It’s that time of year..
Edited To Add: The IEP has been rescheduled due to Emma’s Teacher having strep throat…
The migraine inducing IEP meeting for Emma. Although I am super confident in her school and she has an amazingly awesome teacher and nurses; none of things change the fact that she is such a unique child with unique needs which in turn equals a whole bunch of unique questions from everyone involved in her care.
Add to the fact that she has been in ICU 3 times in the last 4 months…
Total. Freakout. Mode.
Add to the fact that she is on 15 medications through out the day….
Eye. Bulging. Looks.
Add to the fact that she has transplant related coronary artery disease and could have a fatal arrhythmia at any given moment ….
Audible. Gasp.
Add to the fact that they must have a Heart Defibrillator in or near her classroom….
Pass. Out.
Add to the fact that she is autistic….
“Oh, we can handle that!”… sigh of relief..
Try telling them all of those things, yet asking them to treat her like any normal adorable 7 year old little girl… who just has a few minor major “issues”.
Imagine the looks. The expressions on their faces.
Imagine my migraine when it is all said and done.
So, I am loading up on coffee.
Got my handy dandy Red Binder (complete with page dividers).
Got my handy dandy Pink highlighter.
and a flask of liquor in my purse…
JUST KIDDING 
Now don’t get me wrong.. I have the utmost of confidence in her school, nurses, and over all staffing. It is my job to make sure they find that same confidence in themselves. On paper, My daughter looks really scary… REALLY. SCARY.
But there is more to her than her diagnosis’. If they can balance the two (even a little), I will have done my job as her advocate and her mother.
She is a little package of dynamite…She looks frail and weak, but her strength and combativeness have kept her alive 7 years longer than the doctors originally thought. She will bite, kick, scream, scratch and tell you to shut up if she doesn’t get her way (hey, atleast you know we dont swear in our house..she would repeat it!). Her teachers know that, they have her every day.
Its the ones from the School Board.
Remember the “on paper” part. They don’t know Emma as a little girl who loves to swing and go to P.E. They just know her from the diagnosis’, and trust me… on paper, she ain’t pretty.
But I have faith that God will protect her, that she is in His hands and that NOTHING, absolutely nothing can remove her from them. It is the safest place for her, other than my arms.
I found this poem this morning, and it really sums up how I feel about my daughter and her caregivers: Blessed Are Those Blessed are those who stop and listen to my chatter. You may not understand me; but I love when people talk to me, for I long for companionship, too.
Blessed are those who take my hand and walk with me when the path is rough, for I easily stumble and grow weary. But thank you, too, for letting me walk alone when the path is smooth, for I must learn independence.
Blessed are those who take the time to tell me about special happenings, for unless you make special effort to inform me, I remain ignorant.
Blessed are those who wait for me. I may be slow, but I appreciate your patience.
Blessed are those who are not ashamed to be seen in public with me, for I did not choose to be born thus. It could have been you as well.
Blessed are those who do not pity me, for I don’t want pity. All I want is understanding and respect for what I have learned as well.
Blessed are those who notice my accomplishments, small as they may seem to you. I must work long and hard to learn many of the things you take for granted.
Blessed are those who include me in their games, even though I may not understand the rules, I still like to be included in your activities.
Blessed are those who think of me as a person who loves, and hurts, and feels joy and pain just like you do, for in that respect I am normal.
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Student of the Month Photos
Thank you all for your prayers, I went to the emergency clinic on Saturday and found out that I have a nasty case of bronchitis, which has set my vertigo in a tail spin…You should hear me cough, I sound like a walrus! It reminded me of this time, last year, when the floor felt like it was falling out from beneath me. Which also reminded me that a year ago next Saturday will be one year since my tumor removal at Mayo. Which in turn, reminded me to be so very thankful for the last year and all that it has brought me, good and bad.
On to Miss Emma. Thursday she received her student of the month award at her school:
So very proud!
Mrs. Laura, Emma’s Autism teacher:
Today is my sons 8th birthday. (Happy birthday Elijah! I love you soo very much!) We are going to my parents house to eat hamburgers and hot dogs, and open his presents.
Then home by 9pm to take chemo…
I love my beautiful life.
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