Monday, November 29, 2010

vomit... and other stuff


I'm all tucked into Abby's bed beside her tonight as I get to see her food for the second time today.  She does this at least once a month, but it still puzzles me.  I find myself thankful for Molly who is helping tonight.  She takes at least a dozen trips up and down the steps to clean up after each episode and puts the sanitize cycle on so the washer will be ready for the next round.  I'm grateful that she will vomit without fighting like she used to.  I used to have to hold her head down and put something in her mouth to keep it open or she would shut her mouth and swallow which only prolonged the whole thing as her body is determined to get rid of whatever it is. 


This is just comic relief as she got into her diaper and "painted
her bed.  I called Andy to help and when I asked him what we
should do he calmly said, "Call 9-1-1."   
I hate that she feels so bad, yet wonder if there was some way of letting the therapists who work with her see her life.
  • Could they see how much she already has to go through? 
  • Do they know of the countless nights we've spent like this one tonight?
  • The endless doctor appointments
  • Her love of school, yet the fact that her body cannot keep up so she must nap each day there
  • The chaos in her head that drives her crazy at times
  • The weak body she's trapped in that catches every sickness
  • Her frail legs that barely keep her balanced and the arms that often fail to catch her when she falls
  • The glasses that help her see, but constantly rub on her nose and irritate her ears
  • The braces that make walking possible, yet the deformed feet that rub them raw or leave purple bruises
  • The toes that grab so hard for the floor beneath her for stability that they now are curling under and blistering from the effort
  • The nightly breathing treatments to keep her airways open
  • The host of medications we we've paired down to... 16 pills a day
  • The wheelchair that is breaking beneath her because we haven't the energy to just find a new one
  • The special handmade boots we researched and found so she could walk outside in the winter
  • Her special large onesie shirts we order from Europe
  • The only bike she can ride that costs as much as a small car and is only made in Canada
  • The humidifier installed on our furnace so it's not too dry; otherwise,  her lips and fingers would stay cracked open all winter
  • The ordering and picking up of  nine different meds while coordinating with insurance and the changes that occur there
  • Fielding calls from various medical facilities as items are billed incorrectly
  • Finding clothing that isn't too tight, yet tight enough to keep her out of it
  • Shoes that fit over her braces without being too tight
  • travelling to see specialists
  • watching intently every time she swims so we can catch her and bring her to the bathroom before she contaminates the entire pool
  • singing to her on the toilet daily for five years as we continue to try to get her to potty train
  • Moving her toys out of the toyroom because the floor is too cold in the winter only to upset her intensely
  • Trying to braid, twist or secure her hair to mask the spots she's rubbed the hair off of her head
  • buying smartwool socks in bulk trying to keep her purple feet warmer
  • rubbing her hands and feet to desensitize them enough so we can trim her nails
  • Constantly modifying her environment to keep her safe
  • The special diet that limits all intake

finding people to care for her who love her like we do

How can they know Abby and the life she leads?  How could anyone know all this and still try to make her world more difficult when they could, if they wanted, make it easier?  Where is the compassion?  She struggles so much in almost every aspect of her life, why take away the one thing that makes her happy? 

This Mom is tired and weary.  I wonder if the tears will dry up one day?  How much can one cry?  How much pain can one take?  If there wasn't the joy she brings to those around her, and the lessons we learn through her struggles I'd lack the energy to keep battling.  I guess I've missed the greater picture of this being a war.  It's a war for her life and others like her.  It's a battle of ideologies.  It's the value of human life.  It's parental rights.  Welcome to the war... if you're willing to fight with us.  This is what is taking place in our world today.  Open your eyes and fight.  See those around you.  Don't close your eyes.  Love your neighbor enough to share their pains.  Not just mine.  I don't write this for just for me (us), but for those who cannot share their stories. 

I fight on my knees once again tonight:
Dear God,

I pray for the hearts of the people you've placed in our world.  I pray you use us to reach them.  I pray for the scales to be removed from their eyes, so they see your love in us.  May we love these people in a way that screams, "This ain't normal!"  May they be drawn to you as they see you alive... in a little handicapped girl hobbling down the hallway, "singing" during the prayer, or clapping for no reason at all.  May I be your love to them.  As they turn up the heat on this vulnerable angel you've entrusted to my care, may they supernaturally change their hearts and minds in never been done before ways.  That we can pave the path for kids like Abby to simply live in our world.  Being a part of every day activities without being the center of attention because her "abnormalites" are "normal".  She's no longer "different" but simply Abby.  My heart, Lord, is for people to see that you don't make mistakes.  Abby is exactly who you created her to be.  She's perfect.  She's perfection.  She's a reflection of you.  You delight in her as her salvation has already been provided for.  May they appreciate the person she is and find ways to help her become what you want her to be.  Lord, I have no idea what her future holds, but I know she's part of your perfect plan.  Help us endure, persevere and not become bitter and angry.  I confess my anger tonight as I stop once again to collect her vomit as her body heaves and then collapses once again unto her pillow.  I wish I could take away her pain.  I wish her purpose didn't come at such high a price. 


Thank you that I can lay my burdens once again at your feet in a pool of tears.  I'm broken.  My mind searches for previous lessons learned during these times, so we can move on; yet I know it won't be that easy or it wouldn't stick to my bones.  It wouldn't affect me to my core unless I feel it deeply.  It's the pain that spills out empathy when I have the opportunity to help someone else who is going through what I have.  It's the nighttime vigils and the pit in my stomach that grows as I sit in the hospital waiting room.  It's the remembrance of  our first IEP meetings and the sobs that followed as I sat alone in my car.  It's the vile crawling up my throat as we sit in another doctor's office with a new diagnosis.  It's the constant prayer chain I live to link my day together as I wonder why there can't at least be a rough path to follow.  Yes, Lord, I remember.  My answer is still... "Yes, Lord... to anything you ask of me... anytime... anywhere."

It's at those times that I realize my feet haven't hit the ground because you're carrying me through... once again.  Thank you for not expecting me to walk.  I love you

me



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