I look at these pictures and reflect on the uncertainty and undeniable frightening feeling my husband and I felt when our twin boys arrived two and a half months early in 2000. I was overwhelmed with the new love of motherhood…but I was scared for the lives of my children who were struggling to survive.
When you are faced with the possibility of losing a child, your heart breaks and your spirit deflates into a puddle of hopelessness. My son Alex had a less than 1% chance for survival due to a rare intestinal disease called NEC. I begged the Lord to save my son, but I also prepared myself for letting go.
By God’s grace and His grace alone, he along with his twin brother, are happy, healthy handsome eleven year olds today. This mama’s heart is full…of grace.
I read a story today. A story about the life of an angel who has been diagnosed with a very rare disease called SMA (Spinal Muscular Atrophy). A life that will eventually be given back to the very One who created her. I have read many emotional, chest-clutching stories in my life…but for some reason, this little girl has touched my heart…with profound grace.
From her blog Avery’s Bucket List
SMA is the #1 genetic killer of infants & children under the age of 2, yet most people have never heard of it, most OB/GYN’s do not offer tests for it, and it’s not included when performing genetic pre-screening tests for other potential diseases & disorders. There is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs – especially of the respiratory system – and eventually leads to death. 1 in 40 people are carriers of the SMA gene. Meaning my mommy and daddy had a 1 in 1600 chance of both having it and even then there was only a 1 in 6400 chance I would get it.
This is Avery Lynn Canahuati…isn’t she a doll! Please visit her blog to read more about her story.
I am a mother…a wife…an author…a social media guru…a friend…a daughter…God’s child…a believer that nothing is impossible, for all things are possible.
What we face, what we are given in life is always placed within our lives with purpose. It is not always what we want, what we need…many times it is what we fear that burdens our shoulders.
My sons’ very best friend was diagnosed with cancer two years ago. A child that was sweet, loving and innocent…he was handed a burden that his body was unwilling to carry. Only a few short months after being diagnosed with Leukemia, he left us quietly. Anger washed over many of us. Why would a child be taken from the arms of his/her mother so young? What did they do to deserve what they were given?
Nothing. Tomorrow is not promised…it is given. It is a gift, a treasure that should never be treated lightly. For life is an uncertain road no matter your age. That is why I love what Avery’s parent’s are doing for her. A bucket list of memories to make before their daughter is quietly taken home.
No matter how young or how old or what the circumstances may be, treasure life and more importantly…speak grace. Always. For grace is what gives us life.