Sunday, March 17, 2013

Thankful Thursday or Not?

**I wrote this on Thursday, but I wanted to include photos and I used all my spoons to write the post. But then on Friday I had no spoons and Saturday I had no spoons and today when I look for the photos I want to share, I cannot find them. So, it is not Thursday. It is Sunday and I've debated whether or not to publish this post because I was really in a bad mood on Thursday. But, it is truthful and makes me smile at the end and so I can't help but share.**

Is it Thursday? I seriously do not know the days anymore. But my iPhone confirms it is Thursday, March 14th, 2013. Why thank you, Siri.

I am in no mood to be thankful. I have been bedbound for a few weeks with what feels like an alternating knife, drill and sometimes a hammer and nail attacking my head. I believe that if outsiders could see the pain in this way, they might just puke just as they might if they really saw a someone hammering a nail in the space between my eyes.

They'd be horrified, just as my husband is when he comes home to finding me curled in a ball, eyes closed, using sign language so I don't have to speak and hear my voice or noise period, holding up a finger (not that one) for George to stop moving. Yeah. I can't stand movement: his, mine, the dogs, or the neighbor's car. I can only imagine that it feels like an electrical current shooting through my body; but I've never experienced that...Thankfully.

But I hadn't eaten in eight hours and George has to get my weak body propped up to eat supper. I have to move (OH WAIT "ZOFRAN!") so that he can give me a shot of burning Toradol in my rump. He has an essential tremor and his hands are shakier since his September coma though the neurologist says it is not a big deal. Guess he isn't having George stick an inch and a half needle in his rump!  But I don't care as I keep envisioning the Toradol as this army of big goobers running through my system to kick out the utensils which are progressing into my skull, to squelch the pain and to hopefully bring my body to a place of tolerance.

Did you want to hear that? I'm guessing not so much. There are some Migraineurs who really take complaining/whining to a new level and I think it is appropriate at times, but I have always believed in finding the joy in the hard times. I find it easier to find the balance in truth. They say that humor and being positive and happy is supposed to help pain. And actually gratitude is supposed to have healing properties. But lately, my pain has turned me into a sullen, dark, angry creature who has holed herself away and I DO NOT want to write this post, but my there must be some essence of "Kelly" inside because she wants to say she is thankful.

Monday, March 11th would have been my Mister Knightley's 10th birthday. George and I sing a lot, not to music, but to our own drummer to be silly or to connect and to have fun. And even if I put happy intonations into something simple as "Twinkle Twinkle", Knightley would only ever react to the "Happy Birthday" song. He LOVED the birthday song. I wish I had his reaction on video. I may somewhere. We'd sing Happy Birthday to him randomly and on other people's birthdays because he would get happy and twirl and we all were uplifted.

I am so thankful for my boy. He was ever watchful. He was ever comforting. He loved to dump out trash cans and rip up tissue paper and then come to me and tell on himself with lowered ears. I'd have to keep from laughing as I'd known exactly what he had done. He would follow me to the end of the earth and was my constant shadow (except when dumping trash cans that is). Zoe and later Giselle would stay put not wanting to disturb their slumber. But there was a deep connection and no matter how much it hurt his poor hips (moderately severe hip dysplasia) to get up and down, I was his mommy and he wanted to be with me.

And he knew me by name: Mommy. He was a smart little bugger: George and I would have to keep changing our nick-names for him: ones we would use when we wanted to tell the other something, such as "look at his cute pose", about Mister K, Rufus, Puppy, Knightster, or Gromit (named after an intelligent dog in stop-animation features). He even knew Zoe's name and knew my husband by "George" or "Daddy". Knightley and I shared a favorite command "Kiss George." He would lick George like crazy. George was not fond of the command which is how Knightley learned I was "Mommy" as the command was turned onto me!    

As he got older, he got to be a stubborn old man, refusing to come in out of the snow and I used his vast vocabulary comprehension against him by yelling out the door "Are you hungry?!" It never failed. Though I had been calling his name and whistling relentlessly, he would ignore me, but once I asked him about food, he heard and would come tearing up the stairs and inside. I talk a lot to my dogs, but neither of the girls have the comprehension he did though Zoe knows more "tricks" and Giselle just learned to "kiss" on command.

Knightley loved to be groomed and nail trimmings were a piece of cake which helped when my scared rescue dogs came into our household. He would fall asleep every time and was a great model for them. I would lay them next to him and he showed them it was okay. Now nail trimmings with the girls are a piece of cake. Thanks Knightley!

The happiest I saw Knightley was at the beach. In May 2011, we took him and Zoe to a secluded beach house where we had to drive six miles on the beach to get there. It was the first week of May and it was as if we were on an island by ourselves with the occasional car driving by. Knightley loved to dig in the sand chasing the bubbles and shells. He would jump after a ball or shell into the surf. He would sit and watch the waves peacefully. Though watching the birds and wild horses were more of an active attraction rather than a watching attraction for him!  He got Zoe over her fear of the ocean and she started to have fun too. He really helped his rescued sisters.

So on what would have been his birthday on Monday, I was thankful. I decided not to be sad. I was happy that I got to be Knightley's mommy. I sang to a gold framed 8x10 photo of him hanging in our bedroom "Happy Birthday" choking back the tears that wanted to creep up. And then I noticed a commotion behind me, on the bed, Zoe and Giselle who had both been deep in sleep had not only roused but were on the bed dancing in circles. They were celebrating too or at least were happy that their mommy was.

We were to take Knightley back to the beach he loved in September 2012, but he died suddenly and unexpectedly in June in a way that was my worst nightmare. So, one morning, before the sun rose in September, George and I walked out to the beach and as soon as the sun started rising, we both scattered some of his ashes on the sand and in the waves.  And it will always be a happy place for me to go and remember him. My faithful boy, I am thankful for you and the impact you made on my life.


*PS* I actually feel a little better. Guess there is something to this gratitude thing!!

Saturday, March 2, 2013

Laughing with Mein Schnecken

I have obviously not been posting. I've drafted some blogs, but because my philosophy in writing has been "write what you know"; the nature of what happening in my personal life is muzzling me and so I have been unable to write.  However I will return at some point, hopefully soon.

Among other things, I am suffering form severe depression and as anyone with depression knows, a dark veil covers one's whole world and not a speck of light is able to come in.

But wait, this is not about depression or anything else dreary so do not stop reading!

Tonight I was about to write a status update on Facebook (about celebrating the end of George's busiest part of his busy season at work: aka We Never See Each Other Season) and how I'm thrilled to be spending time with Mein Schnecken.

George is of German decent and each time he calls me on the phone or comes in the door for as long as I can remember, he calls up to me and says "Hello Liebschen!" Liebschen is German for sweetheart; it was one of the first things he said to me when he awoke from his coma in September. I am thankful to be called Liebschen many times a day; I don't think I hear him call me "Kelly" unless he is trying to wake me up.

So I of course I have a German name that I call him. I'm not sure how I chose it, but it the movie The Birdcage did have a part in it. This movie always makes me smile.
And for some reason I was under the impression that "Schnecken" meant honey bun or something similar.  But something inside of me said to check an German/English dictionary before posting about "Mein Schnecken" and I did and found out that "Schnecken" is literally the plural form of "snail!!" I laughed out loud so hard in a way I haven't in months. For years, I have been calling my darling husband "my snail" (or snails if you want to be literal)!

Later, George came home, I shared I what I had discovered and after a good laugh, we Googled "Schnecken." I was relieved that Wikipedia had THIS article at the top of the list saying that in fact Schnecken is a type of sweet bun that was served in the early 1900's by Jewish immigrants and the pastry is in the shape of a snail.

So I will continue to call George, "mein Schnecken," but we will always have a laugh about the snail part.

Man, it felt good to laugh like that.

Wednesday, February 13, 2013

Chronic Migraine Warrior Invaluable Lessons

I want to give a shout out and encouragement to my dear friend, Jamie, who authors the blog, Chronic Migraine Warrior, which tag line reads "This blog is a place that I can share my personal journey as a chronic Migraineur, help raise awareness of Migraine, and provide a safe and open space for discussion with others that are experiencing their own battles."

She has put/is putting together a fabulous series called "Lessons." You will find her to-date "Lessons" installments listed below with links to each post. In my opinion, anyone: chronically ill or average healthy person would benefit from her perspective and valuable perspective.

Pick a link below and check Jamie out. Her writing is a hidden gem that you shouldn't miss out on!

Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Perfectionism (Part 1)
Lessons: Perfectionism (Part 2)
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)
Lessons: Learning to Accept Imperfection (Part 3)
Lessons: Grace & Forgiveness (Part 1)
Lessons: Grace & Forgiveness (Part 2)
Lessons: Grace & Forgiveness (Part 3)

Thursday, January 3, 2013

Dear Joe,

On behalf of all the people including myself who wanted to and never got to say "Thank you", 

Thank you. 

For the last twenty two years (Since I was eleven!), I have heard your name float through the life of my family. I know you know that my dad has held you in very high regard as a man but also as a friend.

Thank you for being such a good friend and mentor to my dad and a person that he and many others look up to. Thank you for encouraging my dad to take better care of his health and getting him to Mayo Clinic years ago so that he can be around as long as possible. A daughter always wants her daddy to be taken care of and that you guided and helped him be taken care of for years to come...well, there isn't enough "thank you's" for that.

Though you are too young to be my dad's dad, you are close to being old enough to be my grandfather. And although your physical presence was not in my life, your care that a grandfather would have for his kin was present and felt. What an incredible gift to have given and for our family to have been blessed to receive.

Thank you for getting me to Mayo Clinic last year. Thank you for making sure I was getting the most excellent care. Thank you for going to bat for me and for so many others and for making things happen at Mayo Clinic in wonderful ways through your incredible generosity. I cannot tell you how grateful I am for the special care and attention I was given on your behalf. What a special person you are. Thank you for putting me in the hands of people who made such a complicated experience easier. George and I both were so grateful and your name was on our lips each day of the two weeks we were there. I am sad I never told you so.

I am sorry that George and I were unable to visit you this summer at your invitation. I am sorry that a letter never got written because life happened. I would have told you that I am blessed to have been given such a gift and that I am touched by your incredible heart.

I am glad you were at Mayo, a place that you believed in so much and where you helped change and will continue to change many people's lives. There will be an empty place here on earth where your generosity of spirit and love existed. But I take comfort in knowing you are at peace and are not hurting anymore.

My heart aches for your family and those who cared so much for you...including my dad.

You were an incredible man with an enormous heart.

Thank you, Joe, for being you.

With a full and grieving heart,













Kelly




video 
(Video taken in the Hall of Benefactors on 3/15/12; 
Joe was a Principal Benefactor of Mayo Clinic.)
Please consider making a donation to the Mayo Clinic
 in honor and memory of this incredible man by clicking here.

Saturday, December 8, 2012

Therapeutic Companions

As an adult, I have had three dogs. Aside from my husband, they are the loves of my life and though it may be hard to understand for some, I love them like they are my kids. All three have unique dog personalities and have helped me cope with my disabling Migraine and constant headache in their own ways.
Mr. Knightley...ah, my Mister Knightley or simply Knightley for short was what Emma called the man she fell in love with in Jane Austen's novel Emma. I was given my Mr. Knightley, a ten week old Blehneim Cavalier King Charles Spaniel by my parents as a present for my graduation from graduate school when I was twenty-three years old on May 25, 2003. It was ironic that in Emma, Mr. Knightley's first name is George...the same name as my husband who I did not meet until a year and a half later. I was told that male Cavaliers fall in love with their owners and my Knightley lived up to that and then some. I always told Knightley that he was born out of the womb of my heart.

Zoe (pronounced "Zoey") means life. I was not particularly fond of her given name, but when we met her, "Lily" did not match her tomboy-ish attitude. She is intelligent and with her tail wagging, she thinks every person in her view is coming to meet her. She is the youngest and about to turn five years old in January. Zoe is a Black and Tan Cavalier King Charles Spaniel. On August 4, 2009, we got her from a rescue organization specifically for the breed called Cavalier Rescue USA. (You can see her photo on the website's homepage along with some of my family's other Cavaliers: #4) She was 18 months old. Her prior owners could not afford to care for her after losing their job, and we were so happy to add her to our family.

Giselle was renamed after we adopted her because we felt she deserved a new name to go with her new life. She had had a rough start to life and has an anxiety disorder unofficially referred to as "fly-biting". We named her after a character in one of our favorite Disney movies Enchanted but the only thing she has in common with the Disney character is that they both have red hair as Giselle is a Ruby Cavalier King Charles Spaniel. We got her from Cavalier Rescue USA as well. She had just turned four years old and had been living with her wonderful foster mommy Julie and three cavaliers for a couple months when we adopted her on May 21, 2011. Since she has been with us, she's grown her coat, gained weight and her anxiety disorder has improved though it is still very much present. I am starting to see her become more like a happy healthy dog every day instead of the traumatized little one we adopted.

Recovering from Endolymphatic Sac Decompression Surgery
How the dogs help me cope with my chronic illnesses is largely by being my companions. They help me feel less alone, which is the most important thing for someone who is home bound. Pain can often make one lose perspective, but having my dogs around helps to keep me grounded. They also make me laugh with their silly antics

I love my girls, Zoe and Giselle. They motivate me to get moving and take walks with them when I can. They cuddle when they want to. Zoe is a pro at helping me through anxiety and panic attacks as she is very perceptive. If I'm laying down crying, she will nudge her muzzle under my chin and lift it up. She also gives "hugs". For a dog who likes her space, she is quite attentive when she picks up something is wrong. 
Cuddling during a bad Migraine attack.
 There is a huge hole that was left when my Mr. Knightley died suddenly at 9 years old from Immune Mediated Hemolytic Anemia (IMHA) on June 8, 2012. He had shared this journey with me from the start of my disabling Migraines and Headaches for four years before we adopted Zoe. Knightley was my caregiver when George was at work, and he knew it. Please read more on how my Mr. Knightley made it onto CNN Health online and how he helped me through Migraine disease by checking out Sharing My Heart & Hope With the World via CNN.
My boy taking care me during a Migraine on vacation. May 2011

Tuesday, December 4, 2012

Sincerely Sick Style

One of my fellow Migrainuers, Kelly, recently started a blog called Sincerely Sick Style that I am so excited about and thrilled to share with my readers. Her tag line reads:
A place for the sincerely and seriously sick to learn to fake looking well and how to take care of their skin, hair, nails, makeup, etc with the least amount of effort possible.
Sincerely Sick Style is a unique blog that fills a need for those of us who are chronically ill: how do we look good while feeling terrible with minimal effort? 

Throughout the four years I have known Kelly, I have witnessed our chronically ill buddies repeatedly go to her for beauty tips and product suggestions. Kelly has a treasure trove of invaluable tips and suggestions gleaned from her life experience as a chronically ill person. 

In her most recent post, Winter Skin Fixes, I was happy to find out that the fact many of us chronic Migrainuers do not shower very often actually can be beneficial for our skin in the winter because we aren't removing our skin's natural oils. I bet with this knowledge, my non-chronically ill readers are now jealous of our community's dirty little secret of lack of showering, even though you may be cringing!

Sincerely Sick Style is easy to read and filled with links to products and contains useful information regardless of your illness status. I particularly appreciate that products that are also in a reasonable price range are recommended.

Check out Sincerely Sick Style which Kelly describes to be "a lifestyle blog about looking fabulous while feeling awful all of the time. My primary audience is people who suffer from chronic illness and therefore don't have a lot of time or energy to take care of their looks.  But anyone can benefit from my advice on skin, hair, makeup and nails."

Sunday, October 21, 2012

Trauma 22 Years Apart: My Brother & My Husband

*Warning: This post contains content and photos that may be uncomfortable for some readers.*

This post is quite long and is unlike a typical post I would write as it describes two traumatic and miraculous events that I witnessed of two beloved people in my life: my brother and my husband. Twenty-two years apart, I found my brother (1990) and my husband (2012) unconscious and seizing.  I have an extremely visual memory, so everything I am sharing is like a video recording being played back in my mind. I have had flashbacks where I have relived some of these events, both with my brother and with my husband. Because I have a better recollection of what happened with my husband, there is more detail. I need to write this out as a therapeutic outlet and my blog happens to be where I have decided to share it. There are many people who experienced these events I am sharing and each has a different perspective and may remember more or less details than I do.
However, this is my story:
***
At ten years old, I was a light sleeper. My brother, who was seven and a half years old would sometimes wake very early in the morning by playing or singing in his bedroom. One particular morning around 3 or 4 am, I woke up to what sounded like my brother singing in his bedroom again. We had out of town company and the guest room was between our second floor bedrooms. So, I ran to his room and yelled into the darkness using my best quiet voice, "BE QUIET!"

After returning to my bed, I realized my brother had not silenced. So, I turned around and went into his room upset he wasn't listening to me. The strong odor of urine hit me. Funny how I still remember it... His sheets were tussled. In the dark, my brother was writhing around on the floor of his bedroom moaning...not singing.  I don't remember how long or if I tried to get him to respond, but not understanding that my brother was unconscious and seizing, I ran down the stairs to my parents' first floor bedroom and woke up my mom; my dad had just left to go out of town on a business trip.

My mom carried my brother downstairs to try to wake him. I have a faint memory of sitting on the stairs watching through the vertical railing of the banister as the paramedics went into my parents' room. However, I very clearly remember later looking through my bedroom window blinds watching them put my brother into the ambulance and seeing it drive away--thinking it was odd that they were not using the sirens and only the lights. That moment is etched into my psyche. Silent ambulance in the dark of the morning driving away with my brother; inside I was quietly crying for the sirens that weren't. 

After the local ER, my brother was transferred to the Pediatric Intensive Care Unit (PICU) at Texas Children's Hospital in Houston, Texas, where we lived at the time. He was in a coma and still seizing. Something was happening to his brain but the doctors did not know what it was.  Later, probably when I was older, I was told more about his seizing and that his EEG (test for brain waves) was "extremely abnormal"; how he had to be restrained; how they said it had been likely he would not wake up; how they said if he did wake up he could be mentally disabled; how they said because of the severity of his condition he might not survive.

I remember staying home from school and watching "People's Court" with my mom's older sister who was our out of town company. I have a very strong visual memory of being with my cousin in my bedroom and telling her to appreciate her brother. I remember when I returned to school, teachers would whisper around me and it felt like I was being treated differently. I remember it feeling like things were changing but I didn't know how to process it.
Myself (10 years old) and my brother (7 1/2 years old) @Grand Teton National Park

***
On Sunday morning, September 23rd, 2012, which still feels like yesterday, I was sleeping in a different room from George and woke up at 3:30am to what I thought was snoring, so I assumed he was sleeping. Around 7:45am, I went in to wake George who was laying on his back. Giselle (our ten pound Cavalier) climbed on top of him, sniffing him intensely and I was hoping she wouldn't wake him up because my intention was to snuggle up next to him.

As I got closer, I realized that the "snore" was not a snore, it was some weird noise that I cannot describe nor imitate. I sensed something was very wrong. I started calling his name and shaking him. George was hot, so I stripped the blankets and bed sheets off of him and everything was soaked. He sounded like he was aspirating (fluid going into the airway) with this "snore," so the Speech Language Pathologist (SLP) in me rolled him on his side to open his airway and his face flopped to the pillow, so I immediately had to roll him back. Then George started seizing: eyes rolled back, odd moaning, muscle spasming. But, was not what I would expect from a seizure which is why I think I was a bit dumb-founded at first. He almost looked like he was trying to sit up with his arms outstretched which was something he would repeat with other seizures.

At one point, before I realized he was seizing, I was trying to get him to follow simple commands (again the SLP in me) which he wasn't, and the whole time, I was screaming, "I'm gonna call 911, George!" hoping to rouse him.

The 911 operator asked me if I had a defibrillator which scared the crap out of me. I've taken CPR so I know you use a defibrillator to reset the heart rhythm and of course we don't have one. She wanted me to put him on the ground but there was no way I could do that. And within what felt like seconds, the parameds were walking in our bedroom. I watched five men descend on and eventually stand on our king sized bed over George and was asked several questions. Then I was led out of the bedroom by a policewoman as they were cutting off George's gray long sleeved t-shirt.

I wanted to fight her to get back to George as I didn't want to leave him alone even though I knew the paramedics had to do what they had to do. My brain was scrambled eggs as she asked me even more questions in the entryway to our kitchen. She told me to call a friend to drive me to the hospital and I did.

Note to anyone who sees an ambulance/fire truck/squad car parked at someone's house: do not approach as if it is a show to be watched as it could be someone's nightmare unfolding. And by all means do NOT bring your three year old grandchildren over because "they like fire trucks."

Aside from initially finding George, which was terrifying, what is etched in my memory was seeing George being carried down the front cement steps to the ambulance and feeling the ache that I didn't get to kiss his forehead or touch his shoulder before he was taken. Still disoriented, my dear friend and the policewoman helped me get myself together, clothes & shoes on, dogs in their crate, a bag of Kelly-friendly food, phone & charger and the house locked.

I called George's parents' and mine, who all live out of town, on the ride to the hospital and somehow expected that when my friend and I arrived at the hospital George would be awake. But when we arrived, they didn't bring us back to George; they didn't have us sit in the waiting room; they brought us to the "Quiet Room," a room with two yellow couches that looked all too much like the room where a vet came in to tell us Knightley had died. We were told the doctor would be in to talk with us. My friend kept my head glued on (she must have had some pretty powerful super-glue) and kept me in the moment.
"Go with the strength you have, " the Lord said to Gideon. "I will be with you.' - Judges 6:14&16
The doctor came in, told me George had been intubated and was on a ventilator that was breathing for him and that he was getting tests to rule out things like stroke, brain tumor ect. He said they would bring us back to George when he was in his ER room. The wait felt like an eternity.  Finally, we were led back to George, though we still knew nothing about his condition. And there he was, laying on the gurney with a vent breathing for him.
My friend, who wasn't feeling so hot herself, took phenomenal care of me so I could care for George. God had certainly intervened so that she could be by my side and I am SO thankful that I had her as my advocate. When I would forget what the doctors had told me, she would remind me so I could relay it to family. She kept telling me to eat/drink/sit and even got one of those pink recliner chairs for me because my body was crashing. Having medical power of attorney, I was giving my consent for things like a lumbar puncture and an MRI--they even called me in the middle of the night when he was in the Intensive Care Unit (ICU) so that he could have a central line placed in his neck.
Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -Isaiah 41:10
Unresponsive, on the ventilator in the ER Sunday morning.
It was a good and a terrible thing that I have a medical background as a Speech Language Pathologist but also as a health advocate. I knew enough to know and be thankful for the good news that was coming in but I also knew how bad it was. George failed one of the eye neurological tests and because of his state: unresponsive to stimuli they scheduled an MRI to look for a deep brain stem stroke. Short explanation: deep brain stem is the central processing center for your brain- if it doesn't work-nothing else does.

So, they took him to MRI and I was hoping to catch a nap while he was there, but then my heart fell to the floor when I heard the intercom emergency alert that goes through the whole hospital repeat three times: "Emergency Response Team to MRI" I thought he was dying and we had no way of knowing what had happened.  I completely melted-down but my friend held me up. We found out after a long wait that George had started seizing again when they moved him to the MRI. I didn't get the nap. Spoons were in the high negative numbers at that point.
He gives power to the weak, And to those who have no might He increases strength. -Isaiah 40:29
My uncle (dad's brother) surprised me by showing up in the ER and relieved my dear friend who had been with me (and George) for eight plus hours. George and my uncle get along famously.  In April, my uncle had ended up in the hospital himself as the result of a traumatic emergency situation and George left work so that he could be with my uncle before his emergency surgery and continued to visit him after that.

Getting EEG in ER
I hated the ER. I felt like I was the only one that was watching over George, which my mom said she also felt when my brother was in the ER. One time when I was alone, George was both seizing and vomiting at the same time with the vent in his throat and I was screaming out the door for anyone to come help. After his MRI, an EEG was performed and he did not seize during the test at all (probably because he had been given an IV push of an anti-seizure med) until she took the leads off his head and he started seizing again. He spiked a fever from 97.9 at arrival in the ER to 102.6 and rising. An X-ray had determined when he arrived that George had some pneumonia. But after the temperature spike we had to take sepsis droplet precautions (i.e. masks) and as I had been touching him and talking in his ear and singing to him, I wasn't allowed to get too close anymore. The sepsis concern was scary as George already has a weakened immune system from the immuno-suppressant IV infusion he gets every eight weeks for his Crohn's disease.  
Sepsis precautions in ER.

George's parents who live 8 hours away were en route by vehicle. My dad, had been on a flight to a business conference on the other side of the country (eerily like my brother's situation) when he heard about George, he turned right around and flew directly to Chicago and my mom flew in as well.
ER RN, transporter & Respiratory Therapist
transporting George to ICU.

I had been told from almost the moment I was escorted into the ER that morning that George would be going to the Intensive Care Unit (ICU) but it took all day because they had to complete testing and get the results before he was transferred. He was brought to the ICU twelve hours after he arrived. Shortly after, his parents arrived as did another wonderful friend who had made me a Kelly-friendly supper for which I was so thankful! Finally, after an hour and a half of waiting in the ICU waiting room, we were allowed into the ICU to see George.

The hardest decision I ever made was to come home to sleep that first night. George's blood pressure and heart rate were bottoming out and he had to be given norepinephrine. I did not want to leave him, but I knew my body was going to give out if I did not go home and sleep in my own bed. I had a special number I could call to find out how he was doing and the nurse had my number to let me know of changes. I got calls from ICU nurses a few times that first night. And because only one person could stay the night with him, my choice to come home allowing his mother to be with her son.
ICU on Monday. A green bite block is in his mouth because he almost bit through the vent tube. He also had a 103 fever here.
Gray wrist restraints kept George safe.
Monday, George's parents, my parents and myself stood, sat, rotated chairs, held George's hands talked to him and occasionally to each other as we watched as George's rigid body fought hour after hour. Thank goodness for the restraints on his hands. George is so strong and his body was physically fighting so hard. He was spiking a fever again that got to 103.  He was still unconscious and unresponsive to any commands though he would jerk to loud noises and would grimace when they suctioned him. He was also beginning to breathe over the vent, though it was still erratic and unstable. These were huge improvements from the day before. Though in the photo above, George looks calm, he looked that way probably 5-10% of the time. His body was fighting and flexing the rest of the time. It was almost as if he was trying to get out of bed. The nurses had to reposition him countless times. All Monday, he was still in a coma.  Coma: the word I had only ever connected to my brother. The first time someone spoke it in the ER in reference to George was when the denial faded away and I knew it was bad.

***
My dad took the night shift with my brother and my mother took the day shift. My brother had been in a coma for a few days and after one particularly dreadful night, my dad called my mom to prepare her. He told her that my brother had had his worst night ever with severe, continuous seizures that were not being controlled by medications. So, my mom who at the time was only two years older than I am right now, put on mascara so she wouldn't cry. She hoped for the best though inside prepared for the worst. In my mom's own words from a talk she gave a several years ago,
I reached down for God given courage as I walked into the intensive care unit. I tentatively approached his bed, really expecting the worst. As I came closer, (my son) turned his head around with open eyes and said, "Hi Mom!!" I am unable to express the depth of joy that I felt! It was a miracle, nothing less. Not only was he awake, but he knew by name, "Mom."
I remember something feeling very tight in the pit of my stomach from the moment my brother was taken away in the ambulance and I am not sure when it went away.  I have been a sensitive (meaning intuitive/observant/emotionally in-touch) person my whole life and I think back to my ten year old self and wonder how she processed everything as it was happening. I remember standing in our kitchen and talking to my brother on the phone one time when he was still in the hospital. I had been told he had asked, "Is Kelly in the game room?" The game room was an upstairs room where we played together, watched television together, danced to music together and built forts together.  I remember the flood of love from the community: the long roll of butcher paper signed by his whole elementary school: teachers and students; the stuffed toy gorilla holding a banana and a "Get Well" balloon tied to it. I remember building Lego buildings with my brother and not understanding when he acted out. I remember going upstairs when the home-health nurses came to give him IV infusions. To this day, my brother hates needles and I don't blame him with all the poking and prodding he had as young boy. I remember the tutor that came to our house to work with him because he had missed so much of the second grade. I remember feeling inside that things had changed.

It was not until later that my parents (who were not church-going people) discovered how many people had been praying for our family and specifically my brother: my dad's boss's wife and her prayer partner, my brother's school principal, his teacher, people who had my brother's name on their prayer lists of their churches, neighbors, family, old friends of my mom who had gone to a Christian group called "Young Life" together as teenagers, and people my parents did not even know. People were praying for my brother all over the United States.

My brother is now 30 years old, is married to the sweetest woman, and is doing a  job he dreamed of doing ever since he was young. He has not had seizures since his episode/coma when he was seven and the cause remains a mystery. But, what my family witnessed was a miracle and it changed all our lives forever. My brother is here for a reason.

***
From the end of the earth I will cry to You, when my heart is overwhelmed; Lead me to the rock that is higher than I. -Psalm 61:2
Each time I walked through the locked doors into the ICU, I would take a big breath, ask God for strength and try leave all of the emotional weariness, crying spells and any sign of being overwhelmed at the door and brought my advocate stoic self. I questioned everything anyone did to George and asked for an explanation for everything. On one occasion, the neurologist told me he had switched George's IV anti-seizure medication and when I asked which one it was, the neurologist acted surprised and questioned me as to why I wanted to know! I guess other people do not ask, but my husband could not advocate for himself, so I sure as heck was gonna know everything they did to and put into his body.

The first hope we had was on Monday after they had changed some of George's medications that had been keeping the seizures at bay, but also had been sedating. On Sunday, even without the medications he was completely unresponsive. So when, the ICU nurse told me that with this medication change, he might rouse a little, I did not let myself hope. I did not want to jump on that roller coaster. A few hours later, a woman came from my church and the six of us (both sets of parents, myself and the lady) prayed over George all touching a part of his body; she anointed George with oil on his forehead (something done in the New Testament for those who are sick), and we sang "Amazing Grace" in our joyful noise chorus with tears.

Almost as soon as the woman from our church left the room, we noticed George's eyes flickering: not in a seizure way, but not necessarily like he was waking up. However, this change filled us with such positive excitement. The nurse came in with an assistant to reposition George in bed, something that had to be done numerous times because of how much his body had been struggling and moving around. We knew the drill and all stood back to let them do their job. George's mom was behind me with her arms wrapped around my shoulders. The ICU nurse noticed the eye flickering and we watched George respond meaningfully for the first time since he had been in the coma. He responded to three individual simple commands ("squeeze my hand," "wiggle your toes," "open your eyes"). My mom said she could not see it because the nurse blocked her view but she could see the reaction of myself and of his mom and has said that it is something she will never forget. I didn't expect George to respond, and when he squeezed the nurse's hand on command, when he wiggled his toes and he tried to open his eyes, which was very little, but an attempt, I sobbed with joy and held tightly to George's mom's arms as we rocked back and forth. Though the rest of the day, he was not responsive, George did this once more that night including turning his head to the sound of my voice. Despite having the nephrologist express concern that George had lost 55% of his kidney function since he had arrived, we were so happy.

Being trained as a Speech Language Pathologist, going through internships and actually having patients pass away suddenly and unexpectedly, I know that in these situations it can be one step forward, two steps back. So, though I was full of joy (and exhaustion), I was very tentative when I left the ICU for home that night. I did not sleep at night--I was alone in the house for a few nights--and it was probably good because I've never screamed out to Jesus louder or cried harder. Zoe, our black and tan Cavalier, pushed her body into mine trying desperately to comfort me.
My soul is crushed with grief to the point of death. stay here and keep watch with me. -Matthew 26:38
Each morning I was terrified to call the ICU nurse--fearing worse news. That Tuesday morning I did not go to the ICU at the crack of dawn because my body was wearing out on me--I was having difficulty walking-fibromyalgia, was weak from no sleep and keeping vigil over George and I was in a lot of head pain--chronic illness really stinks in these situations. I had told my parents I would call them when I was ready for them to pick me up; they'd planned on arriving early at the hospital with George's parents who had been staying the night with George. I was so weary and terrified of hearing bad news alone that I did not have it in me to do a phone check in with the ICU nurse that morning. So at about nine in the morning, I called my mom and it went to voicemail; I called George's dad and it went to voicemail. With no one answering their phones which was an odd occurrence, my fear took over:  George had probably died and in my brain I figured my parents were not picking up the phone because they didn't want me to be on my own when I found out the news.

By the time I called my dad, I was panicking. He picked up and my heart stopped as I asked about George. My dad said, "Kelly, he is awake! And he is using sign language." And Dad wasn't able to get out any more because my sobs of relief and joy were too great and I told him to come right away to pick me up. I have used sign language with George during my Migraines because noise of talking would be too painful and though George consistently had trouble remembering all of the alphabet letters and other hand signs I'd teach him, he still would try. It was the same feeling my mom had when my brother called her "Mom", I knew in that moment, my George was coming back.

George had the ventilator down his throat still, so he couldn't talk and he was too uncoordinated to write so he was signing using the sign language alphabet. But, no one knew sign language (as I was still at home), so my dad pulled up a chart from the internet on his iPad and figured out George was spelling "c-o-l-d". As George had such difficulty picking up and remembering the sign language alphabet,  I had just had him practice signing it himself the week before. Knowing he was using a method of communication so difficult for him warmed every part of my being. I got down flat on the floor and thanked God that George was awake. 

On the ride to the hospital, I kept asking my parents, "He really has his eyes open?" "He was really signing?" Given his condition, I had been trying prepare myself for his possible death or severe mental impairment as we had almost lost him and his condition was so critical.  In the time it took my parents to retrieve me to the hospital, they had determined through tests that it was safe to remove and had removed George's ventilator and though he was still fragile with low oxygen saturation levels, he was breathing on his own. It was the first time I walked into the ICU with excitement to tell George had have him hear the words I had been terrified I would never have a chance to say again, "I love you."

He was sleeping and the room was dark as to keep him calm and quiet as he was still fragile. And the moment he saw me, his mom said his whole being lit up. I gave him a huge smile. His voice was quite hoarse from the vent and so not many people could understand him. But I could and the first thing he said to me was "I have to pee!" Hehe! He was still a bit out of it from the medications and didn't understand certain things (like he did not need to get up to urinate). But right away he was trying to hug me, he signed "I love you" and he started saying "I love you" and he was hoarsely trying to sing "our song" which melted my heart. He knew me. He loved me. That was all that mattered.

At one point, he called me "mein Liebschen" which means "my sweetheart" in German and something he says to me multiple times a day. I could not believe my ears. I did not expect him to make such a miraculous turn around. To go from squeezing a hand, to putting sentences together! He even told myself and his ICU nurse that: "I know my surroundings." I have to laugh at how funny it sounds now, but his brain was trying desperately to let us know he was okay.

George was still pretty out of it, being medicated and still recovering, so we were trying to let him rest, but he noticed my dad across the room for the first time and hoarsly said, "Ron!" And with tears running down my face, I took this photo as my dad briefly talked with George. Later George also called my mom "Donna" without prompting. He also called his parents "Mom" and "Dad" and later when asked by a medical professional who I was, he answered "my beautiful wife, Kelly."
I will praise you, Lord, with all my heart. I will tell all the miracles you have done. -Psalm 9:1
 
George held my left hand and looked at my rings. We chose our engagement ring that has three stones as it has meaning to us: center stone larger representing God/Jesus and the stones on each side representing us. The ring visually symbolizes that God is holding us together. As he looked at my ring, George said "You, me and Jesus" which is what we always say. 'You, me and Jesus' is how we approach every challenge we are given and a comfort to know that we are not alone. I was constantly amazed by everything George was saying and the SLP part of me couldn't help but evaluate his cognitive skills as "swell" considering. He was having memory problems related to the medications, but by golly, I knew he was going to regain function! 

If you look at the above photo closely, you can see George has the nurse "call" button in his hand which also controls the television. He was randomly changing channels and not really watching it. When it was my turn to rotate out of the room as the ICU team deemed him too fragile (blood pressure and heart rate dangerously high) to have more than one of us in there at a time, I looked up at the muted television which I had had my back to.  I said, "George, you are watching, "Say Yes to The Dress" (a bridal show). Do you want to watch this?" Even though he was still not completely with it, his wit came through and he said,  "I say no to the dress!" And I laughed, for the first time in what felt like eons. The next day, as a dutiful Star Wars geek wife, I brought in the original Star Wars Trilogy (IV-VI), which I knew he would enjoy MUCH better.

I happened to be out of the room for the bedside swallow test (a test to check if the patient is safe to eat/drink without it going down the breathing pipe and into the lungs.) This test (something I used to do) was performed by the hospital's Speech Language Pathologist (who later offered to get me a job if I ever wanted/needed one). I happened to be out of the room for the initial swallow test and when I came in, George's dad got very emotional and with tears of joy said, "George can have chocolate ice cream!"

Every step was beautiful. George was quite compromised still and uncoordinated. I fed him his first meal, with my SLP self coming through: encouraging small sips, small bites, and having him vocalizing every now and then so I could hear that the food/liquid wasn't going down the wrong pipe. It made me smile to see him to work quite hard to reach over every other container to get to the chocolate pudding.

George made good progress and was discharged after ten days. Every day brought something new and everyday was a miracle. He is now back at work (his new job that he had only worked at for two days before this happened). I knew how many people had been praying for George, his family, myself and my parents. Facebook allowed for word to get out quickly and for prayer and support to come in from all corners of the U.S. but also from a friend and her family and family's church in New Zealand. I am/was simply overwhelmed at the number of people showing an outpouring of love for my husband and myself. Our veterinarian somehow found out through Facebook because I 'Like' the Animal Care Clinic's FB page and she personally called me expressing her concern. My brain was scrambled eggs on day one hour one, and each minute that passed, my brain worked slower and became more overwhelmed. It is so hard to relay such an experience to anyone who has not lived through it and hoping that people would extend grace. I told a friend I was forgetting to eat/drink because I was constantly nauseous and she immediately set up a group of people (three of which I did not know!) to text me daily 9a-9p (every two hours) to remind me to eat and drink. I could barely put thoughts together and was so thankful that one friend was able to take my broken communication and share it with the Facebook world by tagging me so that all my friends could get the update on George.  Later I was told that friends would pray together over the phone and over FaceTime for George. George was on church lists and email update lists. A couple of dear friends of my mother's devotedly frequented their church to pray and lit candles for George, myself and both sets of parents. My mom showed me the above photo texted to her by her friends when we were in George's ICU room, and I was overcome. Thank you.

It is a miracle. I will always remember and be thankful for God's divine intervention into George's life.

One of my favorite books, Hearing Jesus Speak into Your Sorrow by Nancy Guthrie addresses how difficult it was for her as no matter how many prayers were said, two of her children died a couple years apart of a genetic disease. In hearing of stories like my brother and my husband, she said it would be painful to hear because, her children had not been healed and had died. As she pointed out, though Jesus performed miracles in Bible healing people of their ailments, he did not heal everyone of everything. And probably all of us have experienced that in our own lives.

Heck, I have not been healed of my chronic illnesses no matter how much I have begged God for mercy, I have not found relief in times of profound agony. This year, has been one hell of a year for George and me: we struggled through months of trying to discover what was ailing my body--why I couldn't walk, why I had hypersomnia, weakness/tingling in one side of my body--including two weeks at Mayo Clinic that were a frustrating time; I lost my beloved constant companion, Mr. Knightley suddenly to a complication of a disease where he died in the worst way I could have imagined and I still grieve the loss of his presence deeply; George unexpectedly got laid off of his job of 18 1/2 years; I had a miscarriage of a planned pregnancy. And George was in a coma and healing is still taking place.
God, save me, because the water has risen to my neck. I'm sinking down into the mud, and there is nothing to stand on. I am in deep water, and the flood covers me. I am tired from calling for help; my throat is sore. My eyes are tired from waiting for God to help me. -Psalm 69:1-3
God is not a vending machine, where we put requests in, push a button and get what we want out.  But, I won't discount that God was hearing so many voices crying in unison for my brother and twenty two years later, my husband in a similar situation. I truly believe that as 1 Corinthians 3:9 says, we are "co-laborers" with God and the author Richard Foster (of Prayer and The Celebration of Discipline) has helped me to see that is quite true in the area of prayer.

Let me quote what Nancy Guthrie geniously wrote, so that no one will misinterpret my meaning of how I view faith/prayer.
Some claim that strong faith is defined by throwing our energies into begging God for a miracle that will take away our suffering and then believing without doubting that he will do it. But faith is not measured by our ability to manipulate God to get what we want; it is measured by our willingness to submit to what he wants. 1.
God is sovereign and I can never expect to understand his ways. But, I do trust in my relationship with Him as it is a solid foundation that I can stand on, fall down on, grip tightly to, and count on to hold me up when the whole world around me has collapsed and turned upside down. It has been a journey to this place with God, a journey we all have the opportunity to walk. I find security in the Love God has for me and the freedom in the Grace He extends. I wish that all who read this would find that security and freedom.
These things I have spoken to you, so that in Me you may have peace. In the world you will have tribulation, but take courage; I have overcome the world. -John 16:33
 1. Guthrie, Nancy, Hearing Jesus Speak into Your Sorrow (Carol Stream, IL: Tyndale, 2009), 19.