well, my little skeeter bug faces surgery today. I'm not sure why, but I'm just a mess... ok, I am sure why... It's scary for a mito kid to go under... it takes a lot of energy to bounce back and she hasn't had much energy the last week. jeff is at peace though... so that always feels comforting. I haven't been able to sleep but an hour or two tonight. I so much wish I could raise more awareness of what mito is, the affect and the SERIOUS NEED for a cure. As a mommy, I feel helpless within myself as I watch my babies suffer. They look so normal and at times, they act normal... but the painful times are when you watch them suffer at home because they did what "normal kids do" They can't control their mouths, they have trouble with muscle pain, weakness and tremors, they cry because it hurts to move, they some times don't want touched because it hurts to feel... that's the side many DON'T see. I try so hard to protect them, but I just wish they could run free and feel normal. Play and not worry about the after affects. Anyways, I'm really struggling right now. I think it is all just because life has taken some scarry turns this week that have been hard to swallow, but we will make it through this hurdle and trust God has a reason and he's with us. Some days, it's harder to focus on that then others... but today... I'm just clinging to him and crying out for him to hold my baby. we'll update when surgery is over. You can find more at www.caringbridge.org/visit/abigailpfohl I am keeping things updated there more. Talk to you all later.
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