I have joined a few online rare chromosome disorder support groups. I usually take great comfort in these groups-- that though we are walking Matthew's journey on our own, that there are people walking similar journeys. I get ideas, support and information from these groups. But once in a while, something I read rubs me the wrong way. I have encountered 2 such posts in the last few weeks.
The first was a post about Down Syndrome and how children with Down Syndrome should be treated as if they were diagnosed with an 'Einstein Syndrome' instead, reaching above and beyond. See the article here. This is the line that bothered me the most: "I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents."
In the same vein, a woman had posted that she was excited that she had to tell her daughter to be quiet, something that didn't believe they would ever have to say. I posted back that I was currently praying for that experience with our sweet baby Matthew and I loved to hear that there were people on the other side. She responded to me saying "It'll happen! God's amazing grace works in everyone. If we believe that God has the last say and that he has a different plan for our babies, it will happen!"
I know these posts were intended to be supportive and give hope beyond diagnosis, but what frustrates me most with this type of comment is the implication on the other side. What if it doesn't happen? So, if Matthew doesn't talk, it is because of my low expectations or I didn't believe in God enough? I wish I was that powerful--that my working with him, that my praying for him, made the entire difference. I wish it did! But what I am learning is that I work with him, I pray for him, and I have to wait to see what happens.
What happens (or doesn't) with Matthew is mostly out of my hands. I work with him, set him up with the tools and tricks to do the next big thing, but some developmental switch has to get flipped, all according to God's plan which may or may not include him talking. God's amazing grace may have determined that the bigger plan was for him not to talk, or to talk much later. And even if Matthew talks, there are millions of kids (and adults) who are the flip side of this-- whose caregivers give all they can, whose doctors do all they know, and whose prayer warriors pray fervently-- and sometimes it is what it is, not because they didn't work hard enough, or pray hard enough, or believe enough. No ones fault, it just is what it is.