Perspective

Tonight 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.

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.

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.

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.
A Dynamic Stander
2 Manual Wheelchairs
A K450 Permobile Power Wheelchair
A Stationary Stander
A Van
A Captains Bed
As well as help with paying for numerous trips to doctors appointments, hospital stays, and past medical bills.

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.

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. 

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.

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.

Sorry for the rant, and I hope it all makes sense. Again, thank you for all you do for us, it is not unappreciated.

Much love,
PH

GPH

Green. Party. Hat.

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.

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.

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.

Much love,
PH

Lump

I 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.

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.

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.

 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.

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.

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.

Cuatro

Why am I awake at 1:52 am? I have no clue...but here I sit, watching Law and Order SVU and writing this blog.

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.

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.

3

I 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.

With Sadness,
PH

Backyard Bonfire

We 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.

I love you Zion.

PH

1

Hey.

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...

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...

Check back soon for more posts!!

Much Love,
PH