A diagnosis...

  We took Gracie to see Dr. Ladda at Hershey Medical Center on Monday. He looked her over from head to toe. He had a name for her "syndrome". Clinically she was diagnosed w/ CHARGE syndrome. But in reality Gracie hasn't changed from the baby we've been loving for the past 4 months. The funny thing is that my mind wanted to change the way I see her, but then I caught myself. ShaLyn asked me if this means Gracie is a "special needs" child. I responded that it does, BUT doesn't every child have "special needs"? No two children are alike, they're all special- they all have needs.
  "Well, mom, will she be normal"?
  "I don't know... what IS normal anyway"?? She will be "Gracie's normal" and what that looks like, remains to be seen. Of all the things that can be affected by having this syndrome the only thing we know that Gracie has is the coloboma (which is the part that affects her vision), the 7th nerve palsy (which affects her facial nerve- its what you see when she cries), and ears that look slightly different externally but as far as we know know they can hear. The fact that she is small and gains weight slowly, may or may not be a result of the syndrome.
  We will need to take Gracie to see several specialists over the next few months. And we are so grateful to have Dr. Katie Willaims to help us schedule and walk through all of that. As of now we know very little about what she can or cannot see. She squinted in the sunlight the other day and something so simple as that made this mama heart smile. That means she sees some light!!! We also notice how often she holds onto a blanket, or our clothes when we hold her... she "sees" with her hands. I love to hold her close to my face, she will put her hands on my face to feel it. Touch will be important to her learning about her world. Hearing will be important as well.
  As for how Dutch and I feel personally with it all- our hearts are at peace. We believe in healing, we believe in "inner" healing, we believe that ALL things work together for good to those who are called according to his purpose. We also know that there is power in a spoken word. We choose are words for Gracie's situation carefully. We are choosing words of life. We also realize that this journey isn't just about Gracie, it's for us- to teach us, stretch us, draw us. Personally it is teaching me to trust- to trust God, to trust my husband, to trust myself. Its teaching to me to love, to let go, and to live more fully. I'm learning to embrace pain all the while believing for miracles.....