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Monday, February 2, 2015

February is Ectodermal Dysplasias Awareness month so I find it fitting to start the blog I've been wanting to start and I will start at the beginning of our little man's remarkable story. This blog is simply my thoughts on life our family story. It will not always be about Michael, but for the month of February it will all be centered around educating others about Ectodermal Dysplasias. Please share this with your friends.

On the way to the hospital to give birth to Michael I read the Upper Room Daily Devotional for that day (July 27, 2012). The scripture was Psalm 139: 13-18. The devotion included an analogy about a woman crocheting a doily and how she knows every part of that doily like no one else. God made each of us. He knows every part of us and he loves us unconditionally. He is our wonderful creator. It is no coincidence that after the devotion we listened to How Great is Our God. I got out of the car ready for this planned caesarian section and ready to meet our miracle boy. Although, at that time I didn't know just what a miracle he would turn out to be.

Psalm 139:13-18
139:13 For it was you who formed my inward parts; you knit me together in my mother's womb.
139:14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; that I know very well.
139:15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.
139:16 Your eyes beheld my unformed substance. In your book were written all the days that were formed for me, when none of them as yet existed.
139:17 How weighty to me are your thoughts, O God! How vast is the sum of them!
139:18 I try to count them--they are more than the sand; I come to the end--I am still with you.
God sometimes prepares us for the moments ahead without us even knowing it. Undoubtedly only hours later I would still have these verses in my head and they would be forever etched in my heart. We had no idea anything was atypical until the moment the obstetrician pulled the little man out. She told the nurses there were webbed fingers and toes present. As I got a glimpse of his super digit my first thought was from verse 14...I praise you, for I am fearfully and wonderfully made. As I lay there on the operating table unable to move my hands because of the straps I knew everything was okay because my Creator, our awesome God, had created this sweet little man. Was I scared, a little. Was I worried, a little. However, there was a sense of calm that was truly inexplicable. I could never describe it in words. It was a holy moment in which I knew the holy spirit was there in that room. He was present and I wasn't alone. Later that day as I thought about the devotion and the scripture and stared at this sweet baby boy I knew God's hand was at work in our life and as my husband says...this little boy is going to make better people out of all of us and for that we thank God.

On day one we didn't have any diagnosis except webbed fingers and toes. On day two we were introduced to the term ectrodactyly. Ectrodactyly is sometimes referred to as split hand split foot malformation and many years ago it was referred to as lobster claw. Lobster claw is not even remotely politically correct so that's the last you will hear of it. We would use the term ectrodactyly to explain Michael's condition until genetic testing revealed the actual diagnosis. You will learn more about Michael's diagnosis in the coming days.

As you go through the day today take time to look around. We are constantly faced with opportunities to make life better for others. My life was made better that day by the wonderful person who wrote that devotion. What can you do today to make someone's day brighter. May the Peace of Christ be with you today and forever more.

1 comment:

  1. I love how you speak of that sense of calm. Only God can provide that. I'm so thankful you decided to share your story. Thank you! I look forward to reading your updates.