Today was the last day of Mitochondrial Disease Awareness Week. So I guess I'll just put my soapbox up and bring it out again next year.......NOT!!
I started off strong this week. I had materials ready at Asa's IEP on Monday. We had awareness night at Chick-fil-A on Tuesday. I've made phone calls and sent some emails. And if you are a Facebook friend, you know I've driven you CRAZY with the mito posts and mito info. Then when I checked Facebook on Friday, I had the wind knocked out of my sails!
As I sat down to have my first cup of coffee and read FB and emails, I found this post by a dear mito mom, Missy:
Samuel received his healing tonight. He is now dancing in Heaven, eating ice cream and brownies. I will forever love and miss my perfect little boy.
Can your heart be torn apart any more than hearing about the loss of a child? A 4 year old! What about the loss of a child from a disease that so many have never heard about? And I was feeling so proud of myself for having told 2 dozen people about mito this week! REALLY?! How inadequate!
I only met Missy and Samuel in real life this summer at our visit with Dr. Koenig in Houston. It wasn't planned and it was just quick introductions and hellos. We were leaving the office and there sat the Knight's in the waiting room. I had "met" Missy online shortly after Asa got diagnosed. A year and a half ago Samuel got very, very sick and because of Missy's update and sharing, I began to feel like I had met them in person and not just through a computer screen. It may seem odd to some people to think you can form friendships and bonds even though you are many many miles away. I can say though that I have so many online friends who I love so dearly and who have touched my heart even though we've never met in person. I have to say that I've only chatted with Missy a few times online, a few messages back and forth, so I can claim no right to any of the pain or hurt or sorrow that his family and friends must be feeling.
And my point is just that. How can a child and a family who you've only just gotten a tiny glimpse of, touch you so much? I believe it is all God's plan. I believe God just creates some people to be able to touch others so deeply. I don't understand why He then takes these precious souls too early. There is a ton I don't understand.
But I do know this, if you check many of the blogs listed to the right, there will be a tribute to Samuel. And I know that his story and his name has been shared over and over and over. I know his lessons have traveled and will continue to travel. And I know he will be in my mind and heart for many, many, many more awareness weeks.
So when I'm burning up Facebook with mito reminders or shoving flyers in your face or screaming about mito or begging for donations to the UMDF, it isn't just for a cure Asa and some stupid, bothersome muscle weakness. Developmental delays and feeding tubes are just a drop in the bucket. If you look at Asa or our family and feel sadness or pity or better yet, think "but for the grace of God....", I ask you to think of the Knight family. Think of Missy and Ben, Samuel's parents. Think of Lauren, his big sister. Think of Cooper and Alex, his best mito friends who are both in the hospital at the moment. Think of their loss and grief. Then think of what could have been for a beautiful, happy, friendly, sweet little boy whose little 4 year old body was ravished by an ugly, terrible disease called mito.
Will we have a cure tomorrow? NO. We will have a treatment tomorrow? Doubtful. Will we have awareness tomorrow? I will. Will we have hope tomorrow? I do.
If you want to read more about Samuel and his wonderful family you can here. And be sure to check out Amber's tribute to Samuel at her beautifully written blog here.
And don't forget to hug your little (or big) ones tonight! What a blessing! Each time I pulled up Asa's meds or made a bottle of Pedisure the last few days, I've whispered a prayer for Missy and thanked God for Asa.