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.

"Love is at the Heart of Healing"

The temperature inside our church yesterday must have been in the 80's thanks to a broken compressor in the air conditioning system.

I was tired and a bit stressed about the hand bell piece we would soon be performing.

And, to be brutally honest, I was not paying as much attention to the sermon as I should have been.  Then these words jumped out at me.

"Love is at the heart of healing."

Wow!  That got my attention.  I actually took out a piece of paper and wrote it down.

While those words can mean a lot of things to different people, for me it was all about Ian.  With the events of the last few weeks concerning the STX209 drug trial, it was a good reminder that all the drugs in the world can't give my sweet boy what I can.  Love.  Pure and simple, it is the most powerful medicine there is.

 It is a gift from a God that loves us.

I would be lying if I did not admit that there are times when I am angry at God.  Why my boy?  Why all of our children?  Is it a punishment?  Did this happen because we did bad things, or is it to strengthen us in some way?

Then I calm down and realize it just IS.

  I believe God gave us the curiosity and the great brains that we have to make things better, to find cures and treatments, to figure out ways to adjust to what we are given.  And if this treatment doesn't work, or if it does work and someone says we can't have it, then there will be those who fight those decisions.  And they will use the talents that they were given by God to get it done.

But, in the meantime, we will heal with love.

Ian has been off of STX209 for almost a month.  His behavior at school has been mostly great, he has been funny and loving and doing great things.  He wakes up every morning and goes to bed every night with a smile.  It's not perfect, but it's good.  Really good.

And his love is at the heart of healing me too.

Ian reaching for a bubble as a toddler