Saturday, September 18, 2010

You have to take the best
from whatever the situation is
and go on.
~Jimmy Buffett

Friday, September 17, 2010

Silly Girl

Deborah found this hat at Target today and wore it the whole time we were there, and made silly little faces as she looked at other shoppers. It's a good thing she's so dang cute!
Want to know what my all time favorite movie is? It's The Gnome Mobile.

Wanna know why?

Well, it's cause when I was a kid, I wanted to be a gnome. No kidding. I wanted to be a real live gnome. I thought it would be so cool! I could imagine myself sitting in school, and in church, and riding a puppy dog, and sitting on top of my grandpa's cap, or on my dad's shoulder. Yea. I really thought it'd be pretty great.

So even still when I see The Gnome Mobile (and yes, I have watched it again in the last year, and yes, I joyfully sing along with the songs) I still think it'd be pretty cool to be a gnome. But, anyway ... all this just to tell you that the other day I was on Facebook and I saw this picture of my cousins. I immediately loved it! It not only makes me happy because it's fun to see my cousins, but it also makes me happy because the man in the picture reminds me of one of the characters in The Gnome Mobile, which quite frankly might be one of the highest compliments I could pay to anyone.

"In the gnome mobile, in the gnome mobile. Rolling along in the gnome mobile. Oh, what a wonderful way to feel! Rolling along in the gnome mobile!"

Thursday, September 16, 2010

Jacob's First Day of School

Have you heard the news? After much consideration and prayer, we made the decision to have Jacob attended public school. In case you don't know, I've always home schooled (other than 1 semester of Kindergarten). We decided to do this because I've been just a little busy lately. Jacob has always wanted to attend school and we know that he will do well there. So, we decided that it made sense to let him go.

I don't know who was more nervous, me or Jacob. Oh, wait. Yes, I do. Me! Definitely, Me! I don't think 5 minutes went by from the time I left the school until I saw him get off the bus that I didn't think about him. I would have liked to have attended his classes with him for his first day, but I suppose that might have been a bit awkward for him.

I was quite happy to hear that things went well.

Wednesday, September 15, 2010

I am so tired today. I feel like I can barely keep my eyes open.

Tuesday, September 14, 2010

There are worse things than Cancer.

A few weeks ago I was talking with a good friend of mine. A wise friend of mine. She said, "There are worse things than Cancer." I've thought a lot about her statement.

I could quickly agree that many things are worse than my cancer. But then I thought of a sweet friend whose husband is battling cancer. I'm not sure that many things are worse than his cancer. And, I thought of another friend whose husband is battling cancer. Oh, what a tough battle. I started to think about other trials that my friends, family or I have faced.

Having a child with a terminal illness.
Loss of a home to a fire.
Being disowned by your family.
Being betrayed by a friend.
Being betrayed by a spouse.
Years of unemployment.
Physical abuse from a spouse.
Mental illness.
Emotional abuse from a loved one.
Having a child with special needs.
Losing a spouse.
Going through an unexpected divorce.
Watching a loved one struggle with an addiction.

What makes a trial hard? What makes some things feel so much harder than other things?

As I thought about the trials in my life, I tried to identify what has made some trials seem easier to bear than others. I wondered if it was the trial itself. Is it harder to survive Cancer than to survive sexual abuse? Is it harder to have a child with special needs than to ... well, you get the idea. But, then I started to think about what helps/helped me to survive the tough things in my life. And, what makes some things really hard.

That's when it hit me: *Secrets make things hard.*

At first I wondered if there is some kind of power that a secret has that makes it really hard, but then I realized, Hello. It's that when I'm keeping it a secret, I'm carrying the burden all by myself. But, when I share it, then others help me to bear the burden. When we bear one another's burdens, our burdens are made light.

At times it is not possible to blog about our struggles. At times our struggles are so personal that we cannot share them openly with friends or family. I think those are the struggles that are worse than Cancer.

I hope you are not there.

Neurologist Update

Today we went to visit Ryan's neurologist. It was nice to see Dr. Seals, as always, and it only took about 2 hours total. :)

We went with 2 primary concerns. First, Ryan is having at least 15 to 25 seizures each day. Second, I wanted to discuss getting a suctioning machine for Ryan.

The seizures have been steadily increasing. It is a constant struggle to keep his meds at the right level, especially since Ryan is still at the age when he's constantly growing (thankfully). It's also possible that the Texas heat is contributing to the increase in seizures. Unfortunately, the air conditioners at home do not seem to be able to beat the Texas heat and humidity. We're going to keep him on the same meds, but we're going increase his Lamictal over the next couple of weeks. Then we'll have his blood levels checked at the end of the month.

{{Ugh. I really dislike that we have to check his blood levels. The poor little guy is such a hard stick. I know we must do it to take good care of him, but it's heart wrenching to hold him while they dig for veins.}}

The other issue ... Ryan's choking. Ryan chokes daily. Multiple times each day. Most days he can clear it himself. We just help him set up and encourage him. However, about once ever 3 or 4 days, he has a severe choking episode that causes him to turn dark red ... or light grey. It's a horrible thing to watch. I feel so helpless watching. So inept. I live in fear of a day when he won't be able to clear it for himself. So, today I asked the doctor to write the orders for a suctioning machine.

That's when the doctor's visit become one of those moments.

Those moments. I've had a few of those moments during the past 2 years. Moments when you realized that life isn't what you thought it would be. Moments when you have to face reality.

One such moment was when we got Ryan's wheelchair. The reality was that Ryan really needed a wheelchair.

Another moment was when I first took Ryan to church in a wheelchair. The reality was confirmed. Ryan is disabled.

Another moment was when I first saw my port in the mirror. I really had cancer.

This is another one of those moments. We need a suctioning machine. The reality is that Ryan might not be able to clear his own saliva. It sucks (haha ... didn't really intend that pun, but oh, well ... haha). It really sucks that my sweet little Ryan struggles so much.

BUT ... on the bright side, I would be fit and well read if I worked as hard at my goals as Ryan works at everything he does. He is truly an inspiration. And, while it stinks to need a suctioning machine, I am very thankful that the technology exists, and I pray that we will never need it.