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. 

My "Not So Flattering" Moment at the Local Pharmacy

In my commitment to follow the post topics set forth by WEGO Health for National Health Blog Post Month, I MUST write today about the most embarrassing situation that my, or in my case, my daughter's health condition put me in.  Let's face it though, when you read this, you'll understand that it was I, and I alone, who put myself in this embarrassing situation.

First, I'll set the stage.  Jeff was out of town for a training in Iowa.  Evie was probably 2 or 3 years old.  I was working fulltime at a dental office in downtown Madison, about a 40 minute commute with traffic to work.  I had one of the days that Jeff was out of town off because I was scheduled to take Evie to her routine ophthalmologist check up with Dr. Struck.

So, here we go...

I got Evie ready to go to Dr. Struck's.  We had breakfast, we were dressed, and I just needed to give her the morning eye drops for her glaucoma.  I gave her the drops and she wiped her eye and started to fuss.  Evie had a speech delay, so we didn't have a lot of help when it came to determining "what was wrong" when she fussed.  I just ignored it, figuring it was typical toddler behavior. 

I got Evie into the car, opened the garage door and put the keys in the ignition.  Turned them.  Nothing...just a stubborn, hallow click.  Evie noticed something was wrong and started to get even sassier in the back seat than she had already been.  I said, "Evie, we're fine.  I'm going to call Grandma." 

I got out my cell and called Grandma Rita.  I didn't want to take Evie back in the house, because I figured it would only make her more disgruntled to be shifted from one place to another.  I explained my situation to Rita who was at work just down the road from our house.  We agreed that she'd drive over, I'd drop her back off at work, and Evie and I would take her car into Madison for the eye appointment. 

Okay, we are on the road!  Should be smooth sailing now.  But, hmmmm....Evie Jo was still playing the roll of Ms. Whiney Cranky-Pants in the back seat.  What was the deal????

After a LONG, toddler-sobbing filled ride to Madison, Evie and I arrived at Dr. Struck's.  She fussed the whole time in the waiting room.  We were taken back to the room and Dr. Struck said, "Has she been like this all the whole time?"  I was like, "Yeah, I don't what her problem is.  Our car wouldn't start so I think that threw her off."  But he noticed that she seemed to be rubbing her eye and tearing mostly from the right one...THE GOOD EYE.  Yes, the only eye that really still worked. 

Dr. Struck grabbed a bottle of drops and plopped one in Evie's eye and then shined a light on it.  There was a fluorescent yellow stain smeared across her eye.  "That is a very scraped eye, that would explain all the tears.  It must hurt a lot."  He looked at me again, "Did she have an appointment today, or is this why you came in?"  "No," I said, "This was just a regular appointment, I had no idea she scratched her eye." 

A scratched eye is bad news in a regular healthy eye.  A scratched eye is TERRIBLE news in an aniridic eye.  The aniridic eye is very immaturely constructed...it has no iris for protection.  Dr. Struck said that there would be no exam today, we would need to get an ointment to heal the eye.  We had to return to the office the next day so he could ensure the eye was healing properly otherwise we would have to try something else. 

Oh, brother. 

I gathered up my screamy-meamy Evie, now feeling remorseful that I had been so impatient with her fussiness, and we headed for home.  Since Evie was still screaming, AND I had to call work to tell them that I would not be in the next day because I had to take Evie BACK to the eye doctor to check on her scratched eye, AND because I had to pick up the ointment at the pharmacy so we could start trying to heal Evie's eye...I called my mother in law and asked her if she could possibly come to our house and stay with Evie while I tried to do all these things at once.  She said she would, so we picked her back up from work, I dropped her and Evie at our house and I went to the pharmacy to get this precious ointment which would soon restore peace, and tranquility to our lives. 

There was only one problem.  The pharmacy didn't carry that ointment, it wasn't a very commonly prescribed one.  They could order it and it would be in the following day.  Nope!  That doesn't work!  I need to have this eye HEALED by tomorrow.  "We can see if Walgreens in Verona has it."  (There was no Walgreens in Mount Horeb yet.)  Fine.  They called Verona.  Yes, Walgreens had the ointment, I could come and pick it up.

Great.  Whatever.  Now I have the loaner car, another trip to make that would take another 20 minutes at least, and a screaming child to take with me.  I remember something that I had forgotten about at our pharmacy, so I turned back around to the technician and asked, "Can I pick up her blood pressure medications I called in the other day?"  The technician goes aside to check for the prescriptions.  "Those haven't been filled because they weren't cleared through Medicaid yet." 

Steam began to escape from my ears.  My cheeks flushed. I imagine I looked like Fred Flintstone when he would get hopping mad.  "Are you KIDDING me?  I called those in days ago.  Why haven't I been called?   I have a broken car, a screaming child and ointment that I have to drive all around to find, and you can't even fill her blood pressure medication that was called in two days ago??????!!!!!!!!"

That's right.  I WAS the screaming, ranting, tyrannical lady at the pharmacy.  I was sobbing.  I was choking.  I was ready to punch a wall.  "Okay," the manager stepped in, "We can get them filled and we will bring them to your house later today."  I don't recall much else aside from this offer, which DID bring me some peace.  I turned to leave  and a lady behind me in line said, "Is there anything I can do?"  I said, "No, there's nothing anyone can do.  It's all just a mess." 

Off we go to Verona.  I picked up Evie at home and dropped Rita back at work.  Evie and I made our way back down the highway to Verona in search of the precious eye ointment; which was beginning to feel more like an epic quest for the Holy Grail than for a .3 fl.oz. tube of goo. 

I approached the pharmacy counter with my whimpering child in my arms, and likely a frazzled look of insanity on my face.  In my delusional state, I may have even sounded like a mobster as I said, "I...need...ointment...Do ya hear me, Punk?"  Well, maybe I didn't say it quite like that.  Yet...

"I'm here to pick up a prescription for Evelyn Hefty, they just called from the Mount Horeb Pharmacy." 

"Oh, we're still waiting on Medicaid to approve that."

Say what now?  "No, no, no.  That is unacceptable."  I began in my I'm-on-the-verge-of-another-breakdown voice.  "I need it now, I'm not waiting.  I've been driving around all day, with a screaming child, sent from one place to another.  My car broke down.  I can't go into work.  I NEED THAT OINTMENT NOW!" 

"But we can't release it to you until insurance approves it." 

"Give me the ointment.  Give it to me now.  I will pay the difference." (I don't need to explain to you all at this point where my mind was going.)

"We can't do that."

"Listen to me.  I will give you the MONEY.  Give ME the OINTMENT NOW!  How much is the copay after our private insurance?"

"Ten dollars."

"What?  You're putting me through this for $10?  I would give you a hundred dollars right now!!!  Give me the ointment!"

I'm pretty sure I threw the money at him.  I didn't care.  No one cared about me right now, why should I care about them?

I've blacked out on what happened after that.  I got the ointment.  We made it home.  Evie's eye healed MIRACULOUSLY...Dr. Struck was very happy with how it had healed up by the next day. 

On her left sleeve you can barely
see the little bump of the clear plastic tag hanger.
 

A couple days later I had some photos developed and saw a picture I had snapped of Evie the morning of the entire fiasco.  She had on a new shirt from Christmas that said, "Small in Size, Big in Attitude" on it.  My eyes were drawn to her shirt sleeve down by her wrist.  On it dangled, barely apparent to the naked eye, one of those plastic price tag holders that we have all cleverly figured out how to pull off with our teeth or a strong tug.  Sure enough, I had put the eye drop in Evie's eye before the appointment that fateful day, and she had a fairly natural reaction to reach up and wipe the excess fluid away with her sleeve...in the process, that darn price tag plastic hanger-thing had scratched her eye all to heck. 

So...there it is...the UGLY story of my total breakdown at the poor pharmacy staff.  Thankfully they still allow me back in, and I am forever grateful for this wonderful town accepting me and all my unpleasant, embarrassing moments.  Often I would be asked by co-workers when I worked at the dental office, "How can you be so nice to that person when she (or he) is so mean?"  I would just stare off into a distant day in my past and say, "Because I AM that person."   

Twitterpated with Twitter~Favorite Fridays

I love Twitter.  I love the challenge to use fewer words to convey full/rich content.  I love that famous people will favorite, tweet back, retweet or even *gasp* FOLLOW me!  On this favorite Friday, WEGO Health has requested that those blogging for National Health Blog Post Month talk about their 3 favorite people to follow on Twitter.  It's a tough task, but I'll try to narrow my list to fit that requirement.

First and foremost, I love to follow Snappin' Ministries .  This lady loves ministry and is an avid disability advocate.  What more could I be looking for???  I follow three of her lists as well, so I can see more things without having to follow more people.  She has a great "Cool Christians" list, "Disability Ministry" list, and "Wisconsin" list...oh, yeah, and she follows me and added me to all of those lists.  *love it* *love her*

My newest fave is Surprising Treasures.  I found her through a Snappin' Ministries list, and just had to start following her especially because I love her blog, also called Surprising Treasures!  Cindy reminds me of how I want MY attitude to be, and that helps me reset my compass for my true north everyday.

Finally, I have to just enjoy following something for the sake of following it.  It's not ministry, it's not disability; folks, this one is hockey.  I follow Andy Johnson because he does some great coverage of Wisconsin Badger Hockey.  I love his Wisconsin list which has all the past, present, and future Badgers who are on Twitter.   It's a fun way to read the shout-outs to the fans for coming out to a game, to see how former players who are now NHL players STILL follow Badger hockey and stay close to their alma mater, and to just watch them talk smack to one another. 

It's no surprise that with as much as I love Twitter, I'm not only on Twitter myself (www.twitter.com/tammiehefty) but I also manage the Twitter page for the non-profit organization, International WAGR Syndrome Association (supporting people with WAGR/11p Deletion Syndrome).  You can follow me, or the IWSA (www.twitter.com/11pdeletion), at anytime! 

Have a happy favorite Friday~and be SURE to check in tomorrow for one of my favorite entries (I had to type it in advance because I'll be at a conference on Saturday)...it's about my most embarrassing moment as a mom to a child with a rare disorder.  That TOO was a hard list to narrow down, but I'm sure I nailed it by picking the one I did.

When I Just Want to be Normal

WEGO Health's National Health Blog Post Month has gotten me thinking about and writing about things that I haven't give much time to in the past.  Today our assignment is to write about how, when, and what we reveal about the chronic illness that we, or our loved one, suffers from.

Fortunately, I was in a wonderful job as a dental office manager when I gave birth to Evie.  I'm so thankful that the leaders of the dental group knew me, knew my work ethic, and knew my heart; otherwise I don't think it would have been quite as easy to "believe" that I needed as much time off after returning from maternity leave as I did.  Evie's first year of life was filled with eye exams under anesthesia, ultra-sounds, and eye surgeries.  We were blessed with an amazing daycare provider who would allow me to bring Evie back after she had received her post-surgical check-ups; and she would fearlessly deliver the 12 + eye drops required for Evie's full recovery. 

Also, I was blessed to work with doctors who put family first.  There was a day that I had a complete mental breakdown and had to call in to work and say, "I just can't stop crying!  I don't know what to do."  I was told to stay home, rest, and allow myself some time while Evie was at daycare and I could just take care of myself.  The next day I went in to work and one of the doctors, Brad, pulled me into a meeting room and we talked about what had happened the day before.  I told him I started panicking about what our future would be.  Would Evie have autism, would she have cancer, would she have behavior issues; what was our life going to look like and how horrible of a mother was I to look at other children and to think, "Would Evie be able to do THAT if she didn't have WAGR?"

Brad then explained to me that what I was experiencing was normal.  I could actually benefit from treating myself as a person "recovering" from a traumatic experience.  He told me that I needed to recognize something; no matter how much I worried about it, I couldn't control what would happen tomorrow, let alone 5 or 10 years down the road.  Brad recommended I get the daily affirmations from Hazelden so I could remember to stay focused on "today."  The co-workers I had, that God put in my life, were no coincidence.  He surrounded me with just the right people to get me through.

Family Medical Leave Act (FMLA), the law that enables a person to take a set period of time off for a health condition without jeopardizing their job, helped cover my maternity leave.  It takes a year of working for your FMLA to renew.  It was no coincidence, I believe it was a God-incidence, that my FMLA renewed on September 14th of 2005 and Evie was diagnosed with cancer on September 22nd, just days later.  I had the law to protect me, but God to orchestrate it all.  In order to maintain our financial solvency, I had to work while Evie underwent chemo.  I worked Mondays through Wednesdays, 10 hours a day to maintain our health insurance.  My mother in law took off from her job those days so we didn't need to expose Evie to all the germs at daycare.  (Another blessing, another miracle, was that our daycare provider held Evie's spot at daycare even though we couldn't pay her for those 18 weeks.  That is a TRUE sign of God's provision.  Thank you, Doni...you will never know how much you mean to our family.)

Thursday was chemo day, and I'd take Evie to the appointments, and Friday was "the day after."  They were never easy days, and often we would end up back at the clinic because she would spike a fever and need antibiotics to treat pneumonia developing in her lungs. 

Back to the topic at hand though!  I'm so glad I didn't have to "explain" all of this to a new employer.  I think it would have been overwhelming to say the least.  So, for Evie's first 6 years of life, I never worked for anyone but those initial doctors who were with me when Evie was born.  They had faith in me, faith in God and were always so supportive of our family. 

Once Evie started getting "up there" in grades at school, it became evident that she would need more help with homework, as well as more support from her "mommy" who would observe things and try to make them right for her (like if the homework was too overwhelming).  I never really had time to take her to all the appointments she SHOULD have had either while I was working full time!  So, we ended up only do the "MUST-HAVES" like oncology, ophthalmology, and nephrology.  I left my job at the dental office and started to stay home with Evie a few summers ago.  This took some hardcore budgeting, but it was well worth it.  I started to go through all of the "recommendations" for Evie's health.  We were supposed to get her orthotics to help her walk, speech to help with her speech apraxia, and neuro-psych to help with her anxiety.  All of this was too much to handle with my full time job.  I signed on to be a substitute teacher and paraprofessional in our local school district and that became a dream come true. 

The people in the school district knew me and knew Evie.  Again, I didn't have to explain a thing!  AND, what's more, I didn't have to ask for time off as a sub, which always felt mentally draining as a manager.  To me, asking for time off was like saying, "I can't handle my job and these appointments too.  I can't fulfill both roles in my life."  For many years, Jeff took Evie to many of her appointments because at his job there was comp-time he could build up and use.  But I felt out of the loop and like an inadequate mother when I would miss all that time with Evie and her doctors. 

Who wouldn't love more time with this girl?

I'm now a permanent part-timer at the high school in town.  Evie and I are able to walk home from school together (which has diminished her behavioral issues after school that she used to have.)  The time that I have now with Evie has shown me that I CAN be a good mother to her.  I think I struggled for years feeling that I really had no relationship with her~I would be at work before she would even wake up, and would get home in time to feed her and bathe her and get her into bed.  That was no way for me, or for my family to live.  I'm glad I toughed it out at my full time job as long as I did, because I will never take this time I have with her now for granted.  I made a deal with God that if I got lazy and started to just take naps in the morning, or not use the free time for volunteering and giving back, that he could send me back to a full time job like I used to have.   Let me tell just say, I am a staying busy, but it's what works for me and for my family now. 

So, I guess it's clear to see that I haven't really felt the need to explain much to my employers.  I often feel I talk about Evie and WAGR (www.wagr.org)too much, because I think it often connects me to others.  I may meet someone who is blind, or has cancer, or is the parent of a child with sensory issues...I start talking about Evie, because it's common ground, it's a way to feel a sense of community, togetherness, unity.  I have mission to reach out to the hurting and connect with them, so how can I hold back when I know that Evie has taught us so much, and we have so much to offer others.  Educating others on rare diseases is a way to create a more universal understanding of "pain" and "recovery" from it.  Hopefully others can see it that way too, and not feel the need to hide their conditions. 

Prepared for a Purpose~How being the Parent of a Child with Rare Disease has Changed Me

Today is my 8th day blogging for WEGO Health's National Health Blog Post 30 day Challenge.  Our assignment today is to write about how we have changed since being diagnosed, or becoming a caregiver to someone diagnosed with a chronic health condition. I wrote an article for the International WAGR Syndrome Association's newsletter, WINGS, back in 2005 about what it felt like when Evie was diagnosed with WAGR; it's called When It Hurts Like Thunder.  That's what it felt like, the WAGR diagnosis was a loud rumbling thunder inside.  A raging storm from which we could not escape.  One cannot go through a storm like this without being transformed.

As painful and lonely and scary as this life can be, however; I feel as though my life has been a long hallway that I have walked down. There are thousands of doors lining the hallway, and I have been in every single one of the doors behind me, and I will have to go through all of the doors ahead of me at some point in time.  At the time of Evie's WAGR diagnosis, I was at a teeny-tiny door with zebra striped material covering it.  There was a fuchsia colored peep hole-but as with most peep holes, I couldn't look in from the hallway, so I didn't know what was inside.  I opened the door and carefully negotiated my way in.  To my greatest surprise, I found my Grandpa Turk sitting inside. He had died nearly two years prior; but there he was smoking his corncob pipe.  "Oh, geez, kid," he said, "What the heck happened here?"  "I don't know, Grandpa."  I replied in tears.  "Is this what it felt like when Joel was born?" 

Evie and Joel on Evie's 1st Christmas

My uncle Joel had been born with Down Syndrome, and that was in the era when people would often just put the baby in an institution.  But Grandpa Turk and Grandma Joan had denied the majority and taken their baby home.  Joel isn't much older than I am, and he's one of the brightest lights of our family.  My grandma and grandma, and mom and dad had ALL been extremely active in the development and strengthening of the ARC of St. Croix Valley in MN.  I grew up going to visit and playing with the "handicapped" (as we said in the 80's) children in the room at school where my mom was a teacher's aide.  We went to all the ARC dances and picnics.  Special Needs was just another part of our life; not a foreign idea.

"Well, Kid, this is it." Grandpa said.  "You have been prepared for this.  Weren't you Summa Cum Magna or something?"  "Grandpa, this isn't what I was taught to do in school!  I don't know how to be mom let alone to a baby with rare disease."  Grandpa chuckled, clutching the pipe tight between his teeth as he sat back in his lawn chair.  "We didn't know where to start either, Kid.  We just took him home and loved him."

"Okay, okay...yes...we can do this..." I assured myself aloud.  "I love you, Grandpa," I said as I prepared to leave through the tiny door.  I looked through the peep hole.  Out in the hallway I saw TONS of people!  My mom and dad, Jeff's mom and dad, my sister, Jeff's brother and my sister-in-law...cousins, aunts, uncles, grandparents, friends, teachers....they were all crammed into the hallway of my life.  I opened the door and crawled on my hands and knees through the door which seemed to be getting smaller by the minute. 

As I stood up I realized that this crowd of people was an awfully silent bunch!  There was not a sound to be heard...the hallway screamed with silence.  My stomach turned when I stood up; the hallway was empty.  Wait a minute!  I couldn't do this alone!!!  I turned to re-enter the safe zebra-room with Grandpa, but the door was now the size of a fairy door in a knobby old trunk of a tree.  I couldn't fit back into the past from which I came.  I could only go forward. 

I found Jeff and Evie when I entered the next door down.  We were suddenly being inducted into a Rare Disease Hall of Fame as coaches for team Evie, however the future was scary and uncertain.  Cancer?  Blindness? Developmental delays?  What was Evie's life going to look like?  What was our life going to look like?  I didn't know, and I couldn't control it anyway.  But, I did start to see what Grandpa had talked about.  I had been prepared. 

The strong, solid, ivy-covered door I had walked through to my quantitative studies in grad school had seemed futile as I never really utilized research and statistics in my work as a manager of a dental office, but my research skills certainly came in handy when reading through what little research there was on WAGR.

There had always been doors covered in pencils and blank paper which had led me into rooms for writing.  I had even started taking a "mail-in" writing course during my pregnancy with Evie.  I completed the course by changing direction and, rather than writing children's stories, I started writing about our experiences with WAGR Syndrome.  Indeed, the doors to my writing had finally flung wide open.  I was inspired, focused and driven; no longer searching for my niche.  I would write about WAGR, my faith, and the world around us. 

Several more doors through which I had walked were covered in question marks, and balances of justice.  I had studied Communication; argumentation and mediation, as an under-grad and graduate student.  Now, those skills that I studied and learned have been called into practice time and time again.  I had to file appeals to get county services for Evie after she had been denied.  I had to figure out how and when to tactfully ask our doctors to seek alternate answers for some of Evie's more tricky health anomalies.  I had to figure out how best to communicate with all of Evie's teachers and therapists, and my communication needed to be clear and consistent. 

I discovered that several of the doors I'd walked through; the ones covered in clouds, stars, and a full, magnificent moon, had led to my dreams which prepared me for certain experiences.  For example, I had dreamt during my pregnancy about coming home from the hospital with a baby girl.  In my dream, I sat down in a chair in our living room, cradling the baby in my arms.  I looked down at her and saw wispy-fine hair on her head, and realized that she was a toddler actually.  Now why would my baby come home from the hospital as a toddler, and why did she have little to no hair on her head as a toddler?  The answer came two years later.  We had come home from the surgery Evie had to remove her port-a-cath after chemotherapy for her cancer was complete.  When I sat down in the recliner, cradling Evie in my arms, I looked down at her and instantly grew faint.  This was not just deja vu; this was my dream coming true.  She didn't have hair because she had been through 18 weeks of chemo.  She was a toddler coming home from the hospital, not because she was a newborn, but because she had just undergone surgery.  My dreams during Evie's pregnancy had prepared me for events that would take place during her life. 

Most of the doors I had walked through in my past were covered in crosses, Bible verses and shepherd staffs.  Time and again I have turned to God in my most desperate hours.  When I would be made fun of for hanging out with the kids who had special needs, I turned to God.  When the kids at school told me the only reason I got good grades was because I didn't have any friends, I turned to God and he said that I would be rejected because of him.  When I needed rest from all the activities I joined in college, and was trying to balance my desire for good grades with the fact that I finally felt accepted by my peers; God called me to the pasture and laid me down for rest.  And now, whenever life grows confusing, uncertain, overwhelming and chaotic; God still comes to me as my shepherd and comforts me.

So, how has life changed, how have we changed since becoming the parents of a child who has WAGR?  We have become focused on our priorities, stronger in our faith, outspoken concerning justice for those with disabilities, and more forgiving of others as we know we have to rely on mercy for our many short-comings.  I know that we are here and experiencing these heart-breaking situations that come with Evie's rare disease, because God is breaking us down and building us back up.  There's a popular analogy out there concerning God as the blacksmith and us as his metals.  The blacksmith must hold the metal in the searing fire in order to purify it until it shines so perfectly that he can see his own reflection in it. 

Then I will purify them and put them to the test, just as gold and silver are purified and tested. They will pray in my name, and I will answer them. I will say, “You are my people,” and they will reply, “You, LORD, are our God
Zechariah 13:9

I would like to see less scary doors in my future, and I'd hope the hallway contains less pain; both physical and emotional.  But that is not my decision to make.  God knows my days; the number and contents of them-He knows Evie's as well.  I will continue to open the doors he places in front of me, knowing that even when the hallway is silent, he has surrounded me with angels that will strengthen me and keep me safe. 

The Healing Power of Music

The song "Thank you for the Music," sung by ABBA in the 70's and 80's has a great line, "Thank you for the Music, the song their singing, thanks for all the joy they're bringing, who could live without it?  I ask in all honesty, Where would I be?  Without a song or a dance what are we?"  That pretty much sums up the power that music has over me.  I can be transformed by one musical note.  For National Health Blog Post Month, our assignment today is Top Three Tuesdays: Name three songs that can get you out of a low point. 

It's brutal trying to scale down my list of favorite songs.  Music makes my world go around, and there is always a song that seems to rise up from the others and become my anthem for different seasons of my life.  During Evie's chemo, for example, it was Held by Natalie Grant.  Songs seem to surface amidst the stormy waters of life and carry us through until we might find some still waters. 

Currently, my songs that inspire me, and transform my day are Go Glow by the Newsboys, American Noise by Skillet, and, and song that always seems appropriate to me is Martyrs and Thieves by Jennifer Knapp. 

I sing at the top of my voice when I listen to any of these songs, and they are usually the ones I'll sing in the shower.  Go Glow reminds me to shine~everyday.  People watch me and know that I'm a Christian~but I'm still also a sinner, here in a body of the earth, not of heaven.  So, I need songs like this to lift me back up when I let this world get to me.  This song also makes me think of Evie and how she glows.  Her worship of God is what God wants all of ours to look like, but she doesn't have that "social filter" the rest of us do which makes us hold back.  When we go to concerts people will say, "Can I photograph your daughter?"  They want to capture what she has in her spirit.  I'm sure the pictures don't do it justice, however.

American Noise is so perfectly timed for today's society.  There really is a lot of noise out there; horrible things that are happening.  The typhoon in the Philippines, murders in rural Wisconsin, families falling apart, drugs taking lives and dragging them straight to hell in the meantime.  Being a mom of a daughter with WAGR, I find the noise is often in my head.  I try to sort out appointments, medications, and priorities.  I try to turn off the voices of fear and doubt in my head.  There is so much NOISE, NOISE, NOISE, NOISE (to quote the Grinch who stole Christmas.)  But, in American Noise we are encouraged to "lift up our voice, take all the noise and make it into music."  Well, now~how lovely is that?  My blogging here is a form of me transforming noise into music. 

Last, but not least by any means is Martyrs and Thieves.  That song goes straight to the core and gives me peace.  It's a song about the redemption we have through Christ.  It's a song about our sinfulness, the inability we have to flee from sin because we have a sin nature, and how Christ can make us Kings and Queens someday if we ask him to be our Savior today.  I mess up all the time.  I know what God wants me to do, but I am stubborn and selfish.  And this song takes my resistance and shows me how much I am loved and that my life is worth more than throwing it away for selfish desires of the flesh.  As long as I'm here, I'll be a sinner, but hopefully that will just show others how great our God is.  "Like a lamp on a hill, Lord I pray in your will, to reveal all of you that I can." 

Under Pressure~Serving in the 11p Battallion, 350th Infantry, 1st Wisconsin Regiment

Poise, Confidence and Grace under Pressure

I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
Chris Tomlin~ Whom Shall I Fear, God of Angel Armies

Today we honor and remember our Vets who have protected our freedoms and our lives out of love for our country.  The WEGO Health Blog assignment for #NHBPM, on this Veteran's Day; (the 11th day of the 11th month), is for us to write about something we must do at a particular time of a particular day in order to deal with our (or in my case, my daughter's) chronic illness.  (That just felt like a whole lot of words in a really little space). :)

For Evie, the things we  need to keep on top of, and keep at as consistent a time as possible are Evie's medications.  She takes two meds for her high blood pressure, a prophylactic antibiotic for her recurrent UTI, an eye drop for her glaucoma and an ointment to keep her eye from becoming too dry.  Blood pressure medications are usually cumulative, or they build up to a point that they should be "constantly" in your system.  So we try as much as possible to keep those with breakfast and shortly after dinner.  We are also supposed to take her blood pressures daily around the same time to make sure we're comparing apples to apples.  The eye ointment can make her vision blurrier than normal (she's legally blind) and makes her eye goopy, so we keep that at night right before bedtime.  She's not as tempted to rub her eyes if she is getting ready to go to sleep. 

Besides medications, we have to keep on top of all her medical and therapeutic appointments.  Being that Evie has WAGR/11p Deletion Syndrome (www.wagr.org), and is at increased risk for developing Wilms Tumor, we started having kidney ultra-sounds when she was 6 months old.  She was diagnosed with and treated for Wilms Tumor at 15 months old until she was 18 months old.  I can say that one NEVER skips or misses a scan after that.  I usually start dreading the day early in the week of the appointment because of the "scanxiety" Even though Evie is now 8 years cancer-free, that scan-day can sure take me back to the days of chemo appointments, port-accessing, waiting for labs to ensure blood counts weren't too low...yuck.  Makes my stomach turn just thinking about it. 

We see ophthalmology every 6 months as well.  Back when Evie was an infant and we had trouble controlling her glaucoma, we felt like frequent fliers to Dr. Struck's office.  But, once we got the pressures under control, and her eyes seemed more "stable," we were able to spread out our visits. 

The first few years of a child with WAGR's life are VERY intense with lots of appointments, lots of medications, and lots of diagnoses.  I felt like we were hearing about something that was "wrong" constantly.  We always assure the new moms, dads, or caregivers who join our list serve support group that "it gets better."  And it does.  Quite honestly, whenever we would graduate out of a regular visit with a therapist or doctor, I would often cry.  They would become the "reliables" in my life.  I'd look forward to seeing Piper at OT, or Barb at Speech, or Betsy at PT.  That's a great, and positive part to our WAGR journey; I would never meet these wonderful people without WAGR! 

So, basically, our "11th hour" rituals are just keeping on course with medications and appointments.  The predictable, the routine, the uneventful have become cherished blessings in our life because for so many years it seemed like we just couldn't cut a break. 

From a "military" perspective, it's easy to see that we enjoy our moments of "peace."  It's a good day when I don't have to don my uniform and go into "Gorilla Mom" mode;  trying to be tough and not let Evie see my fear; trying not to show my tears through her tears.   That being said, Sergeant Tammie and Sergeant Jeff will obey any and all orders that come down the line of command in order to best serve Staff Sergeant Evie Jo.  We are proud soldiers in the 11p Battalion, 350th Infantry, 1st Wisconsin Regiment.  We serve our rare disease with other amazing soldiers, and our battle cry is: In God We Trust.

¹⁰ Finally, be strong in the Lord and in his mighty power. ¹¹ Put on the full armor of God, so that you can take your stand against the devil’s schemes. ¹² For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. ¹³ Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God.¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.
Ephesians 6:10-18 NIV

What Else Can We Do?

Lord Above, I need a Miracle... (quoted from Third Day's song Miracle)

Everyday I anxiously await my next chance to sit at my computer and write about the "next" topic for the 30 Day Blogging challenge from WEGO Health in celebration of National Health Blog Post Month.  Today's assignment is to write about alternative medicines for the health condition with which we live.  Now THAT is an interesting topic to explore...

The first pressing health concern we had with Evie was when she was just a newborn.  She had colic.  It may not have been a life-threatening illness for her, and colic certainly does not only strike those with WAGR; but it was sanity-threatening for me.  At the height of her colic cycle, Evie would start crying at 10 am, and wouldn't "turn off" until between 8 pm and 10 pm that night.  Yes, a solid scream-fest for about 10 to 12 hours a day.  We made a couple of trips to the ER because the doctors weren't necessarily comfortable just diagnosing "colic" for a baby who had a strange condition like WAGR.  They didn't want to just stamp her forehead with "cranky baby," and for that we are thankful. 

I had visited my midwife for my six week check up and she asked how things were going.  I talked about the colic and how horrible it was and how crazy and isolated it made me during the day.  She suggested taking Evie to see a chiropractor.  We quickly scheduled an appointment with our local chiropractor and after her first adjustment Evie fell sound asleep for 4 hours...yes...sleeping in the middle of the day...I hadn't seen her do that in weeks!!!  We took her back for quite a few adjustments over the course of the next year, and thoroughly believe it was a great therapy for her and helped her avoid many ear infections and colds that may have otherwise occurred. 

Aside from Evie's colic, the rest of the next few "ailments" are not things that are common to most infants and toddlers...unless, of course they have WAGR/11p Deletion Syndrome.  At three months old, we learned that Evie had a pretty raging case of glaucoma as well as cataracts.  She has an eye condition called aniridia, and that means there's no iris in the eye.  The eye basically stopped developing at some point which means all the systems of the eye are under developed.  She had several surgeries and countless exams under anesthesia in her first year of life to try to get the glaucoma (eye pressure) under control.  We had eye drops, of course, but the pressure needed to be decreased to help her be comfortable and to keep the optic nerve and lens of the eye healthy. 

The other diagnosis with which we were faced early on was Wilms Tumor.  Evie, having WAGR, had a 50-60% chance of developing Wilms Tumor (solid tumors in the kidneys).  We found the first signs of tumors when she was 15 months old.  She had been getting ultra sounds since 6 months of age in order to watch for the tumor development. 

Now, when one has a genetic deletion, as Evie does, involving the 11th Chromosome, then there are several genes that could be deleted; they include, but are not limited to the PAX6 gene and the WT1 gene.  These genes affect eye and kidney development.  Thus, it's obvious why Evie suffered from the symptoms that she did.  Because this is a genetic deletion, because her DNA structure is what makes her susceptible...I find it very unlikely that many "homeopathic" remedies could prevent or cure these conditions.  Therefore, we don't make her eat broccoli to prevent a recurrence of cancer, we don't avoid the sun (but we are smart about sunscreen), we don't get all militant about vitamin supplements or anything like that.  Evie underwent a partial removal of her kidney and 18 weeks of chemotherapy in 2005-2006.  She is legally blind as a result of her eye condition.  We battle her high blood pressure, which was a result of the Wilms Tumor and subsequent treatments, with a low sodium diet, weight-control, and medications.

We've done physical therapy, speech therapy, and occupational therapy as ways to counteract many of the neuropathy that results from the chemotherapy.  They have all helped tremendously.  "Brushing" therapy, Modulated Music therapy, and Joint Compressions have proven to be some of the most rewarding for Evie in helping her learn to control her anxiety and adjust to her sensory needs.

What has proven to be THE most effective, broad-spectrum, alternative medicine for Evie, myself, and my husband has been prayer.  We don't deny Evie any medical treatment that is required, don't get me wrong here.  However, we supplement the modern day medicine with a hearty helping of prayer and petition to God.  He has instructed us not to worry about anything, but instead to pray about everything.  God is Evie's greatest physician, and our greatest advocate.  God has answered numerous prayers that we have lifted up to Him.  He once answered my prayer so immediately as I was prayer journaling when Evie was taken back for surgery for her glaucoma; that as I was writing, the doctor returned to our room and said, "Well, no surgery today.  We got her sedated, I took her pressures and they were fine."  Did she need surgery later on down the road?  Yes.  But she didn't need it that day.  God gave us a break that day; a rest from our stresses.  God gave us a miracle when we needed it the most.

God answered my prayer on the way home from the one of Evie's unplanned trips to the hematology/oncology floor of the clinic in Madison. Evie had spiked a fever and she and I went in so she could get IV antibiotics; it turned out she had pneumonia.  I was crying out to Him on our way home in the car; asking Him where He was in the midst of all of this.  I said, "I know you're here.  Show me!"  When I got home with Evie, I laid her down and checked the mailbox.  In it was a card from a family member (who wishes to still remain anonymous), and a check for $1,000.  I just sat down and bawled my eyes out.  Yes, God still does miracles, God still answers prayers.  Some people would explain those things away..."You received good things because of your attitude."  "You receive good things because you do good things."  "It's the energy around you that makes people want to do nice things for you." 

While we sit in this world, trying to make sense of all the pain and suffering, why, oh why, do we deny God's miracles when they happen right in front of us?  We ask, "Where is God?" and yet He shows himself to us everyday! 

Evie has a story to tell.  God shows His power and might in her, and through her, by taking her weakness and making her strong.  I cannot deny His presence in our lives.  I will not turn my back on the greatest medicine available to all of us.  It doesn't come in a bottle, and it requires no prescription.  National Healthcare is not necessary for all of us to have access to this miracle drug.  The Creator of the Universe loves us so much that He has promised this medication; with the ultimate healing power, to all of us if only we ask for it.  The main ingredients of this medication are love, mercy, and forgiveness.  Finally, the cost of the medication is 3 nails, one cross, and King with a blood-stained crown of thorns.