The Photograph.

They say a picture is worth a thousand words.  That may be true, but can it also be worth a thousand tears?

The photograph was nothing phenomenal.  No heart wrenching, award-winning shot of someone looking to the sky and weeping after a disaster. It was just a traditional “yearbook” picture of the CHS Concert band in a cardboard frame folder, with an individual shot of Lukah holding the clarinet she has played since 6th grade.  But the second I saw it, the sadness hit; raw and to the core.

I have purchased team and group photos of Lukah for years — Ever since she began playing softball when she was 6.

But when she brought that band picture home, I suddenly realized it was probably her last.

It is unfair.  She should still have two more years of “group photos” — two more years of sports and band and fun.

But instead of enjoying her high school years, she is at home, lying in bed recovering from seizures and suffering from the debilitating symptoms of POTS.

I have hauled Lukah all across Illinois for her sports and organizations for 7 years, and in an instant that band picture made realize I will probably never do it again.

In a weird way I am grieving, and I feel selfish. Thankfully, I am not grieving the TRUE loss of her.  I am instead grieving what once was. I am grieving her life BP (before POTS).

Her life BP was filled with activities: softball since she was 6, basketball and volleyball starting at nine, band and track starting at 11.  She did everything, and she did it well.

She currently holds the school record for pole vault for 7th grade at the Junior High.

Here she is, when she was strong,  flying nearly seven feet in the air:

Things are so different now, than they were even a year ago when she was gearing up for her first high school softball season.  She only made it through a few weeks of practice before The Beast introduced himself.

Here she is in her uniform, the night they were handed out.  Too bad she never got to use it.

And here she is in another uniform she didn’t get to use . . . volleyball . . . her favorite.  She practiced in the summer but The Beast had other plans for her by the time the season started. She never even got a chance to play in a game.

The Beast steals its victims’ youth.  Not just Lukah’s — so many others suffering from POTS have the very same story.  It is so sad.

One of Lukah’s doctors told me that for some reason, POTS is known to affect “overachievers.”  Many kids suffering with POTS were once strong athletes who also excelled academically.  Lukah fits that profile.

I read story after story in my online POTS forums about once high achieving kids who barely end up graduating because they have so many absences from school.

When Lukah was first diagnosed, we were hopeful that she would outgrow her POTS.  The statistic we were given was that 80% of children diagnosed with POTS outgrow it by the time they are in their early twenties.

That statistic quickly changed.

A few months after she was diagnosed, Mayo released new statistics:

20% of children diagnosed with POTS outgrow it
60% of children diagnosed with POTS remain the same
20% of children diagnosed with POTS get worse

The odds are against these POTS kids, and it is heartbreaking.

But I believe in miracles.

I got Lukah the movie “Soul Surfer” for Christmas.  It is about a young surfer by the name of Bethany Hamilton.  Just as she was on the cusp of a professional surfing career, a shark took Bethany’s arm, leaving her with only one.  Bethany overcame many obstacles to achieve her dream of becoming a professional surfer.

I believe Lukah will overcome her obstacles, just as Bethany did.  She will become one of the 20% that recovers, and go on to do great things.

Afterall, as Bethany said, “”I’ve learned that life is a lot like surfing. When you get caught in the impact zone, you need to get right back up because you never know what is over the next wave, and if you have faith, anything is possible. Anything at all . . . “

God Bless.

Angels and iPods

 Today, I am posting the second in a series of three posts about angels making “appearances” in our lives during the last year in Lukah’s battle with dysautonomia.  

“Dashing through the snow . . . in a silver mini van . . . o’er the hills we go, with our favorite Chicago Bulls fan!!”

  My son Callahan is a Chicago Bulls addict, and every year, the only thing he wants for Christmas is Bulls tickets.  So, I happily spoil — oops I mean oblige —  him.  This post-Christmas overnight trip to Chicago is quickly becoming a family tradition.

We go up early in the day and spend time as a family having lunch in the city and viewing the incredible Macy’s window displays.  In case you haven’t seen these windows before, here are a few pictures of them:

In the evening, the boys go to their Bulls game and the girls go shopping on State street.

 It was very warm in Chicago on December 28  —  we barely even wore coats that evening as we conquered the State Street shops.  After hitting Target and T.J. Max (my favorites), we waited at a stop light to cross the street.

The warm temperatures caused the intersections to be really crowded — it seemed EVERYONE was taking advantage of spending their Christmas cash in the city on this beautiful evening.  We barely made it across the street before obnoxious honks erupted from anxious cabbies waiting to hit the gas pedals.

Not long after we got to the top floor of Old Navy (YES!  A two-story OLD NAVY!  How cool is THAT?), Lukah turned to me and said, “I think someone stole my iPod.”

I said, “Now why do you think someone stole it?  Maybe you dropped it?”

She went on to tell me that as we were crossing that crowded street, she felt someone lightly touch her lower back area.  At the time, she just thought they accidentally brushed up behind her since it was so crowded.  But, when she got to Old Navy, she reached for her iPod and it was gone.  It was then she knew that she had been pickpocketed!!!!!

I couldn’t believe it.  After everything she has been through?  Now some idiot steals her iPod?  The same iPod that helps her remain connected to her friends, through apps like Facebook and Twitter, as she lies at home in bed?

My husband and I actually took it harder than she did.  She said she was sad but that there was nothing she could do about it so why dwell on it.  But we kept going back to the fact that she has been through so much . . . two hospital stays in a 6 month time frame, countless doctor’s appointments (with no answers), near-daily seizures, headaches, stomach aches and other digestive problems, exhaustion . . . I could go on and on.  She is 15 years old, had to drop out of her beloved sports, can’t get a driving permit, barely sees her friends anymore, and had to go on homebound school all in a matter of 9 months.  And now, someone steals her iPod?

In a moment of anger, I posted the following status on my facebook page:

“To the person who pick-pocketed Lukah’s iPod today in the city, I wish you knew that you stole from a sick girl who finds comfort through that device when she is down. It not only helps occupy her time on long days and nights at home, but it helps her remain connected to her friends who she rarely sees anymore. I hope it was worth it to ya, weasel!!!!”

The comments started pouring in.  They started with ones like: “Scumbag!”  “Makes me sick!” and “How terrible!”  and  then somehow turned to “We should all pitch in and buy her a new one.”  “Yeah!  I’m in!” and “Let’s do it!”

I quickly said, “Thank you!  You guys are so generous but that is really not necessary!”

Well, guess what?  It was out of my hands.

My husband’s cousin began organizing a funds drive to get Lukah a new iPod. The donations came pouring in.

Within the next two weeks, she brought over not just one batch of donations, but two!

And, we had people mailing donations to us or dropping them off at our house, too.  It was unbelievable!

My husband posted the following on facebook.  I couldn’t have said it better myself (other than the fact that I am not silent about her disease.  🙂 )

“I have been pretty silent so far on Lukah’s illness but the recent selflessness of people has prompted me to speak out. I don’t like to bother people with our troubles but it truly was heartbreaking to me when Lukah’s iPod got stolen. I almost think we were taking it harder than she was. I just couldn’t believe yet another bad thing had happened in the worst year of our lives. Two years ago, I didn’t think I could have had a worse year than that one until Lukah’s problems started and proved me wrong. We have had so many medical bills in 2013 (think shoe box crammed as full as you could get it) that replacing the iPod was not an option. She was gonna return some Christmas gifts and use her own money to get a new “used” one. So, when Andi showed me on Facebook what you guys were doing to get her a new one, I literally had tears in my eyes. We have had so many things go wrong in the last 2 years that it makes one question everything spiritually and emotionally. But then people come together for a cause and show that there is still goodness and compassion in the world. I thank you, Andi thanks you, and most importantly Lukah thanks you. You all are my heroes for doing this for my little girl and I can’t thank my cousin enough for using her big heart to always step up and organize these things for others. We will make sure that you guys get an update when she gets her iPod. Thanks again for giving my baby a good day, we don’t get that many anymore.

Thanks again,

Corey Case”

To me, the people who donated to “the iPod fund” are angels — and not just because they gave money to a material item.  You see, the iPod is not the important thing here . . . it’s the lessons of humanity that came along with it that Lukah learned that are important.

 Because of these random acts of kindness, Lukah now knows how many people are on her side —  she realizes how many angels are supporting her in her fight.  She understands that, through all of her pain, there are still bright spots in her life, and angels that will pick her up when things are not shining quite as brightly.  Many times, it’s angels that she does not even know!   She saw true compassion in the works, and she will never forget it.  She was reminded of humanity and selflessness, and wants to pay it forward.

It also taught her that staying “connected” to people runs deeper than keeping in touch through the internet.  While the internet was the vehicle used to bring in these donations, they really came from relationships she and I have with people. It  was a reminder to be thankful for and to nurture those relationships.

Through all of this, Lukah also learned another important lesson: NEVER CARRY VALUABLES IN YOUR BACK POCKETS IN CROWED PLACES!!!!!!!!!!!!!

To each of the angels that contributed to her new iPod, thank you for your kindness.  It will always be remembered . . . long after iPods are the “latest” gadget to have.

God Bless!

Note:  Lukah ended up with a few hundred dollars more than she needed for the iPod.  Rest assured, it will be put to good use.  We are in the early processes of getting a service dog for her.  This dog will help alert her to seizures and syncope episodes BEFORE she has them so she can lay down and not be injured.  The dog is quite costly, so the extra donation money is in her new “Service Dog” savings account!  More to come on this application process and the dog in later posts.  🙂

Angels and ID’s.

It was late August.  The smell of autumn was in the evening air despite it technically still being very much summertime.  The kids were back in school and this small town was gearing up for football season. The Boys of Fall were meeting Friday Night Lights . . . tailgating . . . bonfires . . . My favorite time of year!

Lukah and her boyfriend Cristian attended the first football game of the season, just as many high schoolers do.

Unbeknownst to us, on their way home from the game, something terrible happened.

Lukah wanted to stop to use the restroom at a gas station and local teen hang out (yes that’s what teens do in Smalltown, Central, IL.  They hang out at the local Shell station.).  Cristian stayed in his truck while she ran into Shell.

He thought she was taking a long time, so he went in to check on her.

It was then that we got a call I will never forget.

It was Cristian.

“Lukah had a seizure in the bathroom at Shell and hit her head.  I can’t get her up.”

The words were barely out of his mouth when we practically dropped the phone and raced to my van.

Shell is only about 3/4 mile from my house, but of course, it seemed like it took an hour to get there.

While I have seen Lukah have seizures DOZENS of times, I was still not prepared for what I would see.

The  first thing I saw were two young girls about the age of 12 sitting on the floor crying.  They were propping the bathroom door open with their backs.  I said to them, “Is she in here?”  They nodded — tears streaming down their beautiful young  faces.

I went to Lukah.  She was awake, but lying still on the floor, in pain with her eyes fixed on the ceiling.  She was disoriented, but she said her head was throbbing and she was extremely sensitive to light, despite having the lights off in the bathroom.

I asked Lukah what happened.  She did not remember.

I  asked Cristian what happened.  Of course he didn’t know, because he had been in the truck.

I asked the young girls what happened. .

“We just walked in and found her.  She was laying there on the floor and was shaking with her eyes rolled back in her head, and the water in the sink was still running,” said the young blond girl.

“I think she was having a seizure,” said the young brunette.

I told them she probably was — that she is prone to them.

“I have seizures too,” said the blond.  “So does my mom.”

I wanted to cry.   I think I welled up but, as usual,  didn’t let the tears fall.

All I could think about were those young girls,  walking into that horrific sight of Lukah seizing on the floor.  I have walked into it many times at my house, and it still rattles me to my core.  I can’t imagine seeing that  at the age of 12.  I’m quite sure it is a vision that won’t ever leave them.

While the vision may haunt them like the devil, those girls are true angels.  Guardian Angels at that. And those Angels acted fast.

When they entered the bathroom, one of them went to comfort Lukah and the other went to get her bottle of water, because she remembered her mom is always thirsty after a seizure.

Lukah “came to” soon after they found her, and Cristian came in soon after she was awake.  When she wouldn’t get up, he called us.

When we got there, we stayed with Lukah while she rested on the floor for about 5 minutes.  We finally encouraged her to get up, thanked the girls, and  guided her to my van.

She didn’t think she needed to go to the hospital.  We debated it for a bit but decided to take her home and watch her.  I remember sitting in candlelight because the lights hurt her head so badly.

She continued to have a bad headache through the night and the next day, but showed no other signs of a concussion until the next evening, when she began having ringing in her ears and nausea.  Off to the ER we went and the concussion was confirmed.

Lukah’s concussion got better in about a week, but I remained fearful.  How times is she going to get hurt falling to the ground?  We had been lucky so far but our luck was running out.  And, this time, she was away from home . . . all alone!

While I can’t stop her from falling, I can do something to help the Angels who find her in that awful position next time.

Lukah now wears a stylish medical id bracelet.  On the back, it indicates her condition and has my phone numbers on it.  It helps me rest easier knowing that if she falls again while alone, the Guardian Angels who come to her rescue have an easier time knowing what is going on and who to call.  Here is a picture of it:

I see those young Guardian Angels around town sometimes.  I don’t think they remember me, but when I see them, I smile from afar and say a little prayer to God for putting them there to rescue Lukah in her time of need.

To those battling conditions causing sudden unconsciousness, just remember that Angels are everywhere . . . sometimes they even come in the form of Junior High girls.

God Bless!

The Beast.

Monday, January 6, 2014 was a day we had been waiting for.

We met “Dr. B.”

In early November 2013, soon after Lukah’s POTS diagnosis was made by a cardiologist at Lurie Children’s hospital in Chicago, I decided to take her to a neurologist, too.  I did this because I believe both types of doctors will play a huge role on Lukah’s Dysautonomia treatment team.

But, I didn’t want to see just any neurologist.  I wanted one well-versed in autonomic disorders.

Too many doctors around here in Central, IL., know NOTHING about autonomic disorders, and I was sick of wasted appointments with no results.

So,  I dove into researching who we needed to see.

 For me, distance was not much of an obstacle — I just preferred it to be in the Midwest if at all possible.  Afterall, we have already spent a week in St. Louis Children’s hospital and also had a week-long trip to Mayo Clinic in Minnesota under our belts.  What’s another trip if it includes answers?

So I asked my virtual friends on my POTS mom facebook group.  Those mom’s never fail me.  Like us, those folks have been through the ringer with their children’s illnesses.  They know what works, what doesn’t, who’s a good doctor and who is a waste of time.

During the “conversation” on the forum, a husband and wife team of neurologists from Milwaukee came up.  They were described as “mad scientists” who will keep going and going and trying  for answers.  I liked that approach and was just about to call to make an appointment when someone posted recommending we try to see  “Dr. B.”  He had recently relocated from working with the Milwaukee “mad scientists” to Rush University Medical Center in Chicago (only two and a half hours away from us instead of 4).  Recommendations for “Dr. B” kept pouring in, so I called to make the appointment.

We had to wait two months.

January 6th came as did the snowstorm and subzero temperatures, and  I questioned if we should make the trip.

I decided to try it.

We made it.  And I am glad that we did.

“Dr. B” was wonderful.  He talked . . . and listened.  We were with him for about 45 minutes.

I’m not going to get into a lot of what he told us in this post, as I am not ready to do so yet, but I do want to talk about one thing today:  what he said about her seizures.

Dr. B is worried about them.  He says seizures are rare in dyautonomia/pots.  He explained that he  knows Lukah has been hooked up to inpatient video EEG two times already this year, so he doesn’t want to go that route again, but he is worried that her seizures are not registering because they are too deep in her brain to show up on an EEG because the wires are on the SURFACE of her scalp.  If the seizures stem from deep within the brain, they will not register on the typical EEG or video EEG.

Here’s a picture of Lukah at St. Louis Children’s hospital, hooked up to her video EEG equipment

Dr. B decided to start Lukah on a new seizure medicine, and I am glad.  She has not been on a seizure medication since April, because when her seizures did not register on the video EEG in St. Louis, they yanked her off of the seizure medicine.

Corey and I have never felt like seizure meds were given enough time to work, or that perhaps a different seizure med could be the answer, because we had only tried one kind.

It’s too soon to tell if the new meds are working, and unfortunately, she had a seizure again last night and again this morning.

As usual, they weigh heavy on my heart.

Long ago, I named her seizures “The Beast.”  Now that  Dr. B is looking at epilepsy again, I recalled a poem I wrote when all of this started last Spring entitled “The Beast.”  Here it is:

The Beast

I knew it the first day– it was like women’s intuition. I realized what it was well before we saw any medical clinician.

She was only eight, in a grade known as “the third,” A mere baby when her first episode occurred.

She fell to the ground and shook and her name she could not hear,

Even though I yelled time and time again, “Lukah wake up! Lukah my dear!”

It seemed like an eternity, and I was on a mission; as I dialed the phone to her long-time pediatrician.

“Do I call an ambulance?”  I ask.  “No,” she said. “I’ll see her right away.” I won’t ever forget her appointment that day.  

“This is your freebie,” the doctor said with a pause.  “If it happens again we will test to find the cause.”

I knew right then it was no fainting spell, you see; I knew in that moment it was EPILEPSY.

Round and round we went with specialist after specialist. And every time, the true diagnosis was dismissed.

“Drink more water. . . get more sleep,” We would  shake our heads, sigh and climb back into the Jeep.

“This can’t keep happening,” I would say. It seemed like with each different doctor, she was being  cast away. 

Years went by, the episodes few and far between. Until one evening when she was 14.

Back with a vengeance the beast returned; Several spells in one week—we were very concerned.

A new doctor saw her right away;   And diagnosed her with epilepsy on that very same day.

It’s not something, as a parent, you ever want to hear. It’s a heavy diagnosis – I still want it to disappear.

Yet I had known long ago that epilepsy was the beast we were about to face, In the life of our daughter, Miss Lukah Rose Case.

While I had known it since the first time, it’s still hard to endure. For with this horrific disease, you see, there is no “cure.”

Medicine may help but it takes a while, Until then, you hope no one notices the constant worry behind your smile.

Each day I wonder, “Will it happen again or tonight will she be free? To live the life of a normal teenager –wistful and full of glee?”

It’s hard not to smother . . . not to overprotect; While we wait and wait for the medication to take effect.

Even if it helps, I still wonder in the back of my mind, “Is the dosage right or will it happen again?  And if does, what kind?

Atonic, complex partial or myoclonic? And, oh God, will they continue to be chronic?

Will the effects be minimal and she’ll be back fast?  Or will it steal her for so long that several hours will have passed?”

The unknown is the scariest part, yet she is as brave as can be. Her motto is, “I may have epilepsy, but epilepsy does not have me.”

Perhaps, I’ll adopt that positive motto one day, Until then, though, I shall pray: “

Dear God, please keep my baby safe and out of harm’s way, as she enters each moment of every single day.”

And if it becomes her time to fall, Please guide her to safety through her grand mal. 

Please give her strength to endure the unknown, Especially, at least, until she is fully grown.

Please protect her from those that are mean, And, I also pray that she not pass on this horrific gene.

I ask that you help me be strong, And selfishly, I still pray that you will make their diagnosis wrong. 

But most of all, I pray for peace, for all of those suffering from this beast, may their seizures completely cease.”

—  Andi Case, March 28, 2013

 Today I pray for those suffering from “The Beast.” 

God bless them.

Welcome 2014.

I’m a little slow with this post, but HAPPY NEW YEAR!  I hope everyone had a great holiday season, and is looking forward to a HEALTHY and happy 2014!

My New Year’s Eve was a blast!  My husband and I hosted a party and had a wonderful evening filled with great friends and lots of laughs.  I even got to decorate my new chalkboard bargain that I found on our trip to Chicago last weekend.  (OK, I didn’t decorate it, my daughter Mikah did but you get the point. 🙂  ) It was a wonderful evening that took our minds off of things — even if only for an evening.

2013 was a very difficult year for my family, because of my daughter’s sudden decline in health.  Instead of dwelling on it being a rough year, and rejoicing that we were kicking it to the curb, I prefer to be optomistic about it and focus on all of the great lessons I learned, or was reminded of, along the way.

With that, I bring you . . .

13 things I learned in 2013:

1. Don’t take your good health for granted. In less than a year, I have watched my daughter go from being a record holding athlete within her school district to missing 39 days …of school in the first semester.

2. Never give up –especially if your gut is telling you something isn’t right. If we had given up searching for answers for Lukah, we would not know what was wrong with her, as she was misdiagnosed THREE times in seven months. What if I had given up and went with the first doctor’s thoughts?

3. Someone always has it worse than you do — be empathetic and kind.

4. Things can always get worse. But, you learn the most from the hard lessons to take it all in and move on a stronger person because of them.

5.  Crying is not a sign of weakness. It is a sign of being human.

6. There are a lot of extremely generous people in this world. I have had so many people help my family this year when they did not have to. They did it out of the goodness of their hearts, and I appreciate it more than they will ever know.

7.  When someone does something nice for you, remember to pay it forward.

8.  Petting an adorable dog can take away your problems, even if only for a few moments.

9. Pick your battles. In the grand scheme of things, does it really matter that she left the cheese wrapper on the counter? No. What matters is that she was here to eat the cheese.

10. God will not give you more than you can handle. I’ve questioned this a time or two but I must believe He knows what he is doing.

11.  Always, always, always look for the good in the bad situations. My daughter is chronically ill and it sucks, but I can see good things within it. For example, I believe she and I have become closer because of it, and I have DEFINITELY become a more empathetic person.

12. Don’t judge others. My daughter may not look sick, but is dealing with pain every day. Just because her illness is not visible doesn’t mean she is not suffering.

13. Choose the brightest path. Don’t waller in your misery. A favorite lyric of mine is by the Beatles, “But tomorrow may rain, so I’ll follow the sun.” – John Lennon. No matter how hard things get, I will always choose to follow the sun.

Happy New Year everyone!

(And take time to listen to this wonderfully happy and inspiring song by The Beatles:  http://youtu.be/_Uk_6WWy0RA)

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