Life As We Know It (now)

So today is one day after Logan's first birthday...why am I starting this blog now?  Well, that's a good question.  The simplest explanation:  It's cheaper than therapy. 

Too much has happened in the last year to write about in one post so I'll just start here and fill in as needed.  I guess I finally feel strong enough to share the things I am feeling, and I hope that not keeping them bottled up inside will make me a better mother, wife, teacher, and person.  It was a hard year to say the least.  Definitely not what I expected after learning that we were expecting!  In November, Logan was diagnosed with an extremely rare genetic syndrome called Mowat-Wilson syndrome.  You can go google it, but you won't find too much about it.  About 200 cases in the world have been diagnosed.  Obviously, there are more cases out there, but those are the few we know about.  According to what we read, Logan will have moderate to severe intellectual disablities and other areas of developmental delay.  The hardest part I have is that he may never talk or have very limited speech.  Everyday I try to play in my head what I think his voice might sound like saying "mama" or "dada" or "I love you." I'm hopeful that all of his laughing and babbling will turn into words one of these days.  Because MWS is so rare and there is so little research, we don't really know what to expect.  We want to believe that Logan is on the more mild end of this spectrum.  He is so aware of his surroundings and always wants to be around people.  He is truly an "Arnold" in that regard.  There are so many questions and so few answers.  People constantly tell me "well, you don't have a crystal ball with any child.  you don't know what the future brings."  I guess that's true, but at least you have an image of what things will be like.  You have a dream for what you want your child to do, to be.  I'm not sure what my dreams for Logan are yet.  I am guarded.  I may still be in a little bit of denial (or my mom says it's hope).  It's hard when he looks "normal" (ah, normal, what an interesting word!) and is basically healthy as a horse.  It's just like he's 5 months behind what he should be doing.  When we're not around other kids his age to compare him to, I sometimes forget about MWS.  But, when we're at Monkey Joes with children running all over the place or at the Children's Museum and little ones are exploring all over the place...it's harder.  It's hard not to compare him to other children.  But it's not fair either.  To him, to me.  It will drive me crazy if I don't stop.   I need to find a way to give up that competitive nature of mine.  Or at least turn it into determination for my son.