Mila is 2!
Recently our community group (Church small group) asked the question, "what was your high and low from 2018?" For Michelle and I, Mila was both. The thought that crossed my mind was that without the low of Myhre would Mila still have been our high? She brings us so much joy! She is our shadow always right there smiling and babbling her contentment. She runs to us when we walk into a room and when we leave a room, she is close behind. She hugs, kisses and engages your face for our affection. The thought of her brings a smile to our face and comfort to our heart. She was our high for 2018.
The diagnosis has been horrible, one we have to grapple with whenever there is a cough or worry about when she falls. We laugh that we worry like parents with a first child. We remain cautiously overprotective. Myhre Syndrome is scary. Recently a young Japanese boy died from heart complications and it sent ripples of fear through our small community. This makes us fear the longevity of Mila's life. That is why Mila was our joy in 2018. We soak her in with every minute. Even in the moments of fear, especially when we are sitting in a exam room, we bask in the joy she brings us. So in her 2 short years, we have lived it intentionally with our Mila. Loving her more every second.
Today she is still a tiny 21 pounds. She is the size of a 1 year old. She speaks like an 18 month old and moves even older. When you look at her you think she is an advanced infant. Mila has loads of personality. She screams with excitement and yearns for hugs of attention from her siblings. She loves being in the mix and she never lets a moment of silence linger without a yelp to bring noise. At bedtime she needs someone near, to know she is not alone, and will scream at night to have a loved one come to her side. I believe all this is because she brings life to others and needs it right back.
As we learn more about others afflicted with Myhre there is a consensus (which seems to be universal with kids of special needs) that these brave souls are so filled with joy that they infect those around them. Mila is this for our family and those who know her. The type of child that you want to hold, to hug, and to enjoy without knowing why. Mila was our joy in 2018 and will be as long as our Sovereign Lord destined her to be with us. In thanksgiving, because of our love for her, we will give honor and Glory to God because of this sweet gift. It would be unfair not to mention this longing without saying that without our love and devotion for Jesus we could not place this joy as a gift. We would likely think it to be a curse; however, our Miracle Mila second only to Jesus is a gift we did not deserve.
The diagnosis has been horrible, one we have to grapple with whenever there is a cough or worry about when she falls. We laugh that we worry like parents with a first child. We remain cautiously overprotective. Myhre Syndrome is scary. Recently a young Japanese boy died from heart complications and it sent ripples of fear through our small community. This makes us fear the longevity of Mila's life. That is why Mila was our joy in 2018. We soak her in with every minute. Even in the moments of fear, especially when we are sitting in a exam room, we bask in the joy she brings us. So in her 2 short years, we have lived it intentionally with our Mila. Loving her more every second.
Today she is still a tiny 21 pounds. She is the size of a 1 year old. She speaks like an 18 month old and moves even older. When you look at her you think she is an advanced infant. Mila has loads of personality. She screams with excitement and yearns for hugs of attention from her siblings. She loves being in the mix and she never lets a moment of silence linger without a yelp to bring noise. At bedtime she needs someone near, to know she is not alone, and will scream at night to have a loved one come to her side. I believe all this is because she brings life to others and needs it right back.
As we learn more about others afflicted with Myhre there is a consensus (which seems to be universal with kids of special needs) that these brave souls are so filled with joy that they infect those around them. Mila is this for our family and those who know her. The type of child that you want to hold, to hug, and to enjoy without knowing why. Mila was our joy in 2018 and will be as long as our Sovereign Lord destined her to be with us. In thanksgiving, because of our love for her, we will give honor and Glory to God because of this sweet gift. It would be unfair not to mention this longing without saying that without our love and devotion for Jesus we could not place this joy as a gift. We would likely think it to be a curse; however, our Miracle Mila second only to Jesus is a gift we did not deserve.
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