Soap Box

So.  I try really hard to keep a positive outlook.  I try not to complain and I try to look at the bright side of everything that's happened with my Levi.  But, after nearly a year of being positive and upbeat, I'm going to get on a little soap box.  I think I've earned it, and not just because of what I've been through, but also because I used to think (and probably say) the same things that I am being told on a regular basis.
To start with, if you've said some of the things I'm getting ready to complain about, I don't want you to feel bad.  You're not the only one who's said it to me.  And, like I mentioned before, I have, myself, more than likely, at least thought it about someone else.  Secondly, I'm not sharing these thoughts out of offense or to defend myself or to make anybody feel guilty.  That's the last thing I'm interested in.  I really just want people to at least know what not to say to the parents of a child with special needs.
First.  Vocabulary doesn't equal communication.  Just because a child can say or mimic some words does not mean he's at age level for his communication.  Levi has been taking off on the vocab side of things.  He's able to tell us when he wants a drink and when he wants to go play outside as well as several other 'I want' and 'I go' phrases.  Thank You, Jesus!!  It's exciting!  But, at two and a half, he still doesn't comprehend "come here" or "where's the dog" or "get the block" or most commands for that matter.  He still can't tell me when he's in pain or doesn't feel well.  "I want" and "I go" are a huge accomplishment, but it can only get him so far.  So, please don't tell me that he's at the same level for language (or anything else for that matter) as other kids his age.  It doesn't make me feel better.  It makes me feel like you think I'm blowing things out of proportion.  The truth is, I'm not.  Many professional language/development tests and experts have confirmed this point.
Here's another example of what not to say:  "He doesn't seem too far behind developmentally.  He is really big for his age,though, isn't he?"  No.  He's average sized for his age.  What you're seeing is a two and a half year old acting like a twenty month old.  Yes, he seems big for the way he's acting, but it's not because he's above average in size, it's because he's below average in development.  He's supposed to be that size; it's just that he's supposed to behave that size too.  When you know a child is developmentally delayed and you openly associate that with his size and not his development, to the parent, you've just invalidated the struggles they and their child have gone through.  When people say this to me, I feel like they're telling me, "No, Keira, you don't know what you're talking about.  He's just fine."
Which leads to another one:  "He'll be fine. You know that, right?  He'll be just fine."  No.  I don't know that.    He could be fine, but he might not.  In fact, there's a chance that he could be really not fine.  The thing is, there are plenty of people out there who's kids are not fine.  There are children who are completely mentally handicapped, kids who die of cancer, and kids who will need constant care for the rest of their lives.  God does not love me or Levi more than He loves them.  If He allows it for one child, I cannot say that He won't allow it for mine.  I hope against hope that He completely heals my son.  I have faith that He can and will.  But, no.  I don't know that He will.  Faith and knowing are two different things. I mean, seriously, kids aren't handicapped or terminally ill because of their parents' lack of faith.
Which brings me to:  "Well, you just need to rebuke it," or "I just wouldn't accept it," or "You just plead the name of Jesus over him..."  If anybody else tells me I just need to plead the name of Jesus over him, I might just go crazy.  As though I'm not already doing that every single day.  Say one of those things to me and you make me feel like you think I'm so stupid that I don't pray for my son or that I'm completely lacking the faith that I need for my son to be healed.  Don't get me wrong.  I want you to plead the name of Jesus over my son.  PLEASE pray for him.  But, the fact is that so far rebuking it, rejecting it and pleading Jesus' name hasn't caused it to go away yet, and it might not ever go away. In fact, there's a medical chance that it could get worse - way worse.
Some people might take that last statement as a lack of faith on my part.  But, let me tell you something I've learned about faith through all of this.   It's one thing to believe that God can heal my child and to hope that He will. It's a whole other issue to know that instead, God could allow it to get worse and He would be just and glorified in doing so.  You see, His ways are not my ways and His thoughts are high above my thoughts.  If His plan doesn't involve Levi's healing from epilepsy and developmental delay, I have to have the faith to believe that that's the better plan.  It takes so much more faith to want God to have His way, even if it means things get worse, than it does to believe that He can heal my son just because I said "in Jesus' name".  Trust me. I've prayed Jesus' name over people and seen them healed.  This takes way more faith.
  So, there you go.  I have officially vented.   If I was too harsh, I'm sorry.  I've actually edited this post a lot because I don't want to upset anybody.  But, people need to know that we have to be careful.   Alot of the time that people have said these things to me they were trying to be encouraging, but they ended up invalidating or minimizing the situation I'm in.  And that's why I have to share this post.   I haven't written it out of frustration with a person or people.  I've written this out of frustration with feeling like nobody really understands, which, even in the midst of many great friends, can be a very lonely place.