My child is "special needs". That's the label they gave her at the hospital when they delivered her diagnosis. I instantly found myself defensive of the term. What is "special needs"? Doesn't every child have different needs? Needs that could be considered special? It's probably a severe case of denial and I'm sure some family psychiatrist is going to read this and invite me in to a consult, but as I looked at my perfect little girl I couldn't accept that there was anything "abnormal" or "wrong" with her. She is just Kimber! And she is a perfect Kimber.
Over a month has passed since that day. The day someone slapped a label on our little girl and started telling me all the things she would struggle with. I have learned so much about things I never thought I would have to worry about but most of all I have begun learning what an honor it is to be mother to this special girl.
I have been hesitant to write this post because I feel very inadequate. After all Kimber is only 4 months old. We are just beginning our journey and I know there are mothers out there with children with much more severe diagnosis that have been doing this much longer than I have that could probably write this much better than I can. It was when I caught myself saying that I would just write about my experience as Kimber's mom once she was "grown up" that I almost found myself laughing about it. I know that Kimber is here to teach me about pure unconditional love. I know she is here to teach me how to be truly selfless in a world that is so driven by a selfish desire for perfection. I know that for me and Kimber, this will be a life long relationship that will look quite different from the typical mother daughter relationship because, you see, I am now a special kind of mom.
I am a special kind of mom. My world fell apart the day the doctors told me my little girl wasn't "normal" and I've watched this tiny girl rebuild it as she's shown me what is possible when you just don't know how to give up.
I am a special kind of mom. I can operate feeding pumps, saturation monitors, and change an oxygen tank all in a semi conscious state at 3:00 in the morning.
I am a special kind of mom. While other moms make play dates for their kids and get togethers with their friends, I make therapy appointments and meet with specialists and doctors.
I am a special kind of mom. While other moms celebrate their child holding up their head and rolling over, giggling and smiling, we celebrate the tiniest cry, the smallest attempt to suck, and the discovery of her hands.
I am a special kind of mom. I spend a half hour feeding my baby a bottle and cheer when she is able to drink an ounce. Then I spend the next half hour tube feeding her the rest of her bottle that she is just too weak to finish herself.
I am a special kind of mom. When my baby goes to bed, instead of cleaning up after an energetic infant, I crack open the laptop and spend the next few hours researching her genetic disorder because even though most of it is stuff I've already heard and know, I continue searching, worried that if I don't I will miss that one little piece of information that could make a huge difference in her life.
I am a special kind of mom. I put on a brave face and smile when strangers and friends alike tell me how lucky I am to have such an easy going baby. After all, how could they possibly know that this is the source of my worry and tears. That her "easy going nature" is a constant reminder of her disability.
I am a special kind of mom. It's a constant conscious fight for me not to compare my baby to other babies her age. I ache to brag about her accomplishments but my heart sinks a little when I see other kids so easily do at play what we have been working for weeks in physical therapy to accomplish. Somehow they just don't feel as grand when I see the ease that these tasks come to other children. It's at moments like these when I catch myself again mourning the fact that Kimber's life will be more complicated than most that my little girl will flash me one of her crooked half smiles and I know she's telling me "Don't be sad mom. We've got this!"
I'm a special kind of mom. I have a very special little girl. So what, our life may be slower paced. So what, we may work harder for each little victory. The fact that we have her here is nothing less than a miracle. I will never complain that my miracle wasn't "perfect enough". Because even though the medical world tells us something is wrong with her, she is the PERFECT Kimber. She's exactly how she is supposed to be and she is here for a very special reason. She's already strengthened my testimony so much.
Thank you all for your support the last four months! Here's to many more with our Angel Bean!
