Saturday, November 30, 2013

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 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?  

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!



Thursday, November 28, 2013

My Cup Runneth Over

I marvel daily at the blessings in my life.  I've learned to count my blessings whenever my heart starts to feel doubt or fear.  Today, as is fitting, my assignment for WEGO Health's National Health Blog Post Month is to write about the three things that I am most grateful for in my life.  And ,ultimately, to name the greatest blessing of all.  Considering all that I have to be thankful for, this is not going to be easy, but I know where the heavy hitters are.   

First, I have to say that I am thankful for WAGR/11p Deletion Syndrome, and all our WAGR families around the globe.  Certainly, when we, the Heftys, are
Girls Night Out as WAGR Weekend

 in the midst of pain and heart-ache, the syndrome does not seem like a blessing; but God holds up his end of the bargain when he says that he will work all things for our good, according to his will.  Ten years ago, I could never have imagined saying, "I'm blessed to have a daughter with WAGR/11p Deletion Syndrome." Heck, I don't think I could have said it five years ago!  But, within the last two years or so, I realize that I have gotten more good than bad out of WAGR.  I'm blessed by friends around the world; friends who don't even speak my language, but with whom I can share a smile or some tears, and we totally understand each other. Our hearts are connected, so no words are required.  I find that God shows his love for us so richly through our struggles with Evie's health; he provides in ways that I could never imagine.  

Family Fun in MN

Although I just spoke of my wonderful WAGR family, I would say the second thing on my list of top blessings would be my immediate family and friends. Through the years I have felt surrounded by love, support, faith and encouragement.  They have showered me with gifts, both tangible and intangible.  I have friends and family who pray for me, and for my family.  I have friends and family who call, send letters, write e-mails, and let us know that we are never far from their thoughts.  I look around at a world of hurting people who may have never been told that they are loved; but in my life, I have been told repeatedly.  I am so very thankful for that.  
Family fun in Boston

At the tippy top of my thankfulness list is my husband.  Once we were trekking through snowstorms to go to house parties in college, and years later we were trekking through snowstorms to take our daughter to chemotherapy appointments.  It's amazing where God has taken us through our years together.  We have grown closer still to one another the past few years as we worked through couple's Bible studies like Fireproof Your Marriage.   People will take certain verses out of the Bible, several of them about marriage, and use them to humiliate Christians, when in reality, the verses, (when read as they were supposed to be, "as a whole") mean so much more, and are extremely insightful.  
Skillet Concert at Lifest 2013

For example, I've come to realize that one of the curses of original sin is that marriage will be difficult!

"Your desire will be for your husband,
and he will rule over you.” Genesis 3:16

We are set up to be at odds with our spouses from the very beginning.  Husbands desire respect and wives desire love.  So, if the wives don't feel loved, they have a hard time respecting their husbands, and if husbands don't feel respected, they have a hard time loving their wives.  Well, now, ain't that a catch-22?  When it boils down to it, that's why we need God so much in our marriages.  Because without God, it would be impossible to overcome all the challenges that we face through out our lives.  I've realized that my best friend HAS TO BE my husband. He's the one who needs to know every part of me and hold me accountable for who I am.  I'm very thankful that Jeff and I both have a relationship with God, and continue to work on staying close to each other by remaining close to the God who glued us together with his Divine Plan.  

Finally, the ultimate of all thanks goes to God.  (Shocker, I know.  I totally wasn't leading up to that at all...)  I am amazed by the stories he writes for all of us.  He is the most remarkable creator and director of all things.  Just when I think that I have a GREAT plan, God comes along and really shows me up.  I am here on earth to learn and demonstrate that God's will is perfect.  

"Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will." Romans 12:2

Henna Tattoo
in Key West
I need to look different and act differently so that others will say, "What does she have? I want some of that."  In all things, in all circumstances, I am commanded to trust that his plan is better than my plan.  It's not always easy, but as I become older, and have more experiences to look back on in which that was the case, I find my first thoughts in difficult circumstances are more commonly, "God has a plan..."

Happy Thanksgiving, to even my friends that don't celebrate Thanksgiving!  This is a day of thankfulness created here in America for us to thank our God for his bountiful blessings upon our lives.  Can you look into the "cup" that God has given you today, and see the answered, as well as the answered prayers; can you say in your heart, "It is good?" Consider the jobs you prayed for that you didn't get and how much better off you are.  Consider the failed relationship that didn't lead to a marriage and family, and what you would have missed  had that relationship not failed.  Consider the riches and wealth that you have not acquired, and how it would have changed you if you had.   God's plan for us is limitless in joy and bountiful in good and perfect things; his plan is better.

My cup is full, and it is overflowing with blessings. 

Wednesday, November 27, 2013

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!

Tuesday, November 26, 2013

The Three Questions I Wish to have Answered

There are many things I'd like to know about how Evie processes things.  Often, when I need her to be honest about her feelings, she will start telling a totally fictional story-with characters who don't even exist. Today, my assignment for WEGO Health's National Health Blog Post is to write about the three questions that I would like to ask a patient with the syndrome by which our family is affected.  What I'm actually going to do, to put my own spin on things, is share the three questions I would like to ask Evie, but either I'm afraid to or I don't know if she would answer it truthfully.

First, I would like to ask Evie is she would rather see me cry over the things that break my heart, or if she'd rather I put on a brave face and not show her my fear.  I, obviously, balled when she was diagnosed with Wilms Tumor, when my grandma died, and when my dad died.  I know that seeing me cry heightens her anxiety, but I don't know if she'd rather I NOT cry in an attempt to help keep her calm.

When I had to tell Evie that my dad died, I just didn't know what to do.   Evie is a fixer.  She wants to make people happy.  I explained to her that Grandpa Dick had died and was in Heaven with Great-Grandma Ev; that we wouldn't have a chance to see him any more on earth here.  I recall her just saying, "Yes," and I said, "Can I give you a hug?"  Evie's reply was "No."  I said, "That's okay, but I am very sad that Grandpa Dick is gone, so I'm going to be crying quite a bit, and that's okay.  Auntie Jess and Grandma Jackie will be crying too.  It's just because we miss Grandpa Dick."  Then Evie said, "I know, I'll make a picture and that will make you happy." 

I know that seeing me cry makes Evie want to fix things, like she feels responsible for my moods.  I don't want her to feel that way, but I don't know how to communicate that to her, so I try to be as "happy" as possible around her, strong and unafraid.  I just don't know if that's the "right" thing to do. 

Another question I'd like to ask Evie is what she dreams about.  I don't know if she has good dreams, bad dreams; black and white dreams, or color dreams.  Her intense fear of blood draws makes me think that she would have nightmares about them.  Then, there was a time where she got locked out of school after all the kids had run in from recess.  Being that she's legally blind, and a little naive about going places independently, she wasn't sure quite what to do.  Thankfully, a student spotted her out the window and told the teacher, so they found Evie safe, but scared.  I wonder if she has dreams about scary situations like that now.  I don't ask her these kinds of questions, because I don't like to bring up scary topics if she doesn't bring them up, or if it's not necessary.  Her anxiety is such that when we aren't dealing with something that is frightening, I really would rather not bring it up and get her to start stewing over it again.

Praising with Skillet at
Rock the Lakes in Green Bay
The third question I would ask her is what her relationship with God is like.  A couple of years ago at Lifest, Evie accepted Christ into her heart.  It was dusk and Casting Crowns was coming up as the headlining band.  The speaker who preceded the concert had spoken about accepting Jesus as your Savior and had led a prayer of salvation.  When they asked those who had said the prayer and made a commitment to Christ to come forward, up popped Evie out of her lawn chair!  I ran after her because she was shoeless and she would be walking over gravel and surrounded by crowds!  They gave her a brand new Bible.  I'm so thankful to know that she did this, on her own, and that her relationship with God is hers to create and mold.  But I so want a piece of it.  Everyone does.  When you see Evie dancing and singing and praising; it's a little piece of Heaven right here on earth. 

Evie is unique, as are all kids; but with her speech delay, and her anxiety issues, it becomes very difficult to verbalize all of the things that a parent might be able to ask their "typically developing" kid.  I'm sure as the years pass and Evie gets older, we'll have more chats about these topics.  For now, though, I'll be thankful to share in her imaginary world, where she is 32, drives a pink Camry, and works at a coffee shop/church/school. 

Monday, November 25, 2013

The Power of a Good Plan

With Thanksgiving this week, and Christmas just around the corner, it's only appropriate that the assigned writing topic for WEGO Health's National Health Blog  Post Month is to write about things that we have to do as part of our planning for the holidays because of our daughter's health condition, WAGR/11p Deletion Syndrome.  

First of all, we know the holidays are dangerous because there is a high risk for over-eating (to say the least.).  Since people with WAGR/11p Deletion Syndrome are at risk for obesity, plus the added health risks of diabetes and kidney strain; we really have to watch Evie's diet to ensure she stays as healthy as possible.  We track calories through an app on Evie's iPad called My Fitness Pal.  I tell Evie that we play the game 1200 and try to keep her calories under 1200.  That's still maybe a little high, but I figure if we can do this during the holidays, then we are good shape for warding off on-wanted weight gain.  Obviously, we can't "reward her" with food, so it has to be a special event like, "Mommy will take you to Panera..." she eats healthy there, and it's not really the food that is the reward so much as the special date with me. 

We have to be prepared for our travel, and there are too many important things to pack in order to keep our travels running smoothly.  I start to make packing lists a few days ahead.  This has to include fine details like, "eye ointment, eye drops..."  I can't just say, "Pack Medicine" or I will forget to pack something that falls under that category.  If we're doing a road trip that would require Evie taking her medicine while in the car, then I have to plan ahead and pack food and spoons for her to get the medicine down. 

Not only must we pack the right medications, but we must also remember to get medications filled before the holidays when the pharmacies might be closed.  Even going beyond THAT, we have to double check dates that medication refills are good through so we don't have to wait for a doctor to phone in a prescription that has expired.  (It's obvious that I've fallen victim to more than one of these circumstances before, isn't it?)
 
We will need to take a blood pressure machine with us this year when we travel since we just had to add a new blood pressure medication to Evie's regimen.  Having one's very own blood pressure machine really takes "playing doctor" up a notch.  We have one that is huge, like the rolling types at the hospitals, but more recently we purchased a smaller, more portable machine that fits in a pouch, and we can just leave our tracking sheet and pen right inside the pouch with it. 

Finally, we have often taken a portable picture-schedule with us to keep Evie's anxiety low while on extended weekends or week long vacations.  Having the predictability, even when away from home, makes her life so much easier; which then makes our lives so much easier.  We just had a foam-tag board arrangement with Velcro for the pictures to go on and off easily.  Now, as she's older, we actually have made a tri-fold board that I use with her to play school.  When we wake up and play school in the morning, it almost sets a calming tone for her day.  She loves to play both student and teacher, and having a "toy" like this from home, I think, keeps her less homesick.

So, it's never just "pack a bag and go" here.  I have to be thinking about the trip at least a week in advance to ensure we have all our little ducks in a row.  But the planning doesn't frustrate me at all, because I know that the planning is what gives us power over Evie's health, both physical and mental; and that's worth its weight in gold.
 

Sunday, November 24, 2013

Take the High Road~but Ensure the Bridge of Forgiveness is Open

According to www.urbandictionary.com , to "Take the High Road" means  "doing the right thing even if its not popular or easy."  For my nineteenth day of blogging with WEGO Health's National Health Blog Post Month, my task is to talk about a time when I had to take the High Road because of my daughter's health condition.  Is it a coincidence that this just happened this week?  Hmmm....the likely answer to that would be "no."

First, I will set the stage.  An acquaintance on Facebook had posted a picture of Helen Keller with a dog.  The words that were graphed over the top and bottom of the photo read, "Helen Keller and her beloved cat, Mittens."  Several people had already "liked" the photo and there were some who had commented and said that it was funny, and beyond funny.  My heart truly started racing; it is even now as I take myself back in my mind to this occurrence. 

"Don't be so sensitive."
"It's not meant to be personal." 
"Laughter is the best medicine."

I couldn't hold my tongue...or in this case, my fingers.  I went on-line and found a quote from Helen Keller:  Although the world is full of suffering, it is also full of the overcoming of it.  I posted the quote on this persons Facebook timeline and said, "Thankfully, the person you're making fun of also is known for saying this: [insert quote]. She's an overcomer and so is my daughter who knows her cats whether she sees them or not."

For the rest of the day, I felt as though a battle was raging inside of me.  This type of thing contributed to my lack of popularity in junior high and high school.  I would jump to the "defense" of those with special needs or in a "lesser class" on the social scale of popularity.  I was sensitive, even overly sensitive; I can admit that.  Why did God wire me this why?  Why can't I just hold my tongue and let that kind of stuff go?

Here's why...

As the mother of a child who is blind, my greatest fear is someone taking advantage of my daughter, or making fun of my daughter.  This picture and the reaction to it, are evidence that there are people in the world who will not respect Evie for the beautiful, insightful, spirited person that she is.  They will look at her and say, "she's an easy target."  I question whether the people who laugh at this picture might be the same people who would see my daughter drop money on the ground, and, rather than telling her, they might think:  It's my lucky day.  I just made $20 bucks. 

Will they laugh at her if she wears miss-matched socks?
Will they tell her that she put her shirt on backwards, or just snicker and point it out to others?
Will they help her out when she drops her white cane and can't seem to find it on the ground?

These type of "jokes" steal the dignity from a person living with a disability.  We all deserve dignity, do we not?

I'll admit, I have not always thought of things this way.  I may have laughed at this years ago as well.  Just yesterday I was looking through Girl Scout Camp Songs, and picking ones for Evie and I to teach to her troop tomorrow.  I saw a song about a shark, and it had actions (and Evie loves her action-songs).  But as I read through the lyrics, at the end the shark bites off a person's leg, and we are supposed to hop around on one leg.  Then we say, "Happy Shark."  I immediately thought, "We can't do this song, it makes fun of people who might not have all of their limbs." 

"But, Tammie," one might say, "Laughter is the best medicine."  Laughter is good medicine.  We have used laughter a lot in our family...all the time.  Jeff and I used to joke that Evie's ultra-sounds and CT Scans were our "dates" that insurance would cover.  Evie was sedated, so we would get a pager to notify us when the scan was over and she was waking up, and then we'd go get our coffee and scone, and have our date.  We would laugh when Evie would wave at the doctors and nurses who would come into her room to check her out.  She had to lift her eye lid up with one hand and wave with the other.  The laughter wasn't because she looked "funny."  The laughter was because she was an adorable bundle of happiness even though she was on chemotherapy and legally blind.  Laughter doesn't have to come at the expense of another; the laughter that is good medicine comes from joy inside of us, in spite of our circumstances

I could NEVER claim to be perfect.  I make mistakes just like everyone.  I might not realize when I'm being insensitive.  In this case, I had to say something, even though I knew I might get hurt in the process.  It still hurts, even days after it happened.  But I hope that I have a heart and mind to listen if someone points out to me some evil that I may be doing.  As Christ said, while dying on the cross, "Father, forgive them, they know not what they do..." and I know that I must forgive others when they know not what they do.  Forgiving, however, doesn't mean we must stay quiet.  It doesn't mean we don't bring to their attention an injustice when it is committed.  Forgiving is really the act of moving forward and not lingering in the past, and not continuing to punish. 

The song Losing by Tenth Avenue North really sums up my dilemma to these types of situations.  How do you know when to take the high road? 

Well it's only the dead that can live
But still I wrestle with this
To lose the pain that's mine
Seventy times seven times
Cause Lord it doesn't feel right
For me to turn a blind eye
Though I guess it's not that much
When I think of what You've done.
metrolyrics.com

I'm sure I'll keep getting all fired up when I see something that really eats at the inside of me.  I'll likely anger a few people along the way as well, and require their forgiveness.  That's all part of this journey, and that's all part of how we become better people~recognizing and accepting our wrongs, making amends when we can, and looking to the future with a more compassionate sense of what is just and right in this world.

All that is necessary for the triumph of evil is that good men do nothingEdmund Burke

Saturday, November 23, 2013

My PhD in WAGR/11p Deletion Syndrome

I didn't actually apply to the College of Letters and Science for the WAGR/11p Deletion program, but was recruited.  Apparently my stubbornness, curiosity in all subjects, and enthusiasm to use my communication skills made me a qualified candidate.  Now, I find that, after only a few years of parenting a child with WAGR/11p Deletion Syndrome, I have earned the honorable degree of PhD.  Maybe there's no diploma on the wall for this degree, and I didn't get a fancy "puffy" gold trimmed regal robe, but I do have a knowledge of WAGR that comes from experience and listening to others who have gone through it.  I also know that my education will continue; (apparently one needs to keep up to date on all the exciting developments as they arise.)

For WEGO Health's National Health Blog Post Month's 23rd day of blogging, I'm supposed to write about the times when I have "taught the teachers."  In other words, when have I been the one to help the doctors, therapists, and teachers learn more about WAGR than they did before meeting us?

There have been many opportunities to educate other doctors.  Typically, it hasn't been OUR doctors, but the ones we would meet when we'd be in the ER for an unplanned visit.  Actually, those trips became quite intolerable because we felt like a three ring circus.  We'd go in because Evie would have a fever and be lethargic, or she be having trouble breathing and we'd find out she developed pneumonia...but we'd be in the ER for HOURS AND HOURS because every intern-resident-med student on duty would have to come parading through our room and ask the SAME questions, and look in her eyes, and listen to her chest and ask, "Does she always look this way?"  (They would ask that because her eyes would be droopy, a condition called ptosis, and she had low muscle tone so she appeared extremely listless and floppy.)  "Yes," we would respond, "this is her typical appearance."  I actually got quite tired of the whole ordeal because we just wanted a diagnosis, a prescription, and a release to go home. 

Probably one of the most HELPFUL things I was able to teach the doctors came during Evie's chemotherapy.  One of the chemos she was on was vincristine.  Vincristine, we were told, was a "nicer" chemo, with fewer side effects.  However, what our doctors did not know was that patients with WAGR demonstrate a more dramatic response to the vincristine; meaning, whatever potential side effects there are, are much more likely to occur, and to a much greater degree, than with a "typical" patient. 

Fortunately, our BRILLIANT Gorilla Moms on our support group list-serve told me about this.  Since there was no real statistically significant data out there on WAGR and the vincristine side effects, we looked to the data regarding Down Syndrome and the increased toxicity vincristine had on patients with DS.  After I informed our doctors about this, there were actually a few doses of vincristine that our oncologist reduced the quantity, or even withheld treatment for a week until Evie's side effects were reduced.  Side effects would include:  soars in the throat down into the stomach, cramping in the legs, neuropathy (less sensation in extremities, like feet and hands), and constipation.  Evie typically had so much pain in her jaw that she had a hard time eating, or drinking from her bottle.  We had her on oral morphine in order to make sure she would drink enough fluids to stay hydrated. 

Another example of when we were able to give our doctors "inside secrets", was talking to our cardiologist about a procedure that Evie will have next summer.  I love our cardiologist because he is so open to getting feedback from me and listening to what I know rather than just determining what he would "typically" do for Evie's heart condition.  He said, "Is there anything I should know about WAGR and how a surgical procedure might affect her?"  I said, "Well, it's been determined through the study at the NIH that patients with WAGR are more at risk for developing pancreatitis after being under anesthesia."  "Really?"  He replied, "See, that's something I wouldn't have known.  Thank you for telling me that!"

Other things that people on the "outside" might not know include:

  • A lot of people with WAGR have sensory issues; they often benefit from occupational therapy
  • Many have hypertonia or hypotonia (increased muscle tone and under-developed muscle tone); they often benefit from physical therapy
  • Kids with WAGR will have trouble developing speech skills and may have conditions like speech apraxia; they will benefit from speech therapy
  • Patients with WAGR have an increased risk for obesity, and it is strongly associated with a deleted gene called the BDNF gene
  • Patients with WAGR have an increased risk of kidney failure, so a "kidney-sparing" diet is good and they should stay away from ibuprofen to treat fevers and pain
  • Some patients with WAGR have no, or, an under-developed pineal gland, and that is the gland that produces melatonin in our bodies; melatonin helps create regular sleep patterns in us; so many of our kids take oral melatonin in order to help them sleep
One final thing that people don't often have to be told, but they will quickly come to realize for themselves is that our loved ones with WAGR are incredible blessings.  I don't know how God does it, but he gives these kids to amazing families; places them right where they need to be; and then he makes them radiate life and joy to those around them.  People with WAGR have infectious laughter, profound insight, and inspiring determination.  

As Sarah Groves wrote in her song "Painting Pictures of Egypt," The places that used to fit me, cannot hold the things I've learned, and those roads were closed off to me while my back was turned.  That's such a good description of my life.  As much as I'd love to see those simpler times in my past; times before I knew some of the heartaches that I know now, I also recognize that I can't go back to life before WAGR.  I am a better, stronger, more compassionate, more faithful person than I used to be...I could never fit back into that my old life; and I wouldn't want to; not for all the riches in the world. 

My education will undoubtedly continue, and hopefully my insatiable curiosity will hold out as well.  I'm sure once I reach those pearly gates and hear Pomp and Circumstance playing as I walk the golden pathways in heaven, I'll be more than happy to toss my mortar board high in the air and know that my days of studying and learning are over.  But, for now, I'll happily teach some courses, and take some courses, and keep myself busy until that time comes. 

Friday, November 22, 2013

Behold, my Favorite Blogs

The credit can be given to Twitter...once I figured out how to use it.  :)  I could search #raredisease, or #faith, or just take a peak at the Snappin' Ministries=Disability Ministry list, and I found myself overwhelmed by wonderful blogs written by extraordinary people.  These people blog about rare diseases, and even common ones, and how faith gets them through each day.   Today, for WEGO Health's Favorite Fridays, I have been assigned the task of telling you about my top three favorite blogs.


First, I have found www.comfortinthemidstofchaos.com to be a wonderful read.  This blog is "a daily devotional especially intended to offer compassion to other challenged parents of kids with special needs."  Published by Snappin' Ministries, this blog incorporates scripture, personal narrative, and prayer into the posts.  I find it a comforting reminder (suitable to the name) that God is with us, and that I can find his support all around me. 

Following Snappin' Ministries led me to another of my favorite blogs: 
www.surprisingtreasures.com .   Another blog of scripture, prayer and narrative; I just can't get enough of reading about other moms who turn to God for their strength, and try to honor Him in their words and actions.  While there are people who say they find ME inspiring, it's a joy for me to be able to drink from a fresh fountain so that I can renew my spirit as well.  God put us on earth together, so we might as well encourage one another while we're here!  The evolution of the BLOG is evidence of how we can become evangelists around the world; not just within our own local community. 

A third blog I follow is www.losjohnson.blogspot.com .  I actually found this blog while searching the internet for information on Koolen-de Vries Syndrome after my friend's daughter was diagnosed with it.  This family actually knows the same kind of "uncertainty" that my family does by having a child with a "RARER than RARE" syndrome.  The Johnsons are beautiful, fun-loving, and inspiring.  Again, God does not put us out there and ask us to find our strength on our own...he provides avenues by which we can find strength.  Reading about another rare disorder reminds me that WAGR families aren't the only ones who find themselves in the position of having to "know more" than the doctors, therapists, and teachers combined.  We can gracefully help educate those who may not know as much, and with each person we tell, they will tell others. 

I have found other wonderful blogs by participating in National Health Blog Post Month.  ( #NHBPM)  I'm so thankful that WEGO Health did this, and that I now know friends like Jessica Gimeno ( www.jessicagimeno.com ) and Rhiann Johns (www.brainlesionandme.com ) and Kam ( www.missempowered.blogspot.com ) .  What a gift. 

I know not everyone likes to sit and read blogs, but for me it is better than checking out a book from the library.  I feel refreshed, renewed, and revived by seeing the spirit of others living with various health conditions, as well as reading about other parents of children with conditions similar to our daughter's.  Someday, I look forward to finally meeting all these souls in heaven where we can party for eternity freed from our broken bodies of this earth. 

For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life.
1 Corinthians 5:4



Thursday, November 21, 2013

Mind-Games~How to Finish the Race

On this 21st day of November, my assignment for National Health Blog Post Month from WEGO Health is to write about the mental effects of the illness that we live with every day.  I could talk about Evie's anxiety, because that is pretty off the charts, and quite typical of WAGR/11p Deletion Syndrome.  I could talk about how so much medical intervention at such a young age can affect the self-esteem of a child as she grows older.  I think, however, it's more important for me to talk honestly about something I, as a mother,  experienced when Evie was being treated for cancer. 

About 2 months into Evie's chemotherapy I had a panic attack in a movie theater.  I had been experiencing migraines on a daily basis and had medication to take that would help minimize the pain.  Unfortunately, the medication I took had a high quantity of caffeine in it, and I had compounded that by drinking coffee, diet soda, and eating some chocolate covered coffee beans.  I had created the perfect storm.  It was the preview for the movie Cars that created the intense feeling inside me of insecurity and danger.  My heart started racing, I felt a tremendous pressure on my chest like a big weight was pressing against it.  I just wanted to be in a bed, safe, with someone taking care of me.

I made it through the preview of Cars, but then the movie we were there to see started.  It was Narnia.  In the opening scenes there were helicopters flying in the dark of night, dropping bombs.  I felt the panic rising within me with each bomb that exploded; as if the deep-bass rumble of the explosions had its impact deep inside of me.

I leaned over to my sister and said, "I don't feel safe.  I want to jump out of my skin."   She took me outside of the theater.  We sat in the hall and she tried to calm me down.  I remember saying, "I need someone here.  I need someone to keep me safe."  Eventually, when we realized my feelings weren't passing, my sister went back in the theater and found my friends who we had left in there.  I used my cell phone to contact an on-call nurse from my clinic.

The nurse asked me what had led up to the attack.  I explained about my migraines and the medication.  We talked about the fact that I was likely dehydrated as well as over-caffeinated.  She recommended I speak with  my doctor about switching medications, and then asked, "Is there anything else going on that may have caused your anxiety?"  I said, "Oh, well, my daughter has cancer...."  I maybe even said it more like a question, as if I wasn't really sure that it was a legitimate answer. 

"Are you seeing a counselor?" she asked.

"I'm working 30 hours a week, and my daughter has cancer.  I don't have time to see a counselor, let alone squeeze in a doctor's appointment for myself." I replied.

"I think you need to.  At least you can talk to someone about your feelings, and they won't be involved in anything, and you won't feel like you're letting them down."

Truth.  That was truth.  I didn't want to admit that I needed counseling.  No one else was getting counseling.  Everyone else was handling Evie's sickness just fine.

I called and got an appointment to see a counselor.  Some of the appointments I went to didn't feel all too monumental to me, but others brought me some peace through just knowing I could talk about my fears and frustrations and not feel like I wasn't meeting others' expectations. 

The appointment that helped the most, however, came close to the end of Evie's treatment.  I said to my counselor, "Is is weird that I'm scared for Evie to finish chemo?  Does that make me one of those moms who wants her kid to be sick so she gets attention?  I'm just scared.  Why am I so scared for this nightmare to end?" 

My counselor gave me such a reassuring answer.  She told me that I wasn't weird.  The feelings I was experiencing are actually quite normal for patients and caregivers as treatment is coming to an end.  The reason for this is surprisingly simple to understand:  We were told our daughter had cancer and since that day we have been "doing" something about it.  The chemotherapy was giving us a bit of a reassurance that we were fighting the disease with all that we had.   The chemotherapy was a sort of security for us that we weren't going to find new cancer growing in Evie~at least not while the chemo was there.  But once treatment ended, we would have to sit, and wait.  We were going to be waiting for the next scan, the next "all clear", the next confirmation that cancer had not returned. 

What a relief it was to realize that there was a reason for my feelings.  This was an area that had plagued me for weeks.  Why wasn't my faith in God enough to get me to feel comfortable with where we were in our journey?  Almost to the end of the race, and I was feeling terrified to cross the finish line.  It hadn't made sense to me, but my counselor helped me turn that around. 

What I really wanted to express is that going into therapy or seeking wise counsel is not a sign of weak character nor weak faith.  It's a decision to look to another party who is not as close to one's situation and can help an individual rationally understand some of the feelings that she is experiencing.  I want people to know that even all the courage and faith in the world may not be able to slow a brain down so the body can take a breath and look at one area of life at a time.  Our minds seem to run further and faster than our bodies could ever carry us, so we often need  a voice of reason to keep it in line with the reality in which we live. 

My mind is often my own worst enemy. I have to utilize all my resources to keep it on the right race track, and focused on the finish line. 

Wednesday, November 20, 2013

I Still Remember...

I have moments in my life that are like snapshots; pictures frozen in time...

I still remember day two of Evie's life.  Day one had been filled with joyful phone calls to family and friends, (no Facebook at that time), sleep-deprived hours of trying to learn to nurse, and watching Tommy Boy.  Day two was filled with visitors, and gifts and more joyful phone calls.  On the night of that second day, I recall one specific moment above all others.  I was laying on my right side in the hospital bed.  Evie was cradled next to me, swaddled in a pink receiving blanket, with a knit baby cap on her head.  Her eyes were closed, and the room was bathed in the soft gold light of the Christmas lights hanging above my bed.  (The midwives called them "Birthing Lights.")  Evie had a baby smell that I can only describe as pepper.  Maybe that's why I go looking for fragrances now that include pepper in them.  I loved the way she smelled.  I laid there, looking at her perfectly serene face.  I felt as though God was telling me never to forget that moment.  I recall telling myself to take a mental picture of that moment, so I did.  The next day, day three, was the day we were told that something was wrong with Evie's eyes; and that began our journey toward the diagnosis of WAGR/11p Deletion Syndrome.  So, in a sense, that mental picture was the last moment that I recall having a "happy homecoming" with our newborn baby.

I still remember the ride home from hospital and wondering how or WHAT we were going to tell people.  Neither Jeff nor I understood all that we had been told.  It was confusing, frightening, and felt like a nightmare.  When we walked in the house our phone rang and it was my friend Kathryn.  This was a total "God-incidence" because Kathryn was a kidney transplant survivor, and part of what I recalled hearing at the hospital was that something would be wrong with Evie's kidneys.  I broke down in tears upon hearing her voice.  "Hey, Sugar" she had said in her sweet southern accent, "you made it home."  I spilled out to her my fears and frustrations and gave her a whole load of something she wasn't expecting.  Kathryn became a voice of reason, faith, and acceptance for me as we worked through everything with Evie.  I miss her so much because she's home now with her Heavenly Father.  I know she's with us in spirit though.

I still remember the day we got Evie's WAGR diagnosis.  Her blood had been drawn when she was three days old, but it had to be sent to Baylor University in Texas to run the actual test that would confirm WAGR (FISH analysis, it's called). When Evie was about four weeks old, we were at the clinic for her well-check.  Dr. L said he had gotten the results and read us the letter confirming that she had a deletion of the 11p chromosome, including the PAX 6 and WT 1 gene, thus confirming WAGR. We felt defeated.  Dr. L handed us some information he had found on the internet for a website www.wagr.org .  I didn't visit the website, nor did I join the support group until a couple of months later.  When I finally did though, our lives became rich with our WAGR family, and we had more support, knowledge, and creative solutions than I ever thought possible. 

I still remember being in the hospital on a Friday morning in September 2005.  Evie had been diagnosed with Wilms Tumor, and we were waiting for them to come and take her to remove her kidney.  I remember Jeff being dressed in a gown and cap so he could go with Evie and the doctors until she fell asleep.  I remember us walking with the large metal crib down the hall and Dr. K stopping us.  He said, "Hold on, let's go back to the room."  That's when he told us that he (our urologist) and Dr. P (our oncologist) were not in agreement on how to proceed.  Dr. K wanted to remove the kidney.  Dr. P wanted to contact Dr. D, who had seen several other WAGR patients with Wilms.  Dr. D was up in Vancouver at a Children's Oncology Group meeting, however, so she wouldn't be able to consult with him until next week.  We were free to go home for the weekend.  I imagined all the legions of angels, as Evie was being lifted up in prayer, I saw them all coming together and organizing the timing of the conference, her diagnosis, and the minds of the doctors~their willingness to listen and learn.  God was with us.    

I still remember chemo appointments, and the joy Evie gave all the staff with each visit.  I remember late night phone calls to the on-call doctors because we couldn't figure out if we could give Evie more morphine or not to help ease her pain.  I still remember the Baby Mozart DVD that we would watch over and over again in the hospital, and now I can't listen to Mozart anymore because it takes me back to those days in an instant. 

I remember all these scary times, but I also remember the good.

I still remember Evie creating her own sign for "play music"...she made the hand sign for "play" but then swept her hand over her opposite arm as you do when signing music.  That's when I knew for sure that, while it may come later than other kids, Evie certainly would talk some day. 

I still remember Evie walking into our room for the first time in the middle of the night.  We had just started her "brushing and compression therapy" with her OT.  She had never walked to our room before in the middle of the night, she would wake up and cry in her bed until we came to her. 

I still remember the first time I realized that even low vision wouldn't stop Evie.  We had driven through the roundabout in town.  Despite being at a lower level than the windows and being legally blind, Evie new exactly when we drove by the exit one would take to get to Culver's.  She waved and said, "Bye, Culver's."  
On the Left, Me at 18 months; Right, Evie at 24 months


I still remember the first time I saw myself in Evie.  We were in the car on the way to Minnesota and she started whining.  I turned around to look at her and she had a pouty look on her face.  It was me.  It was all me.  I had never seen and "expression" on her face before, and that must have been because of the chemo side-effects.  But they were wearing off, and now I was able to really SEE Evie and her true personality.  Go figure, when my daughter looks the most like me is when she's pouting. 

I still remember all this and more...and with God's good grace, there many memories still to come.  I know the road won't always be easy; but in all these memories, the good and the bad, God was there, and he has so much more for us to do!  With that in mind, I better wrap up this walk down memory lane and start making more memories today.   

The faucet hasn't dripped in months...

Nori and Jinx at our hotel at Lifest Five months have passed, We've seen it snow, We opened gifts,  We miss you so. We t...