Morgan’s Story-Determination and Hope-You Are More!

Today’s “Fantastic Friday” RRP story is a feature on Morgan Toll.  I feel such a special connection to Morgan as we are both from the same area, have a story that really isn’t that far apart, and I know pieces of her family….she’s special and I hope you enjoy her story.  This is Morgan in her own words and I am so thankful she agreed to be the first story!  She’s amazing and it shines through! 

Little Morgan

I was eight months old when I was diagnosed with RRP, from then on, until I was around 12
years old, I had over 200 surgeries. The doctors said I had one of the worst cases they
had ever seen, having to go into have surgery every week, as if it were routine. I was young
and because I had grown up this way, it was all I ever knew. I never saw my illness as a
tragedy; I saw it as my life because I never knew anything different. 

I’ve heard stories from my parents about how I would pass out, turn blue, and have to be
rushed in an ambulance for immediate surgery, or how the hospital once didn’t have the laser
to remove the papillomas, so I was put in an induced coma for a week to stay alive. Now
when I hear those things, it tears me apart because I can not even imagine how my parents
must have felt, feeling like they were losing their baby girl to this awful disease. I can tell
you that I remember the grape smell of the mask right before surgery, the toy room, and my
anesthesiologist that would perform magic tricks to calm me down. I remember my mom
and dad crushing up the Popsicle for me after surgery so I could eat it. I remember them
crying right before I was being pushed down long hallways as I spoke to my doctors, and
then, everything going fuzzy right before I fell asleep. When I was six, I went in for a check
up and they said I would go into cardiac arrest because not enough oxygen was getting to my
heart. I had to have an immediate trach put in. I remember them bringing in a puppet to
explain my surgery, but I didn’t really understand. Afterwords, I stayed in the hospital which
seemed like forever.

The trach, for me, is what set me apart and made me start realizing things were different. I
wasn’t allowed to do certain things that I used to be able to do, like going swimming or
taking showers, or playing in the sand. Every night I was hooked up to multiple upon
multiple machines. I remember it scared a few of my friends, and they didn’t really want to
sleep over anymore. I knew I was different and I didn’t want it anymore.
When I was ten, I saw a doctor in Colorado that began to change everything for me. He
started injecting the mumps virus into the papillomas which began making them disappear. I
also I had a rib graft done, where they took a piece of my rib and put it in my throat to
reconstruct the airway.
Soon after, the trach finally came out.
It was a miracle. I, one of the worst cases the doctors had ever seen, was being put into
remission. I could finally be a “normal” kid.
Even though the disease had disappeared from my life, it seemed to follow me.
My voice became the only concern in my life.
The constant questions and people thinking that I was sick became so ordinary but
the number one thing it has held me back from, is the one thing I love most, acting.
From the time I was small, I knew in my heart that being on stage was all I ever wanted to
be. Which is really ironic, given the circumstances I was in, so of course, everyone always
told me that it was not possible. In highschool, I felt like I had given up hope; I started to
believe everyone around me and believed that I couldn’t do it. So I pretended that it didn’t
bother me, that I never wanted to act, that I wanted to be behind the scenes. 
I watched as people around me got parts, didn’t memorize their lines and fooled around. I
stayed behind the scenes, watching as others did what I wanted to do most of all. Then when
I went to college, I took an acting class which was required.
We were all paired into two and had to do a scene. Mine was a scene from the play “The
1
Beautiful People” and it was dramatic and beautiful, but I was terrified. I didnt want to act in
front of anyone, I didn’t want people to make fun of my voice.
Once I had performed the scene though, I was hooked again. I knew I couldn’t give this up,
not anymore. I became a part of an acting group in the school, and began performing in play
after play, and taking as many classes as I could, working as hard as I could, wanting to learn
as much as possible about this wonderful craft that I love.
People were still telling me that I couldnt do it, telling me the only characters I could play
were sick ones, but I stayed strong and refused to listen.
I didn’t let this disease I once had take control of me again.
In my third year in college, I auditioned for the play “Fools” and I got the lead. It was the
first time I felt like I was getting the chance to prove that I could do this. Not just to people,
but to myself. Members of the acting group tried to kick me out of the play, they said I
couldn’t be the lead because no one would hear me, I fought back again and even more.
The first night of the play, in this small theater, the audience was packed. People were sitting
on the stairs and some had to be sent away, it was crazy. I was so nervous, but felt this
energy inside me that bursted out and led me throughout the performance.
When it was over, everyone began to applaud and stand up. My eyes started tearing up. I did
it, I stayed strong and proved that I can do this, and it was amazing.
Nobody could understand how much this silly play meant to me, and I would hold onto that
feeling for the rest of my life.
Then, last year, things started to change again. I started feeling shortness of breath and my
voice was getting weaker than usual.

I went in to see a doctor and wondered if there was any way I could get my voice fixed, after
being in remission for so long.
The doctor told me that my airway was narrow, the size of a three year olds, and that there
was no way to ever fix my voice. That I would never speak normally again.
It was a lot to take in. It was a hope I had in the back of my mind that very quickly started to
crumble.
I started seeing more doctors because of my airway. No one understood how it was getting
more narrow all of a sudden. The scar tissue, due to all the surgeries I had, was somehow
beginning to grow. I worried about having surgery, worried the papillomas would come
back if it was messed with, worried I would lose my voice all together.
I started going to the emergency room because I was feeling more shortness of breath. Soon
after, I decided to go to a doctor in Boston who chose to remove part of my vocal cord and
open my airway more. The surgery had successful results, but it did not last very long. After
I flew back to California, the scar tissue grew back, making my airway even smaller than it
was before. I became ill with pneumonia and spent three days in the ICU and on the fourth
day, I had to fly back to Boston to have another surgery. My breathing was getting worse and
worse; just getting up out of bed or walking across the room would cause me to be
completely out of breath.
Two months after my surgery in Boston, I went in for a check up at Johns Hopkins in
Baltimore and they told me I would have to have an immediate awake tracheotomy and I
would not be permitted to leave the hospital without one.

My whole world seemed to shatter in that moment. I was so scared, it was happening so fast
and I felt so alone. I couldn’t believe this was happening all over again and I didn’t
understand why, yet I knew it had to be done. Today I still have the trach, and my doctors are trying to figure a way for it to be removed eventually. I currently have zero vocal cords but I still have my raspy voice.

Despite all that though, I am okay. I am actually more okay now than I ever have been. I can
breathe, and let me tell you, people can really take advantage of the whole breathing thing
because you don’t know how amazing it feels to breathe that very first deep breath for the
first time after not being able to breathe at all.
I have come to terms with my illness.
I know that it is all in God’s plan and no matter what happens, it will all be ok.
A lot of people might think that I am weaker because of all of this, but i feel so strong.

I am strong because I’ve spent my whole life battling this,
I am strong because I refuse to let someone tell me that I am less than because of it,
I am strong because I refuse to give up,
I am strong because every single day I am so thankful to be alive and breathing.
I am strong because I have God in my life, right beside me everyday, telling me that it’s
going to be okay.
I of course have my days where my heart breaks a little because of the things this illness still
holds me back from, knowing I may never be on that stage again. But what keeps me
together is that strength, the strength that tells me that no matter what, I am never going to
give up.
That’s what I try and share with everyone. I want everyone out there to know, anyone with a
disability, an illness, or a feeling like you are less than, I want you to know that you are more
than you could ever imagine. You are more.

Normal is Boring!

Words That Keep You Awake

What a southern Momma will do!

I received a text from my college son last night.  “good grief….ICOC is on campuses in Nashville.  Just had a random student come up and invite me to a “nondenominational” Bible study……..so thankful I was the person to run into him.” (I left out the middle of the conversation…..some of this is just my son’s story to tell and not mine.)

Doesn’t sound like much does it?  Not a text you would consider “words that keep you awake,” but there’s a back story to this that will get us to the story today.

Backtrack to Fall of 2012.  Our son had taken his wings and flown off to Boston University.  One of our desires for him was for him to get plugged in to a great student ministry so that he could have a circle around him on those days/hours/minutes life is throwing grenades.  Staying grounded in his faith.  We, as his parents, were so happy for him when he said he had been approached by a group of students about a “nondenominational” study.  Looking back, all the signs were there he was slowly beginning to struggle (not academically-he excelled!).  About six weeks in, the phone call came from Josh.  You want to bring a Momma to her knees in record speed-let the sound on the other side be your son in such a broken, hurt, angry place that all you want to do is get the next ticket on Delta and get there.  It was on this night….the night of his call…that he told us that tonight’s “Bible” study was what we now know was a “breaking session.”  My heart is melting as I type just recalling those conversations the next few days, the pain I felt for my son…..and the thankfulness that I gave to God for protecting him in that moment.  Josh is strong…but he has a heart of gold.  He knows the truth.  He has been grounded in that truth.  It was on that night, in those moments, that truth brought him out.

Now came where he knew who this group really was….we were in the loop as well.  ICOC.  International Church of Christ.  We quickly all learned this group had been banned on Boston college campuses for years and had found a loop-hole in that ban.  Meet just off campus. If you know anything about BU, you know that it is on Commonwealth and one side will be campus and across the street can be businesses.  Police reports filed…..Campus Ministries involved…..my son had been almost proselytized into this cult/heretical religious group and the TRUTH and God’s love for Him is why he was not.

My heart grows heavy when I think of the kids that don’t have that armor…the armor of truth. Josh still bears the scars from that semester and I know that semester played a role in his decision to transfer for his sophomore year to Nashville.  Those scars have led him to be very untrusting when he hears the word “nondenominational.”  We, as parents, should teach our children to question that word…because it has to believe in something….what are those beliefs and who does that “study” or “church” most align themselves with?

So, we are at last night, and the words that keep you awake.  ICOC is in Nashville.  Won’t be called ICOC on the door, and it is NOT the same as other Church of Christ denominations!  What we learned two years ago, is they will just rebrand as they are brought into the light for who they are. ICOC is a cult.  A cult pretending to be a Bible preaching church.  In Nashville, in the Bible belt….approaching my son.  I am an angry Mom today.  Angry that this old wound is having to be dealt with.  Thankful that my son knew what to do.  Grateful for his protection, once again.

We hear of kids getting pulled into things like this and I think as a Christian family, we want to dismiss the chances it could be our kid…..but it can be our kid most of all….they are the ones out there seeking groups to share the Bible with…to study with…to fellowship with…and groups like ICOC…that’s exactly what they sell those first couple of weeks…and then it slowly begins….the breaking of a child…my child, your child.  I will never fully understand what that last night in Boston was like for my son….but I do know this….ICOC of Nashville….you approached the wrong kid last night.  You approached the wrong son-you approached my son…and this Momma Hen…well, she has an army of prayer partners who she’s calling up to duty today.

I will not go into the details of ICOC on this blog. I don’t want to give them the audience.  Google/You-Tube…it’s instantly available.  Barbara Walters exposed them all the way back in 1993.  FOX news just last year.  They are on “cult-watch.”  All of the information is readily available.

An angry, hurt, thankful Momma Hen today……

K

Empty Nest…it’s for the birds.

Four cups of coffee so far today and I could still crawl back in bed for a long summer nap…..but alas….I can never sleep during the day (Unless near death from the latest plague I picked up from the grands-AKA walking petri dishes….. or the shopping cart at the grocery store….).  So, today we are going to chat about the empty nest….because that empty nest is the reason for this fatigue today…or maybe it’s the food choices made while traveling ….but who doesn’t need a candy bar or two or three on a road trip????  We moved our son back into college this weekend…year three.  

Empty Nest is that season of life where all the birdies are flown off to college/life and you are left with empty rooms, quiet spaces and a much smaller grocery bill.  You know. that season you begged for as they were kiddos who couldn’t make it to the bathroom when they had a stomach bug, or the days they were screaming for no reason other than to hear the sound of their voice?  Maybe it was the day you begged for graduation to come quickly so you could take a bath in peace again….no matter the outcome…we have all been there done that on wishing time away during those super hard days of parenting.  And then it comes.  That day.  

I have to say that the first year was probably the easiest for this nest.  You get so caught up in their excitement over the entire process, you honestly don’t realize what’s barreling down the tracks at warp speed.  Every box, tote, shopping list is another adventure…a new experience to share.  The day comes to load the cars and off you go.  (In our case, the first year was a college 23 hours away…so most of it was loaded into boxes for Fed Ex or purchased upon arrival.) You arrive and it’s still honestly ok.  Your chick is kinda starting to freak out over the whole…wait a minute…this is happening and looks to you for those moments of assurance and confidence only the owner of the nest can provide at that time.  Life is still pretty rosy in the nest.  Unpack, set up, attend various parent events for first year students and then off to the house you go while the student begins year one.  Still ok….because for the masses, most of the kiddos are less than two to three hours away…easy to visit on weekends and such.  It’s like they are at camp.  (A very expensive camp!)  We had that version with kiddo one, but kiddo two was off to far away lands…..

And this is where my nest begins……prior to our last kiddo loading up boxes to begin their adventure outside of our nest, we had already experienced two summers of this kiddo being gone.  Far, far away…..he had played with BUTI in western MA and it meant sending him off on a plane for six weeks, with maybe one visit by us all summer.  Freshman year off to Boston University this kiddo went.  Home for the holidays was it….and maybe one parent visit up to Boston during the semester.  Hard.  For the sophomore year, a transfer to Nashville to Belmont was in order.  Boston, the city, was amazing.  It treated my kiddo well and in return my kiddo fell in love with all it offers.  A transfer was still the right thing in this season for him.  So, we go from a plane ride away to a nine hour drive away…..I was giddy thinking how much better this would be for this Momma Bird.  Fail.  It’s still hard.  And today, we start year three of the empty nest…..with our kiddo being gone all summer playing in the Aspen Music Festival, we honestly had about 48 hours with him in the past nine weeks…and then it was goodbye again.  I dislike goodbyes.  

I’ve heard people chat about how much they love this phase of their life.  I just feel unemployed.  My job was raising my kiddos….and that job, for the most part, is now over.  I think about what is truly missing in our nest now…and it’s those day to day interactions.  Hearing about this or that event….being a connected part to their world.  I am so thankful for Facebook, Face time and texting.  The world does seem a tad bit smaller than I am sure it did to parents twenty years ago….but it’s still an empty nest.  The bedrooms are empty.  The chair is vacant at dinner.  Your heart feels bigger and fuller for all that you see them accomplishing, but it also feels a tad bit empty over that piece not being there to say good-night to in person.  Empty nest-it’s for the birds…….

Don’t misunderstand me….I am beyond thrilled at this journey my kiddos are on in life.  I am so thankful that no dream was too big to go after….and that my last kiddo was so full of confidence and adventure that no distance was too far in order to make his dreams come true.  I cheer that part of the empty nest.  I just wish the other part didn’t go by so quickly.  In the blink of an eye…it was over.  

So, today, I sit here in full understanding of being told to “number their days” as they are few.  Then they are off to tackle the world in their own incredible individual way.  It’s just quiet.  I miss Spongebob blaring from the TV. I miss the unmade bed.  I miss cooking for my baby birds.  I miss all of it.  Being their Mom was truly the greatest gift God ever gave to me…and that was my sole job for over twenty years…..and that job is completed.  Contract fulfilled.  Year three has started and before I blink again, it will be time to pack up this last kiddo and make the move to graduate school…in a town far, far away again.  

Raising kiddos is hard.  There are days you dream of the nest being empty and all the freedom you will have.  The empty nest comes…..and you realize that those moments of insanity were some of the most joyous days of your life.  The days of what matters…..life…the stuff that makes up life and the memories you store inside your heart.  

So, embrace that third cup of spilled milk on the new carpet…..cherish those fights between siblings that even the UN could not mediate….breathe in…breathe out….and know that the days are numbered and the last one comes before you are ready….and then it’s done.  

To my Megzie and my own Harry Potter….you are loved to the moon and back and back again…..and I am so proud of you having such strong wings!  

My Harry Potter…