Wednesday, September 29, 2010

More Personal

I've been trying for a while to figure out what exactly is wrong with my blog. I've thought of things like...

Does the layout and design catch anyone's eye?


Do I just have writers block?


Has everything I say already been said?

I've asked lots of questions like this and couldn't think of any answers. Until now.

My blog isn't personal enough.

It's true. It's been true for a while. I don't know why I didn't see it before but now that I've noticed and figured it out it screams at me like a huge neon sign flashing in my eyes at 1:00 in the morning.

So, with that being said, this blog is going to shift gears a little. Hopefully for the better. But I'll let you be the judge of that.

It's still going to be Christ centered and I'm still going to do things the way I feel need to be done, only now we are going to add a little more "Joe" to the recipe.

I should have known this is what's been missing. I should have seen that for post after post each of my entries lacked more personal investment. It was like anyone could have read what I wrote and claimed it as their own. The words were there but Joe wasn't. I've been M.I.A. for too long.

So now that that's off my chest let me say that I'm looking forward to revealing more and more me. I have too much to talk about and too much to share for my blog not to be used more often. Having a daughter with disabilities leads to lots of discussions and topics. (Hopefully it will also lead to lots of help and insight to someone else out there too). If nothing else I hope to accomplish that.

I started this entry at 5:00 am. Not because I'm bored on a weekend ( I wish ), but because last night has been probably one of the worst nights for our family. Emily (my daughter) has had over 130 seizures and the only reason things have "calmed down" is because she has been medicated to the point of sedation. It's the only thing that stops the seizures. And 9 times out of 10 when the medicine wears off and she comes back around the seizures start right back up where they left off. We call her seizures "the monster".

Emily was diagnosed with Infantile Spasms but the doctors call her a "mystery". This is because there is no medical reason for Emily's condition. Round upon round of genetic testing has come back clear. It's not genetic. Test upon test has been performed and there is no medical or physical reason that Emily should have these seizures. There was no traumatic birth, she wasn't premature and she has not suffered any kind of injury. She's a "mystery" to many people.

As a result of this seizure disorder Emily has undergone many things to try and help control them. The list is long and needs to be shared but I will do that in another post. We literally have journals filled with all the things she's gone through and she's only been with us for almost 16 months now. She's been through a lot in her short little life. I get a lot of inspiration from her, she's the strongest person I know besides perhaps her mommy.

There's not a whole lot of people who know much about Infantile Spasms. It's still something that is little heard of but we've noticed and made friends with other parents who deal with the same thing or same kinds of things. I'm glad it's not as rampant as cancer or aids or something like that but it does get frustrating that the same kind of attention doesn't go to making more people aware of this condition too.

Lot's of mommies blog about I.S. but you don't see many daddies doing it. I think that's a new direction God wants me to go with this blog. It's part of the process of making it more personal that I'm talking about. Daddies need resources too and hopefully this will inspire more and more men to step out and share their lives with this disability as well.

I like to remind myself when things get really hard and out of control like last night (or this morning) that I am still "in the grip of grace". God always holds us in His hands, even when it doesn't feel like it. It's in the grip of grace that we are even blessed with a daughter and it's in the grip of grace that we are able to enjoy her. She's an angel sent from Heaven. I don't doubt that one bit. So even in the bad times, the ones that make you want to scream and question everything, we find more and more that we are still in the grip of grace. And that, believe it or not, is not a bad place to be.

I'm looking forward to being more personal with this blog. I hope it blesses you in some way or another. And may God get all the glory now and forever!

Be Blessed,


  1. I'm excited to see where you take it, Joe! And there's tons of people lifting you guys up in prayer - me included.

  2. Oh friend... I'm excited for you! I think you adding the "touch of Joe" will help YOU & help others!!! I know the Joe we all love - so it'll be exciting to let the rest of the world see that too!!!!

  3. It is so like you to want to help others. Your love for your daughter shines bright.God knew exactly what he was doing when He placed His new creation in your hands.Run with it Joe and I too wish you much success.Prayers daily for your family!!