She couldn’t have been more then two years old when we were sitting at that table trying to teach her sign language with my mother’s help. I recall repeatedly doing the sign for “cookie” as we held a cookie in front of her big blue curious eyes. After about a half-hour with no response from her, we stopped, and my Mom began teaching us other signs, hoping we would assist in her learning. She began to quiz me on different signs that she had gone over and when she came to cookie, I couldn’t remember how to sign it. My Mom repeated it to show me and my sister quickly placed a cookie in her hand. We laughed and hugged her tightly. I remember being so proud that she was finally beginning to understand us as my mom‘s eyes filled with tears. Little did we know at that time that the word itself and not our signs prompted her response.

Her childhood was anything but typical, although my parents tried desperately to keep it as close to normal as possible. The weight of the trach on her small neck, although minimal to us, was enough to hamper her ability to walk until the age of four and she was never to crawl. I suspect it was the fear of harming herself that was more detrimental to her success then the actual equipment itself. My parents, although extremely well meaning, were also greatly overprotective, rarely allowing her to test her own abilities. Until she was able to walk, she raced her way around the house quite efficiently on a little yellow skateboard. She would lie on her stomach and push herself around using her hands and feet. She also achieved quite a bit of joy by running over the toes of unsuspecting family members.

For the first four years of her life she was attached to a heart/breathing monitor while she slept. I remember being wakened many nights by the horrifying sound of the alarm, warning that it wasn’t detecting a regular heartbeat or breathing patterns. All but one of those times, it was because she had moved and a clip came off of one of the little smiley-faced electrodes that were sticking to her chest. The chaos and fear that surrounded the time that she truly stopped breathing was horrifying. I can only remember being in the corner of the family room, while my parents and 3 other people surrounded my little sister on her changing table. My Mom was yelling that her face was blue and she wasn’t breathing. My Dad stood next to her in his red underwear, hands shaking terribly as he tried to help clear her airway. Apparently, her trach had somehow come out in the night, leaving her unable to breathe. The monitor was our only signal that something was wrong considering she had never had the ability to cry in her young life. What a painfully sad sight, to see a child crying, but unable to make a sound. Her eyes would fill with tears until they streamed down her face and her mouth would be wide open, yet there was complete silence as a blue tint consumed her tiny body. After a few short minutes, that seem more like days in my mind, the trach was put back in and her cheeks flushed pink once again.

The years ahead were filled with advances and setbacks as she returned to the Children’s Hospital of Philadelphia repeatedly to attempt to remove the trach and again failing. The scar tissue buildup narrowed her already minimal airways, making it a high-risk procedure that the doctors and my parents were unwilling to take. Colleen, my younger sister, was becoming despondent, fearing she would be forced to live her entire life unable to truly understand the simplicity of being a normal kid. After each failed attempt she became less cooperative, making it more difficult to advance to the next level. Although I am certain my parents had thought about the possibility of her living her life with the trach, the words were never mentioned. Everyone except Colleen saw it the same way, we would rather have her here with a trach, then not with us at all.

At the age of four Colleen decided on her own that she hadn’t a need for the trach anymore. She had done her best to convince my parents by covering the metal piece that protruded from her neck with her tiny fingers and hoarsely breathing through her own mouth, although for some reason was still unable to breath through her nose. My parents were understandably very hesitant to remove it, however agreed for my sister’s mental well being to try. Preparing for the worst they were near the phone and had a second tube nearby to insert if she was unsuccessful. We all stood by holding our breath as the piece was removed, all but Colleen that is. With a smile on her face she began to cough and proved to all surrounding her that she had overcome this obstacle.

From that day the journey has been filled almost completely with triumphs rather then complications. With the trach removed she learned to walk and then to speak. It’s my personal belief that she has since made up for the four years she was unable to verbally express herself and can frequently be heard above all over voices in the house. She has thankfully never had to have another tracheotomy preformed although the small hole that still remains in her neck is a constant reminder of the struggles of the past. She returned to C.H.O.P. two years ago, at the age of seventeen, to explore the possibility of having it closed. The surgeons fear that because of the high scar tissue build-up, that closing it may cause her airway to be severely reduced and will again have to have a tracheotomy preformed. With that possibility looming overhead she has decided to wait, hoping in the future her airway will expand enough for a higher success rate.

Now, at nineteen, I see little difference between her and any other teenager. She rebels and has mood swings that could be argued to be the best if you asked me. She spends her days working and her nights hanging out with her friends and playing her music entirely too loud without a care, as she should. The obstacles that she has overcome in her life have certainly prepared her for anything tomorrow can threaten her with. You almost have to smile when you look at her now, it’s such a wonderful change from that timid, wide-eyed baby that had a future full of doubt.