Friday, November 29, 2013

Knit Together with Threads of Energy, Creativity, and Stubborness

Shucks, folks...this entry today is tough.  For one of the last entries during WEGO Health's National Health Blog Post Month I am told to write about three things I love about myself.  Since it's sometimes easier to talk about the things we DON'T like about ourselves, I can easily say, "I don't like my baby-fine hair, my extreme eczema on my hands and feet, nor my compulsiveness to shop."  That, however, would not be completing my assignment!  So, I will dig down deep and pull out what I find to be my three best qualities:  energy, creativity, and stubbornness.  


Considering that I typically am multi-tasking to the point that I will run the water into a pitcher to get water for coffee, while simultaneously throwing out the old coffee grounds, filling the new filter with new coffee grounds, and then pulling out of the refrigerator all the items Evie will need in her lunch; I KNOW that I have a lot of energy.  My to-do lists help me stay focused and enable me to accomplish a lot during the day.  

I also have made a commitment to staying on top of many routine duties that, when put off, can create a sense of anxiety and frustration in me.  For example, I have started to do one load of laundry a day; and that helps me not feel bogged down with three baskets of laundry piling up each week.  Instead, I throw one load in the washer in the morning, switch that to the dryer before I leave for work, fold it when I get home from work before making dinner, and throw another load in the next morning to start the cycle all over again.

Along with my energy to complete household duties, people will ask me when I find the time to workout.  That is also something I need to do daily.  It's not really for vanity sake either.  I have been a big "workout" girl since 2001 when I lost 35 lbs on Jenny Craig.  I've only stopped working out at one point since then and that was when Evie was on chemotherapy.  But even then, my doctor encouraged me to find time to workout because it is my body's way of releasing stress.  I'd prefer to do my workout in the morning, but if I get a subbing job at a school, I usually have to put the workout off until the evening.  Because I spend a lot of evenings at my church for different activities and volunteer opportunities, my workout may not happen until 9 o'clock.  That's tough, but I will watch Netflix while doing a Turbojam routine that I have memorized and the time flies.

A second quality I like about myself is my creativity.  I know that I'm gifted here, and I get that from my mom.  My mom is always doing a new project, or coming up with a GREAT idea/solution for one situation or another.  With Evie, and many of her complex sensory issues, I have seen this creativity as a huge blessing, and possibly even a spiritual gift.  

For example, we started seeing big meltdowns in Evie when she started school at age 3.  She would come home from school and start yelling, and hitting, and biting the minute I got her in the door.  I call it, "Unleashing the Dragon."  I started to realize that this might be happening because she had just followed  a structured schedule at school, but would come home to no schedule at all.  So, I took pictures one afternoon of her "doing" all her after-school things:  Feed the Kitties, Eat Dinner, Take a Bath, Take Medicine, Say Prayers, Read Books, Go To Bed.  I then took all the pictures and put them into a slide show that was set to music, (Goodnight, by Laurie Berkner), using Windows Movie Maker.  Every evening when we got home I'd show her the movie, then we'd watch it after dinner to see what we had already done and what we were going to do; we'd watch it again after her bath, and then it would be time for bed.   This gave her more of a "feeling" of where she was in her day and how soon she'd be going to bed.  It's a huge blessing to me and my family to be able to think through a problem and come up with a creative solution to resolve that problem.  

Lastly, I'm stubborn.  There's no doubt about it.  I don't like to be told that I can't do something; and I will engage in conflict as eagerly as a Momma Bear protecting her cub.  Normally, one would not categorize stubbornness as a positive trait.  However, now that I am the mom of a child with special needs, that stubbornness becomes a cherished weapon in my arsenal of gifts.  Evie had been denied services through the county many years back.  They said she wasn't "delayed" enough.  Clearly, having a child who is developmentally delayed, legally blind, has Sensory Processing Disorder, chronic health issues, speech apraxia, hypotonia...(I'll just stop there); CLEARLY the denial of services was a mistake.  I appealed the decision with the circuit court and had to present my own testimony in from of a circuit judge.  The judge said to me after my appeal, "Regardless of what I decide, it's parents like you that need to continue to push, push, push for their child."  I felt pretty good about that.  But, guess what? He actually upheld the county's decision.  I then went to Disability Rights Wisconsin.  They took our case, and were able to get the decision overturned and Evie has been developing wonderfully with the plan that the county has in place for her.  

I NEEDED the stubbornness that I possess in order to continue to "push, push, push," because I was really starting to contemplate giving up.  I would think, "Really, is it worth it?"  But I would think about my grandma and how she had to push to get my uncle (who has Down Syndrome) picked up by the bus at his driveway the way the "normal" kids were.  Grandma told me once that she thought that whenever the district superintendent saw her coming down the hall he would think, "Oh no, here she comes."   A friend of the family once said to me, "Your grandmother is a champion for people with disabilities."  I was so inspired by those words, and I hope to be able to claim that same title someday for myself.  I certainly have the stubbornness to try!  

When they say that "God gives special children to special parents," it makes sense to me.  That may be a more simplified way of looking at it; but I believe it's true.  One of my favorite Bible passages tells us how this comes to pass: 


For you created my inmost being;
    you knit me together in my mother’s womb.
14 
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
Psalm 139:13-16

God did not make me this way on accident, and he did not give us Evie on accident.  He had this all planned out.  God has taken some of my worst traits and has worked them for the good of my family.  That is truly amazing.

I can't believe my month of Health Blog posting is almost through.  I have been more energized and encouraged by pouring myself out for others to learn more about WAGR/11p Deletion Syndrome, and my thoughts on our lives with it than I could have ever imagined.  My goal is to continue to blog!  I have wanted to be a writer since I was in elementary school, and this month has been a dream-come-true in that respect. So, please, continue to check back on me and see how I'm doing!  I've even downloaded a few apps to help generate ideas and topics for me to write about~you know how stubborn I can be, I just don't want this fun to end!



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