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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

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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