The list gets longer

I love my church.  I really do.  But there are days when it is very difficult to go.

Wait, what?

Yes, today was one of those days.  And if you're a parent of a child with special needs, you will quickly understand where I am coming from.

It is the tradition at my church to celebrate the Seniors that are graduating.  They are all acolytes, i.e. they participate in the worship service in various functions.  They have been doing this since they were about the age Ian is now, and now they are moving on.

Since I've been attending this church for over 10 years now (really?), I've known these young adults since they were around 8 years old.  They are all wonderful in their own special ways, they are all heading to college and getting ready to step into the big wide world.  I'm happy for them and for their parents, believe me.  I'm not just saying it.  Three of their mothers are good friends of mine.

And yet, as I sat there during the presentation of the gifts and the sweet speeches, a part of me just ached.  While I was crying for the sweetness of this big moment in these young lives, I was also crying for yet another thing that my child will not be able to do.  The list just seems to get longer.  He is "graduating" from 5th grade this week, but his teacher felt, and I agreed, that he would not be able to handle the special ceremony that they will do at the school on Tuesday.  We're going to do a little celebration in his classroom, and I'm worried that he won't even be able to handle that.

We live in a very social world.  I never really thought much about it until Ian came into our lives.  If there was a party, we went.  Niece graduating from high school?  Sure, we'll come.  Not anymore.  Ian simply cannot handle it.  Even if we go to events with him, I can hardly enjoy them and he is generally unhappy.  So, you adjust.  But when those events are those which your child is expected to be part of, it gets trickier.  I posted on Facebook about Field Day and heard from several other Moms that agreed it was not something their children enjoyed.  Hard to imagine, isn't it?  But this is our world.

I hate Fragile X for many things, but I think the hardest thing is the joy of childhood that has been stolen from my child.  And, admittedly, the joy that has been stolen from me.