Throughout my pregnancy with Benjamin, I was aware of the miracle of life growing inside of me. I was keenly aware of the many changes taking place in my body. I was joyfully aware of the first flutters of movement in my womb, and I was lovingly (though sometimes painfully) aware of the kicks, rolls, and punches as he continued to grow and stretched my body beyond what I thought was possible! I so gratefully aware that I was being initiated into motherhood, and I could hardly wait to meet my little firstborn miracle.
On May 21, 2009 I was nervously aware that something was not right when Benjamin was so inactive during a non-stress test, and I was tearfully aware that things were not unfolding as I had planned when the specialist sent us to the hospital for an early delivery, five weeks before my due date. On May 22, after hours on labor-inducing medicine, I was reluctantly aware that a natural childbirth would not be possible and that a Cesarean section was going to be the necessary course of action.
In the midst of my fear and exhaustion on the operating table, I was joyfully aware of my newborn’s first cries piercing the frigid air, and I could hardly contain my excitement to see him. As I waited and waited for my baby to be brought to me, I was suspiciously aware once again that things were not right. Shortly before being wheeled into recovery my husband told me that Benjamin had breathing troubles and was being taken to the NICU.
In the recovery area, I quickly asked Shawn to show me the pictures he had snapped of our son while he was being cleaned up. When I saw the pictures, a new awareness came crashing in on me that was soon confirmed by the doctor’s desire to order a genetic test…Benjamin had Down syndrome. When the testing confirmed his extra chromosome a few days later, our new journey into parenthood took an unexpected turn as we became keenly aware of our complete lack of awareness as to what it meant to have a child with Down syndrome…
The last seven years have definitely been a beautiful learning process as we have navigated the various ups and downs of raising a child with special needs. While it was important for us to become educated on the various medical facts concerning Down syndrome, no facts could ever prepare us for the day-in-day-out journey of loving and caring for our son. Benjamin has Down syndrome, but Down syndrome is not who he is. Yes, he carries an extra chromosome. Yes, he has faced significant medical and developmental hurdles. Yes, he still has much to overcome in multiple areas of development. However, in the midst of these things we daily enjoy a unique and precious little boy, who’s smile has always been able to light up a room and who’s laughter can brighten anyone’s day. We have a handsome little boy with blue eyes just like his mommy and daddy. We have a lively little boy who loves to wrestle on the floor with his daddy and dance with his mommy while she sings his favorite songs.
We have an ornery little boy who knows when he’s doing something he’s not supposed to and will giggle at himself when he feels like he’s getting away with it. We have a silly little boy who loves to spin in circles until he’s dizzy, especially when he has an audience. We have an affectionate little boy who loves to give hugs and slobbery kisses.
We have a routine-loving little boy who eagerly waits for the bus to pick him up each morning as he prepares for another active day at elementary school. We have a food-loving little boy who rejoices at meal times, especially when we go out to eat! We have an independent little boy, who needs alone time just as much as he enjoys time with others. Sometimes he will retreat to his room when he’s ready to take a break from interacting, and he is so content to play by himself for a time.
We have a worshipful little boy who loves the presence of God and expresses such joy and delight in the midst of worship as his beaming face looks upward, as though he is seeing into another realm. Most importantly, we have a beautifully unique little boy who belongs to us, his very life a testimony of the covenant love between husband and wife. We cherish him immensely.
October is National Down Syndrome Awareness Month. This month I rejoice that I am aware of what a gift I have been given in my son Benjamin. I am aware that it is a privilege to raise him, to love him, and to walk with him through every obstacle and every victory as his precious life unfolds and we discover together who God created him to be!