LOUISE: Loving Jay
April brings a birthday to my son, Jay, as well as tender thoughts on raising a child with special needs. In these 36 years there is little I haven’t experienced. I have seen the best and worst in people, from those who were afraid to touch my child, seeming to fear that Down Syndrome was contagious, to those who put me on such a high pedestal I couldn’t help but fall off. Big news! I’m no hero or heroine. I made plenty of mistakes, but thankfully Jay survived them.
As with all families with special needs, we have been through tough times. One happened at Jay’s birth when I went through 18 hours of labor and delivered this baby frank breech without a C-section, the umbilical cord wrapped around Jay’s neck, cutting off his oxygen supply. Jay spent nine days in an isolette with oxygen and had a lifelong communication disorder, likely caused from a lack of oxygen at birth. When Jay was 14 months old, my husband and I were ushered into a cath room with x-rays lining the walls. The cath showed Jay’s rare heart condition could not be corrected without risking his life, but without that particular surgery, his lifespan would be very short. Now there’s a choice for you! I’ve prayed thousands of prayers over this child and watched God work miracle after miracle in Jay’s life yet still leave many requests unanswered.
However, my reason for writing is not to complain, but to let people know how thankful I am for my son. I loved Jay before I even knew he existed, having prayed daily for God to give me a baby. I fell eternally in love with him when a nurse placed a blanketed bundle in my arms, wrapped tightly from head to toe, and told me not to unwrap him. Are you kidding? She left the room and I started unwinding, beginning by lifting the corner flap of the blanket to reveal his sweet face with tiny up-slant eyes peeking at me beneath a velvety, furrowed forehead. His miniature lips opened as he yawned and stretched. Love emanated from every fiber of my being as I made a silent promise to my son, “I will love you forever, no matter what!” And he has been so easy to love.
Together, Carl and I unwrapped Jay completely in that hospital room, counting fingers and toes and admiring the beauty of this six and one-half pound miracle. What in the world was all the hullabaloo concerning Down Syndrome? How could anyone not love this baby boy? I found there were definitely people who would not accept Jay, simply because of his disability, but the good news is that most people adored him. As a toddler he captivated hearts when he flashed his fabulous, four-tooth grin. He grew up ornery, spoiled, sweet and lovable, character traits he still possesses. Jay has hugged more people than anyone I know and has given this mother a heart full of treasures that have come through the fire and now help hold me up in this grief-filled season of my life.
With just the two of us at home now, Jay is the strong one, telling me his daddy is in heaven wearing a crown and even riding on the clouds. He sings songs to his dad at the breakfast table and releases bouquets of balloons to heaven with messages of love and watches them float upward before suddenly being snatched out of sight. This young man, who had such a special relationship with his daddy and loved him beyond words, now mimics his father’s courage and trust. What a legacy!
Special needs? You bet Jay has special needs. He needs respect, love and acceptance, as we all do, along with the opportunity to show the world his priceless gifts of joy, faith and unconditional love.
Happy Birthday, Jay! You are loved!