“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.” - Helen Keller

Human sex trafficking

WARNING...This first video shows girls in underclothes, but they are covered. The end is what really should smack us with the reality of the depth of sickness in this "for profit" business. What have we humans done with an act that was designed by God to be a beautiful expression of love between a man and a woman in the commitment of marriage?








Did you even know about human sex trafficking? Did you know that it is going on in Ohio? This is beyond shocking and something that others need to be made aware of and then DO SOMETHING to try to stop it first, and second, to try to help those that have been involved in the sex for sale ring(the victims). To all the young girls out there....you are so much more than a body to be used. You are so much more than a thing to be used for profit....no amount of money can fill the emptyness that can come from feeling like you were just "used" for a fix! Please take the time to watch this video about a safe place for those that have been rescued or chosen to escape. Our children are way to precious!!!

The Truth about Heaven

If you want to know about heaven, be careful where you search to find out about it. Many are taking such glorious things as God's home and trying to spin stories(that they really believe) and sell for enormous profits. It is sadly working ...or so it seems. I wonder what God is thinkging about the latest genre of books that "christians" are packaging and selling. I know the one that my son, Alex, is named in, was never told the book was going to be packaged as a near-death experience(nor was I his mother), focus on supernatural events, and have his name on the cover...NEVER!!! He told some adults to NOT talk about that stuff and he knew why. Do you???What extent individuals will go to for a sale:(

Quite the Accomplishment

On Friday, May 10, 2013 the alarm clock went off very early for Alex and I. Alex needed to get to school for a school assembly. It was an awards assembly and he had been told that he was going to be receiving two awards. The assembly would be starting at 8:00A.M. which meant that we would have to start Alex's morning routine really early in order to try to make it on time.

Alex's morning routine takes at least three hours. That means that it takes at least three hours to just get him ready to get up in his wheelchair. We have made it in  2 1/2 but ALL conditions were right and we had rushed. Three hours is an average time. There can be mornings that go slower. A great part of the reason why his routine takes longer is because of the need to do respiratory care including  a good shaking from his shaker vest to mobilize the secretions in his lungs. I also get Grace and Ryan up and ready to go as well...like a "normal" morning in most homes in America:)

Well, on Friday, the alarm went off at 3:55 A.M., I got Alex ready,and off we went. On the way there Alex mentioned how far he had come. It was just a few short years ago that he was bed bound. He had to lie completely flat and the doctors thought that he was on the decline and would not make it. And, that was not after the trauma of the accident, it was after his massive back surgery. So going to school to get two awards for academic achievement was incredible and quite the accomplishment in and of itself, but just being able to go to school itself was something that very few people really get how big of a deal it was.

This is a video that ALex and I made to try to entertain ourselves in the hospital in 2010. You will hear alarms going on which they were doing ALL the time. His blood pressure and heart rate were going crazy. He could not eat solid foods and had to live on nutrition shakes for several months(at least he did not have to go back to tube feeding like some thought he may have to). He also could not tolerate anything behind his head or touching his head. We had not yet learned of the "extras" of PICU(like hairdryers and game systems)until we did this video and put it up. A PICU nurse came in and laughed and introduced ALex and I to some of the finer entertainment and extras of their establishment. (A little PICU humor there)



Way to go son!!!Keep working hard and perservering!

Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love. ~Mildred B. Vermont

No language can express the power, and beauty, and heroism, and majesty of a mother's love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star. ~Edwin Hubbell Chapin

(Isn't that true! What lengths we will go to to fight for our children!)

My own mom, Mary E. Nachman,  was a lady devoted to others. She loved us, her children, and modeled love for us in the way that she was with others. Mom was a caregiver herself. She started to take care of others as a young girl. Mom was the one that inspired me the most as a small child and I wish she were here today to say thank you. She had no idea what a foundation she was laying for me.
I would watch her and want to be like her.

My mom not only thought of the present generation either. Before she passed, she wrote out a note that I still have. It is a note expressing her love to the grandchildren that she had got to meet and those that may come after her death.

I pray that you had a mother that gave of herself to you. The gift of sacrificial, unconditional love is a priceless gift, and one that if you receive it you are truly blessed. If you did not, take heart, that kind of love is always available...it is the same kind of pure love like the kind God gives.It is the kind of love that no monetary amount can match for it comes from the heart and is given expecting NOTHING in return! God bless the mothers out there and those that have been mothers to others who needed to feel loved.

Happy Mother's Day!

This was typical of my siblings and me. We loved to be next to my mom when we were young. That is me standing on the drawer.

This is a picture of my mom(sitting in the chair) and her dear friend Grace Chu. Grace lived to be 99 in American years and 100 in Chinese years. She and my mom took care of one another during their time lving in the nursing home.



My mom was well enough to make it to my wedding. The dress she wore looked so pretty on her. This dress would end up being the one my mom wore at her funeral.

My mom got to have her picture taken with Santa Claus:)

My brother either had the measels of chicken pox. Mom still made sure he had a birthday party complete with a homemade cake. Yes, that is me with a pacifier in my mouth.

My dear mom. She must have been at lunch or dinner at the nursing home where she lived the last almost nine years of her life.

Mom made usre she ALWAYS dress up for Halloween.

I Can - - The Bill Miller Story

Did you know that someone who can not use their own hands to bowl can STILL bowl? Check this out...



If you want to know more about the IKAN bowler click here

Unholy Trinity

Unholy Trinity
From the ministry of Grace to You and pastor John MacArthur. Those that claim to be followers of Jesus Christ should be deeply concerned over the tremendous amount of "false teachers" that are seeking to extract what they can from the weak and the poor. They are teaching their version of the word of God.  These false teachers will (and are) taking what they can to feed their lusts. They are greedy and ruthless in their pursuit of fulfillment of self!

When you want to blame the public schools and, more specifically, the teachers for what is happening in the education system, think of this quote.... •"You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."
- spoken by Atticus Finch, by Harper Lee, To Kill a Mockingbird
The teachers, nor the schools are the problem, take a good look around at the world right now......now think of standing in front of a classroom of students that have been living in the society. A society that has turned wrongs into rights. We have morally declined. Could that be a bigger reason for the education issues?

I am full of questions today. I am wondering why we are getting away from teaching our children cursive writing? If we have taught cursive for multiple generations, why are we suddenly finding the need to stop it? Isn't your signature unique to you? How will we sign for cashing checks? How can we read older documents like this one......

 

Will we need a translator for something that is still English? I correspond with some ladies that are much older than I. Should I send their letters back when I receive them and ask them to please print for I can not read in cursive? My mother wrote out a letter before she passed away that she wanted each of her grandchildren to receive. She wrote it in...you guessed it...cursive! A teacher suggested that we are creating a borderline illiteracy. Are we??? Please continue to teach cursive. or if you are still doing so, please continue!!!I guess I am getting to be "old-school" in my thinking. Hey, I still have a regular phone directory written out instead of having all my contacts in my cell phone.

Why do we push our students to use a mechanical calculator for even simple questions like 4+3, when God gave us a fantastic calculator in our head? One of the things that I have found out from scribing for my son, Alex, is that every extra step is a possiblity for error so why then would we purposely add them?

Question?

Question???Why is it that we can read books in school that use curse words,  use  God's name in vein, and carry an angry/hate filled tone and they are not considered offensive material, but yet to read even exerpts of the greatest book ever written that has NO offense language in it at all but instead promotes love and kindess(the Bible), is some how considered offensive? Hummm...

Savannah's Life with Juvenile Arthritis (JIA) (JRA): Savannah's JIA Journey ...From the Beginning

Savannah's Life with Juvenile Arthritis (JIA) (JRA): Savannah's JIA Journey ...From the Beginning: People often ask about Savannah's diagnosis with Juvenile Arthritis...how it came about, her symptoms,  and so on.  I started a private ...

The reality of motor vehicle accidents....

The high school where my son Alex attends did a mock accident this past week. Have you ever been to one? Wow, was it tough to watch. I was not even going to go tho the reenactment until Alex said he was ok with it. I was the one who was afraid of how difficult it would be to see. I have been though a lot with Alex but I am usually hands on in the scenerio. On November 14, 2004, though, I was not actually at the scene. I did not have to see my little guy strapped down to a stretcher  with his head and neck immobilized , and with a tube down his throat and some stranger squeezing a bag to breath for my son. On that day,  I was thrust into a new reality that I had never before experienced, but I was spared of seeing the actual accident scene and I have always been thankful for that. I knew seeing even a "fake" scene would be challenging, but boy, I really was not prepared for how difficult it would end up being.

This past week, when I saw the cars, watched the teams of first-responders, heard the helicopter, my heart not only beat faster, but it hurt deeper. I can not fully express how difficult it was as it was for many of the students that were there. That is the intention of the "mock" accident though. I is meant to seem real and portray as much of the reality of an actual accident as possible. I was asked if I wanted to say something and I did. So I went from hesitating to go at all to standing up and speaking.  One reason was the impact that I knew it could have on some of those young lives, and also because a majority of the students did not know that ALex was injured in a car accident, they though he was born paralyzed.  The  now know different, and many of them came up to me afterward. One young girl was a fellow six-year old on the morning of the accident. She had been bouncing around with Alex a few short hours before she heard that the helicopter was for her buddy. She was bawling after the mock accident. All the feelings that she had experienced 8 1/2 years ago had resurfaced and it hurt!

I am putting up a video of the first part of a mock accident that was recorded at a school somewhere here in Ohio then I will talk a little more about it.
Here's the video....

<iframe width="560" height="315" src="http://www.youtube.com/embed/yUesT6uxfB0" frameborder="0" allowfullscreen></iframe>

You can see in the video how the mock accident is set up to try to simulate as much of the reality of the situation as possible. Notice how many people it takes to help at the scene, think about the others that will be involved after the accident be it at the hospital, funeral home, physical therapy, rehab, and the numerous people that will be impacted when they hear about their friend or loved one. A split second decision can suddenly thrust multiple individuals into a position that no one would want to be in.

When the accident happened that my son and husband were involved in occurred, I was at home with my other three younger children, four, two, and three days old. I was on the phone with my husband who was telling me that he and my son had stayed after church to talk to some people and then were investigating the area when the phone suddenly went dead. I tried to call him back but did not get an answer. A few moments later, as I was changing the diaper of my newborn, the phone rang. I could not get to it so I checked the caller I.D. as soon as I could. The I.D. said "Sheriff's department." I thought that was strange but did not have too much time to think about it for moments later  the phone rang again and it was my husband saying that he and our son had been in  serious accident and that our son may not be alive. No one wants to receive that kind of call, and NOTHING can prepare you for one.

I could write alot more, but I really wanted to, in this post, talk about the reality of accidents. They are that, accidents, however, the decisions that are made may forever impact the lives of multiple individuals. I know that  sometimes things just happen like a deer jumping out in front of you, but in many situations it is a decision made that the effect is an accident. Please think before you get into a vehicle.

 I told the students at school that if they are on the road and someone tries to cut them off...let them go. Do not battle for position. Do not mess on the road!  If you get into a vehicle, remember if you would get into an accident, it is not just you that will be affected.  Do not text...please..or try to put on make-up, etc., please focus on the road and those around you or this is what you could face........



                                       

Accidents result in death(which is final here), minor injuries or no injuries, and then everything in between. My son Alex is a reminder of the in between. He faces challenges each and every day as do those that love him dearly. This post is serious for a reason...please think!

                        
                                             









         This is a picture taken from Google Images from the car

         accident where Alex was a passenger  in the back seat.

        He woke up that   morning a healthy energetic, six-

       year old but a few short hours later he would have to be rescued from

       the car that he had climbed into not giving a thought about the

       possibility that his next memories would be of waking up in a

       hospital not knowing anyone there, being unable to breath on his own,
       and unable to move

 

                 This is a picture of Alex around Christmas of 2004.        

                 A dear nurse dared to be brave enough to get him

                 dressed and up in his chair. (Man was it difficult

                 walking into his hospital room the first time and

                 seeing a wheelchair and knowing it was for my

                 son. WOW!). Alex is still in a coma in this picture

                 so even though he would open his eyes, his brain

                 was not yet able to process what it took in.

                                                                



Vt. woman disfigured in attack reveals new face | Yahoo! Health

Vt. woman disfigured in attack reveals new face | Yahoo! Health

ALex Malarkey Update

First....
I am NOT involved with, or desire to be connected with, the book titled The Boy Who Came Back From Heaven.Yes, I am the mom of ALex Malarkey who is NOT an author, nor does he have or has he ever had an agent!Any questions pertaining to any said experiences that my child did or did not have are for him and only him to answer if and when he desires to(or feels he is supposed to). Right now...he is a kid!Please be careful what you are reading and what cause is benefitting from your purchase of it.



I have seen so many things on the internet about my son, Alex, most of which is being said by individuals who either do not know my son at all, who have had very little contact with him(but claim they have), and certainly none of them have taken care of him. How then can you claim to be able to answer any questions about ALex let alone about things that are said to be his story? And what is his story?? I see videos on youtube with my son in them and curse words throughout the comment section beneath it. Man, that hurts! If I put up a video I make sure to set it so that either all comments are moderated, or I do not allow comments. Why would you not do that?

ALex does not like going to the local Walmart, or even his little brother's musical because of the way people approach him. They approach him as if they really knew him and knew what all he has gone through. They think he talks to angels and goes to heaven on a regular basis. Who he is is ALex, a young boy and a very articulate boy as witnessed by those that truly do speak to him and relate with him but not one with supernatural abilities. He spoke once publicly on his feeling about the book that is out with his name on it but his voice has been pushed aside. I even heard the words used when referring to my son's speaking or not speaking on what is supposed to be "his" story, as being a "moot point". Why would it not be important to hear what Alex has to say? Wouldn't the person who actually experienced something need to speak to kept it straight? Do you remember the game of telephone?? One little slip can throw a message WAY off!


SO then I would have to ask, if Alex is not "speaking" then is "he" speaking? I heard several people say that Alex is a missionary....really???The person(or people) try to say that he is speaking through the book all over the world. Ok...How???Missionaries usually go out on mission trips correct? Well, Alex does not leave the house much except to go to school ten minutes from home. I see on pages on facebook where people actually think Alex is writing and giving insightful messages or commenting on messages that people think are going to him. He is not.


Ask questions....Why have we become a country that has so lost sight of wrong and right? Why do we not ask questions if something just does not seem to line up? Why do so many not look out for each other but are more interested in taking what they can get without working for it.?? Are we even willing to use God to get what we can get in this life??? Do we push kids aside and use what we can from them to benefit us? What is important these days???What is valuable???What is truth?

With that being said I wanted to answer the question as to why I am speaking out on this blog??..I am a mom and I hate children being messed with, taken advantage of, and truth being twisted. I hurt deeply for those that are afflicted, oppressed, weak, sick, etc.. If I continue to keep quiet, it would be assumed that I was in agreement with certain things that I strongly disagree with. I only wish I could have and would have spoken earlier....I can not go back but I will move forward....


I have been blessed with four precious children and I take that role seriously. On November 14, 2004 my role got taken in a direction that I could never have imagined but one which I embrace fully...that of a caregiver( I know..aren't all moms caregivers you say). I have stood by my son Alex 24/7 trying to do whatever I can to keep him healthy, to protect him, and to help him to grow to be as independent as possible even while he may be physically challenged to the degree that he currently is. I can not, and will not, ever claim to know what it feels like to be in his position, but as his caregiver, I know what it feels like to watch him in his struggles. I will NEVER understand how anyone could take advantage of my son, but sadly, some have.


So...How is ALex Malarkey?ALex has a very difficult set of injuries which means the his day to day life is full of physical challenges that most people can not fathom enduring. Simply waking up in the morning means waiting on me to come move him and then go through the 2 1/2 to three hours at least to get ready for the day. Every time he wants to move his head, needs his nose scratched, eyes wiped, etc., means waiting and asking for the hands to do it for him. Breathing is done by a two machines...his ventilator and diaphragm pacer. Despite rumors that he is breathing on his own, he is not nor has he since he was injured in 2004. ALex stays in bed on the weekends as to try to rest up for the week of school. I go with him each day and am his "aide". I can do way more than any paid nurse/attendant could do without having to wait for a doctor's order. No, I do not get paid! When Alex needs help, he needs it immediately and sometimes more than what a regular nurse/aide could do. See, depending on the certification, some nurses are limited in what they can administer to a patient. All nurses have to make sure they have an order to give even an aspirin. Alex would get in real trouble if he had to wait for a doctor's order to get O2 at the level he needs it when he is struggling. I also have the ability to turn the support up that his ventilator gives him if he needs it where again, and nurse would have to have an order and get the ok. I have the parameters of what is the safe spot to turn the dials, I just can give Alex the immediate help which is what he needs. ALex does not support his head much on his own at all and is not able to feel beneath his chin...not even all of his face. His neurological system is just interesting!He is, though, cognitively fine, he just can get really tired very fast. There are times where Alex's brain seems to just go to sleep. I have to call him back. He is currently taking four classes at the school and is doing three online classes from home which are self-paced. We go to school and back but can not freely go galavanting around town because it is cold and ALex's body does not like cold. We can go to school because I wrap him up very well, back the van up to our garage, and back right up to the door at school to unload him. I could go on but would lose you if I have not already for I have become so used to many medical things that I forget most of the world may have not even heard of:) Bottom line...his life is full of challenges with just dealing with his injuries.

AS for the past few years...I have written several posts on this blog about some specific times especially during 2009/10 when ALex's health really was not good and he ended up bed bound and home bound. When he was bed bound, he could not even sit up or have anything behind his head and when he was home bound, it was he and I and it was for 18 months except for hospital visits. We were pretty shut off from the world except for our dear friend Wendy who came twice a week to do physical therapy and hear both of us talk nonstop with pent up emotions and frustrations. It is also so difficult to not be able to go watch the other three in their activities, but I do know that they can still go out and they can still participate whether I am there or not.... it is different and tough though:(. I used to cry every time my other kids left but then you learn to grieve and let it go. Many people have to walk a different path then the majority of the world. Many times it is those individuals that come to carve new roads for others with challenges either by discovering new ways to do things or new devices that can help those facing challenges. We may not understand it if we have not experienced it ourselves and that is ok. We may have even critiqued people in situations(I used to until I experienced more challenges myself), and that is ok too to an degree. This life is about learning and growing, and we can not do either without making some mistakes along the way right?

Quick side note....Yes, I still believe my son will recover and it will be because of God. Even if there is a medical intervention, God made the brain of the man or men that come up with the intervention so the credit still belongs to Him! Yes, God is ALWAYS good even when the challenges of life are not. Humans can fail us but God will not! And God is the ONLY source for absolute truth!


For now...ALex is alive(I saw someone googled his obituary), he is just a boy, he is not a prophet with special messages, he is not a missionary, he is not answering questions or writing on any public pages, he is not getting paid(he can not, he is on Medicaid), or any royalties from any writings that he has supposedly done, and he does not, nor has he ever had an agent(I know there is an agent that is written about that claims represent Alex. I still can not get an answer as to whether or not my minor, dependent, child is on any legal contracts. ALex has a life full of some tough challenges(that does not mean all doom and gloom but the reality is that it is difficult!), and his name is ALex Malarkey not the boy who came back from heaven(please do not call him that).


I will close with a few things to think about. If Alex wrote a book, why is has he not spoken himself in public to confirm the story? If Alex is the author, why are there not pictures of him on the fan page of the book? (There are a few videos but I am talking about pictures that have come out to support the book) Why are there not updates on the page that truly tell how he is doing? I mean the challenges, the triumphs, etc.? Alex is injured, he deals with a tough reality each and every day. God has not just taken away the challenges(He could but out world wants instant everything don't we), but He does give us the strength to go forward and through those challenges. And lastly, the only video that has ALex speaking is of him speaking while he is in bed, looking down,, and not smiling....hum....I am a mom and my dear ALex strengths should be recognized not capitalized on!


As for what Alex has seen, not seen,(remember Alex was 6 1/2 years old when he was injured) etc, I think Phil Johnson of Grace to You said it well when he sent me this,

"
"Short answer: I don’t think Satan was messing with Alex’s mind in the aftermath of his accident. In fact, I have no question that angels were ministering to Alex during and after the accident (Psalm 34:7; Hebrews 1:14)—not to reveal some extrabiblical truth about heaven and the afterlife; not to equip him with some specialgnosis to enlighten the rest of us; but simply to comfort and strengthen him and see him through a life-threatening ordeal. That’s the kind of ministry Scripture says angels have been given.



It’s also likely that his own dreams and human imagination were blended in Alex’s memory of the experience, so that he can’t reliably differentiate between what really happened in the spiritual realm and what he dreamed or imagined in those dark hours and the aftermath. It’s not a problem that he can’t make perfect sense of his experience. As I said, the ministry of angels is not to enlighten us with secret truth that no one else has ever seen—but to minister comfort and help to us, especially in times of extreme crisis (Psalm 91: 91:11-12)."



Phil also said, "So no, I don’t believe Satan specifically and personally targeted Alex and caused him to have confusing experiences. Where Satan comes in is in the exaggeration and misinterpretation of those experiences."



We adults have to be very careful what we do with information that is shared with us especially when it is spiritual.......



There is only ONE source of absolute truth...God's word!



John 3:13 No one has ever gone into heaven except the one who came from heaven--the Son of Man


This is a picture of Alex taken in late 2009. His back had a curve of about 90 degrees. he could not eat or sleep. His weight had plummeted to 55 pounds. While a book was being worked on, Alex was struggling.....mightily!




I made the following video for Alex's thirteenth birthday because he asked me to. In making it, I wanted to make sure that in the video I reminded him of the faithfulness of God, that God did and always will care, that God was there and always would be there for him, and that even though humans may fail us(they are human and limited), God NEVER will! God cares and God IS love!

Carly Fleischman

I saw the following video a few years back, but it is circulating now on facebook. It is a video about a young girl named, Carly Fleischman. Carly is autistic. It was thought that Carly was not able to communicate, or even able to comprehend much at all. That all changed one day. I will let the video tell the story. If you want to know more about Carly, autism, and/or purchase her book,(I have not personally read it yet but plan to) you can find her on facebook, and she has a webpage. Click here to go to her webpage. Raising awareness and education is key to helping individuals understand some of the very real struggles and issues that exist right next to them. If you think you do not know someone who is has autism, maybe you just not know that you do!

Alex Malarkey Update

If you have found this blog because you googled my son, Alex Malarkey, please check back. I had an update post about Alex but realized that it could use some tweeking. I will work on it and get it back up. Please know that this blog is not a page to come to for ongoing "things" about Alex only. Alex is, first, my oldest child but not my only child. I have four children and love and care for each one of them. This is also not a blog that is just about my kids. I get on here and write about all sorts of things. I certainly am not on here because I am a writer by trade(I think you can see that )but I have learned a few things on this journey through life and the internet can be a fantastic means to share those lessons with others. Ok...check back...

I looked up this word today... em·bel·lish·ment a fictitious addition, as to a factual statement. A true experience, event, statement can be so "embellished", that is becomes hard to distinguish what is actually true or not true. A very insightful soon -to-be fifteen year-old, just added, "it poisons it and the purity of it." INsight from a young man whose stillness has allowed him to see things in a much deeper way.

Steeler Parking

I love the hearts at the local school. This sign was waiting for Alex in his "spot" where I park him in one of his classes. Isn't this cool! ANd the individuals that made it are not even Steeler fans!

"Running Errands with my Mom" - Cartoon Network

The following video is absolutely hysterical! Well, atleast it is to me. One of the students at school brough the video to my attention and said, "This is for you Mrs. Malarkey." This is so what Alex goes through with me:)I told him that I would absolutely do the dance move that the mom does at the end of this video:) It is cool to run errands with your mom! Hey, and we have a giant 15-passenger van not even a minivan!SO we have more of a truck or semi!

Interesting week...

The above picture is a suction machine. The importance of the picture will be explained as you read the following post. I just pray that if any of you are in situations that seem beyond your abilites, know that I was you:)MOst of us can do so much more than we think we can it is just sometimes there are options to not even try so we do not. You have to know that I can not do what I do if God does not show me, guide me, and strengthen me. My abilities are the ones that He gives me for that which He asks me to do. Ok...here is the week in review... It was an interesting week at school for Alex. First, he was supposed to take the practice OGT's(state tests) but there are still some kinks to work out for him so he did not have to take this year's. On Monday night, Alex kept having muscle spasms while he was sleeping. If you have not seen Alex's spasms, I would describe them as looking like the giant windsocks that are used in front of some car washes. The windsock just goes all over the place. Well, ALex spasmed about every 10-20 minutes ALL night. He (and that means me ) did not sleep much at all. We did make it to school but he could barely make it, so we ended up leaving early. He does not even remember seeing the last teacher. I was actually the one that had encouraged him to go. He had asked to stay home which is so not like him so I thought that he might be getting really sick. We came home and he rested, slept well that night, and did great the next day. That is how crazy it can be with Alex's injuries. On one day of this week, we were at school and a really important piece of equipment for ALex went out. For those that want to know, it was his humidifier and he HAS to have it. His lungs will very quickly start to dry out without his high heat and humidity. Well, fortunately, we have two of these devices, so we left school, came home, and got him on the back up one. I called the respiratory company but they have had several patient's humidifiers go out so they had to order a new one in for us and it would take a few days. SO we would wait. The next day, I just used the back-one on his chair. It is inconvenient but do able. Ok, so we are at school yesterday and..yep...the back-up humidifier goes out. I called the respiratory therapist and said, "Help!" She was kind enough to bring us one that they had there at the office that they were going to use elsewhere but since we were in crisis, she would bring it to us. She brought the humidifier so things were then ok. Then today happenedALex and I were sitting in class and he started to need his airway cleared. Well, the boy does not like to miss anything so he waited until after class. Obviously, he was not that bad yet or I would have just taken him out. Class finished and I took ALex out into the hallway to suction his airway(clear it) and guess what? The suction machine would not work! UGH!!! I call into the teacher and asked him to go to our van and get the back up machine that I had with us. Again, most people do not have back ups. We have been doing this for eight years and have bought some things on our own and acquired other pieces because people have unfortunately passed on and their equipment needs a home. I have learned(the hard way) to have back ups of as much as I can. People used to question if I needed to take as much as I do. Most that know us do not question any moreThe teacher ran back in and that machine did not work. I sent him back out again to the van while continuing to keep Alex as comfortable as I could. I do know an emergency way to clear his airway that you do not need a piece of equipment to do it, but it is the way of last resort! The teacher came back in and by this point there were a few teachers around us concerned and wanting to help if and in anyway that they could. I had sent for one of the staff members who used to be an EMT to see if she had a machine. and to double check with her if the "emergency way" that I knew of was correct in case I needed to use it (basically the emergency way is that I would use the tube I use with the machine but ...don't gag...I would have to suck the junk out of Alex's airway with my mouth....see why you do not want to use that way). Ok, so, a few students were also there that wanted to make sure that ALex was ok, and they were not budging until they knew he was! (Did I tell you how much I love the kids and staff there at Indian Lake?) I ended up having to take Alex to the room where there is a hospital bed, get him out of his chair, and position him on his side.(that helps the junk to loosen up) I got the junk out, got him he got back up, and the boy was good to go. He started jabbering away like normal. I tell you...my Alex is such a courageous kid! It is late on Friday night but I wanted to write this. I am finding out more and more just how precious the hearts of the people(adults and students) at our school are. Today was a minor incident that could have been a major and we all did ok. I sure do hope that we do not have to do a major, but if we do, some individuals got a little heads up with today's experience and everyone did fantastic! This mom wants to say and big THANK YOU! When I posted this on facebook, a fb friend who has a child that is on a ventilator wrote that she was going to get a back-up suction machine. I wanted to clarify first, that is was actually the chamber that is used with the machine that was the problem but it took me so juggling the chambers between machines to figure it out. If you look at the picture that I posted, the chamber is the clear container. The lid has a special device bobble thingy inside of it and if something happens to it, the suction will not work. I keep a back up chamber in the van. I also carry two oxygen tanks(a friend's o2 leaked out of her tank when she went out on an out of state trip so now I carry two as a precaution), I carry a very large emergency bag that has a full back up vent circuit(with every connector piece too), extra ambu bag(yep, had one of those not work one time)trach on his chair, trach in the bag, etc. Basically, whatever I can fit in the my bag and van to have with us, I take. I have learned, like I said, from getting into situations. My motto is to try to avoid crisis. Crisis is not fun for anyone involved so if we can avoid it, we try to. Alex and I have been through so many situations together that we have learned so much. If you are going to venture into an area that few have gone before you, you will have to get a little dirty and sweaty in the process. Being at home on a ventilator is a relatively newer thing. Being home and going out into the public on a ventilator is even newer. You can not run to your local Walmart and purchase most of the items that we need if we get in trouble, and if we get into a situation it does not always mean we need to go to the hospital or call an EMT. Those of us that are doing these kinds of journeys have to think and do things that before were only for medically trained individuals and be prepared for emergencies when(not if) they occur. Carving roads.....may the ones behind you have a bit smoother path because of your willingness to persevere and believe!

I See You!

A few fun videos....

I was looking through some old flash drives and found the following gems: This is a video of Ryan on his first Christmas. It is just a few short seconds of his precious baby cry:) I love newborns! And this video is of Ryan on Thanksgiving Day 2007. He had just turned three years old. In this video, Miss Grace takes full advantage of her little brother. Alex is in the background coaching things along. These are fun memories! Make sure that you check out the shoes Ryan is wearing! ANd finally, this video is of Ryan riding his first bike. He name his bike, RyRy Rocket. Yes, Ryan is wearing snowboots. Alex was the first of my kids to wear snowboots during the summer months. I do not know why:)

Calling out the wrong that someone is doing is not attacking their character...it is addressing the behavior. SO why do we have so many in the church gotten away from holding others accountable(or at least trying to)? I think we need to wake up for many are drifting further into wrong (justifying the wrongs and calling wrong right)and the results are showing!It takes courage to try to speak out, especially when it involves the church. The person speaking out will be most likely be persecuted but the wrong thing to do is to stay silent.

Dr. Forrest Bird

Have you ever heard of Dr. Forrest Bird? Well, chances are that either you or someone that you know has had to use one of Dr. Bird's inventions. One of his inventions are used every day in my home to help keep Alex alive , and we have another one of his inventions as an emergency device. He seems like a very humble man!

Kennedy Krieger Institute, Baltimore, Maryland

ALthough, Alex as not been able to go to Kennedy Krieger yet, we know many people that have gone there and have awesome things to say about their experience. Recovery from paralysis is not something that is impossible like it was thought to be. Recovery in individuals has happened and does happen. Check out the following video. And then this video of our friend Pat Rummerfield. "Hope begins with a belief in a possibility" - Beth Malarkey

Don't you wish that you could just to a mountaintop and speak your mind sometimes? I think that is especially the feeling when you know of something that you just wish others could see. Unfortuntely this world is not that easy nor would that necessarily work. There are steps that you take and information that you should gather before you just shout something out. And, sometimes, people just do not want to see something regardless of the proof that you present to them. A good example of that is how so many medical professionals still treat spinal cord injury as a non-recoverable injury. Although there is ample evidnece that recovery can and has happened, many doctors still teach the newly injured that they will need to learn to adapt to their post injury function and accept that as what they will have. Man, is that way of thinking outdated and incredibly difficult to understand how trained professionals can think they way. Ahh...the leaning process of this life....I am glad that God has taught me patience and helped me to see many things in a different way then I did before...although it has not been easy, I am very thankful!

Deitrich Bonhoeffer said, “Silence in the face of evil is itself evil. God will not hold us guiltless. Not to speak is to speak. Not to act is to act.”

Yep, that is my sister, Kris and little old me over forty years ago. My sister..wheew wee...she has stuck by me through thick and thin. She knows me and knows my kids. SHe would jump off a high mountain or swim a deep ocean if that is what it would take to help me or my kids. I love my sister. She is the one how can not even talk about November 14th 2004 because it is way too painful She had watched my Alex just a few days before the accident while I was off giving birth to Ryan. She had Alex, Aaron, and Grace...yep, the trio:) I will not talk much about that day for I hope that she reads this. I just want her to know how much I appreciate that we are sisters. I called her yesterday crying(not unusual). My sister has more than once answered the phone when I just needed a shoulder to literally cry on. My dear mom has been gone for over 11 years now so my sister is the one I call. My sister is the one I hid behind when I was a little girl. I was her shadow. When she now tells me how strong I am, I quickly remind her that it is God, for she more than anyone knows how shy I was and timid. WEll, yesterday, I cried for my Alex. He needs an oufit for a dance and getting an outfit for Alex is really tricky. I took him shopping twice and wore him out and we could not find a thing! I saw the disappointment in his face and heard it in his voice. My son does not have a sense of entitlement. He actually asks for very little and expects very little, but yesterday, he did hope to find a special outfit for a school dance. So I called the one who I knew would launch herself on a seeking mission. I called Aunt Kris! I told Alex that Aunt Kris was going to go look for an outfit to which Kris said, "oh no, I am on a mission to find and outfit." I woke up to texts coming from Kris telling me of her plans to go "find" and outfit. Later in the day I started to receive texts from her displaying different options of outfits. You see, Kris has learned how to use technology to take me to the action whether it is shopping or to her daughter's band competition(she once called me and let me listen to the band play their entire song...so cool). Kris..though you do not ask for it or need it...thank you. Did I mention that my sister lives an hour from me? Love serves and gives...thank you sister..I love you:)