It’s funny how you remember the exact moment certain things happen in your life; a phone call about your first job, winning a special award, the first time you fell in love. Moments like these seem to be forever captured in a certain part of your brain, a place that can be retrieved and played over and over again, especially when you are feeling nostalgic.
I feel so very blessed to have experienced one of these moments on November 22, 2010, when we received a very late call from our adoption agency. The shared list had just been released, and our wonderful agency told us they had a file for us to review. We raced over to the computer, opened the email and began reading: age… institution… finding location. And then we read the words “ankylodactlia” and “deformity of left fingers and hand, possible missing left pectoral muscle”.
Questions, fears and what ifs began to consume our thoughts, and the word “special needs” became a reality. Our minds began to wonder…
“Will he be able to cut a piece of paper, catch a ball, ride a bike?”
“Will he be made fun of, seen as different?”
And after a sleepless night, we did exactly what ever other prospective adoptive parent does, and contacted our pediatrician. We sent him the file, asked questions, and worried about the doctor’s worries. But we knew that we had found our son.
On June 1st, 2011, we traveled to Hohhot, Inner Mongolia, and five days later we held our son for the very first time.
Once home, we met with our pediatrician, who then sent us to a geneticist, who then diagnosed our son with Poland syndrome, a rare birth defect characterized by underdevelopment or absence of the chest muscle on one side of the body, and, usually, webbing of the fingers of the hand on the same side.
At first, discovering your child has not only a limb difference, but a syndrome is a bit scary, however, we have learned that a difference is just that, a difference, and does not define the person you are.
After his diagnosis, we met with a fantastic orthopedic surgeon. One month later, our son began the first of four reconstructive hand surgeries. Each surgeon took away the webbing from his fingers which allowed for better hand movement, and his last surgery rotated his thumb to help with grasping motion. With each surgery, our son wore “the club”, a shoulder to hand cast that covered his entire hand. And with each surgery, I was amazed by the resiliency our son showed.
Through the years, I often smile and think about the many worries we had when we said yes to our “special needs” son. I smile because his “special need” does not define him. He has adapted to his limb difference in such a positive way, that we often times forget he has a little hand.
He is on the honor roll at school, has many great friends, and yes he can cut paper, catch a ball and ride a bike.
Occasionally he will have someone ask about his hand, and in return he responds, “Oh that’s my lucky fin, I was born like that. But I can do anything you can do.”
– guest post by Heather