AIDEN
PHOTO BY RANDY BACON
AIDEN
“The Pure Beauty of Who He Is”
(Story written by Tracie, Aiden's mother)
In the fall of 2008, a picture would land in front of my eyes and change the trajectory of our family’s lives. A tiny thumbnail of a blonde haired blue eyed boy at the bottom of my computer screen jumped out and landed in the center of my heart and I suddenly knew I was to be his mother. I called my husband and within hours we decided to do whatever was required to become his mommy and daddy. The little boy, who we would name Aiden, had Down syndrome and therefore was considered less desirable in his culture. His parents chose to place their son in an orphanage. Aiden was three when he became our son.
A year later we welcomed another son into our lives, Mattie, who also had Down syndrome. Mattie spent the first eleven months of his life in the NICU and PICU where he fought off numerous infections, had two heart surgeries, surgeries for G Tube due to feeding issues, and a tracheostomy for chronic lung disease. In spite of what may seem like a bleak start to life, Mattie somehow managed to shine his light on everyone around him - he carried a light so bright it was palpable.
I’ll never forget the day that Aiden realized that Mattie had an extra chromosome too. Pointing back and forth at Mattie and then to himself he would say over and over, “Me, Buddy, same!” with a beam on his face that spoke volumes. Aiden and Mattie (or “Buddy” as Aiden called him) became the best of friends, bound by love and never once limited by their abilities. Rarely were words spoken, they spoke with the language of the heart. It was a crazy BIG kind of love! Aiden would care for his “Buddy” with compassion through countless hospital stays. He was never afraid of all the medical things needed to keep his brother alive. He would help bathe him, help me change his tracheotomy, help with his therapy, and give him all the snuggles a brother could ever need.
In July 2014 we went on vacation. Mattie was at the prime of his health - thriving, free from the ventilator, needing very little supplemental oxygen, learning and growing in every way. On August 21, 2014 a sudden and severe asthma attack caused his heart to stop and this time he could not be saved. The life he lived in four short years was radiant. His impact remains to this day as the ripple effect of his life remains in motion.
At the time of Mattie’s death, Aiden was only seven. Grief would become his constant companion. Aiden and Mattie share an unbreakable bond of love and Aiden feels grief as deep as the ocean flowing out of a love that goes beyond its depths. On Aidens 13th birthday last month, he sent his birthday balloons heavenward to Buddy. He often saves a seat for him at special events. He talks to him. He is learning that Mattie lives deep inside and that even in death they are inseparable. Some may think that grief wouldn’t impact a child with Down syndrome as deeply because of limited cognition; but I am here to tell you that I have never witnessed someone grieve more deeply or more beautifully as I have seen the past 5 years as my son has grieved his brother and best friend.
Some of the common misunderstandings of individuals with Down syndrome is that they are less than in some way and nothing could be further from the truth. If anything Aiden is more emotionally intelligent than most people. I would love to be part of a world that sees Aiden for his humanness...the pure beauty of who he is as a human being.