Tuesday, June 7, 2011

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

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