First Things First

You know, I have thought about starting some sort of blog on behalf of my husband and everything he and I have been going through with this little rare disease. He's been struggling with this for YEARS. It wasn't until recently that he was diagnosed - and yes while a diagnosis is great, we still don't really know much about the disease. It has really been weighing on my heart to do this; one - because there may be someone else out there struggling like we have for years with no answers and maybe, just maybe they will happen upon this blog and not feel so alone. Two - because it would help me cope and process the insanity that comes with sitting in a hospital room for weeks on end.

Of course, all this being said - I had to talk it over with Larry as he is a BIG part of this discussion and I would never want to say something or do something that would make him feel uncomfortable. We are a team, always have been and always will be.  

So, if I've posted this - he has given the go ahead. YAY!

Some first things first - I don't really know who will be reading this (aside from those of you who have said you would) - but as Larry and I are both strong in our faith, this blog will sometimes have religious connotations. If you're offended by this - then maybe you should find another blog to read. My life and our beliefs are very deep and usually private (aside for those that know us) but again, I feel like I may help someone find some kind of information for what has and hasn't worked for us as far as this disease goes.

I, 100% think God is behind EVERYTHING that has happened recently good or bad and that only He knows the purpose behind what's going on.

I'm pretty sure at times the posts being made will get emotional - sitting in a hospital room while waiting for your skilled team of doctor's to decide your husband is safe to come off of the ventilator can make you feel things you normally wouldn't.

Being that I've started this blog well after a diagnosis - I will more than likely start at the beginning or try and sum it all up to catch everyone up.

However, it is late now and before I end this post, I want to thank EVERYONE who has donated or shared the GOFUNDME page. We started it today - and Larry and I are both in shock with how many shares and donations the page has received. Me, I just want to cry - in fact I'm tearing up now. It just amazes me how much - ugh see this is where I knew I would be bad with my words. It amazes me how much people care. Just, thank you so much. All the prayers, well wishes, shares and donations are so appreciated. This man - he's my life and means the world to me and in turn it means so much to me that we mean a lot to you guys and gals.