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.   

Just Admit It: The Thing we "Don't Talk About"

The Dress that I didn't Know She'd Wear

Today's assignment for WEGO Health's National Health Blog Month 30 Day Challenge is to "write about something that people do but don't like to talk about or won't admit doing."  My spin on this topic is that there is a question that people hate to ask when they learn our daughter has WAGR/11p Deletion Syndrome, but we know that it's the proverbial "elephant in the room."  What is Evie's life expectancy?

I'll answer that right upfront so I don't prolong the anxiety any longer than necessary.  We don't know.  WAGR/11p Deletion Syndrome  hasn't been "around" long enough to know that, and there aren't enough cases to provide a statistically significant answer.  I CAN say that we know of people with WAGR who have lived into their 40's.  And, I can say that with continued awareness and research we will see that life expectancy grow, just as it did with Down Syndrome. 

But I'll share today the feelings and thoughts that I personally experienced when Evie was diagnosed with WAGR.  We had been given a cute little 18-24 month sized dress with matching hat when Evie was born.  It was brilliant gift, because we know that one receives lots of newborn to 6-9 month items at the birth of the baby.  I loved that dress; but when we got the WAGR diagnosis and began reading about cancer and kidney failure, I thought to myself, "Will I ever see my daughter wear this dress?" 

We found the International WAGR Syndrome Association on-line (www.wagr.org) through our wonderful general practitioner.  When I finally got the courage to sign up for the on-line support group, (I just wanted life to be as "normal" as it could be while I was on maternity leave), I was thrilled to receive an e-mail back from Kelly stating, "My daughter Caroline is 22."  Hallelujah; I found a ray of hope.  After joining the support group, and "meeting" all the families; sharing the joys, the frustrations, the heart break, the challenges and the victories, I realized that our diagnosis was the not the end; it was just a beginning. 

Joining the host of families around the world who love and care for their children, their nephews and nieces, their grandchildren with WAGR has been one of the most rewarding experiences of my life.  Each time a new family joins our groups, we each have to face our fears all over again; but what we also are able to share is the overwhelming joy that people with WAGR seem to exude in every smile, every laugh, every dance, and every song they sing.  We have our own language, our own unspoken understanding that we all face the same fears, but we also all face the future together. 

So, admitting that we don't  know how long we have; that doesn't really mean anything to me anymore...we don't know how long ANY of us have.  What matters is how we spend the time that we DO have.  I sometimes spend it in tears of frustration over the number of appointments we have to take Evie to, or over the thoughtless things that some strangers might say.  More often though, I spend my time in awe of how far we have come, what we have experienced (including LITERALLY modern-day miracles like not having a heating bill for two months while Evie was on chemotherapy), and how God continues to bless us THROUGH Evie and WAGR.  It's God's goodness to us that moves me to write, to volunteer, to sing, and to continue to live one day at a time.

For those who know us, they know that we never really stop going.  The question  about life expectancy is likely why.  We will never take one day for granted because we realized that each day is a gift.  As a man once wrote for Carlton Cards (poor guy signed away a gem when he wrote it for a greeting card):

Life is not measured by the number of breaths we take but by the moments that take our breath away

Words to Inspire, Challenge, and Encourage Me

As I participate in WEGO Health's blogging challenge for the month of November, I am especially excited about Favorite Fridays.  Today I am asked to write about my three favorite quotations.  Since I have so many people who have inspired me along my journey, and so many words of encouragement as my family and I have been thrust into the world of rare disease with our daughter's diagnosis of WAGR/11p Deletion Syndrome, it is QUITE difficult to narrow my favorite quotations down to three!  But I will try...


First I'll identify my most INSPIRING quotation.  They are the words spoken by Jesus in the Garden of Gethsemane on the night of his betrayal, shortly before he was arrested and taken away to his death sentence.  "Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine." Luke 22:42

How many times have I cried out the same thing?  It gives me inspiration to know that the King of Kings, the Rock, the Firm Foundation, that even HE had a moment of fear in what was being asked for him to do.  That is why I named my blog what I did!  My Cup Lifted.  God has given each of us a unique life, a one of a kind journey for us here on earth.  When I think about what God has asked Jeff and I to do, what he has asked Evie to do, what he has asked all of our friends and family to do as we learn and live with WAGR/11p Deletion Syndrome...sometimes it becomes overwhelming.  But Christ, in his final hours took his cup, lifted it to God and said, "Not my will, but yours..." and I do the same now.  Whatever your will, God, give me the strength, peace, and faith to endure and finish this race.

My second quote I chose is one that CHALLENGES me.  John F. Kennedy quoted it, but the phrase actually originated from a man named Phillip Brooks.  He said, " Do not pray for easy lives. Pray to be stronger men! Do not pray for tasks equal to your powers. Pray for power equal to your tasks."  Wow...so I'm not supposed to want things to be easier, I'm supposed to want to grow stronger? 

Yes, that is exactly it-And on those days when I wish I could just run away from all my obligations and start anew, I should be praying to be stronger, not for my load to be lighter.  And when I feel overwhelmed by the all the "plates that I spin", I need to realize that "God does not call the equipped, he equips the called." (I would love to cite this, but as Barbara Brooks wrote about this quote:  I once googled that to find the original quote and it is attributed to everyone from Aristotle to Oprah!).  In essence, my challenge is to remember that I'm not on this journey alone, and that God gives us everything we need while we're here on earth. 


My final "favorite" quote is one that provides ENCOURAGEMENT to me.  It comes straight from a missionary known throughout the world.  Billy Graham wrote, "My beloved suffering saint, everything is under control. His will for you is being wrought in the whirlwind and in the storm, and His blessed presence is in every cloud of distress that crosses your pathway. The Master Gardener is purging your life so that you might bring forth more fruit and more glory to Christ in this world and in the world to come."  (Accessed 11/8/13 http://www.billygraham.org/articlepage.asp?articleid=1094).  In our fear, we are not alone; in our doubt, we are not alone; in our loneliness, we are not alone.  Not only are we not alone, but we have a Master Gardener who is pruning off the dead parts of our lives and giving new energy and nourishment to the parts that are able to bear fruit!  I can rejoice in pain and suffering because it means that I will be the bearer of greater gifts in the end.

I love that we have so many wonderful philosophers, leaders, teachers and preachers from whom we can draw inspiration for today, and hope for tomorrow.  In the end, however, it is plain to see that all I have leads me back to the One who has me, my Father in Heaven.  He is patient with me in my doubt, and loving to me in my fear, and strict with me when I fall out from under His grace-and every night He gives me slumber so I can awake to His new mercies in the morning.


 

My Magical Bag of Tricks

I love handbags, and own many. They vary in size, color, shape, and style. As the mother of a child with a rare genetic disorder called WAGR/11p Deletion Syndrome, however, I find that I carry some interesting items from time to time.

The first, and most critical things I carry are fidget toys.  Evie is "sensory-seeking", so she wants to feel different textures and experience lots of sensory input.  Most often, the fidget toy is a type of prickly rubber ball.  She can roll it in her hands and feel the light poking sensation of the prickles.
 

Another sensory helpmate I carry is a chewy.  This is a rubbery item for Evie to gnaw away at, rather than gnawing on her little fingers. Evie's chewy is shaped like a "P" and textured with bumps.  Some of the chewies are even flavored.
 

We also have chewelry for her.  These are chewing necklaces and bracelets that are plastic and coiled together much like the key chains people wear on their wrists.  We've had to establish rules for the appropriate uses of chewelry.  Being a victim of the laws of physics, I have been hit too many times with high-speed, projectile saliva. Objects in motion tend to stay in motion; therefore, Thou Shalt not Flick Thy Chewelry out of Thy Mouth is the most important rule.  

Since I've already got our taste buds going, I may as well mention fruit snack. There's nothing better than a little snack to help pass the time.  Fruit snacks are nicely sealed to stay fresh; small and squishable enough to conserve space; and, if they are shaped like characters from some favorite TV cartoons, then one can even make the snack last longer by using the characters to act out a skit. "Don't play with your food" is a mommy-ism from a simpler time.
 

We don't just play with our food.  I like to carry some cards and dice.  Waiting with nothing to do is torture; especially waiting for a blood draw!  I keep Evie busy with card games and dice games. Dice are especially portable, and provide a nice "fidget" activity as well.

Finally, I have to carry hand sanitizer with me.  The primary reason I carry it is because Evie has a poor immune system.  She had chemotherapy to treat her Wilms Tumor between ages 15-18 months. During, and for several years after, the treatment, Evie seemed to catch any and every flu-bug around.   Usually these bugs would turn into pneumonia and a UTI, (urinary tract infection).  As one can imagine, I became quite germaphobic.

The other reason I like hand sanitizer is because no two bathrooms are alike.  In one bathroom the faucet is manually turned on and off while in another it is turned on by a sensor.  Some sinks are closer to the "washer" while others are set back far into the recesses of some decorative back splash.  Often, despite Evie's desire for independence, she is either too short to reach the faucet, OR the counter top is so full of water from the previous sink-patrons that Evie's reach toward the faucet would result in an unwelcome soaking of her sleeves.  I determined that hand sanitizer was definitely the way to go for this mommy.

So, there it is. The most important, gotta have it, "don't-leave-home-without-it" contents of my magical bag of tricks.  While I may not carry a coat rack like Mary Poppins, I do have a handy-dandy little arsenal of boredom-busters. I will sometimes even include a little a spoon and some sugar-substitute for when life's nasty medicine just won't go down.

Restricted Diet: Avoid Sweets and Sins

I've struggled with managing my weight, and I've struggled with managing the condition of my soul.  I really don't find that they are very different.

In order to maintain a healthy weight (at 5'3 I once weighed 165 lbs. and I now weigh 127 lbs.); I have to log-in to my app on my iPhone (myfitnesspal) and track my calories daily.  I look at how many calories I've consumed, subtract out the calories I've burned with my workout, and I have to stay around 1500 calories a day to maintain my weight.  Some people think, "Why are you trying to lose weight?"  I'm not!  I'm trying NOT TO GAIN weight.  Any and every time I stop tracking my calories; tracking every little thing I put in mouth, I WILL GAIN WEIGHT.  I'm sorry, but I cannot afford to buy a new wardrobe every 6 months simply because I have the desire to eat a jar of peanut butter.

Sin is the same way...but for some reason, we don't say to people, "Why do you study your Bible EVERYDAY!!!"  "Aren't you born again?" ("Aren't you skinny?"  "Why are you tracking your calories?" Sound familiar?)  Number one, we typically don't meet people who study their Bible every day.  Just like you might not meet someone who tracks their calories every day.  But I can tell you that I must read my Bible every day for the very same reason that I must track my calories every day. 

IT'S A SLOW FADE...

It really is!  You don't just go crashing into sin...life-altering, person-shattering, soul-killing sin!  No!  Sin creeps up...it's the little step over the line, and then, when nothing happens, you take another step over that line, and then you think,  "Hey, lightening didn't strike, I don't feel the flames of Hell at my heels, I'll just go a little further..."  That is how sin creeps in...that is how weight creeps back in too. 

When I'm not in the Word; listening with a quiet heart to what God wants to tell me, that is when sin creeps silently into my soul.  I find myself feeling proud, paranoid, and petrified.  Those feelings are what can lead me to doubt the plans God has for me, and to start making plans of my own.  It never turns out well.  I can honestly say that my plans have NEVER been better than God's. 

Whether I'm reading John 3:16 or tracking my Panera Greek Salad 380 calories, the reason I'm doing it is the same (relatively speaking); because I'm a sinner, and I need to be held accountable.

A Letter From My Grandma Ev

I found a true gem the other day.  A card from my Grandma Ev, dated from 1991.  Based on her response, my guess is that my letter to her was about school, and perhaps some of the "picking on" that I received as a little goody-goody and bookworm.  I love this letter.  It reminds me of how I made it through and where I got faith...and, knowing that she was praying for us every day still makes me feel better today.  Is it any wonder I named my daughter after her?  I typed this out as Grandma wrote~grammar and spelling and all...

My little Sweet heart Tammy, or is it Tammie?  You are Grandma's little Sweet Heart, you know.  And I thank you for thinking of me! 
And you know what I do when I don't fall asleep right away?  I start thanking God for all His goodness to me~like Protection, and I always can find so many times He has been there to guide me and soon I'm asleep!  Always remember to Thank Him, cause without Him we'd have nothing and He likes our love too.
And when we feel the bottom is falling out, and you've no place or person to go to, God will always make a way, and guide you thru it!  And you know what?  Your friends don't know or rely on Jesus or they wouldn't complain all the time, rather count their blessings...If we obey His laws we are happier too! 
Pray for her and Grandma will too.  I pray a prayer cover of salvation and protection over all of you every day!  Ask God to fight your battles, and He will! 
Boy and only one month to go and school will be out and will you have time then to lay in the sun and relax.  And by that time Gram should be thru raking and etc. and you can always visit me!  Right?
Congrats on your rating in Spanish and thank you for the poem.  I have it sitting here and now thanks so much for thinking of me.  I love you all so very, very much and so does Jesus.  Grandma Ev