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. 

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!

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. 

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.
 

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 nothing.  Edmund Burke

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. 

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

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. 

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.   

Three Pieces of Advice to Caregivers~How I, Myself, Get Through

This is kind of a landmark entry for me!  My 14th day in a row of writing.  For two weeks I have made the time to sit down and write daily; I never would have done that except for WEGO Health's National Health Blog Post Month.  Because today is Tuesday, they direct us to write a "Top Three" on some topic.  Today, I get to give my top three pieces of advice to other caregivers.

The first piece of advice I'd like to give may sound cliché, but it's 100% true:  Count your Blessings.  What I mean by that is this; it's not that you need to be more grateful, it's that, literally, negative and positive thoughts cannot rule your brain together.  I call that lying voice, the negative voice, the voice of doubt and fear; my GREEN MONSTER voice.  I picture him somewhere up there in a corner of my brain, just jabbering away about all the doubts and insecurities in my life.  He says things like:  "Tammie, things are going too smoothly, this next ultra-sound for Evie won't be clear."  and "Remember, her blood pressure's too high, that's gotta mean something's wrong with her kidney."  or "What if you have to go back to working full time and you can't be home with her on summers and after school anymore?" 

Blah, blah, blah, blah, blah...Green Monster gets my heart racing and my mind running.  I start to feel panic creep in.  When this happens, I go back into my brain, (and even sometimes write out), all of the amazing miracles that have happened along the way.  Oil and gas bills with credit on them rather than balances when Evie had cancer; the Children's Oncology Group meeting at exactly the time she was diagnosed, so her doctors could call and consult with some of the greatest minds in children's cancer ~ all meeting together; me being unable to contact Jeff the day Evie was diagnosed because he was out of cell range, but that delayed us checking into the hospital, thereby delaying her surgery long enough to find out that she wouldn't need to have her whole kidney removed.    When I focus on these things and look at the enormous "miracles" inside of them, I really can't justify feeling scared about our future.

Evie a few weeks into treatment for Wilms Tumor

My second piece of advice for caregivers is to create a lot of "logs" and to always have a notebook and pen to write things down.  Often I found that I couldn't remember the easiest thing because of sleep deprivation, and all the things jumbled in my head.  We had (and still have) so many medications, that it was hard to remember when and which ones to give to Evie.  A medication journal will help you remember that you gave the medication and at what time.  If your child has constipation problems, start charting bowel movements!  It's not glamorous, but it helps you know when you need to ramp up the miralax or lactulose.  If your child vomits after vincristine and the doctors are telling you it shouldn't make them sick; start charting when it happens.  I figured out that Evie vomited exactly 5 hours after chemo.  That helped our GP determine that it was a bowel spasm that was making her vomit, not nausea from the chemo.  We started to lube Evie up with lactulose on her chemo days and she never got sick again from vincristine.

Writing things down doesn't mean your stupid or inept, it means you are thorough, conscientious, and recognize that you're in a place where there is so much to process that you may need to write it down now and process it later.

My third, and final piece of advice for caregivers is to get into God's word everyday.  It may not mean reading the Bible or doing a Bible study (I would have never been able to do that when Evie was her sickest), but it could mean getting a good daily devotional.  One devotional I've read and always been moved by is My Utmost for His Highest by Oswald Chambers.    Uf-dah!  The passages that are highlighted,and then the reflections that Chambers applies to the passages would overwhelm me with peace and give me a chance to marvel at God's goodness in the midst of our own little "hell on earth." 

An example of this if the passage for September 30th...Evie was diagnosed with cancer around the 23rd of September, so right around the 30th she was having her surgery to place her port and begin chemotherapy.  Chambers, on September 30th write about The Commission of the Call:  "Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking in Christ's afflictions for the sake of his body, that is, the church..." Colossians 1:24  This was Paul writing to the church at Colossae.  Chambers, in My Utmost, says,

"This call has nothing to do with personal sanctification, but with being made broken bread and poured-out wine.  God can never make us wine if we object to the fingers He uses to crush us with...if ever we are going to be made into wine, we will have to be crushed; you cannot drink grapes." 

 

 

Believe it or not, the thought that we were being crushed so that we could be made into wine was quite comforting to me.  I began to really understand that the pain and fear we were experiencing was only for a season, and that we were being transformed to be a little bit more like Jesus.  That's what kept me going, and continues to propel me forward today.

 

So, there you have it, the best pieces of advice I have to give to all those amazing caregivers out there who may be feeling broken hearted and defeated today.  Please know that you have a Lord, a King, a High Priest, who has experienced pain, suffered death, and conquered death so that we may know glory in Heaven when our time comes.  God is crazy about us, and loves us too much to leave us as the sinful, selfish creatures we can be.  We may feel crushed right now, but soon we'll be transformed just as Jesus was. 

I Cannot Tell a Lie...

WEGO Health is asking me to lie today.  I'm really good at making up lies quickly and pulling it off, but I'm not good at long-term lying.  Lies eat away at me and torment me as long as I keep them in.   So, rather than telling you some truths and lies and having you figure out which one is which about ME, I'll tell them about WAGR/11p Deletion Syndrome and you can determine which is truth and which is a lie.  I'll even send you to the website where you can find the answers.  (A.K.A. the Teacher's Edition of a textbook)

• WAGR/11p Deletion Syndrome is SO rare, that there are only a few hundred documented cases in the WORLD.  http://www.wagr.org/images/WAGR_Syndrome_Chapter_59_revised_upload_5_17_11.pdf  When you consider that "in the United States, the Rare Diseases Act of 2002 defines rare disease strictly as "any disease or condition that affects less than 200,000 persons in the United States," or about 1 in 1,500 people, then you might say WAGR/11p Deletion is "uber-rare". 

• WAGR/11p Deletion Syndrome is named for it's characteristics that manifest in people with the syndrome:
• W:  Wilms Tumor
• A:  Aniridia
• G:  Genital Abnormalities
• R:  Range of Developmental Delays  

People with WAGR show only these symptoms and don't have any other conditions to manage.  (Remember, I had to include a lie....)  http://www.wagr.org/guideforphysicians.html

• The International WAGR Syndrome Association holds an annual event called WAGR Weekend during which families with WAGR come from all around the United States, and the world, to spend a weekend together and have peace in knowing that they are not alone.  WAGR Weekend is a life changing event for many families.  http://www.wagr.org/wagrweekendevents.html

• In 2011, the IWSA announced a name change for WAGR Syndrome, and advocated calling it WAGR/11p Deletion Syndrome.  Much of the recent research has revealed that WAGR/11p Deletion involves a wider range of deletions on the 11th chromosome, so the broader name WAGR/11p Deletion more accurately depicts what is happening with the people who have it.  http://www.wagr.org/iwsanamechangenotice.html  Even more will be learned about WAGR/11p Deletion (jeepers, it was easier to type when it was just WAGR :) ) with the acceptance of the IWSA into the Global Rare Disease Registry which should launch within the next year.   "The goal of the GRDR is to create a resource of de-identified patient information from rare disease registries to help facilitate research and clinical trials; analyses of data across many disorders; and ultimately drug and therapies development for millions of rare disease patients. Long-term goals involve development of open-science principles and a sustainable resource funded and supported by private-public partnerships."  (accessed at  http://www.wagr.org/latestiwsanews.html on 11/18/2013).

You have successfully made it through my little WAGR/11p Deletion tutorial!  While I'm not going to give you a pop quiz to see if you retained the information, I will tell you that you can continue to learn more about WAGR/11p Deletion by signing up to get our monthly electronic newsletter, Mini-WINGS. 

 



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The Invisible Stigma-How to Believe in Myself as a Mother

Today's question posed by WEGO Health for National Health Blog Post Month is about stigmas that exist concerning your (or your loved one's) illness, and how we have tackled them. 

What an interesting question.  I have so many directions I can go.  Do I talk about the times when Evie was growing up and she couldn't talk, nor walk but "looked" old enough to do that?  People at the playground, in malls, and out and about would ask a probing question like, "How old is she?"  That would just open a can of worms that they weren't ready to open, because I would have to respond with an age that they were not prepared to hear.  Then we would have the uncomfortable silence of me thinking, "So...do I defend us and say, 'she has a rare genetic disorder that causes blindness, development delays and often cancer'?"  And the other person is thinking, "There must be something wrong, but how do I find out what?" 

Ultimately, I think the most difficult stigma for me to break concerning my daughter was my own stigma against myself as her mother.  I honestly felt I was a terrible mother for the first six years of her life.  I was reading books on Sensory Processing Disorder and going to conferences for parents of children who were blind and visually impaired.  I was volunteering for the International WAGR Syndrome Association (www.wagr.org) and learning from other's experiences with their kids.  Yet, I just didn't feel I was getting anywhere with my DAUGHTER. 

I realize, in retrospect, that I wasn't a bad mother, I just never had enough time with Evie to even begin to KNOW who she was.  The more time I spend with her, the more I learn "what makes her tick," wow...I just fall in love with my role as mother over and over again; and I fall in love with Evie over and over again.   

So, really, what I've learned in these past few years since I've been blessed with summers off work with Evie, and afternoon walks home from school together is that I had created a stigma against myself.  I, and I alone, was judging myself and holding myself in a confining box of "failing mother."  Just because a mother can't stop her child's different behaviors or doesn't understand the different behaviors doesn't mean she's a bad mother; it just means she might have a curious little creature who may take a little longer to figure out.  A good mother continues to love, and learn and try knew things.

We had a moment a few weeks back that literally had me on my knees...sort of.  I was helping Evie get her leggings on...those can be tough, you get your toes caught in the ankle of the pant leg and it's hard to shake free!  I had done that thing where you roll it up in your hands first, like women's hosiery, and then I slid it over her ankle.  I was kneeling in front of Evie and she had her arms around my neck.  I saw her tense up and she said, "Why did you DO THAT?"  I knew what she was talking about, but I wanted to respond calmly for more time to delay, "Do what?"  It had bothered her that I rolled and ruffled the pants leg...don't ask me why, but it's a sensory thing.  Evie then tightened her grip on my neck and pulled me close to her, she had her mouth next to my cheek, and I've been bit like that before, so I was scared. 

"Matching T-Shirt" Girls XOXO

I winced and pulled back a bit and stared her straight in the eyes without saying a word.  She continued to hold me, but released the tension and said, "Mommy, I'm so sorry." 

She had never said that before.  I felt tears welling in my eyes.  I said, "I know, Honey, but I was really afraid you were going to bite me."  She said, "No, no, I don't want to do that." 

Wow.  She had never said that before either.  "I know, Honey, I know you don't.  I'm so proud of you for stopping yourself.  I'm so proud of you."  I just didn't know how to express to her how MUCH that apology meant; let alone her admission that she had the urge to do something that she REALLY didn't want to do.

It breaks my heart to think of how hard that was for her.  But that is just another step in getting to know my daughter better and better.  Just another step toward making that old stigma, which exists only in my mind, disappear entirely.