Josiah's Journey

I wonder sometimes.  Why is it that some children are born with disabilities?  What is the purpose?  Is there something we as the parents need to learn?  Years ago we had a neighbor a few doors down who had a daughter with Autism.  She is the first person I befriended who had a child with a disability.  I used to marvel at how amazing my friend was with her child.  I never once felt sorry for her.  She never felt sorry for herself either, as far as I could tell.  But I'm sure it was hard.  I know she had many challenges and life was not easy for them.  Rick and I told her we had no idea how she did it.  We told her we could never parent a special needs child. 

I remember visiting an inclusive preschool program when Jesse was 3. We were thinking of enrolling him and were invited to stop by for a while. The day we observed, a little girl in a very tiny wheel chair entered the room.  She had just received a new voice output device attached to her chair. She was showing it off to the teachers.  The entire staff gathered around very excited and anxious to learn how it worked.  This little girl had severe physical disabilities that impacted her ability to participate in the preschool program without the support of an aide by her side.  I felt sorry for her.  I felt sorry for her mother.  I was so grateful my child was not in a wheelchair.  I felt badly for feeling this way.

I studied the mom closely.  She was bubbly.  She was enthusiastic.  She was so nurturing with her little girl.  She seemed so 'normal'.  I couldn't imagine how she could be so happy.  I wondered if she cried herself to sleep at night.  I wondered how she made it through each day.  I wondered why her child had to live a life like this. Mostly,  I remember thinking I could never be the parent of a special needs child.

What I've learned since Josiah's birth is that no one probably ever thinks she could parent a special needs child.  I've heard of couples who stopped having children for fear that the next child might have disabilities.  Just as with typically developing children, there is no owner's manual.  There is no road map.  We don't get to choose.  We navigate each day, each hour, each moment the best we can.  We make many, many mistakes.  We reach out to others for support.  We wish life could be easier for our special needs child.  We wish we could change it and give them less challenges, fewer hurdles to jump over.  But we can't.

What we can do is walk by their side, giving all the support they need.  We can treat them just like any other child, ensuring they have all the rights and opportunities of their typically developing peers.  We can be their voices when they have none.  We can help them overcome obstacles.  We can be their biggest cheerleaders.  We can teach others to accept them and include them.  We can love them.

I never thought I could be the parent of a special needs child.  I'm so glad God thought differently.