Happy Purple Day!

Just wanted to show the picture of all of us wearing our purple for Epilepsy Awareness Day.

WE LOVE YOU EMILY!

Purple Day

Tomorrow is Purple Day.

What is Purple Day?

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website (by clicking the link above) you can see many ways you can help.

If you choose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined! Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure. epilepsy.com is a great site for more information.

As you already know, we wear purple for Emily and all the friends she's made who also wear purple!

Dear Emily #1

Dear Emily,

I heard a song on the radio this morning that really struck me and reminded me so much of you and how much you've taught me. Yes I mean that. You have taught me and mommy so much! And you are only still so young! I can't imagine the day when we can have full conversations and I can teach you about some of the things you've taught me.

Emily, you are the best thing that's ever happened to me and I really mean that. From the day you were born you changed who I was. I thought I knew most everything until you showed me different. You awakened me to a world that I never knew existed. Thank you!

This song I heard on the radio this morning reminded me of how much me and mommy have been through with you. All the hospital visits, tests and sleepless days and nights. All the times we worried about you and just held on to each other because that's all we really had left. You showed me a side of God that I never knew before. You've allowed me to experience the real, living, merciful and mighty God of the universe! In our worried sleepless nights we have felt God holding us together. As we lean over your bed/couch and look in your eyes and see that smile you sometimes give us we always see one of God's PERFECT angels and know that even though it might look bad everything is still so perfect.

Emily, you have taught me to see beyond just what's in front of my face. You have taught daddy what is most important in life. I used to think that having enough money to live comfortably and being able to do whatever I wanted without fear was everything. I used to think that my real friends were the ones who told me what I wanted to hear. But you Emily, you've shown me who my real friends are. The ones who call to check on you, not me. Those are the real friends in life.

Again, this song is still stuck in my head at this very moment! I think it could be our theme song! I can't wait until you get bigger and I can play this for you and you can help me decide if it will be our song!

I held you in our chair and rocked you last night. You love when I do that! But you are growing up so fast and getting so big it's getting harder to do. I love the way you look up at me when I rock you. I love that you try to talk to me! And deep down inside I think I know what you're trying to say to me so it's just the same as if you were really saying it. I know in your heart you are.

You brighten my day Emily. You make all things right again when daddy is stressed out at the end of the day. All I have to do is hold you or play with you. I get lost in loving you so much. I think about the things we are going to do when you grow up to be a big girl. There's so many things I want to teach you and tell you about. So many times I've thought about how it will be. How it will be when we kick that old seizure monsters butt and kiss Infantile Spasms goodbye forever!! IT WILL HAPPEN!!!

Until then though Emily, daddy is going to keep learning from you. You are the best teacher daddy has ever had. I'm loving you more and more each and every day. Daddy thanks God for you each and every night. Daddy thanks Jesus for watching over you and I thank all the angels that surround you and keep you safe. You have a bunch of people surrounding you and watching over you Emily!! YOU ARE SO LOVED!!!

Ok Emily, here is the song that daddy heard this morning and the one that I just can't get out of my head. I will play it for you so you can hear it with me.

It's times like these (with you) I learn to live again!

It's times like these (with you) I learn to give again!

It's times like these (with you) I learn to love again!

It's times like these time and time again Emily.

I LOVE YOU!!

Love,
Daddy

Fraggy Friday

Friday's are coming much sooner now that I am trying to do the Friday fragment thing every week. I can't believe it is seriously Friday again already!

Well, that leaves only one thing left to do. So, LET'S GET FRAGGY WITH IT!!!!

I think I have an addiction to social media. I check facebook and twitter constantly for new updates or to see if anyone has commented on my "witty" updates. I even have my cell phone set to text me when a new comment is posted on one of my status updates. Could there really be a diagnosis for something like this? I don't see why not, what do you think? Are you like this or am I just really weird?

I don't think I'm as bad as this picture indicates but I would definitely have to say that I got it bad!

*****

Quote of the week:

"Straight tress have crooked roots." ~ Chinese Proverb

This quote was used in my lesson for our Wednesday night youth group at GCC. I seen many students writing this down and posting it on their facebook status. It really does make a lot of sense and especially in the way I used it to tie up parts of my lesson.

The context I used it in (to make a long lesson short) was that we all have past mistakes, shame and guilt that we regret. Once we give our lives to Jesus our past is forgiven and our sins and regrets are cleaned up. We are like trees. We have a past that no one can see and it is a mess. Much like the roots of a tree. And though we really regret our past and sometimes allow it to hold us down we need to worry about the fruit that we produce rather than the roots of our past. In other words, what kind of fruit are people picking from your branches?

Straight trees have crooked roots. Let's not get so caught up in the past (the roots), but let's focus on if we are doing good works (producing fruit) like Ephesians 2:10 calls us to do!

*****

There is a brand new website that I stumbled upon on another persons blog. If you are a big music lover like me and like a wide variety of different types of music then http://stereomood.com/ is for you! They have everything on there! You can just click on whatever type of mood you are in and it plays songs that fit nothing but that particular mood. I highly recommend you check it out. I bet you will like it if you do!

*****

Another thing that you might find interesting is finding your family "Coat of Arms". I don't know why in the world I thought to do this but I am so glad I did. I was really impressed with the way our C.O.A. looks and what made it even better was the motto inscribed on it which reads...

Know thyself, and learn to suffer.

If you know our history with Emily's battle in I.S. then that motto fits us perfectly! We are having to learn how to deal with suffering on a daily basis. How crazy is it that I "stumbled" upon that motto and how neat is it that it really fits my family today! I was really shocked and amazed!

And hear is what our C.O.A. looks like. I really like it!

The Motto is usually placed right above the top of the picture. I couldn't find a picture on the net that displayed that so I thought I should tell you.

*****

And to bring Fraggy Friday to an end for this week I would like to leave you with some amazing pumpkin artwork to help get you in the mood for this Halloween season. Some of these are truly amazing!

Enjoy and have a great weekend!!

Be Blessed!

Joe

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?

or

Do I just have writers block?

to

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,
Joe

Your Strength (The Missing Piece Part 2)

The enemy is after your joy because he is also after YOUR STRENGTH!

Nehemiah 8:10

10 Nehemiah said, "Go and enjoy choice food and sweet drinks, and send some to those who have nothing prepared. This day is sacred to our Lord. Do not grieve, for the joy of the LORD is your strength."

If you have no Joy in your walk with Jesus. You really need to examine how you got there. How did you all of a sudden end up with no joy? Chances are, it didn't just happen over night.

Our enemy is on his game. He knows what he is doing. He knows what support system needs to be taken out to cause our entire faith to collapse on it's face and believe me he is always on his job. If you are meeting opposition from the enemy in regards to your joy then take that as a red flag to stand back and make some observations. Really examine your walk for any clues that might give away how you've really been feeling lately.

One of the best ways to tell if something is wrong with your joy is how you act when you are alone and how you act when you are around others. Is there a difference? If you find you've been "acting fake" because you are around someone else then take warning, you are probably losing your joy. If you find you've just left an event where other believers are and you all of a sudden find yourself in a "funk" then know that too could be a warning sign.

Our joy should be constant. It doesn't matter what situation we find ourselves in we should always have our joy in the Lord. It's our strength. It's also what Satan wants to attack the most.

It's been so easy for me to feel like I've lost my joy lately because of all the personal struggles my family and I have gone through with Emily's battle with Infantile Spasms and her seizure disorder. Believe me, I know what it feels like to feel attacked and I know how awful it feels to have to come to the place where you are really questioning if you've lost your joy or not. It's not easy.

But if you allow Satan to steal, kill and destroy your joy then you lose your strength. And when you lose that you start to lose it all.

Here are some ways to maintain and build your joy.

1.) Read The Word.

2.) Pray.

3.) Learn from Biblical messages.

4.) Spend time with godly friends who will encourage you.

I pray that you find your joy renewed each and every day.

Be Blessed,

Joe

The Healing Hand Of God

As I write this post it has now been over one FULL week that Emily has been seizure and spasm free!!!

We are so excited and feel so blessed. All of the prayers and new meds have helped for sure but most of all it is the healing hand of God that has blessed us so well.

And just as a small token of my appreciation I wanted to post this video to give honor and thanks to our great and mighty God.

Always remember, the healing hand of God!

The Rainbow

How great is our God?

VERY!!!

We came home from the hospital yesterday with Emily and just a couple of hours after being home we look out the back window and this is what we see...

Beautiful huh?

I think there are many times in our walk with Christ that God likes to show up in a big way. I even believe that there are times that God likes to, well, show off! :^)

God showing off has been needed in our little family recently. We've just been through so much with Emily's battle with Infantile Spasms. Many hospital stays and just a really hard time. We have been caught in a hurricane lately it seems with all that we've gone through but God has always been there.

Only God can provide a rainbow in the middle of a Hurricane!!!!

And that is exactly what He did for us, LITERALLY!!

I think back to the flood in the Old Testament. How after all the destruction and devastation was over with God made a promise to man that He would never flood the earth again and to sort of "seal the deal" he put a rainbow in the sky as a reminder that He would always keep His promise. And centuries later we see that God has upheld that promise. The earth hasn't been totally flooded and we still sometimes see rainbows afer the storms.

So whatever you are going through today, whatever storm you find yourself in the middle of, take comfort in knowing that God is still providing the rainbows. He is still on the throne and He is still keeping His promise. He is always with you!

"I will never leave you nor forsake you" - Joshua 1:5

I Don't Understand

I don't understand Infantile Spasms.

I don't understand how things can be good one minute, several minutes, several hours, several days and then in an instant it's back to square one.

I don't understand how all these medicines work fine for a while (long enough to get our hopes up) and then they become ineffective.

I don't understand why my precious little girl has to go through this.

I don't understand why a cure for this hasn't been discovered yet when we've been on this earth for so long.

I don't understand how our world seems to have paused while everyone else's continues to spin.

I don't understand how I'm supposed to just keep "going through the motions" when what I really want to do is scream!

I don't understand how Job did it!!

I don't understand why Jesus would want to do it.

And I really don't understand why it exists.

I don't understand suffering.