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Friday, May 17, 2013

3 Years...

May 17, 2013

Today marks three years since diagnosis day. Three years of uncontrollable laughter. Three years with tears of joy and sadness. Three years of sleepless nights waiting for machines to alarm. Three years of pain and suffering for my son. My innocent son.

I will never forget diagnosis day. Its a milestone in my son's life that I wish were never placed there...a day that forever changed my life, my sons life, and my family's lives. I never knew how much could be affected by one blood test.

Three years of being a parent to an SMA child changes you. Some ways, you become a stronger, more equipped parent...a parent who flourishes in the good and the bad. Some ways, you become weaker, less equipped to deal...a parent who has unshakable moments of weakness in the good and the bad. On the surface, I tend to put off an aura that would push most people to believe that I am the stronger more equipped parent. As much as I wish I could say that is the truth, I am not in any way stronger than before I had Zion, and before diagnosis three years ago. I am the same man, an enlightened man...a man who sees life through a different lens...my perspective has changed.

Today was rough. Work was work, and I was attempting to do anything but allow my mind to wander into the realm of reality. Work is my break from the real world...a world full of pain and hurt, a world full of happiness and joy...into a world where I can focus on my job and life outside the fence doesn't come into play. Its a break for my mind, my heart, and my soul...a much needed one at that. However, on a day like this...an anniversary I wish I never had to celebrate...it inevitably finds a way in. The threshold is crossed, and personal life is mixed with work and it affects me. My tough shell of fatherhood is compromised, and it leaks into the essence of my being in more ways than one. Luckily though, 6 pm found its way to me and I was outside the fence a free man...and along with that came relief from a mindset in the prison where emotion has to be void. After speaking to a friend of mine, I was encouraged in a way that I have yet to experience in my 3 years as an SMA Dad. I don't want to seem ungrateful, but there has yet to be someone who has offered me a piece of solace or advice that puts my heart at ease over having a son with SMA. There are no answers as to why...no peace of mind that comes with any words of encouragement that really sinks in and brings contentment and removes fear. Tonight, something struck inside me at the carefully chosen words, and while peace filled me eventually, first the fear, pain, and emotional baggage had to leave me. As I laid on the bathroom floor crying without end and physically sick to my stomach over the broken heart I found inside me, sadness was replaced with joy as I remembered a promise I made to myself long ago. I once committed to never spending a single second crying over something that I could not change, and that instead I would embrace SMA and my son, without exception. You see, I had an image of what it would be like to have a son...and Zion doesn't fit what my mind created before I was a father. However, with that said there is no void in who Zion is as a son...there is no such thing as missed track meets and basketball games...or even the most simplistic of things like his first steps or riding a bike without training wheels. Instead there are breathtaking events that I never dreamed possible....like teeball games with Optimist Miracle Movers, and running in his wheelchair with his cousins at Grammy's house...to taking steps with his therapist in his new braces, and seeing him smile from ear to ear while riding in his first bike. There is the key to happiness despite all the odds being stacked against you...looking not at how incredible the odds are that someone can't do certain things, but instead to focus on how good the odds are that they will succeed at other things you never imagined they would do. I don't feel bad that Zion can't walk on his own two feet because just like he will tell you, most people walk on their feet but not very many kids get to walk in a wheelchair.

Tonight I described myself to my friend as a broken individual as I went through this range of emotion. Broken is a harsh way to describe yourself, but looking at it now I see that instead of being broken I am simply repaired. Any part of me that was broken before November 9, 2008 was fixed as soon as Zion was brought into this world. I am forever thankful for the healing power his laughter has...the remedy that can be found by looking into his beautiful blue eyes as he smiles from ear to ear. His love repaired me. He gave me purpose. And tonight, I end my night not thinking of this as d-day, but instead as a day to be thankful for three more years I have gotten to spend with a living miracle.

PH

Friday, May 10, 2013

1508

Well, I figured it was time for an update...

Tonight, as I sit here thinking about life...how time changes things, changes people...I can't help but be thankful for the constants in my life.

I am 26...feeling older by the day...stress ages you faster than you would like it to. But with life experience comes wisdom...and while I can't proclaim to be wise, I am definitely more grounded today than I have ever been in my life. I often get a "no way" response from people when they find out I am only 26...I hope not because I look older, but because of the way I carry myself. I have grown into the man I am today by the relationships I have with those around me...mostly the example set by my friends and family who have provided me with guidance along the years. Mother's Day is Sunday, and while this year I cannot spend it in person with my mother, I am so blessed to call her Mommy. I was blessed with a strong Christian woman as a mother...a mom who loved me more than herself...who pampered me too much...was a nurse when I was sick or hurting...a friend. I am proud to be able to say that my kids will learn her wisdom as I did growing up...and they too will be thankful for all the love and support she gives them. On top of that I have two beautiful grandmothers who raised my parents to be who they are today. God has showered love upon me through my family...from two sisters who love me despite my flaws...to numerous aunts who have all played a part in my growth from a tiny boy into a man. I am thankful that I grew up in a household that loved the Lord. That respected Him and His will for my family...a household where we went to church each Sunday. A household where we prayed when we sat down to eat as a family. A household where love abounded daily...through the tears and the smiles...love persevered. I am thankful for the constant example that my upbringing gives me when I raise my kids. Family is constant.

I am also thankful for the men in my life who have shown me what it means to really be a man in today's world where males are everywhere but men are few and far between. I have a father who ensured that I never had a need unmet. He led our home...was our protector...and I will forever be thankful for all that he gave up for us growing up. I had an easy childhood because mom and dad put the stress on themselves in order for us to have the chance to just be kids. Seeing how hard life can be as an adult, I see now better than ever how much effort that took them. Thank you Mom and Dad. I am also thankful for two amazing grandpas. I wish so bad I had a greater understanding of the wealth of information they were to me as a child...I would have soaked up even more from them. I miss Grandpa Smiley...but I know he is in Heaven looking down on me and my family...smiling at us. I have never in my life had an opportunity to see someone so sure of anything as my Grandpa was when he was dying and knowing he was going to Heaven. He didn't know then the affect that would have on me now...to know that even if the unthinkable happens with Zion, I have peace knowing he will be dancing in Heaven with Grandpa. I have prayed for peace with Zion...its a part of how God has answered that prayer.

Finally I am thankful for my rights as an American. To be able to sit in the comfort of my home and write my thoughts on here without threat of harm. To believe what I choose, without fear of repercussion. I am afforded these rights by the sacrifices men before me made to ensure that all of us were given the freedoms we deserve as human beings. This weighs on my mind more as the days count down to boot camp for my cousin Nick. His graduation party is tomorrow night...and I cannot wait to see the people come to celebrate the man he has become as he moves forward another milestone in his life. I am proud of you Nick, and as always I love you brother. You will always be my little brother no matter how big you get...and I will always be honored to call you that.

I am off for now.

Much Love,
PH

Tuesday, May 7, 2013

If I had a super power...

I was talking to a friend the other day and we were saying what super power we would choose if we could have one...I obviously said I would choose the power to heal my son. Monday night Zion gave me yet another reason why I would choose this power over any other ability when we were discussing why he needed to change pajamas. For those of you who don't know, Zion has a gtube (a port used to shoot formula feeds directly into his stomach) by his belly button. Every night we do a formula feed through his gtube while he sleeps to compensate for calories he doesn't consume orally through the day. We also hook him up to a pulse oximeter to regulate his oxygen saturation and heartrate. Long story short, he had on a pair of footed zip up pajamas that he didn't want to take off, and he refused to change into another pair. After I reminded him we wouldn't be able to hook up his gtube and pulse ox to his toe, he began to cry saying "it's not fair I'm the only one who has to do treatments..." Talk about breaking your heart...he is 100% right...it's not fair. But how do you explain to a 4 year old that despite that fact he still has to do all these complicated and uncomfortable things because they make him better and he cannot survive without them? He continued to tell me how he didn't want to have to do treatments anymore and it wasn't fair he always had to do them when no one else did. It literally broke my heart and also brought a whole new level of fear as I realized that not only are we dealing with the physical aspects of SMA but we will also have to face the emotional distress it will put upon him as he is able to comprehend more and more of his condition. In that moment I just wanted to wrap him up in my arms, and with a simple kiss heal his broken body and mend his broken heart. I think of a child scraping their knee and crying for mommy or daddy...as the parent rushes up they sweep the child off their feet, dry their tears, and kiss the "boo boo" to make it all better. Some ailments or injuries are an easy fix for a parent, and the child goes back to normal almost immediately. My heart weighs heavy because Zion faces a difficult journey that no number of kisses can cure...nothing I can do can magically take it all away for him. I won't be able to stop the cruel words of an ignorant bully from being said. I won't be able to cure him so he can run up and down the field playing with the other kids. I won't be able to fix his body as it fails to produce a breath on its own. I don't have that super power...I don't have that fix all kiss. All I have is a pair of loving arms...ready to pick him up and find joy despite the pain. I have legs that can carry him up and down that field running from the other kids. And I have the privilege of hooking him up to the machines that help him make each and every breath. I wouldn't trade anything for Zion. He is my best friend. And in reality I do have a super power. I help create little miracles...wrapped up inside skinny legs, trembling hands, and the most beautiful blue eyes you will ever see. So tonight, I find peace in that, and know that ultimately he is all the super power I will ever need.

Much love,
PH

Thursday, May 2, 2013

My poor boy...

I can't imagine anyone who is reading this isn't already familiar with what's going on with Zion, but I am going to go ahead and give some background. We are back up at Riley with a bout of pneumonia and the flu..so far this is day three here for big Z, and as of yesterday there was a chance we could go home today. He had kicked the fever, was going 4 hr rounds of albuterol nebs, percussion vest, and cough assist treatments...and he was looking good. I stayed up until 3:30 watching him sleep while becoming consumed in a book...and at 6 this morning we woke up to another round of treatments. For those of you who aren't familiar with a percussion vest it's essentially a wrap around his chest that pumps air in and out of it in an attempt to loosen any phlegm inside his chest to assist in him coughing it up to clear it all out. It's 15 minutes of hell for him...the wrap gets in the way of his g-tube, along with the other wires connected to him...and it literally just beats him around. I can't imagine what it feels like to have to do so many things that he can't completely comprehend, most of which are extremely uncomfortable, with his mommy or daddy trying to convince him it's for his own good that he do them. Every parent inevitably at some point has to force their child to do something they know is best despite the discomfort or pain it's going to cause their child, but at this point I think Chelsea and I have done enough of that for a lifetime. What renews my strength as a dad is the fact that Zion was blessed with a comprehension level above most kids his age, and along with the routine comes understanding an ability to perceive that this crap actually makes him better. A friend of mine who has dealt with issues similar to Zion his whole life put it into perspective when he said that I need to look at the discomfort as life savers for him. Jake, you are an inspiration and a source of hope for me, and I want to thank you for giving an example of what it's like to rise above the bad and to see the good in life all around you. You know firsthand how difficult all this can be, and as Zion gets older I hope he too can shed light and hope to kids at the age he is now. I'm glad I can call you my friend and have been able to see make the best of a difficult diagnosis. I ask you all to continue to pray from Zion...pray for healing from these two bugs...pray for a cure for SMA. Hopefully we can still go home today, and I look forward to seeing you all soon.

Much love,
PH

Wednesday, May 1, 2013

Round 2 for the night...

There is a natural occurring sense of tranquility that comes along with the dim light of a hospital room and the quiet buzz of machines at 10:45 at night. Unable to sleep peacefully, and with a head full of random thoughts, I figured I might as well put the pen to the paper one more time before calling it a night.

I am realizing more and more how far out of touch with the current world I am as I sit watching a few random things on television. I own a tv, but I don't have cable or satellite...I don't have the Internet...I don't even watch the news. After seeing what comes across the TV I feel an even greater sense of satisfaction that I have went without them for around a year now. When I do get clued in on current events in our world I only seem to get more frustrated over what we have become as a human race. I have had this recurring thought that many of those who have passed but came from an earlier generation, the men and women who valued ideals this nation was founded upon and worked everyday of their lives...if they could see what we have come to as a nation that they would turn over in their graves. Our society as a whole is almost laughable at times...the things we value, the things we take for granted, the lifestyles we live. Convenience is everything. Morals and character have gone by the wayside. Work ethic is gone. It's sad really.

I like to consider myself a patriot. I am an American, and I am damn proud of it. I love my country, my rights, and I would die defending both. I am proud of my cousin Nick...the choices he is making as a young man prove that age is just a number, and maturity supersedes any number that years define us by. I wish I could go back in time and do what he is doing with his life...but I would lose a lot of things I value now that I couldn't give up to do so. Our nation needs many more men like him...a strong head on their shoulder and a willingness to serve. Many many people before him gave their lives so we can have what we enjoy today, and I am thankful for that. With that said, I have a new desire and drive to do more to affect change in my domain. To be more than an everyday American who is so focused on myself...and to instead be someone that initiates change bigger than my own life. That's my goal.

My question is where to start, where to go from here? My only facet to do so tonight is to speak my mind on a few of the current events in today's world, and in doing so hopefully ruffle a few feathers and get some like minded people to do the same.

First, I want to say I am proud to have the right to own a gun. I don't care if anyone else owns one, but I will never freely give up my right to bear arms. Gun ownership is second only to my right to freely believe in and support my Savior Jesus Christ. A bible beside my bed and a gun in the drawer below it makes for a very secure home. I am thankful for the right to possess both. Our nation was founded by men who understood the importance of both, and I think we as Americans need to stand up for the right to both. This flows into my second point. The  sad truth is that we are steadily going in a direction where we could lose both. There was once a time in America's history where Christians were the majority and together we cohesively stood our ground against what we thought was wrong in defense of what we knew was right. In today's culture "political correctness" has made us look like closed minded intolerant people, and persecution has pushed us to keep our mouths shut. What do you think your calling is-closet beliefs that are better kept under wraps, or proactively speaking on behalf of the wisdom found in the bible? The answer is clear but the path to making it practice is rough in today's culture. God never promises an easy road, just the ability to traverse it despite how hard the climb may be. Be a bold Christian, God will show you favor for doing his work.
My third point is sure to bring about debate, and despite the flack I may hear, I feel completely comfortable speaking my mind on it as well. I have never been so ashamed of a president than I am of Obama. His lack of moral character is ridiculous, and the people he raises up and praises for their immorality is laughable. It's sad when people get personal phone calls for being gay, or drug addict singers get more attention than when an American war hero is murdered in cold blood. What does that tell you about him? It speaks volumes to me. What do you think his goal is for our country? I can tell you it's 180 degrees opposite from mine. I want to see America restored to the great nation she once was. A nation that blessed God and made him the center of our society. A nation that defended itself not stuck it's nose in everyone else's business. A nation that stood on its own and valued its people. Call me crazy, but I don't think any of that is on Obama's agenda. This is the man that is supposed to be leading us...but last time I checked its the government of the people..where are our voices?

Tonight, I challenge you. Be more than you are today. Stand up for yourself. For your kids. For your grand kids. For your God. Start small. Voice your opinion. It's your right. Affect change. I know I am. This is a small start, but a start nonetheless. Defend liberty. Defend honor. Lend a hand. Be a real American.

Goodnight all.

God Bless America,
PH

Heart hangs heavy tonight...

Well, first off I am updating this from my iPhone on a tiny screen, so I apologize for any misspellings or sections that don't make sense. It's relatively hard to see. :)

I am sitting up here at Riley with Zion. To be brutally honest, it sucks. The best and worst parts about it are that Zion is the one laying connected to machine after machine after machine. I hate SMA and the trouble it brings him...yet his strength is a source of inspiration, and when I get depressed over it all he renews my hope and brings me peace. He is my gift straight from God...my little piece of Heaven on earth. Pneumonia and the flu for him...yet he remains resilient, and he is kicking their butts. We should get to come home tmo if he keeps his fever down and continues to improve.

My heart also weighs heavy over my situation in life. I am 26, divorced, and oftentimes lonely. God provides though. My friends and family are amazing. I never have to worry about a lack of support. I'm blessed to have parents who still provide for me and ensure a need is never unmet. My aunt and my parents kept Zoe so I could be here for Zion tonight...I truly will never be able to repay all my family does for me. I have came to the conclusion that I have no friends...just family. Just ask my kids...uncle Robbie...uncle Cody...they are my brothers now not friends. Even my cousins I consider brothers...uncle Kyle, uncle Nate, uncle Nick. I'm just blessed. Tonight, in a hospital room that is all too familiar to me and my son, I sit reflecting on my past and am thankful for the good and the bad. My Pocahontas will come someday, and eventually my wolf pack will grow lol. Until then I will continue to embrace my children and the relationship I have with them. It's a difficult thought to think of bringing another person into the hardships that inevitably come with sharing my life with another. I fear Zion will not always reign victorious over his condition...and its really hard to find someone who can comprehend the mental and emotional toll this brings upon me. However, I believe in love, and that the perfect woman is out there. One that will love my kids on the same level I do. A woman who will understand why she will never possess my heart as they do. A woman who I can see myself growing old with, and who is capable of handling the stress of SMA. The hardest thing is inviting someone who I will care about to be a part of a loss as intense as what could be...it's just hard. I dont think God intended for me to battle this all alone, but I also know that right now this is how my life is meant to be. Things dont work out for a reason, and I know with 100% certainty that while this is difficult, it would be worse if I were still with their mother. I seem like such a pessimist, but I have found this is an outlet that I need...a way to release the stresses my heart cannot contain. There are reasons that 26 doesn't fit me...this is a part of it. With that said, I wouldn't trade anything for my life. Not too many people know their purpose in life...their true calling...and while I haven't found all of my calling in life I have found the majority of it. My kids need me, and I need them. I was lost before I had them, but now, I'm found. :)

Goodnight for now.

Much Love,
PH

Sunday, April 28, 2013

It's been long time...

I shouldn't left you...without a dope beat to step to...

Hello everyone,

As you can tell, its been a very very long time since I have updated this thing. However, I have felt it appropriate to bring it back into style. I love to write, and for some reason a few people like to see what I post on here. My main goal when I started this page was to bring hope, peace, and love to those around me...to glorify God with the testimony He has given me, and to show the world what life is like raising a child with SMA. I have fallen off the map with it, but have found a renewed passion for it. So here goes...

Since I last posted Zion has progressed quite a bit, so I am going to start with a little background into the little man, and hopefully clue those in who have missed out on the updates they once received.

Zion is getting weaker. Its a fact that I hate to have to share because with weakness comes additional problems...and its a road I do not want to have to go down. However, with every lost ounce of muscle comes a new strength in Zion's heart that shows me without doubt that everything is going to be just fine. I would be lying if I said I were not scared for the well being of my son, yet above all I find peace knowing that as much love is in my heart for him the love God possesses for Zion is greater still than any love I have for him. God is good in many ways...but when I stop to think about how I feel his mercy the strongest it is through the testimony of my son. At 4 years old Zion doesn't get the opportunity to embrace life as most of us do...yet through pain and struggle comes great joy...a joy that is endless and arrives without any effort at all. Walking, running, any many other things we take for granted are things that Zion will most likely never get to experience on his own...and while some moments Zion's heart weighs heavy over this, he bounces back with a tenacity towards life that I have yet to fully comprehend. I think of my own life...my own shortcomings and mistakes and I can't help but embrace the good and the bad when I see him enjoying everything with an innocence so pure that melts even the toughest and hardest of hearts. There is a memory of him that will forever remain locked away in my heart as one of the most sincere forms of happiness I have ever experienced on this earth...a memory that I wouldn't trade for anything. One night Zion, Zoe, and I were having a routine dance party in the living room to a family favorite "Need You Now" by Lady Antebellum. I picked Zoe up first and as we danced and I twirled her around by her arms I could hear laughter from both my kids, and the feeling inside my heart is one I would  have never felt without them. I turned to see Zion's face fully illuminated as he asked me to do the same to him...and in a moment my heart sunk to the deepest part of being...knowing that he isn't strong enough to be twirled around by his arms like Zoe...knowing that he couldn't experience something as simple as that literally broke my heart. Discouragement quickly faded away and the void was filled with awe inspiring joy as I picked him up, held him close against my chest, and we spun around and around all while he sung the sweetest song in my ear. His laughter is so contagious, and when I get to share moments of his life like this, my calling is more definite than anything I have ever felt before. My son knows what it means to love life...every ounce of his being is longing for it...despite everything being against him, his innocence and at the same time ignorance shoves discouragement out the realm of his spirit and replaces it with happiness. I dread the day when comprehension of his condition dampers this inside him, yet at the same time God has prepared a way for him to conquer the hardest of trials without harm...and I know this battle will be won as well. I am thankful for a God who loves us and prepares a way for us to persevere despite some of the most difficult of life stories. I am also thankful for Him blessing me with a child with SMA. It breaks my heart to utter such words...yet it just seems right to be thankful for the good and the bad.

 Today...my heart has caught fire with a new hope of a better tomorrow, and a bright future for me and my children. I must admit it is difficult to be 26...divorced...raising two children on a limited time frame...but above all I know that all the bad combined wouldn't be worth trading for a life of ease and comfort. I have all the comfort I could ever ask for wrapped up in two beautiful little packages. I am thankful for children and the love they show without ever requiring a quota to be filled. They love me despite all my flaws...all my mistakes...and all my shortcomings. Now...my challenge to you...embrace life. Embrace the good and the bad. Embrace the ugly. Embrace hardship. Live life to the fullest. Life as if the next breath could be your last...because the ugly sad unfortunate truth is that we are never guaranteed anything. I sadly have a child who doctors say won't life as long as a "normal" child without SMA...however Zion has proved on numerous occasions that the "wisdom" doctors possess is flawed and he isn't controlled by his condition. I will end with something I have said before but will remain true until the day I die, "Having SMA cannot hold Zion back from ANYTHING, but having a child with SMA has given me EVERYTHING."

Love You All,
PH