The Chronic Marathon

I don't know yet if I'll have the guts to publish this one because it highlights my selfishness.

(Which I already know about myself but would like to hide from others for as long as humanly possible.)

But here goes - 

A few years ago, when Owen was around 2, I was sitting in my doctor's office, crying. This is a  doctor whom I adore and would trust with my life. I went for a physical and ended up staying for a counseling session and leaving with sleeping pills and anti-depressants.  I will NEVER forget her words to me that day, because at the time, I thought she was CRAZY! 

Our conversation went a little something like this:

Me: I don't know what's wrong with me?

Dr. Awesome: You're tired. And depressed. And your son has recently been diagnosed with a very nasty chronic illness.

Me: Yes, but I need to get over it. It's not like he has cancer or something horrible like that.

Dr. Awesome: Silence. A long sigh.

Dr. Awesome: I have to tell you something you may not want to hear. In this case, cancer might be easier.

Me: No way! You're wrong. I would much rather have this than cancer.

Dr. Awesome: Cancer has a beginning and an end. Don't get me wrong, it is hell, but it is only hell for a certain time period. There is resolution with cancer. There is either remission or death. And with modern medications, etc, there are more and more cases of remission.

Me: Silence. Long sigh. I still think I would rather have this than cancer.

Dr. Awesome: That's because it's still new. You're still in sprint mode. You're still figuring out biopsies and allergies and how to best help him. This is going to turn into a marathon. This is life long and he doesn't have a textbook case. He has a severe case. It's going to be hard. You're going to need to start meds and get more sleep. You're going to need to protect your marriage.

Me: How do you know so much?

Dr. Awesome: I have another patient with this disease. She's 21 now.

Me: Hope soaring - Really?! How's she doing?!
(In all my ignorance, I was picturing her telling me that this patient is thriving and living a totally normal life now.)

Dr. Awesome: Silence. She's struggling and underweight.

Me: Oh. Okay.

Dr. Awesome: It's a nasty disease. You HAVE to take care of yourself so you can take care of him.

And now for the part where I'm 100% completely and totally a selfish douchebag:

I think I get what she meant now.

Sometimes, and I can't believe I'm admitting this, I get sad when I hear the struggles other families go through. But then they get through it and then it's over for them and we're still here. And sometimes that makes me jealous. I know that makes me HORRIBLE, but unfortunately, it's true.  I get jealous because we're still struggling. Still fighting every meal. Still dealing with a G-tube. Still paying for formula. Still taking strong medications with yucky side effects. Still fighting HARD to protect our marriage. Still feeling guilty about the attention it takes away from the other two kids. And that's not even throwing the autism on top of it all. The cherry on the top.

And honestly? When we went to UNC last month and learned about more weight loss even WITH the g-tube, I hit a wall that I can't seem to climb over. Nope. That can't be right. We put a freaking hole in our kid's stomach so he could THRIVE....not lose even more weight. I wanted to leave that appointment feeling confident that we had done the right thing, not hearing about absorption issues and even more possible problems.

So basically what I'm saying in all this is the following:
I'm glad my kid does not have cancer.
So glad.

But I'm tired of what he does have.
So tired.

I'm tired of people not understanding it.
I'm tired of people thinking he looks normal so there can't be anything wrong, right?
I'm tired of reading every single label on every single food item and thinking something is safe only to see him in pain later and learn it wasn't. I'm tired of packing food and formula and tube supplies everywhere we go.  I'm tired of feeling isolated and alone in all this. I'm tired of feeling tired. I want to climb this damn wall to the other side where there are rainbows and sunshine and unicorns, and dear Lord, please some weight gain! (On him, not me. I'm doing just fine in that area.....)

I went out with a dear friend the other night and we had a hard talk. And some tears. And she said she never knows how to help me?

And that makes me tired of my pride. Of wanting the world to think that we've so got this. That we don't need help.  And honestly, some of that is an unhealthy christian thing. A "we believe so therefore God is going to get us through this......." type of thing. And God will get us through it, but He may need to use other people to help us along the way.

So I made a phone call yesterday morning that wasn't easy. A phone call to a counseling friend to send me a list of special needs counselors or support groups, because it has been four years since diagnosis and I think it's time.

Because this sweet boy of mine?

He deserves the best.

And the best is not someone who gets jealous of other families and can't climb walls.

The best is someone who gets help and has good coping skills and realizes how blessed she is, despite what she goes through daily.

The best is someone who hears about more weight loss and leaps over that wall without resentment and anger, because NONE of this is his fault. He does not deserve resentment and anger.

Because the truth is - this kid is awesome!

And when he smiles?

He lights up a room.

 

And I would do ANYTHING for him.

 

And that includes admitting that I'm flawed.

And that I need help.

And I think that includes hitting publish when it's scary because I'm worried this small corner of the internet will judge me and think I'm weak and that I whine too much. And that's fine. You're entitled to your opinions and those opinions are probably true. But please also think that I need prayers. Because this week? I need prayers. And support. And funny comments. And names of good counselors in the RTP area if you know of any.

And maybe a stiff drink or two...... ;)