Friday, August 7, 2009

The Worst Day of Your Life

You'd think the day you find out your little five month old baby has a genetic disease that is the equivalent of a death sentence, would be the absolute worst day of your life. Well, you'd be wrong. What actually happens is, you end up feeling blessed because of a salty kiss and a tiny bit of knowledge from way back whenever. You know you should feel sad, but you are thrilled to be given a precious head start. Months, maybe years, to protect your little baby, and your own heart. Time is on your side.

And, quicker than even seems possible, that healthy baby is a healthy teen. A rebellious, funny, intense, larger than life, healthy teen. Everything is on his side. Life is his for the taking. His future, so wide open and brilliant. Congratulations to the boy who is such a brave miracle, and his mom, who must be so brave and strong, herself.

Until the day he coughs up blood. And everything changes.

Suddenly, reality... real reality, is in your face, shaking you out of that blissful cocoon of denial that had been keeping you so safe and warm for all those years. Sure, the doctor has a plausible explanation, but come on... who coughs up blood? Healthy people? No. If your other child, your "normal" child, coughed up blood, you would be a mess. And here is your big boy, with a lung disease, coughing up blood. All you're feeling is a dulled, depressing nausea. And sadness.

So very suddenly, you realize you really aren't very brave at all. Like not at all. It's easy to keep a smile on your face and stay positive when you haven't had to spend one fucking minute actually worrying, other than in theory, about your child's health or future. Sure, it sounds awfully impressive... "Yes, my child has cf and we will probably out-live him." You can get the words out without a tear, and you seem incredibly fearless. But you really aren't. You are nothing, because what no one knows, is that up until today, you didn't actually believe your own words. Your denial was so ingrained into your actual being, that the words would come out flawlessly, never making contact with your heart, much less your soul. Airtight. Your life support.

And now it's gone.

34 comments:

Harlene said...

I'm sorry. Sorry it's happening, sorry I can't take it away. or even make it better.

I miss you too!

Kacey R. said...

I don't even know what to say, except that I am thinking of you and sending prayers your way. {{HUGS}} Kacey R.

Susan B. at warmchocmilk said...

I'm sorry you have to go thru this....your post is real and raw..you are brave.

Ronnie "Sickboy" Sharpe said...

Deb,

I know you are facing reality and I understand the panic you are feeling...but hopefully I can calm your spirit a bit and let you know that most "normal" CFers I know DO cough up blood from time to time. I've been hacking up the stuff sense I was 12. I've lived a GREAT 17 years since and I plan on living another 17+++ years moving forward.

I understand that it's scary, but hemoptysis doesn't change the game. He's still the same kid with the same disease and probably the same lung function. Use this as opportunity to remind him how important it is to take care of himself NOW and not wait until he doesn't feel good. The more he does now for his health the less he'll be forced to do later.

I hope my comments don't come off as insensitive, cause believe me, I've been there and am VERY empathic, and I've also LIVED and LIVED WELL since coughing up blood.

Ronnie

Kristina P. said...

I don't know if there's anything I can say to make anything feel better, but I adore and care about you and your family. I am praying for you, if that's OK.

J9 said...

deb,
I had no clue that your boy has cf. I'm so sorry he's coughing up blood, and I'm sure you are frazzled to a raw nerve, but hang in there. Oh, and I had an incling a couple of post ago when you were talking about him not doing PT for a week on break, and it made me think of my friend who has twin girl teens with cf. They are following the Warped Tour and one of the twins is making a documentary, and one of the musicians has cf, and she is blogging about it. e-mail me back, and I'll send you the link.

Pseudonymous High School Teacher said...

My breath stopped as I read this. A very brave and poignant post. My prayers go out to you.

Under the Influence said...

Oh gosh - I will be sending strength to you and healing thoughts to your son!

♥georgie♥ said...

I dont know what to say...i'm sorry, i love you, i wish i could make it all better, i wish i wish...

(((HUGS))) to you will be keeping you all in my thoughts and prayers

Sera said...

Oh my God, Deb. I just don't even know what to say. My stomach and heart are just sinking for you - I cannot even FATHOM it.

Beadiful Things said...

Debbie. I wish I could give you a big hug right now because I have no words.

Wendyburd1 said...

Deb, I am so sorry. I am not going to give you words that will meaning little to you, because you will know they are just that, words. Instead, know I am here for you if you need it, and that your son is in my prayers!

stefanie said...

oh, deb. i'm here, praying.

Beth said...

Oh, Deb. I am so sorry. Facing the reality of a situation is different for every person. You and your family are in my thoughts and prayers.

Quirkyloon said...

I want to echo everyone's sentiments thus far and just send you a huge, caring, and hopefully comforting {hug}.

I'm sorry, Sweetie. Just very sorry.

Kim said...

OH my darling Deb, I had no idea. I am so sorry. What is cf? I wish I could make it all better, no parent should ever outlive their child. You are in my thoughts and prayers...I love you sweet friend.

Jenn@ The Crazies said...

Thoughts and prayers for you and your famnily Deb. I am hoping all will be OK for now... and you are too brave and strong even if you dont feel it right now!

JennyMac said...

Oh....wow. There are no words. You wrote a very touching post. My heart goes out to you.

Elizabeth Bradley said...

I know something about the pain of dealing with illness in a child. Know this: we make it through somehow. I don't know how, but we do. Bless your heart. And I pray your son's problem passes.

Tony@ That One Paticular Harbor said...

Deb, You guys are always in our prayers. We will ramp up our efforts. I wish I could take this from Mr. Moody. Stay strong, stay positive. Livestrong. God Bless.

Em said...

I've sat here for a while wondering what to type. Knowing it doesn't change a damn thing.

Moody is in my prayers. You too my dearest Deb.

Amy said...

Arg. Deb, I'm so sad to read your latest post. I'm gonna choose to cling to Ronnie's comments because he offers some real hope.

Incredible telling of your story. Wow.

Lots of prayers comin' your way my friend.

dana said...

Did this happen while he was away or at home? Could be away have caused a problem that you had no idea of? Like an allergy to something in the air? I know. I know. It's serious, but I'm just trying to think of something that could be an innocent alarm. Don't feel guilty for having resentment for what this heinous disease has done.

Sassy Britches said...

And you know what? It's okay not to be brave sometimes. That makes you real.

Strength and prayers coming to you and your family.

Annie said...

Hugs, prayers, and strength coming your way........

Heather of the EO said...

Deb, it makes perfect sense that your life has been littered with a bit of denial, an inability to believe your own words as you talk about your boy.

I wish there were something I could do to take this from your plate. I really do.

Ginger said...

Darn, that would be so scary, as a mom seeing your child doing that. And it probably scared the crap out of moody teen too.
Hang in there, Deb.

Amy@Bitchin'WivesClub said...

This is such a sad, strong, scared post... all I can think (having read your last post and then going back a day to read this one) is that I just want to howl, "Oh, the Humanity!!!!" My heart goes out to you and yours and having to live with that terrible little seed of damnable knowledge. I hope Moody is feeling better and that this episode is nothing more than a reminder to value every moment and life life to that absolute fullest. xoxo

Bee and Rose said...

Deb, I'm here for you...anything you need...

angie said...

Sending you a huge cyber hug.

deb said...

wow.
and you write it all with the dignity that cares for everyone .
denial is where I would be
to protect your heart, and so you can be a mother who inspires
I am so touched by reading through your posts.

Loren Christie said...

Deb, there are no words. As a mom, I can feel what you are saying. You are much saner in this nightmare than I have been in just trivial situations. I'm praying for your whole family. Hugs.

mama-face said...

I can't add anything to your other comments; only that your strength shows through your writing and I know your boy has the best possible support in you.

I am way behind in my blog reading...so my comment may seem dated and belated.

Still though, my heart goes out to you.

tdraxler said...

I stumbled upon your blog via...hmmmm Ronnie, maybe? I'm mom to a 4 year old with CF. I just wanted to comment that this post hit me...hard. I'm blessed to still be in the "denial" that you talk about. We've not yet been shaken out of our comfort zone, and I count my blessings fo that everyday. I keep wondering, waiting, "when will the other shoe drop?" When will life as we know it REALLY change. When will I really be tested. Thanks for writing this. It's good to know I'm not alone.