And the Award Goes To...

For our final day of blogging during National Health Blog Post Month, WEGO Health asked me to nominate a health activist for one of their Health Activist awards.  Since they allow organizations to be nominated, I went ahead and nominated the International WAGR Syndrome Association (IWSA).  The IWSA is an all-volunteer organization; meaning no one, not even me as the president receives any payment or advantages from the group; and still we work hard each day, month, and year, to ensure that we uphold our mission:

“The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives”

http://www.wagr.org/aboutiwsa.html

I cannot express sufficiently how honored I am to be among this group.  I am moved to tears during each WAGR Weekend when we hear about what the IWSA has accomplished from one year to the next. To think that this group of moms (to begin with) actually got together, said, "There must be more of us out there," and then forged ahead through the mysterious "new" internet to make contact with the other families.  These passionate women, moved to connect by their child's rare disease, started newsletters, built websites, constructed medquest surveys, and got the attention of the medical world all before my daughter was even born.  That is amazing; especially considering that THEY had kiddos with WAGR as well!!!

I volunteer at my church because I am grateful for what Christ did for me in freeing me from the bondage of slavery.  I volunteer for the IWSA because I am grateful for those people who took time; to learn, to act, to build so that we could have a strong organization that strives to make life wonderful for each person with WAGR/11p Deletion Syndrome.  

If someone would like to learn more about the IWSA; it's history, it's future, it's accomplishments, she or he can watch a youtube video created in 2010 by one of the IWSA leaders. 

The IWSA: Past Present and Future

The video is just over 13 minutes long, but if an abbreviated version is necessary and one would like to find out how "One Person" can make a difference, jumping ahead to minute 9 or so can get you there.  

We continue to add more and more families to the IWSA, and they are scattered around the globe.  The response when a family connects with us is priceless and is almost always the same, "For the first time, I feel hope."  "For the first time, I belong."  "For the first time, I don't have to explain a thing."  Truly, that's better than any pay check in the world.  

Thank you to all of my followers during National Health Blog Post Month; I hope you'll stick with me as I try my skills at blogging independently!  Tomorrow, considering this jump into a new opportunity, I'll be writing about what would happen if I fail?  

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!

Noises, and Bright Lights, and Lines~ OH MY!!!!

Oh, the joys of holiday shopping!  I don't take Evie out with me on Black Friday because she doesn't even like shopping on a regular day, let alone the biggest shopping day of the year.  However, I have had my share of long lines with Evie, and have had to take her shopping when I have no other choice.  Today's assignment for WEGO Health's National Health Blog Post Month is to tell you about the things that I have done to make the experience a little less painful for all of us.

My friend, Jenny, who also has WAGR (the same syndrome Evie has) told me that the noise and bright lights in the stores unnerve her.  Based on that information, I tried putting music on my iPhone when we would go through Target or other stores.  She and I would sing along while we walked down the aisles.  It was a tremendous help.  Even better, we add headphones when we know that the volume would need to be too loud in order to help her; so as not to offend any of our fellow shoppers.   

Another thing to remember with a person with WAGR is that she or he may have sensory issues.  Pushing and pulling heavy things can help, so I will ask Evie to push the cart (I believe in some countries this is called a "trolley").  Giving her a task keeps her busy too!  One year when we DID brave the holiday crowds, I gave her a mall-wide scavenger hunt.  I listed different stores, and various items to find in those stores.  She and my husband would go looking for the things in the stores, and she'd get to put a sticker on her tracking sheet when she located them.  Then we gave her a reward at the end of the shopping trip. 

Those are the things that help when we are on the move and shopping, but how about when we get to the lines?  Two summers ago, I got Evie and I season passes to a waterpark.  I knew that we would have a lot of lines to stand in as we waited to get on the rides, so I told her to "put on your patient pants".  Honestly, it worked.  I don't know how or why, but whenever we would drive up to the entrance Evie would say, "I put my patient pants on."  Hilarious, and adorable...that's all I can say.

However, when the lines are extraordinarily long, I would use a couple of word\games to keep us occupied.  I call them "Going on a Picnic" and "Going to the Zoo".  One of us would say, "I'm going on a picnic and I'm bringing apples."  The next person will say the same except they have to bring something that starts with the letter "B".  "Going to the Zoo" is quite similar.  "I'm going to the zoo and I'm going to see an aardvark."  Again, the next person names an animal with the next letter of the alphabet.  It's a good time waster, and it's amazing how much it exercises one's brain.

For smart phone users, or people with iPads, the MadLibs app is fabulous.  There are some free madlibs, (I rarely purchase anything on apps). Madlibs are educational as well since it requires knowledge of nouns, verbs, and adjectives.  The people around you will enjoy listening as the story is read back.  Trust me. 

When in doubt, the best thing I can do for Evie is create a 1, 2, 3 plan just like Dora the Explorer would.  "First we have to get by the grumpy old troll, then we go to Tico's tree house, and that's how we'll get to Rainbow Rock."  Of course, in non-cartoon life this sounds more like, "First we have to get a heated mattress pad at Kohl's, then we'll pick out something "Bucky Badger" for a gift exchange, and that's how we'll get to Target for all of our basic needs." 

My last "tip" is about bathrooms.  We have made many, many a trip back to my hometown which is a good 4 1/2 hour drive from where we live.  I ultimately came to the decision that stopping to go the bathroom at a restaurant is MUCH more reliable than stopping at a gas station.  When you consider the standards that restaurants are expected to meet, they HAVE to be higher than a gas station, so despite how busy they may or may not be, the bathroom in a restaurant will likely top the cleanliness range of a bathroom at a gas station.  I'm not saying this is a certainty, but the odds are in your favor.  (Now that I said, "The odds are in your favor" everyone is thinking of the Hunger Games...which makes me think that some public bathrooms really are like the Hunger Games...You're fighting over limited resources like toilet paper and paper towels, hoping to rest somewhere that the "elements" won't take you down, and the most important thing you need to find in the bathroom is a clean water source.)

And, on that note (Don't forget to tip your wait staff, I'll be here all week!), I'll say "Happy Thanksgiving Eve".  Tomorrow I get to write about the things for which I am the MOST thankful.  Oh, the suspense, the anticipation...I just can't wait!