God's Hand

As many of you know, I got sick recently and spent some time in the hospital.  27 days to be exact.  I was much sicker than I thought when I went in.  I had been holding off going in hoping to get better.  That did not happen. By the time I went in, I had pneumonia in both lungs and a blood infection.  My organs had already began to shut down.  The night before, God spoke to me and told me I had better get my butt to the hospital.  Good thing I listened, because within an hour of being there, I went into respiratory distress.  I literally could not breath.  I thought I was dying, and I was.  I looked at my wife, my mom and my dad and tried to mouth to them that I loved them.  What happened next was what really made me think that I was going to leave this world.  I felt like I was floating above the room watching the doctors work on me.  I saw Jennifer crying.  I saw my parents with a worried look o their faces.  I actually thought that was it for me.  I was waiting to cross over and see the light.  It didn't happen though. The doctors stabilized me by putting a tube down my throat and into my lungs that breathed for me.  I was ok for the moment, but far from out of the woods.  If I had not listened to God's prompting me to go to the ER, I would surely be dead now., The infection in my lungs was so bad that it spread to my other organs.  I was in septic shock.  My heart was barely pumping.  It was failing, along with my kidneys.  More than one doctor told my family that they did not expect me to make it through the night.  By the Grace of God I did make it through, but barely.  But my heart was in bad shape.  So bad that the cardiologists rushed me into surgery to insert a balloon pump into my heart to help it pump.  A normal heart has an output ratio of about 65%.  My heart was pumping at about 5%.  It was about to give out.  The infection had really done a number on the old ticker.  The doctors were skeptical that it would come back.  Something told me my heart would be fine, and it would recover.  I spent a week and a half in critical care.  I was in critical condition.  During that time I was visited by several friends and family, and a Catholic priest visited me almost every day.  Father Dominic Pistone really helped give me strength by coming and praying over me almost every day.  The visits by friends and family made me feel loved and gave me strength too.  During my time in CCU, I also had a tracheotomy performed on me.  I now am hooked up to a machine that helps me breath through hole in my neck.  This has been a really hard adjustment for me, but I will get used to it. In another miracle, my heart fully recovered.  The doctors seemed surprised. This whole experience has taught me that life is extremely fragile.  It has also taught me that God has more plans for me in this life.  I should probably be dead right now, but by God's Hand and the brilliant work by some incredible doctors at Houston Methodist Hospital I am still here. I do not know what is next, but I'm gonna try and be ready for it.  I will, try to what God wants from  me.  All of these happenings were compounded due to the fact that I have ALS, which makes it even more of a miracle that I am still here. Definitely God's Hand.

During my stay in in the hospital I missed my kids immensely, and I cried everyday.  It was so
 very hard, but it reaffirmed my purpose in life and strengthened my will to keep fighting this bastard disease.  I am grateful to still be alive, and will try to look to God everyday and stay positive in my fight.  But there is no doubt I will need support from friends and family during low times.  I don't plan on giving up the fight.  It is still surreal to me that I was so close to  death.  But I am still here so God has plans for me yet.

Simple Things

We often  try to over analyze life. I've learned that living simply makes it easier. I focus on the good, do the best i can, and leave the rest to fate. Here are some things that make me happy :


 The sound of my children's voices
 Watching my children lay in bed as they sleep
 the smell of a freshly brewed cup of coffee in the morning
 the fresh smell of the morning when you step outside and the dew is still on the grass
 a good song
 watching a mocking bird get after a crow
 the smell and feel of a downdraft gust front of an approaching thunderstorm
 the soft feel of a child's touch
 my loving wife
 my family
 this great community in which I reside
 the feel of a summer's evening breeze
 the sound of a hawk's call
 the soft coo of a mourning dove
 the song of a mocking bird
 horses
 sports
 faith hope and love

There are obviously many more things that God has provided us in this world to bring us joy. But we must not focus on the wrong things that will fail us. It is inevitable that bad things will happen. But there will always be good to focus on and if we keep our faith and hope in God, then nothing can beat us. The best way to live life is happily, despite the circumstances.

Why I Choose to Believe

I have been doing some thinking lately. Having a disease like ALS gives you ample opportunity to do some thinking, since it forces you to sit still. I have been doing a little thinking about why I choose to believe in a loving god. I mean I want someone to tell me how in the hell there can be a loving god when there are disgusting diseases like ALS in existence? And nobody can prove to me where we go after our time here is done. Luckily there are a few things in existence called faith and love. No, there is no scientific way of proving my faith and love, but I know they are real. I believe in faith and love, and I believe in a loving god. I know that there are things that happen in this world that suggest otherwise, but if all I do is focus on these things I would be ignoring the countless good things in my life. I would also be ignoring my innate, yet very real need to know there is a supernatural force out there that knows why things happen the way they do. And I would be ignoring the feeling that this force loves me. I am a sucker for love and goodness, and there is simply too much goodness and love in this world for me to ignore. So no, I can't prove to you that there is a god, and that that so-called god loves me. But I believe there is. Take that back, I know there is. That is good enough for me. His grace is enough for me. That is a better feeling than any scientist can give me by proving anything.

Big Week for ALS Awareness

It should be a big week to get the word out on this devastating disease known as ALS.  Specifically because we have three great spokesmen and ambassadors in New Orleans for the Super Bowl.  These three people are Steve Gleason, O.J. Brigance, and Kevin Turner.  All three are former NFL players that have been diagnosed with ALS.  And to have even more of an impact, Steve Gleason and O.J. Brigance have great platforms.  Gleason played his whole career in New Orleans.  Brigance was a part of the Ravens team that won the Super Bowl in 2001.  He still works in the Ravens' front office and is a big inspiration to the current Ravens team despite his advanced state of ALS.  Nevertheless, all three have big plans this week to spread awareness and I could not be more excited.  Team Gleason has already released a powerful PSA that can be found here.  Team Gleason leaves this message on there website:

This video was created for Steve's football family – the players and coaches of the NFL – to show that whether they had lined up with him or against him on the field of play, they all support him in his fight against this cruel and unrelenting disease.

These great players all stand by Steve's belief that everyone who gets diagnosed with this disease has the right to fight, has the right to proper treatment and to the best available care. And they believe, like Steve does, that ALS is under-funded, under-resourced and largely ignored. And that this is NOT okay.

This video represents the players' commitment to do something:
• • To take ALS out of the shadows and get people talking about it.
• • To get the best and brightest scientific minds together and ask them what they need to cure ALS.
• • And to make some noise, pressure the right people and raise the money to make it all happen.

This video is a message from these elite players, among the best and strongest in the world, to all the victims of this horrific disease to say: We're all in this together. And it's an invitation to the rest of the world to join the fi ght, and put all of our heads together to find a cure for ALS.

Very powerful indeed.  I told my mom yesterday that I would be much worse off without these men.  We all need heroes and these men are mine.  Especially Gleason and Brigance.  Lets pray that they can make a big impact this week so that the day we cure this disease can come much sooner.

The Dilemma

As we transition to a new year, 2013, we are probably  finding ourselves trying to better our lives through resolution.  Maybe by eating better or exercising more. Maybe we will try to be more positive about life and the reality of our circumstances.  I personally am constantly trying to keep the right perspective about my current situation.  But what is right perspective for my situation?  That is my dilemma.  I mean there is so much to be negative about, right?  I can't walk, I can hardly talk, and really can't eat anymore.  I can't hold or hug my children.  I can't even wipe my own backside for Heaven's sake.  There is so much this horrible disgusting disease takes away from you that it is downright depressing.  On the other hand, I have so much to be positive about.  I have two of the most perfect kids God ever created (at least in my eyes).  I get to enjoy them on a daily basis even if I can't pick them up.  I live in one of the most loving and supportive communities I can imagine.  I have a wonderful network of family and friends that  keep me running.  I live with the hope that with all of medical breakthroughs occurring today that I will one day be healthy again.  I have heroes like Steve Gleason and O.J. Brigance to look up to.  So I wake up every morning with a choice just like everyone else in this world.  A choice to be happy or depressed.  Some days the choice is difficult, but it's still a choice.  Today I choose to be happy and plan on continuing to be happy throughout this new year.  I want to close with something I heard Mike Ditka say the other day.  He said, "yesterday is history, tomorrow is a mystery, today is a blessing."  I thought that was a pretty good way of looking at things.  I wish everyone a happy and hopeful 2013.

Still Here

I have now obtained the use of eye tracking technology, so I plan on starting to post again. I've been pretty busy this year just trying to keep up with my two kids. They are growing up so quickly and I am soaking in every minute. That is one of the benefits of having ALS, I get to spend every day with them. They are such a blessing. They are perfect. As my hero Steve Gleason would say, the journey through this trial won't be easy, but it will be awesome. My body has gotten substantially weaker so far along this little journey. There are so many things I can no longer do that I used to take for granted. Luckily I have two awesome women to take care of me and put up with my crap. Thanks to my beautiful wife and mother. I could not survive without them, and I mean that in the most literal sense. I also have plenty of support from family and friends with a special mention of my two wonderful aunts Delynn and Deloris, who bring dinner every week. Every little thing helps and I am thankful for every bit of help. With respect to my earlier post on hope, there are many things going on currently in the medical arena, especially on the stem cell front, that give reason to hope. Additionally, many organizations, and even PALS themselves, are really spreading the word about ALS through the use of social media. The internet is such a powerful tool. Now more than ever there is reason to hope, to fight, to hang on. No White Flags. By the way, I typed this whole post using only my eyes. I can do this with the help of the Tobii PCEye. It is a pretty amazing tool. One more thing - if anyone is interested you can follow me on Twitter @STRONGWHENWEAK

Hope

With each new year comes new hopes, new dreams, new promises,new fears. We will never really know what the new year will bring. I do have hope for 2012. I have hope that my beautiful kids will continue to grow and flourish, hope for the health of my famIly and friends. That is what faith in God gives us. Hope. If that faith is not there, we have no hope. Without hope we wonder aimlessly through life searching for reason, for purpose, for meaning. Faith in Jesus gives us all these things no matter the situation. By having faith in God I do not shy away from knowledge. But no matter how smart I am or how much knowledge I gain I will not know everything. There will always be that thought in my head of a supernatural force controlling, swaying, changing the winds of time giving our lives and the events therein meaning and purpose.

Here's to a hopeful 2012 through faith in Jesus Christ.

Josh