Wednesday, June 18, 2008

WW: Living or Waiting?



No cross-dressing cows this week, sorry. I don't know if I am harder to deal with when I am being silly or when I am being serious. But, I'm not feeling the whole silly thing today. 

I love this picture and I hate this picture. I love this picture because it reminds me of how healthy, strong and athletic my son is. I look at it, and I see the swimmer, fighter and competitor in him. But I also hate this picture because it's just so misleading. My son, barring a really, really huge miracle, will die before me. I will have to watch him suffer, unable to do a whole heck of a lot about it. As if that wasn't bad enough, the diagnosis doesn't come with a timeline, so all I do is wait.

Oh, most of the time, I stay in a nicely wrapped little cocoon of denial. Look at the picture... It's easy. There's no way he could really be THAT sick. And maybe he's not. But there's just no way to tell. And to confuse things more, just because he's healthy today, doesn't guarantee his health tomorrow. Believe me, the doctor reminds me of that constantly.

But sometimes, like when he has a cold, I just get this wave of panic and sadness that is just so heavy. The poor kid can't catch a cold without the rest of the family freaking out. And that's because maybe it's not just a cold. Or even if it IS a cold, it could be damaging his precious lungs. So I tuck him into bed and go to bed, myself. Except I can't sleep. I lie there in the darkness, listening to him cough. And even in that darkness, I turn my head to see my husband, wide awake, jaw clenched, listening to him cough, too. But we don't talk about it. Ever. Going there would just make it so... real.

So I stay on top of him. Watching every pill he takes, making sure he doesn't miss a treatment... EVER. I text him when he's away to make sure he didn't forget to take his medicine. I am a complete maniac, unwilling to relinquish control. But the problem is, he's growing up. And even though his disease limits his future, he has big plans. Which is good, and how it should be. But 3 years from now, when he is away at college, will he remember to take his medicine? Will he do his breathing treatments? Will he get the exercise he needs to stay healthy? Or will it be the beginning of the end?

Oh, all this morbidity is just so unlike me and such a buzz-kill. It's much more fun to stay hopeful and know God will take care of us...somehow. I would rather laugh and think about all the thousands of ways this same son of mine drives me nuts. He's a special kid, living a special life. And that's exactly what I have to remember... he's living.

Thanks to Angie for letting me be a little (ok, a LOT) self-indulgent. Back to silly next week.



37 comments:

Kristina P. said...

Deb, I am so sorry. I had no idea. He seems like and extraordinary young man. I'm sure he will do great things.

Beadiful Things said...

I don't pray much, but I do pray for a happy ending here.

P.S. You're lovely to take: silly AND serious.

Tony said...

Deb,

Sometimes it gets serious, and that is important. I am soo sorry to learn of this. He is absolutely added to our prayer list along with all your family. I wish for him strength and longevity. All my best. God Bless.

Joy said...

Seeing I have not been around for all that long I am not sure of the full story behind this.

But be happy with those moments that he does irritate you, enjoy those moments. I have no idea what feelings you are going thru no mom or dad should ever have those worries about their child. Take it one day at a time and enjoy all those little things.

That is an awesome picture of him, swimming is big here my hubs and his sis were both big time swimmers (she went to college on a swim scholarship). I jokingly say my kids better be good swimmers or they may be kicked out of the family, SIL already has both of her kids swimming!

amelia bedelia said...

My gosh, Deb, I can't imagine. Pray, Pray, Pray.

Eudea-Mamia said...

Though the genetic wheel of fortune was different for us, I somehow find us linked together. That damn uncontrolable, double recessive, roll of the DNA dice.

Seriously, how many CTS-Vs are there in this country?

Silly, serious, sad, sobbing, sarcastic - bring it on babe.

Em

jenn3 said...

I'm so sorry. I'm saying a prayer for you now.

And it's your blog, so I'll say what others have said to me... If you want to be serious, be serious. If you want to be silly, be silly. People will keep reading.

Aunty Em said...

I stumbled across you around the blog.

My prayers are with you. He definitely DOES have a special purpose.

Denise said...

Deb, you can serious or silly anytime you want. And I will be here for you, with prayers and hopeful words. Im so sorry to hear that your son is sick, I will definetly keep him and you in my prayers.

Renée aka Mekhismom said...

Deb. What a beautiful son you have. I will keep you family in my thoughts and prayers.

DysFUNctional Mom said...

I can't even imagine how that feels. My heart goes out to you.
xoxo

Liz said...

What a beautiful picture of you beautiful boy!!

Tiaras and Tantrums said...

. . . I don't know the history of your son . . . but my prayers are with your family!

The Mommy said...

Aww, Deb. I love silly moments, but I feel like we get to know people better through the serious ones. I honestly don't know what to say. All I can say is that tomorrow is promised to no one, healthy or sick, with genetic disorders or not. Live for the day and love everyone as much as you can while you can. I have only a glimpse of how hard it can be (my sons blood/immune disorder) when a cold can be more than a cold. All I can say to that is pray and love. ~hugs~

Brandy said...

This is such a touching post I cant imagine how scary somedays must be for you. I will pray that he has plenty of time to accomplish those big dreams of his.

Wendyburd1 said...

Deb, of course you get to be self-indulgent, it is YOUR blog. I am so sorry you are feeling like you are in the Pit of Despair. I went back looking for that first post where I read that he was sick, and couldn't be in the Army. I looked up DeltaF508, it deals with a gene in cystic fibrosis right?

*HUGS*

Jen said...

Sometimes we just can't be silly all the time. I am sorry for the pain and suffering that you and your family are going through. I hope it gets better, some how.

angie said...

Deb,
I think this is one of the most touching, amazing, heartfelt posts I've EVER read. I have tears in my eyes......and I think I need to just sit here and take in what I've just read. I didn't know your son was ill. Have you posted about it before? I don't think you could have posted a better picture to illustrate your feelings. Sending you BIG hugs for touching ALL of us, I know, today.

stefanie said...

oh, Deb. There you are...I've been missing this side of you. Silly is fun and necessary, but this depth is why I first returned.

Sandra Foyt said...

Write what you have to write, the dark and the light, we're listening. Wishing you strength during the hard times, and unmitigated joy during the good times.

Jay @halftime lessons said...

Well, sweet girl, you already know my thoughts on this, but thats not gonna stop me from opening my mouth again this morning.

First off, beautiful post, you know, I hope, that I am your biggest fan, but you outdid yourself on this one.

And one simple reminder...and I hope you dont ever take my comments as belittling your devastating situation. You and I are one car wreck or aneurysm from shuffling off this mortal coil way too early ourselves. It happens all the time.

From what you tell me, he is a beautiful kid, with hopes, and dreams, and talents...encourage every one, and celebrate every one. Keep reinforcing the idea of living not every day,but every MOMENT to its fullest. Whether he goes first, or you go first, you both can only rely on having "done it right" and lived well.

Im not gonna give you the deer-in-the-headlights response here, you know that...hope you know what I mean when I simply say,

I loved your post today.

Straight to Your Hart said...

So good to hear from you last night. My item did not sell. That's okay though..an early Christmas gift ready.

May the Lord bring comfort to your mind and heart when bearing the load of waiting and LiVing!!

Jyl @ MommyGossip said...

I love your attitude, Deb. Life can be long or short for all of us. The best thing to do is live it to the fullest while we are alive, right? Some parents would limit their kids, but you are helping your child make memories and enjoy life. Hats off to you! And, so sorry for what you are going through. Can't imagine it is easy!

BTW: Thanks so much for your kind donation last night. We have already raised more than $1200 for Feeding America. You rock! Go #gno!

Lorina said...

I love the picture, but your post has made me cry. I am very sorry. Keep Praying.. and I will for you too.

tabbi said...

Just a lurker here, sorry to intrude. I'm sorry about your son, and given what treatments you were talking about, it sounds like CF, but I'm just guessing. On a happy note, one of my closest friends has CF and he recently turned 30, is happily married and a successful business owner. Hang in there.

Michelle said...

Your post about your son really touched my heart.

That is an incredible picture of him.

Girl Friday said...

I applaud your bravery....living with uncertainty is never, never easy.

mommaof4wife2r said...

i am first of all, blessed but your post...remembering that my kiddos are always on loan. second, i have a best friend whose daughter has a terminal illness and i freak out everytime someone in this house sneezes in fear that she may get it (all the way on teh other side of town). i can't imagine the struggle and balance that you must face every day. i instantly thought of one of the verses that keeps me going when i worry (and my worry is nothing like your struggle...i can't begin to understand that). but hopefully this will bring you peace: matthew 6:25-34...and i call it first things first to remind myself. may you feel god's peace and be surrounded with his grace this day and always!

matthew 6:25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life?

28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Susie said...

You are right...he doesn't look sick at all. I wish your family would not have to go through this and that you enjoy this healthy time with him so you can make it through the harder times.

Kelli @ Gohn Crazy said...

*hugs* I cannot even imagine what that is like for you as a mother. But I do believe that when on his own he will continue doing what he knows he must. If he has big plans I'm sure he knows what he also needs to do to make those big plans reality - including taking care of himself.

Ryanne said...

I can see why the picture has dual meaning for you. It is good that you satay focused on the positive and keep him on track. Love him and enjoy every minute you have. Thank you for sharing all of that with us, sometimes you have to let it out or you might burst.

Jenni Jiggety said...

That was a beautiful post...

I don't know the details...but you're all in my thoughts.

Rick said...

Just surfing through and happened to catch your blog. I've very sorry to read what little bit of information I can get from this post.

In the truest sense, there is nothing in life that we can control.

All we can have is someone to place our hopes in.

It may not seem like it at times, but HE is in control.

My prayers are with you at this moment.

avtcoach said...

Thanks for visiting my place today. As you know I pray and would be glad to keep your family in prayer. You have an amazing ability to put into writing your thoughts and this was a great post. As a friend told me today, you have no apologies for posting what you want and what feels right today. Today you needed to post this. I am glad you did. This is only my second time at your site and I am glad to catch this post. From reading the comments you have already received you have alot of support. Blessings to you and your family!

Brenda Jean said...

Oh Deb, I wish I could give you some wonderful words of wisdom, but I can't. I will say that I am so glad he has parents as loving and wonderful as you guys, and I know he will learn from you what he needs to do. Serious it okay by the way. You can't keep it all bottled up, and blogging about it is a good thing:)

Lindsay said...

You're an amazing woman, Deb. Very few people can maintain such a wonderful sense of humor when faced with such obstacles. I probably couldn't. Your family is going to be in my prayers.

Harlene said...

Praying for your family, hugging my kids a little tighter today.

Can you feel our strength on your behalf?