The joys, the challenges, and the blessings of raising a son with CHARGE Sydrome.
Wednesday, December 11, 2013
As Asher begins Preschool next week and turns 3 next month, I have been reflecting on his precious life.
Remembering each stage of the last 3 years reminded me how much we have been through.
We have fiercely cared for and sheltered our third child in a way that now feels “normal”. We have been careful to protect him from unwanted illness and risks. We have held him in our arms while he endures countless tests and procedures. We have responded to his slightest sighs and loudest screams with speed and efficiency to the point that we can anticipate almost all of his needs without words. We have held cold cloths to his head during fevers and held his hands while he struggled to walk. We have rushed to the hospital(s) during the darkness and cold of night as his heart raced or his chest was in-drawing as he gasped for air. We have watched as his various surgery scars have faded to light pink from dark red.
We have prayed in confusion when facts were so unclear. We have whispered prayers of fear during hours of open heart surgery. We have prayed prayers of thanksgiving when our son survived cardiac arrests. We have cried prayers of pain when the unknown of life was too much to bare. We have shouted prayers of frustration when home and wholeness didn’t seem close enough. We have held prayers of hope deep in our hearts when hope seemed long gone. We have prayed with rejoicing when there were millimeters of progress. We have sobbed prayers of questions when health unraveled before our eyes. We prayed victoriously when we walked out of hospital doors.
We have jumped up and down when Asher first sat unassisted! We have smiled with tears in our eyes while he interacted with his siblings through play and books! We have clapped and cheered when food touched his lips. We have done the happy dance and sang out loud when he took his first steps alone! We have breathed breaths of gratitude while we watch him sleep peacefully in his own bed. We have praised him when he said his first words and signed his first signs. We have laughed deep belly laughs when he copies something he sees and knows he’s being funny! We have given high tens and hugs when he climbed the stairs to the top just for fun! We have captured endless memories of success and development from behind the lens of a camera. We have cried tears of joy when he opened his first Christmas gift at home when he was healthy and well.
We have been on a journey like no other. We have all come so far. And as I look behind us, I know that never once did we walk this journey alone. Never once did God leave us on our own. He has been so incredibly faithful!