If I say SMA what do you hear? Do you hear SMA- the leading genetic killer of children under 2? Or do you hear SMA- what?!?! SMA hmmm What is that? I didn't know what it was but for my one of the "light bulb" moments literally hit me upside the head when I watched the little video. My heart was in love with the beautiful children and horrified for the life that these sweet parents must live..... life on the ledge. Head over heals in love with your beautiful child, such special kids........ have you seen them? the most beautiful children. Such expressive eyes........ but at the same time these parents live with the horror that their cherished child will struggle and die a horrible death.
Maybe the fact that we lived in a corner of their lives for just a little while. At 19 weeks pregnant with Mackenzie we were given devastating news that our child had a deadly heart defect. It would steal her away from us, how could this be happening? The sweet baby that we were blessed with would be taken. Her heart couldn't keep up with her growing body, we lived the next couple weeks in disbelief. Then as they predicted at 21 weekes 6 days her heart just couldn't keep up. Then she was gone, we had to learn a new normal, a new way to get up everyday and walk through the day and be a parent to our other children.
So I guess I understand from a tiny pin point their life. BUT I didn't SEE my daughter fail. I never got to hold her but I never had to watch her struggle. I didn't get to spend time with her outside my body but I didn't have to spend time seeing her pain. I never got to know her, but I never had to grieve knowing what I had lost.
SO my new life, my new passion is to see this disease defeated. To see these children given "life" sentences instead of death sentences. My tears just won't stop. I stand in awe of these sweet parents, who stand vigil over their babies. Who are fighting the fight of their lives. Who daily see people who "don't have time" to notice the pain and lend a hand.
God is SO in this at my house. Prayers are being answered in BIG ways. Through our little company we have been able to give money that would have NEVER been available to give. Tim's income was hit like everyone else's and mine almost completely dried up.. not too many people needing to go to llama shows and blow a lot of money for a weekend of fun in this economy, and 5 kids depending on us at different levels.
BUT Money has come in! Money that has led to awareness, SMA needs to be like saying polio. We all know what it is but nobody dies from it anymore. There is SUCH incredible hope, but it seems over-ridden by sand slipping through the hour glass of so many kids lives. My mind races, God is sending me in directions to do things I would NEVER do. But it is all good, all part of God's plan.
How is it that the world just keeps spinning?? A few short months ago I found out about a ruthless killer of children. A killer that sneaks in a steals these sweet babies while their Mother's and Father's are praying for a cure. Praying, begging, and pleading. For me this has an importance that some people can't understand.
Here are a few pictures of some of our blessings......
Taylor, my funny boy
Logan playing piano
Kendall on potty duty
this is what real life looks like
3 weeks ago