Last night we met with our community group and there was a common theme that we all had which effected our intimacy with the Lord... we were all BUSY. I was told once that busy is the devils scheme and when he can not have our heart he will distract it.
Being
Under
Satan's
Yolk is trouble to a follower. This summer we were all busy. The busyness for me distracted me from enjoying her and our family as I should. With Mila time is precious; therefore, busy is not something we have time for. We need to enjoy her and to be sincere, Mila makes enjoying time so easy. She is joyful, cheerful, funny, goofy, caring, compassionate and much more wrapped in one tiny package. She, more than anyone in my life, knows what her daddy needs. She can soften me with a look. She doesn't just glance but can stare into your soul, smile with her eyes and make all things well. In the busy life we live, in a world that distracts us from enjoying precious moments, God gave us a daughter who makes us slow down and rest in a moment. A look or through a hug, that is both loving and intentional in meeting the receivers needs, she brings peace. When life gets busy and you even struggle to rest in the Lord, it is nice to have a daughter who can make you still. She quiets the soul and it is why, whoever knows her, will say she is an Angel from the Lord. I just pray that He doesn't need her back any time soon.
Today Mila is healthy. Since our trip to Boston we have had nothing but checkups which is a relief. Michelle and I frequently question (usually internally) when are all the health concerns going to start. For one little boy, 4 years old, with Myhre he spent 4 weeks in the hospital looking for the complications to his breathing and heart. The same can happen at 12... at 21. I think we all just pray for time, scarred for the moment when the world comes crashing down on her. On us. With this feeling it is nice when the one most affected, Mila, is the individual who can calm the soul.
Mila is 4 months shy of 3. She is still under 25 pounds and grown an inch maybe 2 this year. She is talking in sentences that only the family can decipher. She loves to sing! She always has a swing to her walk as if on a stroll through a park. She likes to wonder. She is so funny and she knows it. She can get someone laughing and keep them giggling as she laughs along. She is a precious creature of habit. Each morning I pick her up, take her upstairs and she grabs 1 book at a time to be read on my lap. If I stop to yawn or slow down she repeats "daddy read!" Yesterday Michelle and I watched as she removed 1 pencil from a drawer and dropped it on the ground. She did this until the floor was covered with an emptied box of 50. She loves her learning tower where she watches the fast paced world around her. Her brothers and sister protect and now include her in play. When they do not she will show her disapproval. Her hugs are unique, A full body squeeze with a gentle, small hand tapping your back. She will whisper when she communicates to a stranger or when she is being shy. I love it how she hides behind me or asks to be held not out of fear but so she is she can take in all her surroundings before she goes full speed into a new situation, bringing life and joy to the moment.
Because she is healthy today and their is a window of security (how big we don't know), Michelle and I feel something more than to react has to be done. That is why we teamed up and formed the Myhre Syndrome Foundation (www.myhresyndrome.org). We have lofty goals of prolonging her life, even saving it, but this is not just for her. It can 't be. This rare disease needs to be for everyone, bigger than Myhre. It needs to be for rare diseases, or for genetic coding, or orphan drug advancement. It needs to be for the Glory of God and the good of His people. That is where we need your prayers. If there is anything in me, or this Charity that is self serving or so small minded as to not be under the protection and sovereignty of the Lord then pray our hearts see that without the Lord we can not do the good we hope, and Mila would not receive the benefit.
Last night we met with our community group and there was a common theme that we all had which effected our intimacy with the Lord... we were all BUSY. I was told once that busy is the devils scheme and when he can not have our heart he will distract it. Being Under Satan's Yolk is trouble to a follower. This summer we were all busy. The busyness for me distracted me from enjoying her and our family as I should. With Mila time is precious; therefore, busy is not something we have time for. We need to enjoy her and to be sincere, Mila makes enjoying time so easy. She is joyful, cheerful, funny, goofy, caring, compassionate and much more wrapped in one tiny package. She, more than anyone in my life, knows what her daddy needs. She can soften me with a look. She doesn't just glance but can stare into your soul, smile with her eyes and make all things well. In the busy life we live, in a world that distracts us from enjoying precious moments, God gave us a daughter who makes us slow down and rest in a moment. A look or through a hug, that is both loving and intentional in meeting the receivers needs, she brings peace. When life gets busy and you even struggle to rest in the Lord, it is nice to have a daughter who can make you still. She quiets the soul and it is why, whoever knows her, will say she is an Angel from the Lord. I just pray that He doesn't need her back any time soon.
Mila is 4 months shy of 3. She is still under 25 pounds and grown an inch maybe 2 this year. She is talking in sentences that only the family can decipher. She loves to sing! She always has a swing to her walk as if on a stroll through a park. She likes to wonder. She is so funny and she knows it. She can get someone laughing and keep them giggling as she laughs along. She is a precious creature of habit. Each morning I pick her up, take her upstairs and she grabs 1 book at a time to be read on my lap. If I stop to yawn or slow down she repeats "daddy read!" Yesterday Michelle and I watched as she removed 1 pencil from a drawer and dropped it on the ground. She did this until the floor was covered with an emptied box of 50. She loves her learning tower where she watches the fast paced world around her. Her brothers and sister protect and now include her in play. When they do not she will show her disapproval. Her hugs are unique, A full body squeeze with a gentle, small hand tapping your back. She will whisper when she communicates to a stranger or when she is being shy. I love it how she hides behind me or asks to be held not out of fear but so she is she can take in all her surroundings before she goes full speed into a new situation, bringing life and joy to the moment.
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