"She's never going to be normal"

When I was pregnant, I worked as a lab tech and was basically living by myself in southern New Jersey  because my husband, at the time, had graduated law school and was working as a courthouse intern in CT.  He was gone all week and would usually come home weekends.  After getting home from work, I had plenty of time to ponder what it would be like when my baby girl arrived.  I'd sit in my glider for hours, rubbing my stomach, listening to music, and talking to her.  I imagined her learning to walk and how I'd feel when I heard her say "mama" for the first time.  I thought about her going to school and all the friends she would make.  I imagined her graduating from high school, going to college, getting a job, and having a family.  I may even have grandkids!  It was so exciting to think about.  I allowed my imagination to run wild because why not?  That all came crashing down when, on the second visit to the pediatric neurologist when Hannah was one year old, I was given the results of the MRI of her brain that had recently been done.  I was told her brain was structurally normal but she had delayed myelination.  Myelin is a fatty substance on nerve cells that helps the cells communicate with each other. In addition, the doctor said she thought Hannah had PDD-NOS, which fits under the umbrella of autism, and a genetic disorder because of her dysmorphic features.  I asked what all of this meant for her and I will never forget the response.  She said, "if you are asking me if she will ever be normal the answer is no."  Just like that.  I felt as if I was punched in the gut and I started to cry.  She had the nerve to ask me why I was crying.  She had no clue how to deliver devastating news to a parent who was scared to death.  I couldn't even speak;  I left the office with my special little girl and never went back.  I found myself thrown into the depths of grief because I knew the dreams I had for her were not likely to come to fruition.  In the following days and weeks I allowed myself to feel what I was feeling and slowly pulled myself out of the hole I was in.  I realized no one knew what her future would hold so I needed to let go of all expectations and let her become what she was meant to become.  She was here for a reason. I needed to help her figure out what that was.  So I lived in the moment excited about every little milestone she made because nothing came naturally to her; she fought to learn every new task.  This is when I recognized Hannah was showing me how to appreciate the little things in life.  What other parents took for granted with their kids I celebrated.  Picking up a Cheerio with her thumb and forefinger was a big day!  Putting the toy shapes into the correct hole was another celebration.  I watched other parents with their kids and felt they didn't see the wonder in what their child was doing in the same way I saw it.  Everything was a miracle to me and remains a miracle to this day. 

To anyone that has been told your child isn't "normal," don't listen.  Hannah isn't neurotypical but she is who she was meant to be.  Just because she thinks differently and struggles with things others find easy doesn't mean there is anything wrong with her.  Everything is "right" with her because she is who she is meant to be.  Every day we learn from each other.  That's what life is all about.  Parenting her remains a challenge to this day but it's one I know I can handle because along with the challenge is the joy of being her mom.   

Always remember: you've got this and you are not alone.