Tuesday, September 17, 2013

Support... Not an Easy Thing to Ask for

Renn has adjusted back to school with pure Jedi perfection. We've been amazed at how quickly his hair has grown back, and how well his scars are healing.

That being said, we got the call today.

Yeah. THE call.

Renn's next (and prayerfully LAST) step will take place on October 28th. We will be going in, placing a grid on the right side of his brain, and then wait for about a week for seizure activity. After we get what we need, he'll have one more surgery.

And that's the one that has us depending fully on God. The kind of trust that you go into 100% blind. The kind that you pray and pray that it's Him directing you, and not some whim.

We are a bit unnerved, tonight, but we are at peace. We've been praying for peace this whole time... We really do have it.

The hubs and I are at a crossroads now, though. We live so far from UCSF, and our deepest desire is to have all four of us be together during this ordeal. But it's looking like the Ronald McDonald house is not going to be a possibility. We can't afford to pay the medical bills that lay before us AND have the hubs and Eli come stay in San Francisco with us. So, we have set up a page on GoFundMe.org, and are asking that you spread the word.

We hate from the bottom of our souls to even ask. The hubs and I are both avid believers in working hard and earning every dime. But we can see how out of control this is for us. So if you could, please share the link at the bottom of this page! Let everyone know that Renn needs his daddy and his brother by his side. It means SO much to us.

Thank you for your love and support. Even if it's through prayer, that is by far more important than any dollar amount.

We will keep you updated. There's more to come as the hubs gets ready to donate blood to Renn for the blood transfusion(s) he will need, as well as some surprises for our sweet Jedi.

God bless you ALL.

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Monday, September 2, 2013

A Good, Hard Look

Happy Labor Day!

We have been home for two nights now, and they have come with some unexpected emotion. I honestly slept all day on Sunday, while Renn adjusted back to walking around. He was surprisingly weak on his feet. That tore us a new one, for sure. But Eli was thrilled to have his brother back, and the hubs felt whole once again.

I wanted to share what, exactly, we see when we look at our blessing... I'm going to warn you now, because if you have a weak stomach, you might want to just stop here. I promise it's not unbearable, or gross, but I want to warn you nonetheless.

So, while we were in the hospital, Renn's head remained covered up. I had no idea what his head actually looked like, but I swear, my imagination really ran away with it. I was picturing HOLES. Holes with wires. However when Renn's turban dressing lifted up on Wednesday night, I was in for a bit of shock. And relief.

Looks straight out of Star Trek, doesn't it? It was so strange to see, but not at all frightening. Instantly I figured out how it all worked, and I wasn't so bothered, worried, or afraid. Although I had only seen one of four, for some reason I slept a little bit easier that night.

 Now, Dr. Incredi-Surgeon obviously had to reopen those incisions and remove the wires. We were given permission to take off his bandages when we got home, but we could not wash his hair until Monday night (tonight). The problem was, he also had an insurmountable layer of the most solid glue on the back of his hair, due to them adding two external electrodes there for his VEEG. But, we took the bandages off, and what we saw was a bit more difficult to endure.

Of course we were curious as to how we were going to handle school after the holiday... Renn said he was fine with the way his hair looked and he was insistent that we not cut it. While I thought that was absurd, I agreed to let him make his own choice.

We had a serious case of the "four-wallers", as you can imagine, by the time this morning came around. Renn was shockingly clingy and mentioned several times that he was scared of going to school tomorrow. He followed me all over the house... My brave Jedi. How do you console your child when you are equally afraid of what's to come?

The hubs decided we would go out to breakfast. Upon getting ready, I looked at Renn's head and saw how terribly difficult it was going to be to get that glue out of his hair tonight. He is the second most tender-headed person I have ever met- the first being his daddy. So I made a tough, last minute decision... I was going to shave his head.

It was the only way to get that glue out. It broke my heart to see him cry. I felt like I was robbing him of his identity. And though I knew it would grow back soon, watching him cower and yell, "Why can't you just leave me the way I am?! Don't you like me for me?! I just want to be me!" broke me. We'd been through it, and I'd truly underestimated my own emotions, and completely ignored his.

I felt like the worst mother. Once again, all the feelings of uncertainty and the WHAT AM I DOING TO HIM?? questions came back, piercing my heart. After the torturous act was over, I put him in the tub, gently washing his glue-ridden hair off his weak body. Would it have been that bad letting him keep his hair? Was it my vanity, my fear of the other kids at school, or the fact that I knew the tidiest task of removing that glue would be the most difficult ending to this day, that caused me to shave his head? At that moment, I thought I'd broken Renn's delicate trust, forever.

All in all, his smile eventually returned. He looked like Daddy, now! We let him eat breakfast at the restaurant without wrapping his wounds up. We had so many stares... Stares of sympathy, worry, and fear for our Jedi. I'm not going to lie, I walked around ready to punch anyone who even stared a millisecond too long. I was raging, and ready. But to my dismay, no one even looked sideways. Praise Jesus.

We wrapped Renn's head, and took the boys to the zoo. It was there where I saw a sign from God... One that reminded me that I was not alone in my worry or fear for Renn. It was a blessing... Though he's only four, Eli is an old soul and a sweet, sweet caring brother. I captured this, when they had no clue I was even looking. We ended up having a great day at the zoo... Phones, minds, and worries went silent. It was heaven.

Tomorrow, Renn goes back to school. I plan on talking to the kids in his class about Epilepsy and what it all means. I want to show the kids that there is nothing to be afraid of and most of all, nothing to make fun of. Hopefully Renn won't be afraid.

We are now waiting for the phone to ring regarding Renn's next surgery... But I got a good, hard look at many things this past weekend. We are not yet prepared for the next step, but we are obviously learning how to embrace it, along with cherish each day in the month that we have until it comes.

We hope you guys have had a marvelous three-day weekend! Here's to fall... Our favorite time of the year.
Why are you in despair, my soul? Why are you disturbed within me? Hope in God! For I shall still praise him for the saving help of his presence.
Psalm 42:5