What Would She Tell Me If She Could?

One of the things I wonder about a lot is what goes through Emily's mind. I would give anything to know what she's thinking when I'm holding her and looking in her eyes. No amount of money would stop me if I could pay to listen to her thoughts.

Sometimes I imagine what Emily would tell me if she could...

"Don't worry daddy, I'm okay. It might look yucky to you but I'm really okay."

"I love you daddy. You and mommy are the bestest parents in the whole world!"

"Daddy, what's a touchdown?"

"Do we really have to go back to the hospital again daddy?"

"Daddy, I dreamed about playing with you and mommy at the park last night. Can we go there and play today!?"

"My best friend Ava told me that we will be friends forever daddy!"

"That medicine makes me feel funny daddy, do I have to take it?"

"Will you read me a bedtime story daddy?"

"Daddy, will you tell me some more about Jesus?"

"Can we go and visit gwandma and gwandpa soon daddy?"

"When I have my seizures, I don't want you to be scared. Will you be brave like me daddy?"

"I think I need my diaper changed daddy! he he he"

"What are you getting ready to feed me daddy?"

"Daddy, that's NOT how mommy does it."

"You're my hero daddy, I love you!"

Emily,

I know you can't tell me what you're thinking but believe me, you've already said so much without saying a single word!

I love you baby.

Love,
Daddy

Circumstanial Revelation

"Circumstances do not make a man, they reveal him."

- James Lane Allen

I read this quote just a few minutes ago as I'm sitting in the hospital with my beautiful daughter Emily. Our hospital visits are usually seizure related but this time we are here because she has pneumonia. We hate being in the hospital, who wouldn't? But we are thankful that we have almost gone a year (11 months) since our last visit. Not only that, but we are here because of something other than seizures!

That being said, I found it very appropriate that I should just happen across the quote at the top of this post. Most of the time we hear about how someone learned a lot because of a specific circumstance or a sequence of circumstances they were in. But never had I thought about it in this particular way. I never considered that circumstances actually reveal who we are.

Ever heard the old saying, "I wouldn't want to go through that again, but now that it's over with, I'm glad I did because I'm a stronger person because of it"? I know for me, I've said it a bunch of times. I've been through a lot of circumstances that have truly grown my faith and made me a stronger person. Circumstances that not only helped me but helped me help others too.

While it's true that circumstances will always have the potential to help us grow stronger it is also true our circumstances can be the best tool to actually show us WHO we are. Next time your circumstances aren't so pleasant and you find yourself becoming frustrated, take a minute to think about this opportunity for revelation. Let your circumstances reveal who you are!

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!

"I Like You For Being My Daddy"

I had another dream last night.

This one was more vivid and detailed than any I've had in a long time. I woke up in tears of joy and came running out of the bedroom to tell Erica. She couldn't believe it either but knew how much it had meant to me as I sat in the chair telling her while the tears were falling from my eyes.

Here goes...

I dreamed we were at my house and in our living room was Erica, myself, dad, mom, George (my brother), Cayla (my sister) and Emily. This is kind of weird if you know my family because my parents are divorced, but dreams have no rules I'm told so back to the dream...

I was sitting in the rocking chair and dad, mom and Erica were on the couch. Emily was being held by Erica and was perfectly content.

We were just sitting around laughing and joking (typical us) when I asked, "What are we going to eat?" (Again, typical us)

We couldn't think of something right away and got lost in conversation and jokes once again when out of the blue I blurted out, "How about chicken nuggets?" Dad chimed in and said, "yeah, KFC does sound good, let's do chicken from KFC."

With that he took a box of, I think it was Spree candy, and poured a handful of purple and green candies (yeah, my dream was THAT detailed!) in his hand. If you know my dad you know that he likes to show off in a playful way sometimes. When he eats ice or candy he can crunch it so hard and loud sometimes that it can be annoying if you allow it to be, but we mostly just laugh when he does it. Well when he put the candy in his mouth in my dream he started crunching it very loudly trying to playfully show off.

Mom turned around and looked at him and said, "you're going to break another tooth and have to go back to the dentist if you don't quit that!'

Now here's where the dream takes an awesome turn...

Emily, like I said, was sitting content in Erica's lap. In my dream she was still the same age and size as she is now. But in my dream she had the ability to talk "baby talk". You know, gibberish or whatever it is that babies do at that age when trying to learn to talk.

Emily in my dream, after mom said that to dad, turned around and looked at my dad and unloaded a long line of "gibberish" at him for being so careless with his teeth! It was a long line too. It was something that really sounded as though she was scolding him and letting him have it!

We were all amazed that she'd done this! So I jumped up out of the rocking chair and came over in front of her and sat on the floor and reached out my hands to her hoping she would know that I wanted to hold her.

Pause

(This would be the moment for a Kleenex if you are like me and get emotional. Sorry, but at least you've been warned!) Now back to the dream...

I reached out my hands hoping Emily would take the hint and let me hold her and love on her for her amazing new accomplishment. When all of a sudden...

She looked at me and she clearly said to me...

"I LIKE YOU FOR BEING MY DADDY"!!!

What?!?!

My heart was overjoyed! I couldn't believe she said that! I looked around to see if the others had heard what she just said and they indicated that they too had heard it! I instantly started crying.

I woke up from my dream and real tears were streaming down my face. I was crying in my dream AND I was really crying in reality as well. I just laid there in bed for a minute or two thinking about it over and over again wanting so badly for it to have been real. Oh how I would have given anything for that moment to have been reality, but I THANK GOD that he allowed me to have this dream where my daughter looked at me and said those words that now mean so much to me, "I LIKE YOU FOR BEING MY DADDY."

I stumbled out of bed and walked out into the living room where Erica was holding Emily and I told her all about the dream. She couldn't believe it either. And I noticed she was holding back tears of joy as well. She also said she couldn't believe how detailed and vivid this dream was.

I still can't believe it. I still can't believe that for a small minute I got to hear my daughter tell me that she "LIKED" me.

I don't know what it is about this gift I have with dreams. I don't know what it is that makes them so vivid and detail oriented that it really seems like reality. Sometimes when I dream I think of it as a curse when it's a bad dream. It's dreams like this one though that I know it is a gift. And right now I'm thanking God for one of the best gifts I've been given in a long time. I'm thanking God that he allows my daughter to talk to me in my dreams!

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!

In My Arms

I heard this song on the satellite a few days ago and it has captivated me for several days now. When I hear it I think of Jesus holding Emily or holding me telling us it will be okay. What a great song Plumb sings!

And what a great feeling it is just knowing that God will ALWAYS hold us in His arms!!