Wednesday, March 5, 2014
2nd diagnosis
This is a hard post to write, I've been drafting it for the past 6 months. Even though I just recieved the call this morning, I've known for about a year. I also know I am not alone, there are others who have walked this road before me, having 2 kids diagnosed. Then there is my husband who is an amazing Dad and helps me so much. And of course Heavenly Father, who I know is always there waiting to comfort me. My kids are special, they are so much stronger than me, and are turning out to be awesome people. Nathan is so much more compassionate because of his brother and sister than he would be otherwise. There are blessing hidden in all this I am sure of it. I know we are closer as a family, because everyday with my kids is a gift from God. I try harder to make our time together count, I also want to give them more experiences than they have had. Its a weird thing, knowing you have not one but 2 kids who could be taken from this earth before you, if a cure is not found, their futures are so uncertain, and who may or may not go to college, get married, have kids. Who will need you for the rest of their lives. This disease gets ugly the farther it progresses and their is nothing you can do to stop it except pray for a cure. I asked Emma if she was scared she said "Just a little" I imagine she is more than she's letting on since she has watched Daniel and knows thats the direction she's heading. I am scared for her, but I am also being brave for her. She had dreams of dancing in the Nutcracker, she loved dancing until it became too hard for her and she asked to quit. We are trying to come up with things she can do that she loves and will be able to continue even while she loses coordination. I love my sweet girl, and right now my heart is broken. I want to fix them, to take this from them, but then I remember this is their trial, and all I can do is support them and love them. This is their fight, and all I can do is encourage, and be on their side, but also give tough love, and help them fight, because if they don't want to fight they will lose, much sooner. However my faith is strong and i know this is Gods will not mine, and that through him someday my babies will be made whole again, and that someday they will stand tall and walk perfect.
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