Second chances.

Wow it has been a busy few weeks since I’ve blogged.  So many stories to tell and not nearly enough time to tell them, I swear!  Here we go . . .

“Some things are destined to be — it just takes us a couple of tries to get there.”   ― J.R. Ward, Lover Mine

No words could be truer in regards to our recent trip out east.

This trip was significant not only because we were going to see about getting a service dog for Lukah, but it also was significant because it was a second chance . . . a “redo” if you will.

Last year, Lukah was scheduled to go on a high school band trip with her friends to Philadelphia and New York City.  The kids couldn’t wait for their departure in June!

But then The Beast entered her life, and the band trip quickly became the first of many things that have been stolen from her. Because she was having so many seizures, she had to back out of the trip.

I remember feeling so sorry for her as we watched her older sister pack up and go on the trip.  While I was happy for my oldest daughter, my heart ached for Lukah as she watched her sister and all of her friends post pictures and statuses about all of the fun they were having.

I remember hoping that someday, we could take her on a similar trip.

Little did I know that in less than one year’s time, that opportunity would present itself.

While planning our necessary trip to Pennsylvania to meet with Canine Partners for Life about a service dog for Lukah, we realized Cochranville — the small town that the organization is located in — was just about 30 minutes from Philadelphia.  That meant, the little town was also just a few hours away from New York.

It took us all of about 2 seconds to make the decision to “recreate” the band trip that she missed out on while we were out there for our meeting with Canine Partners for Life.

So, on April 26, 2014, Corey, Lukah and I hopped on a plane to Philadelphia with high hopes for a service dog approval on our minds, but also on a mission to make up some “missed out on memories” for Lukah.

Here we are at the airport on our way to Philly.

Let’s board that plane.  But first . . . Let me take a selfie!  🙂

Small plane to ChiTown.

Somewhere over Central, IL.

When we arrived at our hotel, in a town called King of Prussia (funny name, I know!), we were greeted by beautiful flowering trees everywhere! Can you believe I took this picture with my iPhone?  Gosh I love my iPhone camera almost as much as I love my many DSLRs.  🙂

 

Lukah did not feel well from getting motion sickness from being on the MOST turbulent flight we have ever been on, so she stayed back in the room to rest while Corey and I went out to dinner and to get some groceries.  That night, since we were all tired from the day of travel, we just hung out at the hotel.  Here we are in the lobby that evening:

The next day, we explored “The City of Brotherly Love.”  We started out by having lunch at a really cool place called Reading (Pronounced Redding) Terminal Market.  They have every kind of food you could ever imagine.  It is kind of overwhelming, really.  Talk about sensory overload between all of the sights, smells, tastes and touch (from people bumping into us)!

Of course Lukah got her first Philly Steak sandwich.  Only, this one is mine — hers was plain.  I’ve gotta have all of the goodies on mine.  🙂

Here they are cooking them:

Next we toured Independence Hall and got to go in the very room that the Declaration of Independence was signed.  Here’s the room:

We also saw the Liberty Bell.

(blurry pic . . . SORRY!)

And all of the beautiful flowers in front of the Liberty Bell:

It was hard not to feel patriotic on this beautiful day in the City of Brotherly Love! (This flag is outside of Independence Hall)

The next day, we headed into New York City!  I was so excited because I have always wanted to go there.

We had signed up for a “walking tour” and the meeting spot was right next to Wall Street — right by the New York Stock Exchange!

We went to the Federal building.  George Washington took his presidential oath on these grounds on this very stone!

Also, even though the World Trade Center is several blocks away, the building has damage from the fall of the towers.  While repairing the damage, they made the intentional decision to leave a single crack in the wall to be a “tribute” of sorts to those who died in 9-11.

We also toured the most beautiful church I have ever entered.  It is called Trinity Church and it is a gothic looking structure right smack dab in the middle of the skyscrapers!  There is a cemetery on its’ grounds.  Alexander Hamilton, one of our countries founding fathers, is buried there.

From there we walked a few blocks to the 9-11 museum.  It was harrowing to stand on the same grounds where so many had fallen.  The memorial is breathtaking.  Each “pool” is in the exact spot where the towers stood, and are made to be the exact dimensions of the twin towers.  The water falls from individual streams — each representing an individual who lost their life in the tower — into an infinity pool.  The sound was calming and peaceful as I paid my respects.

See the individual streams?

At the 9-11 site, there is a beautiful pear tree called “The Survivor Tree,” and it was in bloom while we were there. It smelled amazing.  If I close my eyes and imagine myself there, I swear I can still smell it. The irony of the sweet smell in a place where there was so much death is beautiful to me and also, a metaphor of hope to me. We have gone through so much darkness and sickness — surely we will someday come out smelling like a rose (or in this case . . . a pear tree :)).

The tree now stands near where it was planted in the 1970’s where it greeted guests in the plaza of the World Trade Center for decades. After the attacks on Sept. 11, 2001, the tree was buried for weeks under the rubble of the Twin Towers.

Amazingly, the tree survived! In October of 2001, the tree was dug out of the rubble– the last living thing pulled from ground zero.

It was moved to temporary “home” during the rebuild.  Ironically, the night before it was set to be moved back to its true home, it was struck by lightning!  Refusing to lose its fight, even though it had been knocked down again, the tree blossomed once it was planted back where it belonged.  That tree reminds me of a metaphor for Lukah.  Even though Hurricane Dysautonomia keeps knocking her down, she does not give up the fight, and continues to grow more beautiful despite her circumstances.

Next we walked to Battery Park.  From there, we took a ferry to the Statue of Liberty.  I will never forget when my eyes say it for the very first time.  I imagined what it was like for my great-grandmother to see that sight, after a long journey on a boat from Lithuania at the age of four, as she started her life in a new country. I remember a story about her — someone handed her a banana and they laughed at her as she bit into it without peeling it.  She had never had a banana before she came to America!

 I can definitely see why Lady Liberty is a monument of freedom to those who immigrated to our country. It took my breath away.

Below is the view up from the terrace.

From Lady Liberty, we took a ferry over to Ellis Island and toured the main building.  It was haunting to think of so many of my ancestors who had walked the same halls many decades ago, eager to being their new life.

After seeing these sights, we hobbled back to our car (our feet were killing us from all of the walking) and headed back to the hotel to prepare for Lukah’s big day the next day!

I am so glad that we were able to recreate this trip for Lukah.  While she didn’t get to see everything she would have on the band trip (i.e. a broadway show, Central Park and Times Square), she did see a lot of the same things. And, some of the things she got to do more of with us than what they did with the band (i.e. we got to go up on the pedestal of the Statue of Liberty and actually got to go inside to the see the Liberty Bell and they didn’t.).

I believe it was fate — or perhaps another God wink — that brought us to a second chance to recreate this trip for our girl.

I am so grateful we could make it happen.  Even though it probably wasn’t as fun for her as it would have been traveling with her friends, we were at least able to partially give back something The Beast stole from her.

Now, if only we could give back the rest of the things The Beast has taken . . .

Until then, we’ll keep Looking for Lukah.

Thanks for reading!

 

Here comes the sun.

This morning, as I walked into the building of my work, I saw the beautiful yellow sun peeking out of some dismal grey clouds.  It was a lovely display– I almost took a picture of it for instagram but didn’t have a clear shot.  For some reason, this not only caught my eye — it spoke to me as a message of hope.

As I looked at God’s beauty before me, I had a strong feeling of peace overcome me.

God’s work of art quickly became a metaphor for my soul.

You see, it has been a long hard winter here in Illinois.  We experienced record breaking temperatures and record breaking snowfall during numerous winter storms.  We are all ready for

.

But, it also has been a long hard winter in my heart.  This is the first winter we have been battling dysautonomia, and, I am sad to say, it has frozen my heart a little, as I have never experienced anything like it.

This winter, my daughter went on homebound school through the district.  Since the New Year, she has experienced more than 25 pass outs/seizures (that is not counting the time in the hospital when she couldn’t sit up without passing out.  If I counted those — it would be more than 50!).  She has battled near constant headaches, frequent stomach aches, digestive problems and complete exhaustion.  She has weathered the storms of insomnia (up until 4 a.m.) at least once a week.  Her heart has raced, dizziness has prevailed and her pupils have been randomly enlarged, yet she has weathered Winter Storm Dysautonomia without complaining.

I asked her the other day why she didn’t ever complain.  She said, “There is nothing that I can do about it so what is complaining going to do?  I am just glad it affects me instead of someone that I care about.”

A lump rose in my throat.

I said to her, “I wish I could take it for you.”

Her response?  “Stop it mom.”

She hates it when I say that, but it is true. Most mothers would agree with me — they would rather suffer than watch their sweet children suffer.  Someday, when Lukah has children, she will understand.

Back to the sun . . .

So hopefully you can understand why my heart has frozen a bit this winter.  There is nothing like watching your child suffer.  It changes you.

I have been reading a book loaned to me by a good friend.  It is called “When God winks at You.” 

It is a compilation of stories explaining how God speaks directly to us through the power of coincidence. It is amazing.  The author, SQuire Rushnell calls these coincidences “Godwinks.”

I had been asking God for a “wink” lately — for a sign that things were going to get better.  For a sign that we would see improvements in Lukah’s quality of life and that the ice in my heart would eventually thaw.

I had been asking for a sign that we would see the sun.

I believe today, I got that sign.

I realized what that feeling of hopeful peace that I felt this morning was when I received 2 phone calls today  — one of them particularly special.

Faithful readers of my blog will recall that we had recently sent in an application to Canine Partners for Life for Lukah to receive a service dog.  We have been anxiously waiting several weeks to hear from them after they reviewed her application materials.

Today, they called.  They think Lukah is an excellent applicant and want to meet her!  Since Lukah is so young, they want to meet her in person rather than via skype or phone call.
So, Corey, Lukah and I will soon be hopping a plane to Pennsylvania to meet with the trainers regarding a dog trained specifically for her needs.

Coincidentally, the representative I have been working with from Canine Partners for Life has the same last name — Case.  Even more of a coincidence is the fact that she also suffers from POTS and has a
service dog of her own.

Ms. Case explained to me how her service dog has made her quality of life so much better.  She had to drop out of college because of her passing out issues from POTS, and, because of her dog, she was able to finish college and is working full time (for Canine Partners for Life!).

Ms. Case’s dog alerts her to when she is going to pass out.  She said all dogs alert differently, but hers stares at her intently (she said it is almost creepy how he stares lol), and if she misses that stare then he persistently nudges her leg.  She lays down, so she doesn’t end up passing out. Then, he alerts her when it is safe for her to get back up.  So, she completely avoids the passing out to begin with.  She said he is absolutely amazing and that she hasn’t passed out since she got him.

I can’t imagine what the improvement in Lukah’s quality of life will be when she gets her dog. Notice I say, “When” and not “If.” 🙂

In addition to that phone call, we also heard from Dr. B — her autonomic neurologist in Chicago.  He has decided to wean her off of her POTS medications and do some autonomic testing of his own.  So, we will be heading to Chicago on April 11 for him to conduct tests.  His nurse tells me he is very meticulous and exact with them and the very best.  After the testing, he will put her back on the meds that he feels she needs based on her results. His nurse assures me he will figure this out.

Today, this first day of Spring 2014, has been filled with Godwinks for me.

The minute I felt that peace while looking at the beautiful yellow sun peeking out of those dismal grey clouds, I knew it was a metaphor . . . a Godwink if you will . . . telling me that today was the day I would have hope restored.

Is it a coincidence that the service dog representative I talked to shares the same surname AND the same disease that Lukah does?  I think not!  I, instead, prefer to think of it as Godwink.

That Spring sunshine has melted the Illinois ice outside on the lakes, and also inside of my heart.

Those Godwinks today . . . that feeling of peace, those phone calls, the last name and same disease coincidences make me feel as if He were singing straight from one of my favorite songs by The Beatles,

“Here comes the Sun” :

“Little darling, it’s been a long cold lonely winter Little darling, it feels like years since it’s been here
Here comes the sun, here comes the sun And I say it’s all right.”

I can feel in my heart that things are only going to get better from here.

God Bless.

 

Rare Disease Day

Tomorrow is National Rare Disease day.

While I have participated in supporting Rare Disease Days of the past, this is the first year I am directly impacted by it.

I always knew Lukah was a rare gem, but I sure as heck never thought she had a rare disease! That changed forever on October 24, 2013 when she was diagnosed with Dysautonomia/Pots
(another date I will never forget . . . see earlier post entitled Dates.)

So what’s the big deal about being rare? Everyone is unique in some way, right?

Well I’m here to tell you that “ain’t nobody” want to be the “rare disease” kind of unique. Having a rare disease is not like having a split in your teeth like Madonna, or being skilled in a special talent like glass blowing. Instead, the thing that makes someone “rare” is usually the fact that they are fighting the hardest battle of their lives . . . and very often times battling FOR their lives.

You see, many times the symptoms of rare diseases are uncommon to most doctors, so rare diseases as a whole represent a large medical challenge. We have found this to be very true with Lukah. It took us 7 months to even get a diagnosis for her disorder, despite having seen more doctors than I can remember to count.

There also is not a lot of funding for treatments for rare diseases. Consider this: What would give you more bang for your buck? Getting three “new without tag” designer purses at a trendy resale store or paying store price for one designer purse from Saks 5th Avenue? The same is true for rare disease research and treatment development. Looking at it from a strictly monetary perspective only, does it make more sense to sink a lot of money into curing a single rare disease that will cure a small amount of people (like Dysautonomia), or to fund research for something that will find a cure for the masses . . . like cancer. It’s sad but true.

“More people are affected with a rare disease than with cancer and AIDS combined, yet we get no funding,” said Patty Weltin in an article entitled “Health Check: Rare Disease Day”
on the website www.turnto10.com “None.”

Did you know . . .
• There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. The type of rare disease my daughter has is called POTS and it was just classified 20 years ago.

• 30 million people in the US are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. I personally know two other people with rare diseases – one young angel child with Batten disease in my little town and then at work I have a friend who is battling Wergner’s disease. Do you know anyone battling a rare disease? I’ll bet you do — you just might not know they have one!

• In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if fewer than 50,000 citizens per disease.

• 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear. This is the case with Lukah. Her neurologist believes her condition to be genetic, even though she did not show her first symptom until the age of 8. Then, after that, it was dormant again for a few more years until junior high when she would pass out about once a year. Then, came March 14, 2013 and she hasn’t had a break since. He does not believe she will “grow out of it” since he thinks it is genetic.

What can you do to help?
While people with rare diseases are unique, they do not bite (usually that is lol!). If you know someone who has a rare disease, don’t shy away from them because of their disease – especially if the disease made its grand entrance after you already knew them. Better yet, get to know them better! They probably need someone to talk to. If you’re comfortable, ask them questions about their disease. Raising awareness for rare diseases is important and by asking questions you are becoming more aware.

Walk a mile in their shoes. Imagine what it is like to never know when another seizure is going to strike, or not being able to breathe without a wheezing exhale with each breath or having your hearing stolen from the awful disease. Don’t be annoyed at them for “disrupting class” with a seizure or talking too loud at work because they can’t hear very well anymore. Be empathetic.

While this is not the case for Lukah, often times, people with rare diseases look “different. Don’t stare at them, but also, don’t shy away from looking at them in a friendly way, either. Often times, they feel isolated so a friendly smile will do wonders for their spirit.

Don’t judge. While a constant battle, those with rare diseases often times have good days and bad days. If you see them out and about, don’t automatically think snarky “Well see she’s not so sick after all” thoughts. Instead, be happy for them that it is a good day and they were able to leave their bed that day, because often times, those good days are few and far between.

Wear jeans tomorrow. The Wear That You Care™ campaign is simple — all across the world people can participate in supporting the Global Genes movement and rare and genetic disease awareness by wearing a Genes Ribbon™ and their favorite pair of jeans in support of those suffering from rare diseases. Why? The more awareness we build the more attention rare diseases will receive which leads to the possibility of additional funding.

Consider making a donation to the rare disease organization of your choice. If you’re interested in donating to a good one that supports the disease my daughter suffers from, Dysautonomia, please consider donating to Dysautonomia International through www.dysautonomiainternational.org.

Thanks for reading and God bless!

Have you ever seen the rain?

I woke up to thunder this morning.  It pulled me out of a deep sleep and I listened as it startled me with its’ roar.

I don’t know why it startled me?  It’s been thundering in my heart now for nearly a year — one would think I would be used to it by now.

The rain in my heart reminds me of the song “Have you ever seen the rain?” by Creedence Clearwater Revival because in my heart, I see the rain coming down  — even on sunny days.

Have You Ever Seen the Rain?  

Someone told me long ago
There’s a calm before the storm,
I know
It’s been comin for some time.

When it’s over, so they say,
It’ll rain a sunny day,
I know
Shinin down like water.

[Chorus]
I want to know, have you ever seen the rain
I want to know, have you ever seen the rain
Comin down on a sunny day

Yesterday, and days before,
Sun is cold and rain is hard,
I know
Been that way for all my time.

‘Til forever, on it goes
Through the circle, fast and slow,
I know
It can’t stop, I wonder.

I want to know, have you ever seen the rain
I want to know, have you ever seen the rain
Comin down on a sunny day

Yeah!

I want to know, have you ever seen the rain
I want to know, have you ever seen the rain
Comin down on a sunny day

It hasn’t been a good week. Lukah has passed out and/or had seizures 3 out of 4 days this week.  Despite all of the medicines she is on, the special diet she follows, the exercise she is doing, we are not seeing progress.

Dysautonomia has taken over her life like a never-ending storm.  Just as we think the rain is letting up a bit (when she goes for a week without a seizure) the storm waves come crashing in and pull her back into the hurricane tide (as she has another seizure).

It has been very stormy in my heart recently.  I find myself wondering, “Why her?  Why us? Why has God placed this cross on her to bear?”

I’ve been missing my sunshine and feeling a little like this:

She deserves the sun.  We all do! But then I ask myself a follow-up question:  “Why NOT her?  Why NOT us?”

I am a positive person by nature, so when I get to feeling down about her situation, my pity party doesn’t last long.  Instead, I recite this scripture in my head:

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

I truly believe God has a plan for Lukah . . . for our family . . . through all of this.

We are in the eye of the storm right now, so it is hard to see what that plan is, but I’ll guarantee it is there.

Someday, my heart will no longer be stormy and I won’t see the rain even when it is sunny.

Someday, we will look back in amazement that we were able to weather this horrific storm.

I envision looking back and seeing the storm as a F5 tornado that picked us up, tossed us around for a while and then eventually landed us on “the other side” — the healthy side.  And when we land, we see again. We will instantly know WHY she went through this.

Lukah’s spirit amazes me against Hurricane Dysautonomia.

Despite the loneliness she must feel being isolated in her home and the pain that she feels during so many of her darkest days, she does not complain or feel sorry for herself. I get no “woe is me” from her.

She just keeps swimming through the tsunami  and smiling through the storm clouds.  She is my hero.

As Hurricane Dysautonomia has her in its grasp, her attitude tends to be less cloudy than mine.  Despite the rain, her heart is more like this:

That is one of my favorite pictures of Lukah and her brother. It was taken the summer before she became ill. I remember the storm when that picture was taken, and  I remember watching it  from the garage and I remember laughing at she and her brother out there. Such silly, carefree kids  dancing and playing in the rain!

When my heart gets cloudy . . . when the thunder rolls within it, I remember that day and I remember that picture and it reminds me that:

Life isn’t about waiting for the storm to pass . . . it’s about learning to dance in the rain.

So, on this rainy day, and the many others we face, we shall remember to dance.

God bless!

The canine miracle.

The Beast is unpredictable — We never know when he will strike.

He has attacked at home, at school, in hospitals, at the doctor’s office — he even struck in a gas station restroom.

Today, he barged into a new location — her uncle’s house.

We were visiting his home for a family birthday party.  She was enjoying time with her little cousin who adores her and they were playing in the basement, when all of a sudden her brother ran upstairs to tell us she was having another seizure.

Corey and I raced downstairs and she was just coming out the seizure. Luckily, her wonderful boyfriend had been with her and could tell us what had happened. She had been sitting on the couch and they went to come upstairs.  When she stood up, down she went.

Imagine not being able to stand up from a couch without your blood pressure and heart rate changing so much it sends you into a seizure. And, to top that off, imagine never knowing WHEN that was going to happen?

It is for these reasons we made the decision to apply for a Dysautonomia service dog for Lukah.  The dog will sense changes in her blood pressure and/or brain waves and alert her when she is going to go into a seizure by licking, circling her, or nudging her BEFORE she goes into a pass out or a seizure. This will allow her to get to a safe spot lying down before the episode happens and will help avoid injuries like she has had in the past.

We are working with a great organization called Canine Partners for Life out of Cochranville, PA.  I am told by their representatives that they have had great success with their Dysautonomia dogs!

There have been quite a few pieces to the application process. For example, Lukah had to write an essay telling a little about herself and her illness.  Here is an excerpt from the essay:

“POTS makes life hard for me.  I pass out into convulsive syncope/seizures nearly everyday, and sometimes multiple times a day.  After I pass out, I do not remember what happened, and I am normally shaky afterwards for long periods of time.  I am tired all the time, and frequently get light-headed and dizzy upon standing.  I suffer from frequent headaches and stomach aches.

I used to play softball, basketball and volleyball, however I can’t participate in them anymore because of passing out/seizures.  I am hoping to graduate high school a year early, so my illness will not interfere with schooling anymore, and then I can go to college when I am capable.

Someday I hope there is a cure for POTS, but until then I believe a service dog would be very helpful.”

WE DO TOO!!!!!!!!!!!!!!!!!!!!!!!!

The second part of her application was to write another essay explaining why a service dog would be beneficial and what she feels she could offer in return to the dog.   Here is an excerpt of her essay:

“There are many reasons I believe a service dog would be beneficial for me.  One of the most important reasons is for my safety.  With passing out, comes falling, and falling could mean getting hurt.  I have gotten one concussion and injured my neck after passing out on the stairs.  I am hoping that a service dog could sense something was wrong and alert me to sit down before I pass out. After I pass out, I am often shaky, so a dog would help support me to make sure I don’t lose my balance and fall again.

Passing out has affected my social skills, and I get nervous talking to people in fear that I will pass out mid-conversation.  With a service dog, I believe it will give me confidence in myself because I know it is something that will not judge me by what happens to me.”

These excerpts just give a tiny glimpse into what she deals with everyday.  See why she is my hero?  🙂

Another piece of the application is a letter of recommendation from someone other than a family member. We chose one of Lukah’s teachers who has been with her when she had a seizure.  Here is an excerpt from the letter:

“Lukah is one of those people who brightens the room when she enters.  She is charismatic, driven and one of the bravest young adults I know.  Despite the odds that are against her, she has never let up on who she is as a student, a friend and a model citizen.

I had the unique experience of witnessing Lukah have a seizure in my classroom.  It was and will always leave a mark on me because it was such a difficult thing to witness.

I had to help Lukah as she fell out of her desk, all while trying to make sure the rest of the class wasn’t acting inappropriately or making it worse.  Two students ran to get the nurse and the principal of the building.  It didn’t last more than a few minutes, but it was one of the most shocking events I have ever witnessed. “

I cannot fathom how it feels to have seizures and never knowing when they would happen, and the fact that Lukah does every day amazes me. She is strong and courageous because she is not letting it win or stop her from living her life.”

(Did you need a tissue on that?  I sure did!)

Lukah also has to submit a picture.  Here is the one she chose.  It was taken just four weeks before The Beast entered her life:

The final step in her application process was to make a video introducing her family members and showing her home.  Here is the video we created:

http://youtu.be/GuBphJdWDfk

It makes me cry every time I watch it — other than watching my own part where I look and sound like a doof.  LOL!

I am excited to send all of this application information off to the organization tomorrow.  I am told it will take 2-3 weeks to know if she is approved, however, we have already been told that she is a good candidate so keep your fingers crossed that she is accepted into their program!

Her doctor is very much onboard with her getting a service dog so if it doesn’t work out with this organization, we will pursue another one, but I have hope that God will make this happen for her  — for us, because . . .

“Dogs are miracles with paws.”  – attributed to Susan Ariel Rainbow Kennedy.

I will update on our progress soon.

Until then, I will keep looking for Lukah.

God bless.

 

After You Fall . . . a guest post by Corey Case

My husband, Lukah’s father, wrote the following post on his blog last night about Lukah. It touched my heart so much that I had to share it here . . .

After you Fall (by Corey Case)

Since last March, my daughter Lukah has started having terrible seizures. We have been through many doctors and many hospitals to try to find an answer. It breaks my heart to see this once athletic lively girl reduced to being afraid to be in public for fear of having a seizure in front of people. She has shown me more courage than I could ever have imagined and her strength is what gives her mother and I the ambition to keep striving for answers. I truly believe that someday, this will all be a very bad memory and she will be flashing those huge dimples at me as often as she used to. Here is a picture of her when she was little.

 

See what I mean about those dimples. She has been diagnosed with POTS syndrome. Never heard of it? That’s okay, neither had we. Nor have most doctors that we have come in contact with. It stands for Postural orthostatic tachycardia syndrome. It basically is an extremely high jump in heart rate from lying to upright position that can cause fainting or even seizures. So they think it is caused by that or really deep in the brain epilepsy. It has taken almost a year and slogging through many internet forums to get ourselves to the correct doctors for this diagnosis. If you want to read more about the disease and coping with it, my wife has started a blog detailing her journey as a parent dealing with a child affected by this. http://lookingforlukah.com/Now let me show you a picture of Lukah before the monster came after her.

 

That is my little girl getting a kiss from me. Lately, there has been too many times where I have had to move wires aside to kiss that same cheek.

 

I want with everything in me to give her life back to her. She hates it when we say this but I wish that the monster had went after me rather than her. Thanks for listening and allowing me to educate.

AFTER YOU FALL

(for my sweet daughter Lukah)

There was a time

not so long ago

where our main worry

was if you had enough sunblock on.

You were so pretty

running around chasing your brother

as the wind blew your hair

and the sun kissed your face.

I can actually hear your laughter

as you roll around in the grass

fighting with the dog

over his coveted chew rope.

Somehow, some other force took over

ending those carefree days,

making you a prisoner of your own body,

robbing you of your youth.

There were so many calls

to rush to the school

that even when you are home

a ringing phone sinks my heart.

As a parent, I live in fear from this monster.

But I can’t imagine what you feel

when you drop and shake

and lose hours of your day.

Just know we won’t leave you.

We won’t give up on an answer.

As John Paul Jones exclaimed,

“I have not yet begun to fight!”

After you fall, we will be there

hopefully to catch you.

But sometimes its too late

and we have to just pick you back up.

Your strength gives me strength

and I’m amazed that you can still smile.

Remember, I will always be your dad

to help you after you fall.

Corey Case

2/4/14

This kind of post is pretty unusual for Corey — his blog is really funny.  If you’d like to check it out, the address is

http://coreycase.blogspot.com/

God Bless!

Save you.

Today, I lost it.

It is not a bad day. Nothing has technically “happened.” But the thoughts of last week came pouring in and I caved into them.

I tried to push the thoughts away, but I felt the lump in my throat swell and the pools of tears flooding my eyes and I knew it was too late. I had been holding it in.

As I drove to work, (my usual “think time”) the events of last week replayed in my mind and I just kept thinking of how much I want to save her because I never want to see her have to go through that again.  EVER.

Thursday, January 30 had been a pretty “normal” day (as normal as our days can be that is). I spent my day at work and knew things were ok at home because I hadn’t received any texts or calls saying Lukah was having a bad day.

I left work at my usual time and drove my 30 mile commute. When I hit a stoplight, I picked up my phone to check it quickly while I was stopped. I read this text from my husband and was instantly terrified:

“Go straight home. Lukah had a seizure and says she can’t sit up without passing out.”

While I was only about a mile away from my house when I read that text, it felt like the longest drive ever. I pulled into the driveway (no time to park in the garage) and raced into her room to find her laying the wrong way on the bed with her legs dangling off of it. Her brother was sitting with her. When I met his gaze I could see the look of pure fear in his eyes.

“What is going on?,” I asked.

“I had a seizure and hit my head on the wall and ever since I can’t sit up without passing out,” said Lukah.

My stomach dropped.

“When was the last time you tried?, ” I asked, trying to sound calm.

“About 15 minutes ago,” she said.

“Well, let’s try again,” I said.

Sure enough, she tried to pull herself up into a sitting position and about 3/4 of the way up, her eyes would roll back in her head and down she would go.

I asked her how many times she had passed out. “Four before you had me try,” she replied.

So that made five. I knew this wasn’t good.

I went to get her a glass of water when I heard a fall and ran back into the room.

She had intentionally slumped to the floor of her room, crawled to the hallway and into the bathroom because she felt like she was going to throw up. She was dizzy all the way.

She made it to the bathroom in time, and after getting sick, collapsed on the floor. She didn’t want to go anywhere — she just wanted to rest on the cold bathroom floor. I got her a pillow and blanket. And I got myself a kitchen chair and parked it in the hallway.

What a sight we would have been to someone walking in — her laying on the bathroom floor and me parked dutifully as her body-guard in a kitchen chair in the hallway.

Lukah tried to rest and as I watched her on that bathroom floor, I thought about how much I want to take this for her. She hates it when I say that but I do. It is not fair that she suffers so much. If I could only take it away and bear it for her . . . if I could only save her. . .

She decided she was ready to try to move to the couch. I called her brother in to help me. Surprisingly, we got her up and leaning on our shoulders as we walked. We made it to the living room before she passed out again (that makes 6). Unfortunately, we weren’t strong enough to hold her and she fell to the floor as she fainted.

It was humbling to see her there, so helpless. And I, her own mother, can’t do anything to help her. It is out of my hands.

We decided it was time to head the emergency room, so I called my husband and he came home from work.

When he got home, he went to our neighbor’s house to ask him for help getting Lukah into the van. They got her upright and supported by having her arms around their shoulders and she made it all the way to the van but then passed out as they were getting her into it (that makes 7).

We drove the 25 miles to the hospital. She did pretty good, but she was laying down the whole way.

When we got to the ER, I went in to talk to the admissions nurse. I explained that she could not sit up without passing out, so they wheeled out a bed for her instead. Three nurses and my husband helped guide her out of the van and onto the bed. She passed out again (8).

We talked to the ER doctor and nurses about her condition. Did I say talk? Oops I mean educated them on it (no one knows about this disorder I swear!).

They wanted to do orthostatic blood pressure readings on her. To those unfamiliar with them, that means they take your blood pressure in various positions: laying down, sitting up, squatting and standing. I thought to myself, “How is THAT gonna work?” Of course they were able to take the laying down one ok. But when they go to the sitting up one, she passed out (that’s 9). They gave up on all of the others.

In the ER, they drew some blood did a urine test. The nurses started her IV . . . typical stuff. Everything had to be done while she was laying down though of course, or she would pass out.

Here is her “lying down selfie.”

The blood work came back and her “D-Dimer” level was high. I had no idea what that meant but the ER Doctor explained it is an indicator for a blood clot. GAH!!!!!!!!!!!!!!!!!!!!!!!!!!

They whisked her off for a CT Scan to check for a clot. “WTH? NOW THIS?” I thought! About 1/2 hour later we found out there was not a clot. Whew.

About 5 hours into this, the ER doctor was unsure of what to do next so he called Lukah’s cardiologist, Dr. M.

Dr. M asked him to admit her, keep her on complete flat bed rest, and he would see her in the morning.

When Dr. M greeted us the next morning, he told us that her urine had tested positive for a urinary tract infection (also very common in dysautonomia). He checked her ears and noticed she had an ear infection, too. He started her on antibiotics.

He went on to explain that he believes her constant fainting was her body’s defense against the infections. In other words, because of those minor infections, her autonomic symptom of fainting, became extremely exaggerated.

I called Lukah’s autonomic neurologist in Chicago, Dr. B., to discuss, and he agreed. He said anything can set off her exaggerated autonomic responses: an infection, stress, a shot, etc.

C-R-A-Z-Y!

Here she is feeling a bit better on Friday when she was able to at least sit up partially for the picture.

Lukah remained in the hosptial until mid afternoon on Saturday when she was able to come home because she could walk without falling. Here is her nurse helping her walk the halls of of the hospital.

So far, she is doing well at home (as far as the passing out goes).

The Beast took her down for a bit, but she fought and thankfully, she is back on her feet. For now anyway.

I’m sure the image of her passing out time after time will replay in my mind for a while. It’s not something any mother wants to see. And it saddens me that this is her life — that this is what she deals with on a constant basis.   I want to save her from it.

There is a song that expresses exactly how I feel when I talk about saving her. It is by Simple Plan. Take a listen . . .

While I’m learning that I can’t save her, there is one thing I know I can do — keep “Looking for Lukah.”

God Bless.

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!