tag:blogger.com,1999:blog-3510873728031492752024-02-20T00:26:33.490-08:00Ramblings from an S.M.A. DadS.M.A. or Spinal Muscular Atrophy, rocked my families' world on May 17th 2010, when my son Zion was diagnosed with S.M.A. type 2. Having S.M.A. cannot hold Zion back from doing ANYTHING, but having a child with S.M.A. has given me EVERYTHING.hoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-351087372803149275.post-21290319271075278762013-05-17T20:49:00.000-07:002013-05-17T20:49:12.978-07:003 Years...May 17, 2013<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-36380791583538137762013-05-10T18:23:00.000-07:002013-05-10T18:23:59.652-07:001508Well, I figured it was time for an update...<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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I am off for now.<br />
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Much Love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-53712268820558249532013-05-07T20:44:00.000-07:002013-05-07T20:44:30.181-07:00If 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.<br />
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Much love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-83110305882892056002013-05-02T04:36:00.001-07:002013-05-02T04:36:20.861-07:00My 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.<br />
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Much love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-3378530357810355862013-05-01T20:22:00.001-07:002013-05-01T20:22:36.158-07:00Round 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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?<br />
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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.<br />
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Goodnight all.<br />
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God Bless America,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-53016400614552745562013-05-01T16:54:00.002-07:002013-05-01T16:54:32.335-07:00Heart 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. :)<br />
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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.<br />
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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. :)<br />
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Goodnight for now.<br />
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Much Love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-10276884880276373212013-04-28T10:36:00.000-07:002013-04-28T10:36:07.459-07:00It's been long time...I shouldn't left you...without a dope beat to step to...<br />
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Hello everyone,<br />
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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...<br />
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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.<br />
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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.<br />
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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."<br />
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Love You All,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-41004766410650910992011-09-09T19:54:00.000-07:002011-09-09T19:54:04.987-07:00PerspectiveTonight was a really cool night for Zion. My sister had spoken to the coach of Greencastle High School's football team and he invited Zion to come to the game to walk out with the team, and watch the game from the track beside the field. Zion thought it was so cool, and the coach was really great with Zion. He kept telling him the team "needed his help to win," which really made Zion feel special and brought tears to my eyes. It was just a cool thing for Z to get to do, and it is something he won't soon forget. <br />
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On a different note, as usual the night could not go without an event that inevitably detracts from enjoying Zion's happiness generated from the love and generosity of others. No matter how hard Chelsea and I try to keep others insensitive behavior from bothering us, sometimes you can't help but get irritated at others ignorance and sheer stupidity. We have come to expect that from strangers, however from family I feel it is completely unacceptable. I don't want to be a rag, especially on something like a blog where the other party cannot defend themselves, but seeing as how it is my right of free speech, who cares.<br />
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Right before halftime the announcer at the game (Mr. Van, you rock as always) devoted about a minute to letting everyone know about the upcoming 5k Walk/Run that my family is organizing to help us pay for costs of equipping our van for Zion's wheelchair. During this time a member of my family was in the stands shaking their head in disgust. This is not the first time that similar things have been done or said in regards to people who truly love Zion generously helping Chelsea and I provide him with the resources we cannot afford to provide him on our own. How dare you. <br />
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I feel that I need to take a second to explain just what all has been done for Zion through the love and compassion of my friends and family through our battle with SMA. We have been either given the specific item, or the funds to purchase the items on this list by the donations to the FIGHT FOR ZION Fund.<br />
A Dynamic Stander<br />
2 Manual Wheelchairs<br />
A K450 Permobile Power Wheelchair<br />
A Stationary Stander<br />
A Van <br />
A Captains Bed<br />
As well as help with paying for numerous trips to doctors appointments, hospital stays, and past medical bills.<br />
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For all those who have helped us, thank you. I cannot explain with words the many emotions we feel dealing with the difficult realization that Zion has SMA. I find comfort knowing that Zion has been given assistance to succeed in numerous opportunties he otherwise wouldn't have had if it weren't for the love you have shown us. Dealing with a child who has any sickness is extremely difficult, and it is because of my personal knowledge of this struggle, that my heart goes out to all those parents and children who are in similar situations, those who fair better than Zion and those who fair worse. It should be a struggle that we all collectively find strength in each others testimony and support and love.<br />
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I hear quite a bit from people that they are proud of me and Chelsea for doing such a good job at handling our emotions with this devastating situation with Zion. I hear people say that they wouldn't be able to handle such a situation, and that we gain a lot of respect for taking such good care of Zion. I feel that this is true about 80% of the time, and the 20% are the times that people don't get to see. These are the nights with the tear soaked pillows, the moments when we must leave the room to hide our tears from Z, the crying in the shower, the screaming at God in anger questioning why this has to be this way. I would give my life to cure Zion. And I find a small amount of comfort knowing that there are so many people who would do the same. I also find a sick feeling in my stomach knowing that someone who should be cherishing Zion and supporting us is shaking his head in public when they announce his walk as if we are boosting our bank accounts at others generosity. If I saw it, then so did others who know that this person is a member of my family. Its embarrasing. Its sad. I wish so bad that SMA was something that had a treatment. The sad reality is that they can treat the symptoms using techniques used to treat other diseases, but there is literally no treatment for SMA or its progression. The even darker reality is that SMA kills children every single day, and without a cure or a miracle from God, it will kill Zion too. Explain how that is fair. How does God allow that to happen? Why Zion? I know that my Heavenly Father loves Zion more than I do, and He has given me peace about this, and as bad as it hurts me to even write about SMA, I know Zion is ok. I pray daily that God would give us a cure. I pray daily that God would just give us a treatment to stop the progression. I pray that God would let me see my son take his first steps. These dreams becoming reality is my hope. And the fact that someone so close to us and Zion would know these facts about him...seeing us lug his wheelchair down two narrow ramps...and they shake their head at an effort to raise the money to help us effectively transport his wheelchair...how dare you. <br />
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Here is another perspective. Zion is small now, and already his equipment is too much for Chelsea to load in and out of the van by herself with Zion and Zoe. What happens when he is ten? Fifteen? My family relies on a single income to provide for all our bills plus all the other expenses related to Zion's care. This is a never ending battle, purchasing new equipment as he grows and progresses...all to accomodate what most kids do naturally on their own. As a father and a man it kills me to not be able to provide all the equipment for Zion on my own. You think I enjoy asking for help? You see our struggle yet you shake your head? How dare you. <br />
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This is a battle that no one should have to fight, and when people see Zion their compassion to help restores my faith in mankind. I started this post with two purposes. One was to thank those who help, and to show a little bit into what all your compassion towards my family and I has allowed us to provide for Zion. Without this help Zion would not have many opportunities most people take for granted, and it brings us joy to see Zion gain independence through your love. Thank you. The second goal was to open the skeptics eyes to the reality of what we deal with. I assure you, I would love nothing more than to have the ability to take SMA away from this world. I would love to make SMA a thing of the past, or even a condition that a child undergoes treatment and recovers from to never deal with again. Sadly, I would even love the ability to simply stop the progression in Zion, and have to face the already life changing effects it has had on his body. The harsh reality is that I have never seen my almost three year old son take his first steps on his own...and for the record I will go through any means necessary to give him the next best thing...no matter how many shaking heads I get. So next time, stop shaking your head and think for a second what it would be like if your child was going through what Zion is...something is wrong if you don't feel anything but love and compassion in your heart for Zion.<br />
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Sorry for the rant, and I hope it all makes sense. Again, thank you for all you do for us, it is not unappreciated. <br />
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Much love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-89004535135058453292011-08-17T18:21:00.000-07:002011-08-17T18:21:30.329-07:00GPHGreen. Party. Hat.<br />
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So, I am sitting here at Peyton Manning's Childrens Hospital, watching Zion peacefully laying watching Alpha and Omega on his iPad. He is such an amazing boy. His tech lady was laughing nonstop along with us, making each and every step a new dimension of his "slumber party." What started as a smiley face on each hand quickly turned into head measurements, gooey hair, electrodes, tape, and even a under the nose "party mustache." With a few minor fusses, and a grease pencil over mommy and daddy's faces, he calmed down, and soon will be asleep peacefully with literally no breakdowns or even a single tear. God blessed us with the best boy in the world. God works in mysterious ways...yet sometimes His love is so plain to see that it never ceases to amaze me how easily we forget to thank Him, or even celebrate His existence. God has shown me what true strength is tonight. Zion is a beacon of hope to me, and has given me more tears of joy and happiness than any single person should be allowed. Thank you God for a truly amazing and undeserved gift.<br />
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I also wanted to let everyone know a little update to my previous post. Today was a long day, with numerous phone calls to several hospitals, administrations, as well small arguements with doctors and nurses...yet God worked it all out for us. We are here tonight with a regular sleep study, tomorrow night is a normal night with the addition of a bipap (cheers) (and please several prayers as it could be a battle), and Friday night is another sleep study complete with a new party getup and a bipap to measure the difference it will make in his sleep. This will be without doubt a long few days, but I know that God will take care of us, and in the end Zion will prosper through it all. So, as I previously wrote asking for help to provide Zion a bipap, I believe that God has answered our prayers, and through this experience we should have a bipap at our doorstep not long after returning home. If all goes well the next few days we should recieve the order from the doctors for a bipap and instead of having to provide one ourselves his doctors should pull through for us. Thank you for your help regardless, and I cannot express my gratitude for your prayers and willingness to help our son. We love you, and rest assured that no deed goes unappreciated and we are inspired to help anyone in need as you all have helped us. <br />
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I am going to sign off for the night. I will do my best to post as many updates as possible over the next few days. We would appreciate your continued prayers, and again we love you all.<br />
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Much love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-11881710950059477152011-08-17T02:55:00.000-07:002011-08-17T03:01:20.111-07:00LumpI called in to work at 4:53 a.m. today. There is a rule that you have to call in before 5:00 or you will be penalized for late call in. I woke up at 4:30, shaved and jumped in the shower, and in a towel ran into Zion's room as his pulse ox alarm went off...finding him at 86...86. Are you kidding me? Multiple times in the night below 90. 86 though? And the man who called himself Zion's pulmonologist at PMCH says he no longer feels comfortable treating Zion, and has "referred" us to Cinci Childrens. Who, by the way, cannot get us in until sometime in October. We have been trying to make the first appointment there for a couple months. So for several months we have had no one to go to for any type of breathing issue or any new medical equipment, the only person we really can even talk to is Dr. S at PMCH, and he is too big of a coward to get us the equipment that every other SMA child has to ensure their numbers are flying high on their pulse ox all through the night. Peace of mind. Peaceful breathing. Its what we need and what Zion deserves. It blows my mind that someone who is supposed to be the expert on breathing has referred us to a hospital three hours away, a hospital that cannot get us in for months, all because he doesnt feel comfortable giving us equipment for Zion that he isnt used to. Thats what this all boils down to...he hasn't dealt with someone as small as Zion on a bipap. <br />
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So here I sit. Having just heard the news from Chelsea that another SMA warrior recieved their wings last night. Lump in my throat the size of a softball. I am sickened by this. My heart goes out to the Jones' family. I have never met you, spoke to you...but I love you. My deepest sympathies, and I truly mean it, I am praying for you. You cannot see it now, and it seems crazy...but I promise you it will get better and God will give you peace.<br />
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Thats my dilemma. You see, the Jones' family was one of two families narrowed down for the next Extreme Makeover Home Edition just weeks ago. And now, they have lost their beloved daughter to SMA. Its never ok to let your guard down for a second...to become complacent...to get too comfortable. I find myself trying to make myself feel ok about things...and in turn I get a little too comfortable with this idea that "Zion is stronger than him or her" and "Zion is a type 2 not a 1" or any other statement I make to feel a glimmer of peace in this war. Its not ok to become complacent.<br />
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I sit here in Greencastle, Indiana....I look back in time a year and I am in awe, truly in AWE at the love and compassion on my community and family. Last year we were given the money plus more to pay for Zion's power chair. We have been showered with financial blessings from so many people...its truly amazing. We have been able to get Zion a manual chair, a power chair, a new stander, a tomato seat, a new van, pay medical bills, stop lawsuits...I mean the generosity of people, some who I don't even know, has saved my family and kept a roof over our heads. Wow. <br />
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If you have read my previous blogs you know how much we are pulling for a cure to save all the SMA kids across the globe. As a man, and as a father, I wish so much that I had the power to heal Zion. Its embarrassing to me that I cannot provide for Zion all the things he needs, and that I have to rely on my family and the community to step in and help provide what I cannot. And it truly makes me even sicker than I already am to do this, but I am asking you who read this to help me yet again provide something for Zion I cannot on my own. We need a bipap for Zion. Bipap means bilevel positive airway pressure. Machine breathing. Zion stops breathing in his sleep because of his sleep apnea. Hence, numbers like 86 pop up because Zion stops breathing and his numbers drop. Since we cannot get one from our pulmonologist the reality is that this is now something I am going to have to purchase out of pocket, because Zion cannot continue to sleep without one. Many families have advised us that SMA kids need to stay above 94 at all times, and without a bipap that will not be possible with Zion, and any number below 90 is extremely unacceptable. Looking up bipap machines online, this will run us anywhere from $750-$5000 when looking from the spectrum of worst to best. Of course, I want the best for Zion, yet the reality is that I currently cannot afford the worst bipap for him on my own. So I am asking you, if you can help in any way, we would greatly appreciate it. I hate asking for money, but I feel an extreme sense of urgency in getting this equipment for Zion. I cannot sit back and allow myself to feel that all is well, when in reality a moment of slack could lead to serious problems for Zion or worse, something that I have not yet allowed myself to come to terms with. I feel that God has given me peace that Zion will see a cure for SMA, but I cannot allow myself to let that restrict me from doing everything I can to get all the resources he needs.<br />
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So, today please say a prayer for Zion and the Jones family. Last night as I laid in bed with him as he was falling asleep I laid my hand on his chest and raised my other hand towards Heaven asking God to come touch my son and heal him. I know that God will give us the cure for SMA. I look forward to dancing and celebrating the news that the days of SMA will be over. For now, we have heavy hearts as the realization that our dreams are not yet reality hit a little too hard as we mourn the loss of sweet Skylar. Skylar, fly high. Dance in Heaven, run, play, and be free with the rest of our beloved SMA angels. You will not be forgotten.hoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-49177808516292321202011-07-07T23:21:00.000-07:002011-07-07T23:21:01.442-07:00CuatroWhy am I awake at 1:52 am? I have no clue...but here I sit, watching Law and Order SVU and writing this blog. <br />
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It has been a little while since I have posted anything on here. I blame yard work, minor house projects, and life. To be truthful, I don't really have much of a point for writing this other than I haven't done one in a while and I am up late bored.<br />
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Tonight I came home from my game, relaxed, and as everyone else went to bed, I stayed up...sitting and thinking. I was laying on the couch when I heard Zion stir in his bed, and as his stirring turned to whimpering and then to crying, I went to check on him. It seemed as if he had just had a bad dream...something that I have never really thought about...my kids waking up to nightmares. Strange. But that is neither here nor there. I then sat beside his bed, looking at the marvelous life...inhaling and exhaling. Zion has been hooked to his pulse ox at every nap and every bedtime for a while now, but here recently his numbers have been a little low. Its a feeling I cannot explain. To know that something as terrible as strapping to your child a machine that measures their oxygen and heartrate every time they fall asleep is just the tip of the iceberg....to know that things much worse will come and they too will become routine. Its a bad feeling to be honest. But as I sat there, running my fingers through Zion's hair and tickling his back and face, kissing his forehead and just embracing that moment...I closed my eyes and I said a prayer...and God spoke to me. His answer was so sweet...so reassuring. I prayed for health not only for Zion, but for Zoe as she hasn't been feeling too great, for Chelsea as well for her back and waking up sick today...but as I prayed for my son...God spoke to me like never before. I have felt peace from God concerning finding a cure before...peace that allows me to get through each day with hope. But tonight, as I asked God for good numbers and peaceful sleeping for Zion, God told me not to worry. I thought of Matthew 6, and I thought of worrying, and God told me to stop worrying about Zion's numbers and just enjoy the moment. Enjoy watching my son's chest rise and fall. Enjoy the soft skin, the sweet smell of his hair, the feel of his forehead on my lips as I kiss him. Its amazing how when he wakes up and is fussing and crying, a simple kiss on the forehead and a quick "its ok buddy" brings him back to reality, and all is well again. God reminded me tonight that worrying is like spinning your wheels. As I hear all too often at work, "it is what it is." Sometimes life changes and you get a curveball. It is what it is. We can either sit around worrying about what is to come, or we can take it all in and enjoy life and never miss a moment. A moment like sitting in my child's bedroom in the middle of the night watching numbers and seeing life at its greatest. Some people would see Zion at night and see a picture that might bring tears to their eyes...for me and Chelsea we are passed the tears and now we see God's perfect creation. He created every inch and every aspect of Zion, and even now at 2:16 am God's loving arms are rocking him, causing his chest to rise and fall. So, goodnight all. Sleep is calling my name, and with peace delivered from my Father, I can go to bed now.hoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-553895040584661052011-06-07T08:43:00.000-07:002011-06-07T08:43:46.724-07:003I woke up this morning to Chelsea in tears as she gave me the heart breaking news that another sweet child has lost the fight against SMA. Brynlee was almost 4 years old, and as the struggle became too much she traded in her earthly body for her angel wings and now flies free in Heaven with all the rest of our beautiful SMA angels. As Chelsea and I have met more and more SMA families through facebook we have grown to love and cherish the stories of success, the pictures of truly amazing children and families, and we have shared tears as physical struggle and even death has plagued our friends and allies in the fight against this horrible disease. Brynlee's passing has struck a special place inside Chels' heart as well as mine...with Zion turning three this November, it makes his condition that much more of a reality for us. No one ever wants to face to reality that at any moment they could face the impossible task of saying goodbye to their child for the last time as they bury the most valuable gift they have ever recieved. In my last post I had a thankful heart as I reflected on the amazing child Chelsea and I were blessed with three short years ago, and as I sat back reminiscing on all the great memories we have made together I couldn't help but smile inside and out. Today, my heart has sunk deep to a place that feels abnormal and to be quite honest makes a sick feeling rise from the most inner part of my being. Losing a child is something that no one should ever have to face...yet SMA is making that nightmare a reality for too many families, with no plan to stop anytime soon. I cannot imagine the spectrum of emotion that Brynlee's family is feeling today...in the wake of tragedy....the sadness, loss of hope, and physical, emotional, & spiritual pain they are enduring. My heart goes out to them today, and as I sit writing this blog I beg you to please take a moment or two out of your day and say a prayer asking God to give them the peace that only He can provide...and that as He wraps His loving arms around them they will feel the comfort and strength they need in their time of loss. I close my eyes and I see all the SMA angels celebrating in Heaven, doing all the things that they couldn't here on earth...dancing, running, jumping, and even the simple things...standing together holding hands singing praises as another SMA child gains their perfect body...walking hand in hand celebrating that day that the cure is found an no other child has to fight the battle they were once were burdened with. So, as I log off and finish this, my few words of encouragement for Brynlee's family are this. As I reflect on the journey of SMA that I have been blessed to have been a part of with Zion, I see a tranformation of my view of my relationship with God, as I learned more and more from my relationship with Zion as his earthly father. As much love as I have inside my entire being, it fails to compare to the love that God, Zion's Heavenly Father, has for my son. God gives Zion the strength to get through each day, the strength to take each breath, and the strength to fight his personal battle with SMA. God's love also does what we as earthly parents cannot do for our children...it takes them from their home on earth to their home in Heaven when the struggle becomes too much...it takes away all the pain and suffering and replaces it with freedom and comfort. Through Zion I have learned that God loves Zion more than even I do, no matter how impossible that seems, and He too loves me with the same fatherly love I have for my son. And in my times of sorrow, pain, and struggle He gives me the strength to perservere. So, in your time off loss, look to your Heavenly Father for the strength, comfort, and love you need. He will overflow your cup...He will fill every void in your heart today...He will show you that no matter how hard this loss is, Brynlee's gain as she flies free from SMA will help you make it through.<br />
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With Sadness,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-30647144565020649552011-06-06T20:43:00.000-07:002011-06-06T20:43:37.710-07:00Backyard BonfireWe had our first backyard bonfire of 2011 tonight. Its amazing how relaxing and enjoyable a small fire, a couple hot dogs, and a bag of marshmallows can be. As I sat in the backyard with my family and two of our best friends, I had this extreme feeling of contentment and thankfullness pour over me. I look at a kids picnic table and I see Zion, huge smile...covered in ketchup and chocolate...and I feel truly blessed. I am sure most people see a child with so many struggles ahead of him...with so many obstacles that without a cure he will not be able to overcome...and so many opportunities that life did not afford him that it did to other kids. Me, I see a child who has made my life worth living...a child who finds happiness out of sitting on a diaper box all by himself...a child who shows off by "standing up" as he slides off the couch and his legs dangle before hitting the floor. I see Zion hunched over, with his back curved more than nature intended it to, feet hanging almost weightless as the grass tickles his toes...and I am overwhelmed with pride as my son sits at that picnic table and eats a hot dog and mac and cheese all by himself. I see a child who is so better off than hundreds of other SMA kids out there...and I say a thanksgiving prayer to my Heavenly Father for blessing me and my family with so much strength inside Zion's tiny little frame. I see so many children struggling with so many aspects of life that everyone else takes for granted and I am humbled and thankful that my son is able to sit on the Pamper's box on his own and can stand up on his own beside the couch. I think of the excitement other SMA families must feel when their beautiful child lifts his or her head on their own, or accomplishes any other amazing thing , and the tears begin to flow. I am so blessed and thankful and reverent. Other people may see some SMA children and feel pity or sorrow or sadness for the child and the parents...but I assure you this. When an SMA parent sees their child doing something that everyone else takes for granted or would view as nothing...the parent sees their hero moving mountains and changing lives in ways no other person on earth could ever do...even if the only person they are impacting in that moment is mommy or daddy. So when I sit at a backyard bonfire with my family and friends and I see my beautiful son sitting at that kids table it becomes more than just another weenie roast...it turns into a moment that I will never forget as I feel the true purpose for my life. Tonight was a great night, and I am so glad I was able to spend it with the people I did. Never take anything for granted...find joy in everything...and be thankful for all that God has blessed you with. <br />
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I love you Zion.<br />
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PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0tag:blogger.com,1999:blog-351087372803149275.post-4852361565133159122011-06-01T19:32:00.000-07:002011-06-01T19:32:35.891-07:001Hey. <br />
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So, I have never blogged before, and to be quite honest this could be something that I do once and then neglect to do for quite a while, if ever do again. However...<br />
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I remember the days when Zion was first diagnosed...the feelings of helplessness, and this overwhelming sense of complete cluelessness about a disease that is so extreme, rare, and life-changing. There were so many questions...and so few answers...we felt alone. Then we were introduced to our SMA Family, and I saw many families stepping up to fill the gap between diagnosis day and the days when dealing with SMA issues becomes routine. Its been a little over a year since diagnosis day for us, and while I do not claim to be an expert in any way shape or form, my hope is that somehow, someday something I post on this blog will benefit someone affected by SMA. Someone who is dealing with, or is going to deal with an issue that I have dealt with as a father of an SMA son. There was so much comfort for Chelsea and I just knowing that we weren't alone, and I know that part of my duty as an SMA dad is to pass on that comfort to someone else dealing with raising a child with SMA. If I touch just one parent with this blog, it will be worth it all...<br />
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Check back soon for more posts!!<br />
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Much Love,<br />
PHhoskinspdhttp://www.blogger.com/profile/15897712635127468262noreply@blogger.com0