Saturday, May 16, 2015

Back to dealing with Spinal Cord Injuries

When last I wrote on this blog, I had made a public statement. I am not writing now to further address the book at this time on this blog, but instead wanted to get back to addressing injuries, diagnoses, etc.. There are many individuals who are faced with the very real every day challenges of living with a spinal cord injury, traumatic brain injury, or other chronic conditions. I hope in at least a small way, I can do something to bring awareness to their situations, the needs they have, and challenges they may face. This is not for the purpose of trying to elicit pity for them, but to simply make others aware that the needs and challenges are there. The individuals who I have met who are challenged, do not seek pity or hand-outs, they just simply want to function and try to contribute to the world in which they live. As simplistic of a goal as that sounds, it truly can be more challenging to achieve then a majority of people realize.

Although I do not have a spinal cord injury or traumatic brain injury as my son does, as his mom and caregiver, I have always sought to inform myself as best I could about the injuries he has as well as to talk to others who are injured to try to gain a better perspective of what life is like from their position in an attempt to better assist them. This past week a very important electrical component broke on his wheelchair. The part will need to be ordered which means that his wheelchair is currently out of commission. Because of the level of his SCI(spinal cord injury), his TBI(traumatic brain injury) and the ventilator equipment he needs to have with him(ventilator, humidifier, and large car battery) he can not be put into a "loaner" chair. I asked our friend, who is an adult who is injured and so able to able to put into words how certain things he experiences(and others injured similar to him)might feel, if he could write something up about how the wheelchair is not just a mode of transportation.

From Scott Fedor - "Unfortunately, when the wheelchair is out of commission, so to are we. As much as we may not like living life in a wheelchair, at least it allows us to live life. When our wheelchairs stop working or prevent us from getting up and getting on with our days, it becomes another cruel reminder of how limited a spinal cord injury makes us feel. Having to lay around in bed while waiting for their wheelchair to be fixed is a frustrating experience that can be remedied with the proper support."

Thank you Scott. Our world in physically challenging to individuals with many diagnosis. There are many ways that those who are able-bodied can assist them...awareness of the realness of their challenges is a start.

Saturday, January 17, 2015

Public Statement


For at least three years, my son Alex Malarkey has been speaking the truth and pleading to be heard regarding The Boy Who Came Back from Heaven. I’m thankful to the Pulpit and Pen blog for posting Alex’s open letter last week and finally helping his voice to be heard. The sudden interest of the media has meant that many reporters are seeking to investigate the story and I would love to answer every question, but since 2006, I have been Alex’s only nonstop caregiver, and I also have three more precious children to care for. So I’m forced to say no to all interview requests. I hope people understand. The facts of the case are being heard, through sources like the Pulpit & Pen website ( and the Grace to You blog (

I do stand with my son and I’m proud of the courage he has shown. “I have no greater joy than to hear that my children are walking in the truth” (3 John 4).

I also want to correct one glaring error that has appeared in countless news articles over the past few days: I have not divorced my husband and I am not planning to pursue a divorce. Kevin and I are still married. My hope is that all of this can be resolved in a way that exalts Christ by honoring the truth (2 Thessalonians 2:14). That, likewise, has been Alex’s only aim in all his attempts to set the record straight.

“Now may the God of peace . . . equip you with everything good that you may do his will, working in us that which is pleasing in his sight, through Jesus Christ, to whom be glory forever and ever. Amen.” (Hebrews 13:20-21).

Monday, August 18, 2014

First 5 k!

In June of 2013 I heard about a special jogging chair that would allow my son ALex to able to experience the fun of running. I then heard about AInsely's Angels through a connection through a connection with a gentleman who now builds specialized running chairs for individuals who would not be able to go do a road race on their own.

Here is the post and video...

ALex got in his jogging chair again yesterday after standing first for almost an hour on his tilt table. He did great. We made it four laps on the driveway. I am posting a video that my Grace shot. She did a fantastic job!!!You will see in the video how steep our driveway is and how long. I want to go to the track at the school so bad. I know we could make it quite a distance. We are both going to build up so much endurance. ALex used his pacer only again while we were jogging/walking, and he said his breathing felt great. He only struggled when I put him back into his wheelchair. The change of position caused the struggle. I will have to put his wheelchair into a more reclined position the next time. We are making progress. Again, thank you to all who donated to help us to get the chair, to those who have prayed and offered words of encouragement, to Ainsleys Angels, who do an amazing job of trying to promote inclusion, and to Team Hoyt, who have inspired so many to get out there and run, feel the wind, just move. Here's the video....

Well, one year later after a lot of hard work, ALex and I were able to complete our first 5K race!!!

Monday, May 26, 2014

Memorial Day 2014

Though videos and Hollywood movies can do a great job at attempting to portray the reality of war, nothing can accurately help us to really even come close to understand the depth of pain that those that bravely sacrifice for us. A pain that they did not have a choice of stepping out if it, they had to perservere through and endure it for a freedom such as posting on here. The cost is high and few will pay it. God bless those that have and do!

My father was a veteran of the Second World War. He died 2 weeks shy of my 6th birthday of a heart attack believed to be caused by the stress from the trauma of his battle experiences. My neighbor was a P.O.W. Of the Korean War. I have utmost respect, admiration, and appreciation for those that have and do sacrifice for others in battles and life. I wish I could have known my Daddy longer...

Friday, May 23, 2014

2 Peter 2:10-19

English Standard Version (ESV)

10 and especially those who indulge[a] in the lust of defiling passion and despise authority.

Bold and willful, they do not tremble as they blaspheme the glorious ones, 11 whereas angels, though greater in might and power, do not pronounce a blasphemous judgment against them before the Lord. 12 But these, like irrational animals, creatures of instinct, born to be caught and destroyed, blaspheming about matters of which they are ignorant, will also be destroyed in their destruction, 13 suffering wrong as the wage for their wrongdoing. They count it pleasure to revel in the daytime. They are blots and blemishes, reveling in their deceptions,[b] while they feast with you. 14 They have eyes full of adultery, insatiable for sin. They entice unsteady souls. They have hearts trained in greed. Accursed children! 15 Forsaking the right way, they have gone astray. They have followed the way of Balaam, the son of Beor, who loved gain from wrongdoing, 16 but was rebuked for his own transgression; a speechless donkey spoke with human voice and restrained the prophet's madness.

17 These are waterless springs and mists driven by a storm. For them the gloom of utter darkness has been reserved. 18 For, speaking loud boasts of folly, they entice by sensual passions of the flesh those who are barely escaping from those who live in error. 19 They promise them freedom, but they themselves are slaves[c] of corruption. For whatever overcomes a person, to that he is enslaved.

Saturday, April 26, 2014

Questions to think about

Alex is now sixteen years old. Have you noticed that you can not find any interviews with Alex that have been done since the book came out? In contrast, have you noticed that Colton Burpo is and has been interviewing since the book in which his supposed "heaven-visit" experience is written about came out? What if Alex disagrees and has disagreed with the book? What if he had tried to stop something that he could not, at the time, quite define the wrong of it(but knew it wrong somehow)so tried the best that he could with his young mind but those that could stop it did not listen? He is not a little boy any more!

The Bible is sufficient! Jude 3 Beloved, although I was very eager to write to you about our common salvation, I found it necessary to write appealing to you to contend for the faith that was once for all delivered to the saints.

Friday, April 25, 2014

Justin Peters on Heaven is for Real

Brothers and sisters in Christ, for your edification here is part 2 from Justin's internet radio program dealing with the heretical film "heaven is for real." Please share

Colton himself is speaking more boldly on his so-called trip to heaven. Some people have asked me if Alex now believes he did not see heaven. Here's the thing, even "if" Alex saw something, should we just take it as so? If Alex said he made most of it up to get attention, would that make you then still want to believe that the story that is written, or would you think for a moment about him(at the time of the accident) being a young child in a very traumatic situation? Would you be upset with Alex? Would you try to prove that he really did see things even if he said he did not, or could not remember whether he did or did not? What if Alex himself suggested that the book that is carrying his name, claiming to be "his" story" and portraying him as having some "gift" to be able to freely come and go to heaven, talk to and see angels and demons, is biblically in error? But it is not said that ALex, or Colton, or Don Piper, or Jessie Duplantis just "saw" heaven, they are said to have actually have gone there and returned to tell us "new" things that are not in the Bible already. So here is a question, should we then believe what they say(even though each description is different)and then start writing new scripture? Revelation 22:18 18 I warn everyone who hears the words of the prophecy of this book: if anyone adds to them, God will add to him the plagues described in this book,......

Does everyone get to heaven?

By the way, the answer to the above question is one that ALex gives as a now, sixteen-year old not a young child, but also in light of what the Word of God says(which he searches daily)....No, ALex says he did not see heaven let alone go to heaven and come back, or does he have any "new" things to add to the Bible! I do not want to speak for him, be the voice for him, or answer questions for him, but I will defend him and defend truth! I will be held accountable by God!

Sunday, April 20, 2014

The Boy Who Came Back From Heaven...not quite

I never intended this blog to be a place that I would have to defend my son ALex's indentity let alone the journey that he and he alone has endured. I started this blog as a "fun" thing to do and with the intention of maybe sharing some hope and bits of wisdom that has been learned through the struggles. I have taken this blog down from time to time not sure what to do with it and NEVER wanting to make it appear as if any of the people that I write about are extraordinary individuals. The people that I write about and share some of their accomplishments(Scott Fedor, Steve Gleason, and Kory Wiita are examples)are people that got thrust into extraordinary situations and have chosen to embrace the struggles they face head on and work hard to something positive with those struggles. AS Scott said the other day to ALex, "the challenge does not mean a stop sign, it just means that you might hve to figure out how to do that thing that you want to do differently." WHat a wise piece of advice.

This past week a movie based off the book Heaven is for Real came out. I have not read the book, do not plan to, and am strongly opposed to the movie. Let's just say that the Burpo book and the book that has Alex's name listed as coauthor(The Boy WHo Came Back From Heaven),as does the Tyndale Publishing website(can not understand how that can be), have a few things in common which I will not get into on here. I am trying to defend my son and truth. Here is something to think about....

It is both puzzling and painful to watch the book The Boy who Came Back from Heaven to not only continue to sell, but to continue, for the most part, to not be questioned. I could post facts and try to dispel many of the things contained within the pages of that book(have done a bit of that), I could continue to try to point out how Biblically off the book is(a few strategically placed scriptures does not make a book Biblically sound) and how it leads people away from the bible not to it (have done that as have others including John Macarthur and Phil Johnson), I could talk about how much it has hurt my son tremendously and even make financial statements public that would prove that he has not received monies from the book nor have a majority of his needs been funded by it (a fund that was set aside by a friend a few years ago has actually been paying for most things in the past few years but that fund is dwindling), I could.....but it seems like many people want to believe what they are given despite the wrong that it may be doing or the wrong that was done in the making of it. When Alex first tried to tell a "pastor" how wrong the book was and how it needed stopped, ALex was told that the book was blessing people. Ok...first, ALex said that while he was struggling physically and trusting this person as someone who seemed to be concerned so the person was invalidating Alex's feeling while justifying the wrong that Alex was trying to make that person aware of. . The person told Alex to "trust" him. ALex is the ONLY one that supposedly had the experiences being written about(ALex was a 6 year old and coming out of major brain trauma...note I am not saying what is true and not just that Alex was a kid with major brain trauma which alone should raise questions as to validity) Alex is the ONLY one who has endured not only a horrific set of injuries, but having his journey capitalized on. His struggles are NOT past tense nor is the "story." The ones making money from the book are NOT the ones staying up through the night, struggling for their breath, or were they the ones at six years old, waking up unable to move or breathe and in a strange place after last remember seeing a car coming right at the car he was riding in. What I have walked through with Alex over the past nine years has nearly broken me personally and spiritually. I have wept so deeply for what I have watched my children go through, been made aware of how ignorant I was of some things, how selfish I was, and how Biblically illiterate I was which allowed me to be deceived! Sure, I had read my Bible ALOT, but I had not studied it. I had listened to teachings but probably enjoyed more ear tickling than I am still even aware of(for that I repent and have experienced deep sorrow) I am so thankful that God is so merciful and patient. I am thankful that God allowed me to go ahead and fall for the junk that I did(and it was that junk)for I am fully aware of what it feels like to be pulled in. There are many who are scamming and using the Word of God to do it. They are good, especially if you are not digging into your Bible and truly studying it. They study their audience and even read "success" books to try to build better and bigger..."ministries/businesses". Please, examine what you see and read. I see many things from a different vantage point because of how much I have witnessed and am witnessing first hand...not second hand. I will remain puzzled and remain seeking truth in the Word of God! One more time..ALex did not write the book and it is not blessing him! Saying that it is blessing others to try to justify its wrong is just that...justification of wrong!

Something else that is really important is missing from the book that ALex is identified with, the gospel message. Following is a video of Todd Friel explaining the gospel to someone who does not know it a well as an audio recording from a guy named Justin Peters....

If you listen to nothing else of the recording by Justin, please listen in to the last ten minutes. The bottom line in these heaven visit books is that they exclude the gospel message. Heaven is a real place but not everyone will get there. There is a way and that is through Jesus Christ.

The gospel message...

Justin Peters...

ALex's name and identity are being used against his wishes(I have spoken before and posted about it that Alex has tried to publically speak out against the book), on something that he is opposed to and knows to be in error according to the Bible. How can this be going on??? Great question....How did it get this far?..another great question...sometimes bits of truth can become so twisted and distorted that it seems impossible to straighten out. Your words can get taken, twisted, and out right fabricated! His name is Alex Malarkey and "his story" is yet to be written!...don't worry, not planning to do a book:) just stating a fact.

Tuesday, March 4, 2014

First Standing Frame

These pictures show ALex in the first standing frame that he used. It was fourteen months after his accident when he stood for the first time, and he LOVED IT!!The lady standing next to ALex in the tank top was a nurse that was here with us for about sixteen/eighteen months. She was the last nurse who helped here. She rode out some scary storms in those early months after ALex first came home, but she hung in there. She moved on and has a goal of being a trauma flight EMT/nurse. How awesome is that!! The lady in the blue shirt in the second picture is our dear Wendy:)

AS for the stander, we, at first, could not find a doctor to sign a prescription to get Alex a standing frame. That is shocking since the studies show how important it is for individuals with paralysis to weight bear in order to decrease(or try to slow down) bone density loss. There are many studies that show that it is even more crucial to weight bear for a child since their bones are still maturing. So, we found, and purchased, ALex's first standing frame on EBAY. When I was able to get Alex to Shriner's in Philadelphia for a week evaluation, a doctor there understood the importance of standing and signed the script that would enable us to get a bigger stander for Alex when he outgrew his first one.

Reminder picture

This is one of the "reminder pictures" that I have. The kind of picture that after an amount of time has past after a major life event, you can reflect back on and be reminded of where you have been and what God has brought you through. In the picture Ryan is in the crib in the background just a playing with his toes, and happy as a lark, while Aaron is all smiles eating his corndog and playing CandyLand(love that game!!), Grace is content with her thumb, and Alex is there sitting in his chair. This picture would have been from 2005. ALex still could not swallow so he received tube feeding only. You can see his puffy arms which can happen with tube feeds. Also, ALex still had a manual wheelchair which was not really a good fitting one, but it worked! Life's a journey.....

Sunday, March 2, 2014

This is the first van that we had after the accident. It was bought for us by a local church in 2007. The van had been previously owned by a family who had a young daughter who was on a ventilator for an undiagnosed condition. She had passed away. The van seemed to work for us until we figured out that the seatbelts in the back did not work for the emergency catch. We drove around two vans for a time until we eventually found a very large silver van. Prior to having a van of our own, if we needed to go somewhere, we used the public transit van or the first church that we had attended out here would bring their bus. The dear lady who was the bus driver came one time just to take us out on a ride for she knew how little we were able to go anywhere. She even took us to McDonald's!!! What a sweetheart!

A video of pictures from 2007

The following is a slideshow of pictures of ALex standing in a standing frame. We had to buy his first standing frame off of Ebay because we could not find a doctor to sign a prescription for him to get one. That was even with medical evidence stating how important it is for individuals that are paralyzed to get weight through their bones to try to slow down bone density loss. That is even more important in children whose bones are still maturing. Alex was able to stand quite well until his spine started to curve as he grew and his muscles would not support his spine. That started to really advance sometime in 2008 until he eventually had his spine surgery in December of 2009. The other person in this video is a dear lady named Wendy Evans. She is ALex's physical therapist and has been around us since Alex first came home in 2005. Wendy has been through so much with us.

I hope to put together many more videos to capture the story of out lives as seen from my view. I want to try to put the pictures together in a way to save for my children in a way that they can remember the good things that have come through the toughness of the journey as well as share with others in a way that shows hope. We have had many laughs even though sometimes only after many tears....God bless those that have truly been there with us through this!!! Their names are not well known..Wendy is one of them.

Friday, January 31, 2014

Dr. Raymond Onders --Diaphragm pacing

Ray Onders, MD, Chief of Minimally Invasive Surgery at University Hospitals Case Medical Center, gets a young patient off the ventilator and back to college

Team Gleason

Until a cure is found for ALS....

Wednesday, January 22, 2014

Acceptance and Inclusion

This is little Owen Johnson. Owen was injured in a car accident a few years ago. He is absolutely adorable isn't he. His mom shared a really cool story from ta recent day at the park. Here it is...

"While at the park, one of the dads was chasing his kids around and as Owen passed he said, "Hey little man, what's your name? We are playing Shark Attack. Wanna be on my team?" Owen's face lit up. The dad introduced Owen to a bunch of kids and they all went off to play. Before that, all of the kids were just kinda checking Owen out but not interacting. And then once that dad included him, all the kids were playing with him. Take note parents- kids act how you act. They fear what you fear but will embrace what you embrace. This dad taught an entire park of kids and parents about acceptance today, and I gotta tell you, it was pretty freakin' awesome."

What a great lesson......

Saturday, January 4, 2014

Colossians 3:3-17 ESV

3 If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. 2 Set your minds on things that are above, not on things that are on earth. 3 For you have died, and your life is hidden with Christ in God. 4 When Christ who is your[a] life appears, then you also will appear with him in glory.

5 Put to death therefore what is earthly in you:[b] sexual immorality, impurity, passion, evil desire, and covetousness, which is idolatry. 6 On account of these the wrath of God is coming.[c] 7 In these you too once walked, when you were living in them. 8 But now you must put them all away: anger, wrath, malice, slander, and obscene talk from your mouth. 9 Do not lie to one another, seeing that you have put off the old self[d] with its practices 10 and have put on the new self, which is being renewed in knowledge after the image of its creator. 11 Here there is not Greek and Jew, circumcised and uncircumcised, barbarian, Scythian, slave,[e] free; but Christ is all, and in all.

12 Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, 13 bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. 14 And above all these put on love, which binds everything together in perfect harmony. 15 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. 16 Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. 17 And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

The Steve Gleason Story - 2013 ALS Evening of Hope

Steve Gleason, with his precious wife Michel at his side, are choosing to embrace the challenges they have been presented with as opportunities instead of seeing them as limits.

Inside Edition Investigates TV Preachers Living Like Rock Stars

The following video was done a few years ago. What is shocking is that even with the exposure these thieves are getting(yes that is what they are)multitudes are still flocking to them and unknowingly enabling them to continue to exploit the poor, steal from the weak and sick, and take advantage of the gullibility of their target audience. They often study the audience. Their motto is that you only have to know slightly more than the people you are speaking to to make them think you know a lot. I have watched this kind of behavior, on a smaller scale, but from individuals that desire to be the "successful" preachers(I mean wolves) that are shown in this video. Trust me, I did not get it and listened to and even defended some of these individuals until I watched the evil from up close. I met a wolf and the wolf snarled! Having money is not evil itself, it is how you obtain it and what you do with it that can be. If you want to seek the truth you will not just accept what a human feeds you as truth. There are master deceivers and manipulators amongst us!

If giving money would bring you health and wealth then all I would need to do is give a certain amount and my precious son would be ok right? What is that amount and who determines what amount I should give? Does someone dealing with a chronic situation mean they lack faith? Did you ever notice Benny Hinn sometimes can be seen with glasses? Can he not heal himself? And do not each that has ever claimed to be "faith healer" end up in death? When I was young, we used to laugh at the faith healers that claimed they had some power to touch and heal. They looked so silly with what they were doing. There actions did nothing to teach me about God or make me want to know Him. I have found that many people that I know who are not saved see these individuals and there arrogant, greedy behaviors and want nothing to do with what they claim to be Christian. If these people truly could heal, why in the world are they not going to pediatric hospitals and trauma centers instead of those needing "healing" having to go to a massive arena and "pay" for the slim chance of getting the "touch?" The number of people who claimed that "healing" ability when I was young was a small number. Today though, suddenly healing, preaching, "Christianity" has become big business. These scam artists know they can shelter their money behind church walls right? They claim to be doing the Lord's work while living lives contrary to the Lord's teachings and commandments. Watch the reaction of Copeland when asked a direct question about his money/"things." Is that the kind of response you would expect from a man truly representing Jesus? Is a church in a small town, that has multiple businesses owned by "members" of that "church, where the employees are members, and then the money flows back into the "pastor's" wallet seem legit or crooked? Sounds like a great way to hide funds.

The Bible does not tell us to "pay" a pastor for praying does it? Yet there are many individuals getting up on platforms and swindling money out the unsuspecting crowd. Search the scriptures!!! Your funds will NOT buy God's blessings!!!!You can NOT earn your way to God nor do you lack faith if you stay sick or dealing with a chronic condition. These scammers even spiritually abuse people to the point of believing that their lack of faith is the cause for a loved ones death. That my friends is just plain sickening! Those who are truly serving the Lord will be more like Christ with humility as a top characteristic not pride and greed as the "rock star" preachers/wolves. Beware!! You are not dumb or weak if you have been taken advantage of by these individuals but you are responsible for what you do with the truth you have been given...either examine it further or choose to ignore it and continue on as you were. These characters do what they do because they can!

1 Timothy 6:9-11

English Standard Version (ESV)

9 But those who desire to be rich fall into temptation, into a snare, into many senseless and harmful desires that plunge people into ruin and destruction. 10 For the love of money is a root of all kinds of evils. It is through this craving that some have wandered away from the faith and pierced themselves with many pangs.

Thursday, January 2, 2014

"Truth has no degrees or shades. A half truth is a whole lie, and a white lie is really black." ~John MacArthur

Monday, December 30, 2013

The Bridge School

What do you think of what you see a person in a wheelchair? Do you think things like, they can not talk, they can not think,'s ok, much of the world has felt that way and still thinks that way. I know that there have been people that see Alex and all of his equipment and make the immediate assumption that he is non verbal and non cognitive. That is until he says hi:) The good news is that there have been many doors open for individuals with communication and physical challenges. I have to share this. What an incredible place!! It is called The Bridge School. ALex has missed out on so much because I could not find the right devices and/or individuals that could help us. The Bridge School is a place that is trying to make a difference in the lives of the individuals, who like ALex, have tremendous challenges. It used to be those individuals were just placed in institutions. I know we were greatly encouraged...every day during Alex's initial hospital take him to a "place." The words were, "You know, there are places that can care for your son." I tried simply to reply, "Yes, that place is home." Please share this video and spread hope and help to open eyes to possibilities not limits!

Click here to go directly to The Bridge School's website. Thank you!

Sunday, December 29, 2013

When Alex was injured, he sustained what Is called a closed head injury. When this type of injury occurs the injury can either be focal of diffuse. Focal meaning that it is in a specific area of the brain but diffuse means that the injury is to a more widespread area. This is he definition of diffuse axonal injury or D.A.I. diffuse axonal injury (DAI),

- a type of brain injury caused by shearing forces that occur between different parts of the brain as a result of rotational acceleration. The corpus callosum and the brainstem are often affected. DAI most commonly occurs in motor vehicle crashes when the vehicle suddenly stops.

The way they diagnosis the difference is by accessing and testing. There is a scale called the Glasgow Coma Scale. You will see in the following article the degree according to the rating. Alex was a 3 at the scene of the accident and for days after. I will be trying to post more information about Alex's injuries to not just try to educate those that want to know, but to provide hope. Please know that D.A.I. is a devastating injury and most of the time the result is death. I read one article that said only about 10% ever regain consciousness and of that number that do, there is usually severe physical and cognitive challenges. I do not know why God chose to intervene in such a huge way with Alex but I know that He did and I want to try to do what I can to help others. The road is not easy and can be very lonely, but I hope those that may face this diagnosis with someone they love can find us who have traveled before them so that we can at least walk with them. You will face many who do not understand what you are facing, do not want to know, and in their ignorance will make hurtful comments...BUT....that will only serve to strengthen you if you allow it to. There ARE many who do want to help, do want to understand, and do care!!! Hang on!!!! The rocky road can be very tricky and challenging at first, but the gains from navigating it and the depth of appreciation for the smallest of things will make it a journey you want to stay on! God's grace(generous benefit given)is sufficient! P.S....the medical professionals repeatedly used that term "persistent vegetative state" when referring to Alex and I STILL hate that term!

Click here for a direct link to a page that will give you a bit of information on traumatic brain injury or T.B.I.

And here is a little video about diffuse axonal injury/D.A.I. also called brain shearing. In the video, brain bleeding and brain hemorrhaging are mentioned. Alex had some big bleeds and hemorrhaging. Thankfully, the brain pressures only elevated slightly and the swelling was minimal.

Thursday, December 26, 2013

Cell Model

Alex had to make a model of a cell for his Comprehensive Biology class. SO he guided my hands and this is the result. Yes, that is play dough that we used. He looks quite pleased with the product don't you think:)

Wednesday, December 25, 2013

A few pictures...

 I had some helpers with the cookies...
 Beautiful flowers from my dear cousin
Look at little Lucy in her Christmas dress... .

 Getting ready to EAT!

Lucy had enough! Holidays can be "ruff."

Monday, September 2, 2013

ALex Malarkey...a timeline of truth

I like to journal for a variety of reasons. I have multiple journals for various subjects. One thing journaling does is help me to keep track of details. I did not do baby books for my kids, but instead kept journals on each one. Ryan's is the sketchiest because he was born so close to the car accident. I can look back at the journals to keep facts straight, help me to remember the details of special events, see how far we have come, see how crazy it was, what God brought me/us through, etc. From the journals, I have done from time to time, timelines. Sometimes when I have put together timelines, I have seen patterns that have helped me to better understand something. I am going to do a timeline from January 2009 until present. The concentration will be from 2009-2010 when my son Alex was so bad physically. I have been asked many questions about Alex and his health. I have seen many things written about my son many of which are either blatantly wrong or greatly exaggerated. No one has endured the physical struggles that Alex has but him himself. NO ONE! I am with him ALL the time and yet have no idea what it feels like to be in his position and I remind him that he does not know the view from mine. We each have journeys full of struggles and triumphs. I cannot speak for Alex about what he has gone through, but I can talk about what I have gone through and watched him go through by being beside him. No words, though, could do the journey justice. Some things, no matter how hard I would try to explain, are ones that you could only grasp if you witnessed it for yourself.

Many have read a book about Alex and then stated that they could not believe what he went through making it look like the struggles were in the past tense. As you read the following timeline, I think you will first see that Alex’s struggles are not in the past tense. I think you will also see that being fully aware of what is going on around you and having those whom you think you can trust, betray you, is a position that few of us could fathom let alone try to deal with as a young child. I know I have often caught myself trying to think back what it felt like to be 10-15 years old and how I might deal with some of what Alex has had to deal with, but then I stop for there is no way that I could imagine. Alex’s struggles after the aftermath of the accident were not only minimized in the book, but spun in a way to capitalize on them. At times throughout the years of 2009-2010/11, whenever Alex tried to express a struggle (or I did) individuals would just discount his feelings and instead tell him he was blessed and go on to talk about a "book" which was in fact, one aspect of his struggles. He would be so bothered, that, as Alex kept returning to the hospital; stress would be examined as a possible cause of the physical issue that Alex was dealing with.

Ok...I will start with January 2009...Alex had surgery to implant a diaphragm pacer which is basically another form of mechanical ventilation but a much better, natural, and healthier form. I had been in contact with the group at University Hospitals Cleveland which included Dr. Raymond Onders and Mary Jo Elmo(whom I talked to the most)for about three years leading up to the minimally invasive/outpatient surgery. The surgery was a huge success and it seemed like we were going to be heading for an exciting year. Some individuals in our lives, sadly, were not focused on Alex and how he was doing, but more on the fact that the news of the historical surgery was everywhere on the internet and news. Those individuals were caught up in the attention and possible fame that was coming from what Alex just went through. It was AP (associated press). Alex was the youngest person implanted and it was big news. To me, I was a bit overwhelmed. I was used to Alex's ventilator tubes. I could change them out if they broke. With his diaphragm pacer, if a wire broke, I could not fix that...yikes!! Well, Alex recovered and we left the hospital to go to a hotel. We would spend an extra day in Cleveland due to a huge snowstorm.

By the end of January, Alex was pacing without his ventilator really well. Woohoo...he was going to be vent free!!! Not so quick. On February 2, 2009, Alex started to struggle with his heart rate and oxygen levels. His heart rate would all of a sudden plummet. His oxygen level would dip as well. On this day, his heart rate would plummet to 39 as I got him into bed (so it could have actually dropped lower). What was going on???I was in contact with Dr. Onders often for it seemed that somehow whatever Alex was dealing with might be related to the surgery he had just had. (It is so easy to look back and see things that you missed while you were in them). For the next few days Alex would struggle and not be able to get out of bed. Finally, on February 7, 2009, Dr. Onders suggested (after trying to help me stabilize Alex over the phone) that I take Alex to the hospital just to get an x-ray of his lungs. I took Alex to the hospital and began what would end up being a nightmare of a situation. We arrived at the hospital about 9:30 P.M. Alex would spend the next eight hours in the e.r. with no food/water/or entertainment and on a hard gurney. I kept moving him as much as I could so as to avoid a sore. The medical staff started to give Alex some heavy-hitter I.V. antibiotics while refusing to call Dr. Onders despite my numerous attempts to try to get them to do so. The doctors would end up admitting Alex for an infection (with no proof of one), and they would not let him eat or drink. They were also trying to say that Alex was aspirating though he has successfully been eating and drinking for the three years prior to this visit. Basically, they were shooting at whatever they could and then trying to prove what they were shooting at. It would end up being a 16 day nightmare of a stay. I watched Alex go through torture. I ended up writing a 4 page letter to the department that listens to concerns (Quality assurance department). I will just say that we no longer go to that hospital and have papers to say that if somehow Alex ended up there, he would be sent on. My purpose in writing the letter was to try to prevent another individual from having to go through what dear Alex did. I will say, though, that it was the support staff that were responsible for helping to save Alex...yes, save, him. The medical staff had been giving Alex medicine that he had an armband on that stated he was intolerant to. The response of the intolerance was respiratory distress which he had been greatly going through. It was a brave nurse and respiratory therapist that spoke up and became the voice that would be listened to. No medical professional should try to prove what they want to believe to be true when all evidence is pointing against their thoughts and in fact, heading that patient into a dangerous situation. In 16 days, Alex had lost his voice, had ringing in his ears, threw up, was told he might never eat again by mouth, and no infection was ever found! It was by the advice of a pharmacist that I have the lab results for Alex pulled. It was those lab results that combined with the courage of the support staff that Alex survived. Later, Dr. Onders, Mary Jo, and I would determine that Alex’s lungs had dried out from pacing too quickly. I will save the full explanation of what that means for another time

Alex and I got home and he started to recover but still needed to have oxygen put through his ventilator (he normally did not require that). My other three were still so young. I had never been away from them for that length of time before. I got just a teeny tiny taste of what some of our brave soldiers must experience. I say teeny tiny....

Alex did get better but was not able to pace like he was before that episode. I still was in communication with Dr. Onders who was curious himself why Alex was not able to transition to full-time pacing. In May of 2009, Alex seemed sick. I had to use a good bit of oxygen through his ventilator to help him feel comfortable breathing. Alex was started on an antibiotic to try to prevent another hospital visit.

On May 21, 2009, against again my request to not have someone come due to Alex's health, an agent for my husband and the book that he was working on(at least I think he had started it but I am still not sure to this day)came to our house. I remember the man talking to Alex and to me but not by myself. He never really asked me what I thought but instead told me what monies could possibly be made from not only doing a book, but a series of books and possibly a movie. He reassured me how much that money could help with Alex's needs. What stuck out was money! Not concern for Alex’s well-being as evidenced by Alex being on oxygen and the person trying to push me to take Alex into Columbus for a meeting the next day, and the individual staying at our house until 1:00 A.M... Obviously the individual had no idea, or maybe concern for Alex's health, but was more concerned about missing out on a sale. Sounds harsh but sometimes reality can be harsh. That person would end up not having much communication with either Alex or I over the next year except to leave a few voicemail messages for me on my cell phone wanting to offer that if I were interested in doing a book, to call him back. I did not receive the messages until I got back from the hospital with Alex after his back surgery (that is coming up later in this post) and writing a book was not something that I was either remotely interested in, could think about, or would consider. I have four kids to care first and most importantly of all. I can still Google this individual on the internet and find places where he claims to be an agent for Alex not just my husband. It states that he is Alex’s agent in the book itself! Again, if there are any legal contracts with my son’s name on it, I, nor Alex, have seen them.

Dr. Onders decided to bring Alex into the PICU (pediatric intensive care) at Rainbow Babies and Children in Cleveland. With Alex in Cleveland where the diaphragm pacing team was, he could be evaluated and the "real" issue could be figured out or attempted to be figured out. It was on that that I was able to see how differently eyes trained in the same profession can see things and how radically different they could approach handling them. It was on that stay that we met Dr. Karen Lidsky, who has become a primary doctor for Alex, and decided that Cleveland was going to be where Alex would go for the majority of his medical needs. Alex would spend about five days in the hospital that time and have a little procedure done during the stay to help open up his airway a little more.

As 2009 moved along, Alex started to grow. As he grew, and his muscles did not give his spine the support it required to stay straight, his spine started to dramatically curve. Dr. Onders had recommended that Alex go to see Dr. George Thompson who is an orthopedic surgeon in Cleveland and who specializes in spinal fusion surgery. In October of 2009, Alex saw Dr. Thompson. It was on that visit that we found out that Alex’s spine had gone from a degree curve of 50 in February to a degree curve of 89...almost 90 degrees! His spine had collapsed. Alex had to have surgery. We were both devastated. We wanted to so badly go to Kennedy Krieger in Baltimore. Alex has never been able to do any official "rehab" and at K.K.I. they focus on recovery through activity-based therapy. That trip would have to wait and is still waiting. Alex and I grieved. Ok, so surgery is what was needed. Over the next two months leading up to his surgery, Alex could not eat, could not sleep, had trouble sitting up, and started hallucinating. When I look back, I can now see how he had been doing all of the things mentioned throughout the 2009 year, but it definitely got worse near the end of the year. By time his surgery date rolled around, Alex was begging to get it done. He was miserable.

On 11-9-09 a group from a publishing company came to our house despite my attempts to stop it. It was never discussed with either I or Alex that the story line would be something other than about the car accident and his survival. I knew, and Alex knew that details were gathered, but that had been done before and stories had been written that did a fantastic job of pointing to God(not near-death experiences or supernatural beings) while also allowing room for the severity of the struggle that Alex was enduring and had endured. The stories that had been done also made sure to point out that ALL members of the family were affected. SO a story in and of itself was what we thought was being done by one individual's viewpoint. What it would turn out to be, is something radically different.

SO the people came, Alex could barely sit up, and some of them tried to question him about things he did not want to discuss. It was to the point where I finally took him into a room and told him that he did not have to say anything that he did not want to. I took him back to where the others were and made it clear that adults had no right to ask Alex about things that he did not want to talk about just because they were adults(I guess I did show meager attempts to be strong). When titles were mentioned and pictures shown, Alex very clearly and strongly expressed his opinions against certain ones. He was told that he did not have final say. The title and picture that were used were never discussed again with Alex, but were chosen knowing that he had expressed strongly against them and gave reasons for his opinions. I will say that there was one dear individual out of that gathering that has become a great friend to Alex and advocate for him and one that has given me a tremendous amount of support and encouragement. Again, the fact that Alex’s name would be on the cover and a story told as if it was his first-person point of view was not made clear or known to either Alex or I.

12-02-09 Alex underwent a spinal fusion surgery. His body was so fragile as he entered into surgery. Because he had been unable to eat much, his weight had gotten down to a gaunt 55 pounds. He had a grayish cast to him. I have since the surgery told him that I wish I had known about the nutrition shakes that he currently drinks for breakfast and I could have got him to drink those. Alex told me that he would not have been able to tolerate them So Alex entered into the surgery. The fusion started at his c2 vertebrae and goes all the way down to his pelvis. The curve that was at nearly 90 degrees was greatly straightened. The surgery went really well (although later I would find out that Alex’s blood pressure had been very difficult to maintain throughout the surgery). What no one expected was that Alex’s body would respond in such a dramatic way as it did. He and I would end up spending the next 21 days in PICU at Rainbow Babies and Children. That time is so difficult to reflect upon, and equally difficult to put into words to fully portray how challenging it was. Most individuals can expect to spend 3-5 days in the hospital after their back surgery just to put things into perspective. Some of the things that Alex would need/experience were....he would need to have two pints of blood, potassium, could not tolerate even intravenous nutrition which resulted in skin breakdown and a sore on his tailbone(he had never had a sore before that), his blood pressure would sky rocket and then plummet, he did not know who I was, could not sleep for three days straight, his nerves went into hyper drive which resulted in him biting through his lip and us having to strap his lip outward to prevent further trauma or possible infection, he went totally unresponsive after a dose of Tylenol with Codeine(scared everyone there)and they thought he had developed a brain bleed or had a stroke(did I mention it was really late at night too when it happened), he dumped(peed out) any fluids they tried to give him until brilliant Dr. Lidsky(who HATES TO EVER GIVE UP)figured out that you have to give Alex liquids through his belly the more natural way then his veins(artificially his body just sort of rejects the extra fluid as a regulation effect)...ALex would be known as the "worst" kid medically speaking in the PICU on many of those 21 days. Alex and I had a few sister, my dear friend Wendy and her mom, a pastor and his son came once two weeks in but then we never saw them again, and a friend who brought some decorations to make the room a bit festive for Christmas. It was a tough time, a learning time, and an eye-opening time.

I have been asked about quotes in a book by me. I answered that I neither verbally nor in writing gave approval for any quotes. In fact I instead verbally gave my desire to not have any quotes by me put in any book. There was a time that I was sitting in PICU and told over the phone that some words from a webpage that no longer exists( were written by me were going to be placed in the book. I was sitting in PICU with Alex! I told the person that they could not do that, to which they said they could and that that site was public. GRRR....the best I could do was to tell the person that they had better get every word correct. I have documentation of what is written in the book and that post from the webpage. The two do not match up :( It saddened me more to learn that that interaction that was twisted is part of a Bible study...what? I certainly have witnessed some shocking things!

…………..One little side note on Alex not knowing me…One day, about the second day after his surgery, Alex looked at me and looked very confused. I asked him if he knew who I was. He said no. I started to cry to which he said, “I do not know who you are, but you can stop crying. It is going to be ok.” I lost it!

The night before Christmas Eve, December 23, 2009, Alex and I came home. In less than a year, I had been away from my other three kids for more than I had ever imagined I would ever be  Man! I remember many times just lying on the couch bed in the hospital room and crying. My dear Alex was going through so much and at the same time, I had three other young kids over three hours away. Again, what individuals like those that battle for our freedom go through!!God bless them!!!

Alex slowly, very slowly, started to seem to regain a bit of strength. He was not able to get up because the sore still was healing, he could not access the computer because he was not strong enough to use his mouth mouse, and he certainly could not go anywhere. BUT...he was home!!!!Then his power chair shorted out which meant he could not be up in his chair for more than an hour at a time even if the sore healed. A person who is paralyzed like Alex needs their position change at least every hour, some more, some less. In a power chair, if the power does not work, there is no way to change the angle of the seat; therefore, the pressure cannot be shifted.

At the end of February 2010, Alex seemed to be getting sick. At the beginning of March of 2010, a film crew showed up at our house to film, what I thought was going to be a documentary on Alex. I had seen some documentaries before that were done by the filming company. (I did I not put two and two together...hindsight is easy right!) I had requested that the company not come due to Alex's health, but my request was ignored. The crew came in filming without praying with us first. I frankly found that to be strange and shocking. My request for prayer before filming would at least get honored on the next day. The crew would come to our house over the next several days, and as they did, Alex became more upset. They tried to get him to talk about things that he did not want to talk about. They tried to get me to talk about things that were not mine to discuss. I did not get it but I sure do now. Remember, we did not know the storyline, although, we sure were getting lightning bolt clues. I found out that people were being interviewed that had not been involved in our lives until a year previous to this "film." and certainly could not speak about the time surrounding the accident. What about some of the dear people who were there? What about my dear friend and her husband who had taken my two middle kids for the first three days and loved on them in such a Godly way? What about the ones who brought us food, clothing, prayer, sat with Alex so we could travel to our house(including during snow storms and Christmas Eve), held my newborn until I needed to nurse him including the first night after the accident...ALL night(we did not sleep)? Why they were not involved? There was so much that was off! The advice given to me was to speak truth. In the documentary, Alex looks very uncomfortable. His eyes are down. Where is the Alex smile??? There is much I could say about that week but I will stop at what I have just said. It was again...eye-opening! I wish I would have never done that film, but I know that I did try to stop it, and it is because of what I witnessed in the process of the filming, that I started seeing how twisted truth can become, and how individuals would knowingly support that twisting. That is not to say that ALL that were involved knew what was happening…I did not…but others did!

Within two weeks after the filming, Alex would end up in the hospital. His heart rate had been plummeting. The doctor was going to fly Alex to Cleveland, but the weather was bad so we went Medflight ground crew (portable ICU on wheels). Alex would spend ten days in the hospital. They put him on another medicine in an attempt to control his blood pressure and heart rate. One difference here is that the doctor told me if I opposed, she would not do it. I wanted to so badly to work with her. She was trying so hard to do something. We had to work as a team. Alex came home on a new medicine. He was now on two for blood pressure. He has never had to take blood pressure medicine before. We were heading into April at this point, Alex turned 12, and he was not doing well at all. He could not sit up, (actually he had to lie flat) could not eat solid foods, could not stand anything to touch his head, and if he did try to eat, his stomach would start to hurt which would send his body into a reaction of dropping heart rate and blood pressure. UGH!!!! Stress was considered as a possible cause but Alex did not want to share his feelings.

At the end of May of 2010, Dr. Lidsky decided to bring Alex in check for one more possible cause. They wanted to do a scan to see if something had happened to the base of his skull, which would then tug on his brain stem, which would then cause dramatic autonomic reactions. She was trying so hard. It was on that visit that she had to pull me aside and give me the difficult talk. She, and her colleagues, truly believed, from all the evidence that they had to go on, that Alex was declining and going to pass away. She wanted me to promise me to not perform heroics on Alex when, not if, he coded in the middle of the night (she had learned how I would do everything I could for my kids. Talk about a testing of your faith! I had to trust God to handle this one. I did not believe Alex was going to pass. I was not speaking out life (I am not God), I just trusted him and what I knew He could do.

Alex was only in the hospital a few days. When we came home, an old friend brought a new set of medical eyes to our house. This doctor had studied Alex's original post-accident MRI's to examine his injuries. He did not believe Alex was declining. He believed instead, like me, that the new medicine was causing the issues. He was willing to go through, what might be a tough weaning process to get Alex off of the new medicines. I ran out of the one medicine, and since it was not a central nervous system medicine, I could just not get the script refilled and could therefore, just stop giving Alex that one. It worked with no reactions. He still needed to come off the second medicine which was a central nervous system one and a powerful one.

On July 7, 2010, just six days after a book came out with Alex's name on the cover, Alex went into respiratory distress while at home. His body was having a toxic reaction to the medicine. How I knew that was because of what I had seen while he was in the other hospital in February of 2009(see how that can work). I knew Alex was poisoned. I knew that if I took him to the hospital, they would just think he was going to pass. Their hands would be tied for it might be too risky to stop the med all together. I called the doctor that had come to our house and filled him in as to what was happening. He told me to not give Alex the next dose of the medicine. Alex was so uncomfortable. He did not feel like he was getting air even if I added oxygen to his ventilator breaths. I had to use his ambu bag (breathing bag) to give him extra breaths and basically overinflate his lungs a bit. It gave him moments but just moments of relief. I could only leave his side long enough to go very quickly to the bathroom.....very quickly. I sat next to him giving him "boost" breaths ALL day and into the night. Finally, at 3:30 A.M., the medicine must have worn off enough that his body quieted down and he was able to get comfortable and go to sleep. The next day, I held the medicine. The doctor instructed me to give Alex a 1/2 dose every other day until he longer showed a reaction to it. It took almost a week, but finally, Alex was off of both medicines. It was crazy. Each time, for the first few times, when I gave even that half dose, Alex would have a little reaction. It made me more aware of those that do not have the strength to speak up or courage to. In this case, unlike the one at the previous hospital, the doctors were basing their actions on evidence that they had....lots of evidence. They were doing what they thought they could in a very difficult to figure out situation.

Up until that week of the toxic reaction, Alex had been only getting nutrition via nutrition shakes because solid food made his stomach hurt which then made his bp and hr drop. Well, after he got off of the medicine, the doctor had me give Alex a nutrition supplement. (I learned a lot through that time the difficult way). Suddenly, Alex could eat! He could go up at a higher angle on his tilt table. He was getting better! Physically Alex was finally recovering. Emotionally, he was very upset at the whole book which was now out, with the title that it had, with the story line that it had, with his name on it which he had not been told about(nor I), could we stop what had already gotten to this point. DO we try to stop it, or do we try to finish getting Alex back to a healthy point? I think that answers itself right?

Alex's was still not able to access the computer, but we had started to try to get insurance to pay for an eye gaze computer which Alex could more easily use. The virtual school paid for his old chair to get fixed enough that he could get up in it. At the beginning of the year, we had put in for a new chair for Alex. He can get a new one every five years and it had been five years. The reason than that insurance could not pay for his old chair to get fixed when it shorted was that if they fixed the old chair's electrical components, they would then say that Alex did not need a new chair. Ugh! SO we had to find a way to pay for his old chair to get fixed. The virtual school funded the repair and Alex started to get up out of bed again. He had endured so much that summer. It was beautiful summer weather wise and the only time he got to go outside were the times when I strapped him to his tilt table and somehow managed to wheel him on his table, while pulling his ventilator, outside. I still wish I would have filmed it to show what you can do when you want to and when it is for someone you love, especially a child. Can you imagine being 12 and not being able to go outside in beautiful weather? Or not being able to go anywhere or not be able to get out of bed? And that is if nothing else was going on.

Things were going better until September. One day at the end of September, some old friends had just visited when Alex started to have major trouble breathing. I worked and worked on him and could just not get comfortable or stable. I made the call and we were on a ride on a helicopter to Cleveland. Alex had a very deep and large mucus plug. How could I have not been able to get that thing out of his lungs? I had gotten so much out before. They assured me that mucus plugs can be that difficult to get out sometimes. The good news was, Alex was ok, and we got to go home 24 hours later. Within a month, Alex started to struggle again. It was at night and all four of the kids were asleep. I tried so hard to get Alex stable. I worked on him through the night. Their dad was out of town speaking on the book that he had written, Alex and I had just left a month ago, and I just could not look at them sleeping and bear the thought of waking them up just to tell them that Alex and I had to go to the hospital again. I called my dear friend Wendy's mom whom my kids affectionately call, Grandma Terri. She came as soon as she could. She reached down to my Aaron who was sleeping on the floor. When I saw the sweet smile that came over his face when he looked up and saw that it was that was waking him up, I knew it would be ok. Terri assured me that she would take good care of them and for me to just do whatever I needed to do with Alex. I went ahead and called the doctor to set in motion the flight to Cleveland while Terri gathered my other three under her caring wings. It is so nice to have people like Terri in your life isn't it? What a blessing. My dear mom passed on in 2001  She would be doting on these kids if she were still here and able but God has placed someone else here to love on my kids in that way. Actually, my kids are blessed to have a few dear hearts like that in their lives

Alex and I flew off again to Cleveland. It was a good thing that we did. He had caught a nasty virus that was attacking his lungs to the point that his home ventilator would not give him the support that he needed. He had to go on the big, nasty, hospital vent. He did not like it, but he trusts Dr. Lidsky and when she got in his face(in a good way) and assured him that she would make sure he was comfortable and needed to use the bigger vent to do so, he let her. Again, what a blessing it is to have a doctor who cares so much for your child 

Alex would spend five days in the hospital.

Ok, so October past and we got into the month of December. I was beginning to count days that Alex was home and count it a victory. Alex's new chair was going to be brought out until...yep...we had to go to the hospital again! UGH!!! It was only a few days before Christmas. Alex was sick yet again. What in the world was going on???The helicopter flight nurse held Alex's head up so he could see some lights. She was so sweet. Do you know how loud it is on the helicopter? The medical team at the hospital did their usual evaluating of Alex by taking cultures to see if he had any bugs while starting him on a baseline antibiotic. They always try to keep Alex in the PICU since his system is so complicated, but the house was full, and since I was right with Alex, they sent us to a regular pulmonary floor. The team was thinking that Alex would get to go home for Christmas until he started to struggle. I started to try to clear his airway (yes, I still do his care at the hospital) and all of a sudden a bunch of really nasty junk came up. Ok, we were not going to get to go home for Christmas. Alex was devastated as was I. Dr. Lidsky went out of her way to try to cheer him up. I remember that I was feeling sad as I was lying on the hospital couch bed trying to rest and then I heard a helicopter flying in. Hospitals can help bring reality into perspective. I realized that we were still going to celebrate the birth of Jesus, we were not the only ones there, and I started to pray for whoever may be on that flight and the family involved. If you have never experienced a trauma, first, be thankful, and second, it is so difficult to explain the deep hurt that you can feel for others who go through one after you. You know how it feels.

Christmas day came and the other kids came for a short visit with their dad. It was so great to see them, but so difficult to watch them leave. My Ryan still talks about how he cried because of how sad he was to leave. The separating throughout the years has been some of the toughest parts of this journey. I cannot even talk about some of the times and I can talk about a lot!

Rainbow Babies and Children took great care not only Alex, but my kids received gifts as well when they came to visit. The gifts were just a part. Dr. Lidsky and her colleagues give so much to the kiddos that they care for. My Alex is a recipient of their tender, giving, devoted hearts.

Alex and I got home two days after Christmas. I now had two more machines to use on Alex to try to prevent another hospital visit. One machine, I use daily, and the other is one that I use for more emergency like situations. It is that machine, the I.P.V. machine that most hospitals do not even have, but this mom feels they should! Just saying....I have seen what it can do!!!

So we had new machines, a medicine that I could keep on hand for emergencies, and we were set.

What a tough period 2009/2010 was. I had a child experiencing not just extreme physical issues, but at the same time, there was material being presented in the public as true, about him, involved a lot of money going to someone or some people, and involved individuals that had positions that should be ones that a child could trust, yet those individuals were instead exploiting that child. How do you wrap your head let alone your heart around that? My cries to God were plenty and loud! Why? How? Please help me to understand. There was so much that I just did not get. Since that time, I have learned much. I have personally grown. I have admitted to being dead wrong in places, absolutely right in others, and everything in between. I learned how deeply one could be betrayed, the truth about cold hearts, how God's word is the ONLY place to find absolute truth and how man will use God's word to get what they want. I have learned to cling to God's word and to Him.

From December 2009 - December 2010, Alex was in the hospital six times. One time we drove him to the hospital from the hotel (for his back surgery), three times he was transported by helicopter, one by the mobile ICU, and one by regular ambulance. From October 2009 – March 2011, except for the trip to the hotel to the hospital, Alex and I were house bound other than the trips to and from the hospital. For a good part of that time, Alex was bed bound. In March of 2011, I was finally able to gather my four children and just take a simple van ride. It was not far, it was not long, but we were out, about, and together! WOOHOOO!!!

Alex would remain out of the hospital until he went unresponsive in August of 2011. It was after he had put a post up on a fan page calling the book with his name on it deceptive. There is much that I could say about that trip to the hospital and the stop and the E.R. on the way, but I right here I will keep it simple. I know that while Alex was in the hospital, his post was deleted and he was blocked from further commenting on that page. (The post is on my blog. I copied it from Alex’s Facebook page where the post still shows up) I have seen numerous individuals though addressing what they believe to be him on that page. I have even seen responses to the questions that are written to what they believe to be Alex. Why do I read that page? It is my son!
……on the pastor and his son that came to visit the hospital after Alex’s back surgery... They never came again and did not come to minister to Alex or I when we were unable to leave the house. They are from the church that claim to be my family’s church. They were not involved in our lives around the time of the car accident or the immediate years after it. Alex nor I have been to their building since fall of 2009, and are not in communication with them. My husband does still go there and takes two of our children. I know that a person from there handled promotions of the book even though there was clear communication that Alex and I were opposed to it and why. I do know that Alex begged the pastor to tell his congregation that the book was wrong and to stop it. Alex placed that request while he was lying on a gurney in E.R.. The pastor did not even acknowledge Alex’s words

Since August of 2011, Alex had one quick trip to the hospital in January of 2012. He has been well physically. He works very hard each and every day. I am his only caregiver and aide at school. Our friend Wendy has been around Alex since March of 2005. She usually comes to work with Alex twice a week. Wendy really knows Alex She has ridden this rough journey with us.

Why did I write this post? There is much more to say, much that has to be addressed, and as I learn more and grow stronger, I will do whatever I can to stop the exploitation of my son and the twisting of God’s truth.

1 Timothy 6:6-10
6 But godliness with contentment is great gain, 7 for we brought nothing into the world, and[c] we cannot take anything out of the world. 8 But if we have food and clothing, with these we will be content. 9 But those who desire to be rich fall into temptation, into a snare, into many senseless and harmful desires that plunge people into ruin and destruction. 10 For the love of money is a root of all kinds of evils. It is through this craving that some have wandered away from the faith and pierced themselves with many pangs.

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(all who were involved, I still do not know), contracts being signed, plans being made....Alex was struggling.....mightily!

This is a picture of him a few days after his back surgery in December of 2009. That stay was one that forever impacted me and I believe the medical staff that rode it out with us. It was very painful to watch what Alex went through during the weeks after his surgery. And yet, there were individuals working on materials that would end up being ones that would use his name, exploit his struggles, misrepresent his journey, and downplay the reality of the challenges that he faces and has faced....very sad...

Sunday, September 1, 2013

One day while running on a treadmill in late summer 2000, I tore my meniscus in my knee. I would walk around on my injured knee for a few years because of a misdiagnosis until finally having surgery to repair what had, by that time, become some really shredded cartilage. Apparently, I also developed what is called a hard cyst. Ok..yadada...I thought I would never run again. Then the accident happened, life got so challenging and tiring. Then last year, ALex was able to go to school, my other kids have since started to school. ALex won an award, had been doing his FES bike again, and overall just doing fantastic. That prompted a friend to say that I should do a marathon with Alex. Funny, but I had already been thinking about looking into a special jogger for Alex. I sought a jogger for my son and started to run again on a treadmill, after clearing it with a friend who happens to be a very good athletic trainer.(he is the one who figured out that I had a torn meniscus and got me to the right doctor who could help). A few months later and ALex is slowly gaining his stamina with pacing and inspiring me and motivating me to run. Guess what??Today I was able to go 4 miles on the treadmill!!The even cooler part is that I listen to a Bible teaching while running so I am getting built up in more ways than one. 13 years later, I am running!! The challenges and curve balls that this life can throw you are ones that can break you at the core, but sometimes it is that breaking that if you let God in there, He can start to rebuild you in a way that you could not have imagined. And guess what....that does not mean you are wealthy, completely healthy, or free from struggle. What it does mean is that you and He have become closer and you have learned to rely on Him. Amazing what can come from daring to go with a suggestion from a friend. I can not wait until Alex gets to do his first run, I am thankful for the second chance at running that I have been given(I used to run ALL the time and very a young age), am so thankful for individuals like those involved with Ainsleys Angels, and most of all, thankful that I know the God who cares about the smallest little details of our life and has patience with me as I try to learn:)

Saturday, August 24, 2013

ALex and I made it a mile with him in his jogger, pacing without his ventilator, and on our hilly driveway. The mile took about 14 minutes because I walked more than I ran,and because Aaron pushed his brother a bit. Now isn't that cool! Boy, are we all going to gain strength through this. I was sharing with Alex while we were going along(I was huffing and puffing)about the overload principle. We have to push our bodies and overload them to help them to get stronger. I reminded him of where he was last year at this time. He was doing extremely better than the previous years but he is even stronger this year. Last year, his first week and a half of school was very challenging physically, but this year, his stamina is through the roof! Alex has entered into school this year with energy to spare! Can we give a big woohoo!!!Rolling forward with intention and purpose.....

Monday, August 19, 2013

Jogging Chair update....

ALex got in his jogging chair again yesterday after standing first for almost an hour on his tilt table. He did great. We made it four laps on the driveway. I am posting a video that my Grace shot. She did a fantastic job!!!You will see in the video how steep our driveway is and how long. I want to go to the track at the school so bad. I know we could make it quite a distance. We are both going to build up so much endurance. ALex used his pacer only again while we were jogging/walking, and he said his breathing felt great. He only struggled when I put him back into his wheelchair. The change of position caused the struggle. I will have to put his wheelchair into a more reclined position the next time. We are making progress. Again, thank you to all who donated to help us to get the chair, to those who have prayed and offered words of encouragement, to Ainsleys Angels, who do an amazing job of trying to promote inclusion, and to Team Hoyt, who have inspired so many to get out there and run, feel the wind, just move. Here's the video....

Proper Sunflower seed Handling

There is a proper way to handle sunflower seeds you know...