patient. I know it's hard.... I know soooo many people want to see him and be a part of the big picture.... right now it just can't be that way. Alot of you have been there from day one when this happened... I sooooo appreciate the love and support and all you have done.... what you don't realize is that ALEX doesn't realize all what you have done and honestly doesn't care. He remembers NOTHING from Shands... he has no idea who has been here and who hasn't... he only goes by what we tell him. Even then, it doesn't register what all everyone has done for him. Until he fully recovers.... he won't and for that I am sorry. Randi and I are here 24-7 and he appreciates NOTHING we do so maybe that can put things into perspective for you. Again.... he hates me and Randi half the time.... you followers only get 10% of what goes on here on a 24-7 basis. YOU HAVE NOOOO IDEA! NONE! My job is a THANKLESS job as is Randi's. We don't get any gold medals for doing this and he doesn't want us here most of the time. So PLEASE do NOT let your feelings be hurt if you did not get to come to this birthday party.... truth be known....you probably didn't come to last years either. If Alex could have had his way with me and Randi.... we wouldn't have been allowed either, lol! The homecoming party is what you want to be at... when he is of right mind... can appreciate all you have done for him and realize the extent of it. The Alex that is here today is NOT the Alex you remember, trust me. I have said this before and I will say it again... I AM DOING THE BEST I KNOW HOW. There is no book on this.... right way or wrong way.... I am taking it one day at a time, living for THAT DAY..... that precious day that I get one more of.... with my handsome boy. I am physically and emotionally drained after today....please understand the stress that I am under with what I have been dealing with for the past 81 days. I am doing what is best for Alex and his recovery. Walk a day in my shoes. Put yourself in my position and then ask yourself what you would do... how you would react..... what you would say.... YOU HAVE NO IDEA WHAT I DEAL WITH ON A DAILY BASIS..... every second of every minute of every hour is a NIGHTMARE! There are good moments and funny stories... but the reality of it all..... A PARENT'S WORST NIGHTMARE and noone should question me on any of this.... especially because you didn't get invited to a birthday party. Needless to say, my day home much of it was spent crying with Alex questioning why. So be prepared because now... he really feels like he has a reason not to see you.
I give huge props to awesome hubby Chad.... he tried his damndest to make this the best possible day for Alex despite what was going on from the get go! He prepared Alex's favorite... home made chocolate chip pancakes and bacon for breakfast and his famous chicken alfredo for lunch! Alex had him hopping all day and he didn't sit down once, lol. In between the pancakes and alfredo.... he asked for a pb& j sandwhich... soooo alex basically did what he said he would do and ATE the whole time he was there, ha ha. THANK YOU CHAD... I LOVE YOU AND APPRECIATE ALL YOU DID TODAY FOR ALEX! He really enjoyed his feast today and you know food is his passion right now!
Sarah and Shelley brought our new addition, SUGAR, who is adorable, half malty pooh and half tea cup yorkie and I can't wait till we are all home for good! She is precious and just the sugar that I needed to brighten my day. THANK YOU THANK YOU THANK YOU... we can't wait to have her for good!
All in all a very stressful day with feeling like IIIIII hurt someone's feelings or upset them because of a birthday party they were not invited to. I had a HUGE wake up call today and an overwhelming reality check..... my boy may NOT be walking outta here. Tears now pouring as I write this because as positive as I try to stay... it is a realization I have to come to! My house IS NOT ready for Alex in a wheelchair and here comes another stress load and a whole new ball game for me. I am scared... I am worried... I don't know what I will do when Randi goes home of which is drawing near at the end of the month! I feel like I need a part time nurse, cook, maid etc. I don't have to cook here, do laundry or take care of Alex's medical needs ie. trach, gtube, bath etc..... I am exhausted NOW... how in the heck am I EVER going to be able to do this on a daily basis BY MYSELF??? My BRAND NEW HOUSE has to be revamped.... bathroom doors changed...carpet ripped up... bedrails... monitoring system so that I can hear him in his room from my room.... heck, who am I kidding... you know my behind will be sleeping with him, lol. STRESS....STRESS AND MORE STRESS.... ON TOP OF.... His 3rd brain surgery possibly this week! I remember how draining the last surgery was that lasted almost 5-6 hours..... some of the longest hours of my life... to have to sit thru another brain surgery again makes me want to admit myself to the coo coo ward right now!! Even though I know this is a routine cranioplasty.... still nonetheless... ANOTHER BRAIN SURGERY on my handsome boy whose hair is growing back so nicely only to shave it off again! I have to pack up this room as we are outta here no matter what on Friday....whether we go directly to Shands or home first and then surgery next week.... CHANGE IS COMING.... my comfort zone about to demolish and patience to be tested.... along with my faith. Sooo if you are having a bad day.... think of me... think of what Alex, Randi and I go thru on a daily basis.... what is yet to come and the challenges we are now facing. You think you have it bad? Maybe it's not so bad after all.... I would gladly change places with any of you for one second to have my life back!
Lord, I am weak right now... Satan is attacking me left and right in more ways than one. Me, You and Alex... we stand strong in our armour.... together we will conquer all of the obstacles still standing in our way. I know that you have a plan for us... I do NOT DOUBT that for one second. We have come so far in such a short time of which is in your hands and on your time schedule. Alex has made remarkable recovery and I am so very very thankful that you made this possible. I ask that you wrap your arms around us.... give me the strength and determination along with Alex to get thru these next few weeks that we will be tested. Make our transitions easy and painless. I pray that you make Dr. Vitarbo's schedule available to operate on April 1st or 2nd so that we can go from Brooks to Shands and then home. I pray that you are guiding her hands when she performs that surgery and trust that you have gotten us this far that you will only continue to bless us by making his recovery a speedy one. I pray that you give Alex the determination to be strong this week and miraculously WALK if it be your plan..... at least with a cane to where only minor modifications need to be made on my house. I ask that you plant a sweet spirit within him so that our days are more pleasant than most. Let your light shine thru me.... to reflect on Alex.... we are your vessels and I know that we got this beat! THANK YOU GOD..... THANK YOU SO VERY MUCH FOR ONE MORE DAY WITH MY HANDSOME BOY! Thank you for your many many blessings that I may take for granted on a daily basis but know in my heart that I know you are responsible for those blessings and that I give you all the glory, honor and praise! IN JESUS NAME I PRAY.... AAAAAAAAAAAAMEN!
I do want to take a minute and thank each and everyone of you again for the thoughtful support, generosity and love that sooo many of you continue to pour over my family. The prayers and encouragement are food for my soul and keep me sane. Words cannot express how thankful I am nor are there any words great enough to explain it. Please know that nothing goes unnoticed and every deed is noted..... Alex will fully recover and one day will understand it and appreciate it as much as we do. Until then, please be patient, try to understand what he is going thru... GOOGLE BRAIN INJURY, lol... that's what he would do! I love ya'll and again am truly sorry if anyone is offended or feels left out... I can assure you it isn't intentional and you should not take it personal. I have alot on my plate and don't know if I am coming or going. My family is in a million different directions and I haven't been home in 80 days until today... day 81. I pray that you can have some compassion and see the whole big picture of things...... IT'S ALL ABOUT ALEX!
PEACE~LOVE~N~THUMBS UP!
Lisa
