Oh Baby....

Dear Alexander,
I'm struggling a little.  Just a little.  Your seizure meds are a little out of wack.  You are lethargic.  Not an exaggeration.... you are just exhausted.  Last night it was the worst it has been.  You could barely hold you head up to eat a few bites, much less finish an ounce.  Sometimes I feel like a big fake.  Usually I'm ok, but this past week has been a struggle. 

I found a blog written by someone who was still coping with the news of Wolf Hirschhorn Syndrome.  For whatever reason, this post really hit home for me.  I could feel myself slipping back a year ago.. to hearing the news

Also, for whatever reason (again... I have no idea)... I find myself thinking about that stinking 15.32........ sigh.... 
It is probably because of the lethargy.  It is probably because you have gone really far backwards.  Even though I believe in my heart that once we get these meds fixed up, your activity level will increase ~ I can't help but be a little afraid.  It breaks my heart to hear you cry through all activities.... through the pt, and the ot, and eating, and drinking.

I try to think positively: you drank 40 mls tonight.  For those unfamiliar with mls - 30 mls is an ounce.  This is more than you have drunk in 2 months... since this post. Even while I am celebrating that you have drunk that much, my heart breaks that it is still so little....

I also am excited about your seizure dog.  The auction is getting ready to launch June first and I'm ready to get back to the art of sleeping some.  I have also been thinking about what to do if we raise more money than necessary for your seizure dog.  It will be nice to have a little something in the trust for future items.

I've been thinking it would be nice to have some annual thing to do.  There are so many things out there that you could benefit from and our insurance doesn't cover it.   Like the cup you are currently drinking from - that cost $30.  We might be able to purchase some of those things, (like the cup) but the twins would never have anything special for themselves. 

But what I really would like to do is help other people get a seizure dog.  If we created an annual fundraiser, we could donate 1/2 of the proceeds to 4 Paws for Ability - the place we are getting our seizure dog from.  They are the only place that would accept you at your young age and with the possibility that you may never be verbal.  I feel there are other families out there that could benefit and I so want to help them.

So there it is.  My heart is moving in such a direction to begin to look for ways to help other people ~ all the while, I'm thinking about you.  Your struggles are my struggles.  I love you little buddy... but it breaks my heart right now to know you will most likely never be able to read this sweet love letter.