Monday, May 21, 2012


I've been wanting to blog about so much for quite some time.  I have been extremely hesitant.   For starters, I'd be exposing my emotional weaknesses, but more importantly I'd be sharing my intimate fears, concerns, and thoughts about Lauren's condition.  It's a peak inside of my ever troublesome mind, which fills me too heavily.  If you know me, you'll know that I easily am able to empathize and feel so much emotion whether it's happy or sad with many people.  One thing I do struggle with is sharing my own with others.  I'm private with my emotions.   

My biggest fear is that when I'm down or having an off day emotionally, I may come across as being too negative or complaining.  I understand that hings could be worse; in fact, this thought gets me through so much.  Lauren is amazing, and I wouldn't trade her for any perfectly healthy, physically abled child on the planet.  So, please understand that I know what a blessing and miracle my daughter is. 

I'm making a vow to myself, whether I post it here or write in a journal, for the sake f my mental clarity, and general well being I need to write these feelings.  You may not know, but I had always had good blood pressure.  The strangest thing, from the moment I received Lauren's diagnosis my blood pressure has been way too high.  Like, seriously high.  It's something that I am still struggling with.  Because of this, I feel that I can't keep those feelings hidden and locked up inside of my chest.  I have a constant nervous energy in the top of my belly.  In fact, it's become such a constant in my life that it's "normal."  So, here goes...

Last week I decided to take a little drive on a hunt for photography sessions.  As I'm grabbing Lauren to head out the door, I smell it.  It's a smell that's not too pleasant, but brings even more unpleasant feelings.  Laurens' colostomy bag has broken.  I had just changed it the night before.  So, we go downstairs to change it.  Me, thinking in my brain, "how in the world is Lauren going to handle these mishaps in school when she gets older..."  Then, I look down at her and see that she is smiling, holding onto the bottle of stoma powder.  She has such an innocence.  No clue of the harshness or realities of the things that lye ahead.  All I want to do is protect her from it (but instead I make mental notes to prepare her for it-take it on face-forward).  What she experiences is going to be her normal.  She won't know a life without these challenges or differences.  Is this good or bad?  Think about it.  What if the kid next to you passed gas, but it was loud, and they did it all the time?  What if you knew that kid next to you had a bag of poo just sitting there right under their shirt?  Would you feel distant from them?  Would you be grossed out?  If you were the boy, would you ever be able to think of her as being pretty?  If you were a peer, would you want her as your friend?

Once, I get her finished I grab my keys and look down and realize that I forgot to put her braces and shoes on.   So, off downstairs we go.  I show Lauren her socks, braces, and shoes and say their names.  By now my mind is in a deep place and I begin to think about braces.  How they are a flashing light to strangers that read, "Hey, look at my legs-something's wrong!"   Obviously, this is not what I want and may not be true, but it's where my mind travels. 

I'm sooo ok for someone to ask about the braces.  In fact, I feel better when they do.  I can see the glance, and the struggle with the braces.  Should I ask or ignore it.  Trust me, it's ok to inquire or ask.  It gives me a chance to quickly and lightly explain.  I think once that's out, they feel more comfortable, which in turn makes me feel better too.  (funny thing-at first I kept thinking, why are people always staring at me lately?  Does my hair look crazy... Then I realized, it's not me they're looking at-it's Lauren, who is strapped to me in her bjorn)

See?  I know it's not the most serious or worst thing that could happen, but these things are a constant in my life.  When I go to bed at night, I wake up with the same feelings.  It doesn't leave and I have a feeling it never will.  I will tell you this though, my life with Lauren brings me more smiles and laughs, than tears.  She has the ability to move me so far into the happiness spectrum, I wouldn't think it would be possible to feel any other emotion sometimes. 

So, in closing, I'd like to thank you for riding this journey through my words.  I know it's not the same as living it, but it's going to give me an opportunity to share Lauren's progress, setbacks, and an opportunity for me to release the anxiety and stress that I have been silently carrying for way too long.


  1. I know I can't understand what you're going through but I'd love to be someone you vent to when you need to. And please know that when it's Lauren's turn for Pre-K, I will do everything in my power to make sure she has a wonderful experience. I love you!

  2. Thank you Lyndsey. I know that we may not walk the same paths, but we both have things that weigh or hearts and minds. I appreciate the shoulder. And, I certainly hope (as an amazing teacher you are and would feel sooo lucky to have Lauren as your pupil) that you are at home raising babies by then. Again, thanks!

  3. My dearest Amanda - Having a woman like you for MY daughter is a gift I am so thankful for. And then you and Tracy brought Lauren into our lives. Lauren is a wonderful little angel that blesses everyone willing to open THEIR heart to her. I live for the next moment she laughs because it is an incredible sound that reminds me to live life to the fullest. She shares her joy often, no holds barred, every single day. So should I.

    Thank you for 'venting'. I hope you will step back in time and remember days when before 8am (and most everbody else's reality) your day went bad when the dog spilled his water on the kitchen floor, one or both of the girls couldn't find the mate to the shoes they HAD to wear to school that day, the toast burned AND you just realized you needed to get gas before you took the girls to school because you forgot to do it the night before. What inconsequential things, right? But we take them so seriously! And it is OK to get very upset about these things, right?

    So, now we have our little angel Lauren who has needs that require us to do extra chores, take extra care, take extra time to get her ready for her day; or re-do them because someone has not invented the perfect colostomy bag or glue to keep it sealed well without hurting her skin. And you cannot find a belly band small enough to protect her colostomy bag so she can enjoy swimming with her sisters - something so simple for the rest us. Of course you should 'vent'!

    I hope that you will remember that you are only upset with a SITUATION that has happened that coincidentally involves your daughter. You have that right and it does not in any way reflect on the quality of love and the caring you provide for her.

    Lauren and her sisters learn love, compassion and strength of character and integrity through you. It is just basic everyday life to them because of you.

    So, if ANYBODY out there dares to believe that you are not an incredible, loving and caring mother of three wonderful daughters - then they must live in a shallow world that would be a pity to be a part of. I doubt they have the bravery found in your pinky toe and not enough courage in their hearts to try to understand your daily reality.

    I love you so very much and the Mama Bear in me aches for your pain.

    1. Amanda, your post is so moving. I know your heart aches for Lauren's future. And your mom's response almost made me cry, it is so beautiful and sweet. Please let me know when you'll be in Nashville this summer; I'd love to see you & Lauren.

    2. Mom, this is the sweetest thing, maybe the the most profound thing you have written to me, thank you very much! Love you too!!!

      Lisa, thanks too! We are heading to Nashville June 11 (monday). Girls have a dentist appt that morning at 9:00 and Lauren has clinic that afternoon. I think it starts around 12:15. Maybe if you're in town we can get an early lunch together. I'd love to catch up and hear about your semester, progress on your book, and your mission trip... You've had a busy year!