My entire body went numb as he was crying and kept saying over and over again, "she is retarded".Madison was the first girl born to our family, we had three grandsons.
After what seemed like an eternity, 10 hours after that phone call, we drove into the hospital parking lot. It was the dawning of a new day. The gray skies allowed purple hues to peek through and streak across the sky.
I whispered one more prayer, "God give me strength". Strength to encourage and uplift my daughter, my son-in-law, my grandson and my new granddaughter. Strength to face what lie ahead and strength to trust Him for this gift.
Upon entering my daughters room, she appeared happy, in an odd kind of way. A smile that was foreign to me seemed glued in place amidst sunken muscles and her furrowed brows, which formed a look of despair and sadness on her beautiful face. A sadness and confusion so deep that I had never seen before or since. Embracing her, I told her how proud I was of her and how much I loved her. Reassuring her that things would be just fine, because God does all things well. She seemed to melt, and began to sob as she lay her head on my shoulder.
It was time to visit Madison. We entered the Neonatal Intensive Care Unit and geared up on our sterile wear. We were led by two empathic nurses to where she lay in an incubator. I was numb again. She was so small, so innocent, so helpless. We were able to put our hands through gloves affixed to the incubator and touch her.
The doctor joined us at her side and began to explain that Madison was born with a rare genetic disorder, Cornelia de Lange Syndrome (CdLS). She quoted--very matter of fact--the statistics regarding survival and all the other pertinent information about symptoms, complications and the like. All which went in one ear and out the other.
Madison Hope Kennedy was beautiful. She was perfect. I could find no defect in her. Later the nurses had to point out the obvious outward signs of CdLS, but I just could not see them.
I remained behind when my husband and son left, so I could help Michelle, James, Dylan and Madison get adjusted in their home. Madison had to be fed through a feeding tube, one that we had to insert through her nose at every feeding.
As the days and nights passed, they turned into weeks, then months. It was time for me to go home. Madison Hope Kennedy was almost three months old.
James and Michelle did a fine job with her. I had trouble readjusting the "normal" life in which I was accustomed, because of the intimacy of caring for this beautiful girl. One day when James and I had trouble getting the feeding tube in Madison's nose, we laughed at our clumsiness. Then he made an admission to me. He said he did not understand at first why God allowed this to happen, but after caring for Madison, he said he felt honored to be trusted with such a gem. He told me he used to look at handicapped people less favorably and this was a challenge for him personally and spiritually. He said through this experience God showed him how special the parents and people are that take care of these precious special people.
Less than one month after our talk, and my return home, God took Madison Hope Kennedy home to be with Him.
I was not there when she passed away, I was not meant to be.
Michelle and James believe God gave them Madison, as a gift so they could grow spiritually, personally and physically stronger. A precious jewel for such a time in each of our lives. She sparked light, laughter and happiness in all of us.
I thank God upon my every remembrance of her. He does all things well at the dawning of a new day.