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Sunday, April 28, 2013

It's been long time...

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

Hello everyone,

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

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

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

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

Love You All,
PH