Stop topical steroid abuse!

Friday, January 25, 2013

I love you Mommy, But........

his cheeks are real red and dry

his neck and feet are the worst area right now

dear lord i need make up!

I love you mommy, But....

This is one of Kline's favorite things to say. He says it all day long.

I love you mommy, but.........

And I keep expecting something bad to follow...

I love you mommy, but...

You are the worst mom ever.

I love you mommy, but

Your breath smells real bad!

I love you mommy, but

You cuss way to much!

I love you mommy, but

Your butt looks terrible in those pants!

I love you mommy, but

You are doing everything wrong and I will be in therapy for the rest of my life, thanks!

But the but is never bad. I think this kid just doesn't get what the but is meant for! Judgement, not good enough, you could be doing better..... 

His buts are always.....

I need a pop!

I want more tv!

I need a new toy!

His but's are never as judgmental against me as I think they will be! Thank god!

So, maybe just maybe, in his 3 year old eyes I am doing ok! I am doing the best I can, and he knows it! And maybe, my breath just doesn't smell as bad as I think it does.  And my ass isn't as huge from his view.  And maybe just maybe all my cussing, tantrums and melt downs aren't as bad in his eyes...or he just understands that mom's a mess right now, we all are and that's ok!

One day the itchy bastard will be gone and one day Kline probably will say, mom I love you but....

You freaking suck and you have ruined my life.

But not today! Today he loves me and we are all doing our best!

I love you Kline, but I hate that itchy bastard and I hope very soon he leaves you alone for good!

I love you Kline, but I hate you have not had a normal life in the last year. You have not gotten to go to preschool, dance class, ski lessons, swim lessons, the park..etc.etc etc.   

I love you Kline, but I hate that I don't stay as calm when you flare as I should.

I love you Kline,but I hate that we cuss so much.

I love you Kline, but I wish I could be the best mommy in the world. 

I love you Kline, but you are the bravest little boy I have ever met.

I love you Kline, but one day you will change the world because of your suffering!

I love you Kline, but you are absolutely perfect!

I love you Kline, no if , and, or but!

So parents, please be kind to yourself....we are all just doing the best we can! Sometimes our best looks like absolute shit, but it is still our best.

I love you world, but..........

Xoxo Loren

Kline's update
~We are 11 months off topical steroids. He is getting more breaks....our days are not just bath anymore.  He was in the bath 15-18 hours a, he gets in 2 or 3 times a day when he can not tolerate the flares and only stays in 2-3 hours each time.  So, that is huge.  Also, he is sleeping better...shhhhhhh, don't want to jinx it!!  The majority of his skin looks amazing, but his trouble spots, where we used the most roids, still are giving him a hell of a time.  His feet are still bad and we never used there.  I have heard the kiddos all heal before a year off...I have a feeling Kline might ruin that statistic! I hope that this gives some of you out there hope....that although his in not healed....he's on his way, slowly but surely!  Hang in there!!!! You can do it too!!!~


  1. We love you all, PERIOD! Never stopped, never will. So happy to read this blog, you sound so much more relaxed and just like our little Lornie! Kline does look better and he still has 2 months to beat the itchy bastard. Praying everyday that IB will be gone today, not next week, or next month or the spring or the summer; but right now! We Love you! Love 'em everyday!

  2. Kline ad you are such personalities I love how you journal here! He is such a trooper and dear to my heart with all this suffering. He will surely be a name to be remembered and many children will follow Kline to healing! I am hoping for that big turn before the 12 months! xoxoxo

    1. I love you Joey! I do hope you are right about the 12 month thing....but that damn itch is so far to go!!!!

  3. My absolute favorite post of all of yours. You need to print this one out and put in his scrapbook. Nothing BUT pure love heard throughout it!
    I wish our kids would have never had red skin but at least I got to meet the likes of you!!

    Love you both!

    1. Thanks and right back at you!!!! Xoxoxoxo. I can't wait till march!!! Loren

  4. You are great, Loren. I love what you wrote. It just about made me cry, but mostly it made me laugh as most of what you say does. My kids aren't going through TSW, but I think we mothers just always feel we aren't good enough, so I could still relate. You make me smile every time I read something you've posted. What a lucky boy Kline is to have you for his mom.xoxo

    1. katherine you are so sweet! i hope your tsa journey is over very soon!!!! love you! loren xoxoxo

  5. I have to tell you, I want Kline and the other little kids healed more than I want myself healed!! Hang in there. I can't imagine how hard it is on you and family, but you are doing the best you can with an impossible situation! And one day Kline will have snow white skin all over and the only thing you'll have to worry about is avoiding a sunburn! :D