Pain

Pain is "an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."[1]

Pain is subjective, but it is also the fifth vital sign, something that is hammered into us in Nursing school.

Pain, if managed with a comprehensive treatment plan can often be alleviated. But when it can't, we learn to live with it.

Pain from my feet, from plantar facitis, pain in my other foot from goodness knows what, back pain from lifting Arianna, head pain from reading too long without my glasses, emotional pain from heartbreak, loss, and disappointment. Pain from child birth, pain from running my first 13.1 miles, pain because I couldn't finish my last 13.1 miles.

Pain because I can't explain to my four year old why her sister doesn't talk, pain because I can't understand what her sister wants or where she hurts. Pain because I don't know how to help Arianna's pain that she can't express.

Pain is subjective.

Pain is often hard to manage in Cancer patients. My pain is subjective, and pales in comparison to what my grandfather may have to endure as he battles his Cancer. Pales in comparison to the "unpleasant sensation" that occurs when a child goes into status epilepticus.

My pain can wait... cures for Angelman Syndrome, Alzheimer's, Dementia, and Cancer CAN NOT. On September 18 I run to raise money for AS research. Research that is currently in process and being presented at the biennial AS Conference in Salt Lake City Utah. We are on the brink of finding something so amazing that we can't wait for the money, we need it NOW. It is not only going to help AS but so many other cognitive conditions.

With the recent diagnosis of my grandfather's cancer, I run with a heavier heart. Too many in my family have been taken from us by this great Pain.

However I also run with a spirit that is unlike any other. I refuse to negate the positive life that I have chosen to guide this adventure. I refuse to let the pain negate the love of life that our family has always had.

So with this post, I ask that you spread the word of my run, join me on a run, raise money for my run, and cheer me on when I run. I run in pain, not for pain. I'll run through pain, for pain is subjective. I will cross the finish line, even if I am the last one... my pain will cease with time, my injuries will heal.

Summer...Summer...Summer

Summer has officially started for me. Last week marked my last final and class of the semester. I completed my first 5k of the race season, the family participated in a very successful Angelman Syndrome Foundation walk a thon in Buffalo NY, and I am looking forward to the 8k race this weekend at GLASSFEST!

I would like to take a moment to thank everyone who came out to the walk in Buffalo last weekend. It was great to see you all and have your support as we raised money and awareness for Angelman Syndrome. I know Arianna enjoyed seeing everyone and meeting new friends. It is such a short time we get to spend with you all but we look forward to it so much! I think Ari's favorite part was the "pool" in the room. Rob booked an amazing hotel with a 4 person hot tub in the room (the girls had a blast).

Thank you to the Sell family who hosted us on Friday night for dinner and drinks. Such a fun and relaxing time to get to spend with one another.

Arianna is having a blast in her Challenger Little League. She is finally getting the concept of the game, but still thinks that the outfield is for snack time :)
She prefers dad to piggyback her around the bases (she is a Dutchess after all).

We are celebrating Amelia's birthday this weekend with cake for both girls this weekend(since Ari's birthday was snowed in last February). I can't believe how grown up they have become. It seems like overnight they have grown two inches each in the past month!

Race fundraising is going to kick into high gear soon. I will be sending out personal emails and letters to all our friends and family asking for support. We are hoping to raise $5000 for Angelman Syndrome Research. My philosophy is if everyone can contribute a little ($1-$5 and up)we can meet and exceed this goal. Please consider sharing our goal with your friends and family. Your donation could be the dollar that funds the cure and major therapeutic to help Arianna speak, be seizure free, and participate in school the way she so desperately wants to.

You can donate at the link here on the blog or cut and paste:

If you want to come out to Glassfest this weekend... the 8k is Saturday morning beginning at the War Memorial Stadium in Corning at 8:30am (I will probably finish at 9:30 at the stadium--- I run, but not fast :)

Thank you to those who have contributed so far:

Eileen M Wayne
Lisa Webber
Candelyn Tong
Jenn Basler
Nana Nance
Beres Family
Ilyse Seven
Leslie Morris
Harli Kirkpatrick
Angelrunners.com
Jeannie Stith
Sue Cook
Stacie Vetterli

What time is it? Summer Time

I am officially 1/2 way through the Registered Nurse program. It is no joke the sacrifice you make to survive Nursing school. It has put a strain on everything in my life. What has made the difference is the strength that existed prior to the introduction of this strain. Without this foundation, I am certain I would have failed (either as a student, or as a mother and wife, or both). I have sacrificed time with friends, family, and important events. I have missed birthdays, showers, and other celebrations. But knowing that at the crossroads of this journey, the sacrifice will be justified, I can enjoy the pictures and the stories of the time I missed and cherish the moments I do get to have in person.

I look forward to spending time with my family celebrating the simple art of hanging out and playing! Late night snuggles, early morning coffee, letting the girls skip school to watch the marching band practice are some of the things I look forward to doing this summer. I will also read one non medical book!

Marathon scheduled training begins tomorrow. 16 weeks. I have raised about $500 so far for the Foundation for Angelman Syndrome Therapeutics Aside from Nursing School this is probably the most difficult thing I will accomplish in my lifetime. It is 90% mental and 100% worth it. Worth it to know that Arianna will one day speak, be seizure free, and have the independence she desires.

Ten years ago when I graduated from UC Irvine with a Master's degree in Fine Arts, I would have never guessed I'd be where I am today. I would have never imagined that I would have the strength, determination, and stamina to complete all of this. But what I have come to learn about myself is that "until I try I'll never know". So as I encourage people to look at Arianna with the least dangerous assumption, I have learned to look at my life this way. Is it dangerous to assume I am able do/try something, or is it a bigger detriment to think I can't?

I would not change any of my experiences in life. They have all made me the person I have become, a person I am happy with. I do not regret my mistakes. I celebrate my triumphs and learn from my failures (some of the most amazing discoveries have been made by a failed experiment).

So I challenge you to join me in my adventure, inspired by my girls. Go on a run with me, donate to the cause, send me some encouragement, or start your own adventure. Just don't passively sit by and watch it all happen. It's so much better to be a part of it all. I dare you, take the leap and be great!

Happy Summer!

The END of the semester is near

One week from today my semester will be over. Tomorrow morning I will face the odds and have my clinical performance exam. Everything must be perfect or that's it, I'm done. I will not be able to return in the fall. It doesn't matter my grades, my scholarship, nope. It all falls on tomorrow's moment.

What I have learned in the two years I have spent married to my science with my whole soul devoured by text books and lectures is. I am prepared for this, I know this. Whatever happens in the moment is my control, but the outcome is out of my hands. Much like anything in my life. I can only control so much and the rest just happens. Of course I am stressed out and worried. That is in my nature and can not just be turned off at will. But throughout the course of this academic year I have had some great friends supporting me, helping me to ease the type A inside.

Marathon Training officially begins one week from tomorrow! Of course I've been to the gym and done some cross training up until now, but next Thursday begins NO EXCUSES. 16 weeks till the marathon. 16 weeks until 26.2 16 weeks until $5000 is due.

This weekend I will run my first race of the season. Susan G Komen 5k race for the cure. The following weekend is our National Angelman Syndrome Foundation Walk. Both of these causes have devastated my life. They have contributed to who I am but will not decide who I become. That is my choice.

Almost 20 years ago my mom was diagnosed with breast cancer. She was slightly older than I am now. She is the first female survivor of this disease in her family. She is my hero. Raising two children, going to school full time, working, surgery, round after round of chemo and radiation... I never question how I have time to do it all. I learned from the best. We do because we have to and will not take "can't" for an answer. I am running on a team for school to support an instructor recently diagnosed, but I also run in celebration of someone who exemplifies hope and determination through this battle... My Mom!

Next weekend I walk in honor of another amazing girl in my life. Arianna, my oldest daughter. She was diagnosed with Angelman Syndrome 5 years ago. Each year since then we have participated in this national walk to raise awareness and funds for Angelman Syndrome, meet other families that are going through the same adventure as we are, and celebrate the lives of our exceptional children. If you know Arianna, you already know she is extremely happy, energetic, loves water, and is very opinionated. She also struggles with being non verbal, sleep disorders, seizures, and intellectual disability. She chooses to push through her obstacles in order to find her favorite things in the day and explore them. She leads her adventure by example and challenges us all to be better people.

I am in the middle of two generations of women who are fighters. That is how I "do it all". I don't do it alone, and I will not give up because it is hard.

This is not to say I don't have bad days, because I do. But I refuse to get stuck there. I am thankful to be blessed with each day, whatever it may bring.

Spring Breaks

As Arianna's spring break comes to an end, mine is just beginning. These past 10 days have been anything but a break for her. Sleeping 3-4 hours a night has been grueling on her little body and even more so on the rest of us. Fortunately for her she is still a happy and ever so excited about life as a seven year old. Unfortunately the lack of sleep is creating some mania in her actions and bouts of myoclonics at night. So we have pushed through, still going to the pool, playing outside, and initiating the creamery visits of the season (Hokey Pokeys AND Peaches and Cream). Of course this is the week I am starting to up my training, so I guess I can justify the ice cream (ha ha).

We are hoping that we will get some answers at the neurologist next week. In the meantime it is back to school for her tomorrow, and I am going to enjoy the 76 degree weather, working outside, going for a long run, and then we all will be celebrating Averie's first birthday!

A year ago I was tapering down for my first half marathon in Nashville. I am no where near 13 miles this year, but the strains from non-running life have been much more difficult. Running on 3 hours of sleep is not recommended, nor is it safe.

The next month will make or break the Nursing program for many of us. Regardless of our test grades, we will be reviewed in the clinical situation. This is a one shot deal, if we aren't up to par with what our instructor is looking for, we are out. Doesn't matter our GPA. A lot of pressure to say the least.

So as usual, this break is scattered with study sessions, trips to the lab, as well as some visits to friends and doctors, most of all running, some rest and sun exposure!

5 Years Later

I woke up this morning like it was any other day. Having my coffee, making out the grocery list, watching Amelia and Arianna play. I hear the date on the television, suddenly I remembered. As if I could really forget, that moment when I was all alone in my cell of an office listening to the doctor on the other line "Mrs. Manning, you had a feeling this was going to be the outcome, Arianna does have Angelman Syndrome." She was right, she fit the phenotype: the smile, the delay, the smile...

I thanked the doctor for calling me right away and hung up the phone. I never felt so alone in my entire life. I sat behind the door of my office crouched on the floor and sobbed. Taking a selfish moment for myself to grieve the loss of my child. All my dreams for her were lost in that moment.

I drove the hour home, alone, paying little attention to the road through my tears. Somehow I made it back to Arianna's daycare. I opened the door to her room to see her crawl up to me, I picked her up as she smiled with delight as if to say "mommy, it's still me, I'm the same little girl that you dropped off this morning..."

I had to learn this lesson as a parent at some point. Most parents don't learn it until their children are full grown. Our dreams for our children are just that, OUR DREAMS. They will have dreams of their own that we can not create for them. We can only support them and help them make the best choices THEY can.

The diagnosis of Angelman Syndrome will last her entire life. The doctors reminded us that she may not walk or talk, will have seizures, and will be profoundly retarded. I HATE that word. The word retarded carries the worst connotations with it, regardless of the etiology. The doctors couldn't tell us much else (or at least not anything I didn't already know from my own research). What they didn't discuss with us was the severe sleep disorder.

Over the next five years, Arianna progressed thanks to the efforts of her family, friends, therapists, and teachers. She fought like hell to make her body do the things she wanted it to, along with fighting with us about how to do it. She learned to walk. She is now learning to run, jump, and ride a bike.

Just this week she waved to me for the first time as she sat on the bus, and we received reports from school that she has said Mom several times.

These little blessings are major accomplishments for her, things other parents and children take for granted. I cherish them. I cherish her perfect sense of complete joy and love. I am thankful for the lessons she teaches me about patience and forgiveness. She has shown me that I can be stronger, work harder, and love deeper than I ever thought possible.

Arianna can heal the deepest wounds with her smile and laugh.

It breaks my heart to see her struggle to tell me what she is trying to say. She has so many thoughts running through her brain that can't get out and the frustration that builds inside her could fuel a jet airliner. She doesn't give up, she keeps trying until she finds a way to get her point across.

My new dreams for Arianna have been formed by her. My dream is that she will struggle less with communicating, forge friendships that are meaningful, and create her own path without being forced into one because of an ignorant label. I dream that she will be seizure free and healthy.

In September I will run a full marathon in honor of Arianna. My goal is to raise $5000 for Angelman Syndrome Research, $1K for every year since her diagnosis. 26.2 miles is a great distance, especially while finishing Nursing school. It will be one of the greatest challenges of my life. It will be hard. It will never be as hard as it is to go through your life without being able to say where your pain is or why you can't get to sleep, or to say "I love you". It will never be as hard as experiencing the helplessness of seizures and respiratory distress. It will never be as hard as being called retard.

So I ask for your support as I add this path to our journey. Arianna grew through small accomplishments. We can reach this goal through small donations. $1 is enough. If you can contribute more, great. Words of encouragement or even being there in person on September 18, 2011 in Rochester NY would be very welcome!

You can donate via the widget on this page or go to:
http://www.firstgiving.com/fundraiser/stephanie-manning/ariannasawesomeadventure

Seasonal Affective Disorder

Seasonal affective disorder (SAD) refers to episodes of depression that occur every year during fall or winter. Symptoms improve in spring and summer.

Or it could also be described for the season all too well known to parents of exceptional children as IEP season. It affects us all differently, but for the most part it drives us insane. It could last a day, a week, or months. It is the agony of trying to put together a scientifically proven/evidence based plan of attack for your child in the hopes that they may achieve some level of success in academics. You hope and pray that somewhere along the process you have gotten something right and then have the support to put the plan in place. Only to find out six months later you were completely wrong and there is not much you can do about it. You read the "alternate" report card with its obligational "positive" comments and then the "needs improvement" and "no successful progress" list is a mile long.

This is a season of frustrations, battle, discouragement, and sheer exhaustion.

But this all loses sight of why the Individualized Education Plan was created. To create an INDIVIDUAL plan that will help the child meet and exceed a set of goals for the school year. It allows a creative group of well intentioned adults to come together and collaborate on behalf of a child that so desperately wants to succeed.

It doesn't need to be a fight with the parents flanked by the "professionals" and devoured by the rhetoric of standardized test scores, life skills, and behavior plans.

Each year at this time I make myself ill with stress. February is the month Arianna was born, so it should be a fun month. Instead it is usually full of meetings, doctor's appointments, illness, paperwork renewal, and basically un-fun things. We are scheduled to the max, and to top it all off everyone has met their threshold for the winter.

So as I was feeling sorry for myself this afternoon when I listed item after item that went "not right" and all the things I "had to do". I stopped, made a list of everything that "WENT RIGHT" and the things I "WANTED TO DO". I enlisted the help of a dear friend to help me tackle the biggest task, and then treated myself to a run.

As each step met the snow covered pavement, I thought about choice, whether or not to choose the easier road (or treadmill) that can be automatically controlled by a single program, or the the cross country distance path that throws you a surprise around every bend. Sometimes I long for that treadmill: the pace it sets, it's predictability,and the control. But the reality is that the life that has chosen me is a cross country path full of amazing scenery, ice covered sidewalks, killer hills, grassy meadows, and distance as far as the eye can see.

So until mother nature decides to offer up some vitamin D to help us all out of our S.A.D. I will make my own sunshine with the help of my family and friends. And make my three least favorite letters in the alphabet I E P into P I E.

Groundhogs Day 2010 AKA Arianna' Turns 7

Seven years ago, at this moment, I was yelling at my husband to get off the phone with my in laws and help me push. He had taken a brief moment to call them to say that their first grandchild was about to be born. As my mother held my hand (no actually I was squeezing hers), the last moment of being a non parent slipped from my head and the the joyous fear of parenthood flashed across my hallucinations (a side effect of the contractions combined with the pain medication and epidural). At 11:01pm, Arianna Elizabeth Manning, our ivory skinned, bleach blonde, blue eyed chubby bundle of joy entered our life. She had the healthiest screech of any child in the nursery. I could hear her cry out all the way from the nursery as the Nursing staff brought her down to my room. From the beginning AriBeth was quite opinionated.

To this day her opinions are her biggest triumph and her biggest struggle. She has the knockout of prize fighter, and the smile of an angel. She can melt your heart with a 3am giggle, and break it with a 5pm tear. All she asks of the world is to be her friend and to listen. In a way, I think that is what we all ask of the world. What she gives to the world is so much more.

So here on her 7th birthday, she gives the gift of laughter, smiles, and unconditional love. We are so proud of her and the way she makes us see the world and life. She has taught us to love deeper, be a little more patient, and listen to a different language.

The future is unknown, and we live by the least dangerous assumption, if we assume we can't it is so much more dangerous, than if we assume we can.

Happy birthday to our precious angel. Go out there and change the world. We love you Arianna!
xoxoxoxo Mom, Dad and Amelia

Nursing II, week i

As I close in on the end of my first week of classes this semester and approach my first quiz of Nursing II, I have surrounded myself with many memos of encouragement. Pictures of my girls, by my girls, words from friends, poets, world leaders... all posted anywhere I can see them while I reach for my goals.

As Arianna goes through her day, I think about how I can send her the same encouragement to positively reinforce her progress. She wants to succeed, she wants to communicate... the less she is able to do that, the more frustrated she gets. I am seeing this more and more with her this year at school. As a first grader, a seven year old girl, she is gaining more independence and more advance receptive language. Unable to translate her thoughts into an expressive communication keeps her trapped. She can only comply for so long before that frustration manifests itself in what looks like a glorious temper tantrum. My heart breaks for her, and somewhat selfishly for myself.

Something a slight as choosing what to play with or what to watch on television creates a game of 20 questions that leaves both of us equally drained. I see her eyes wanting to express so much more, it radiates throughout her body as she bounces to her favorite music or video.

I watch my youngest, Amelia, developing faster and faster everyday. I see her look up to her big sister and support her. I can only hope I am doing something right in raising her. Sometimes I feel like we allow her to grow up a little too fast in order to be sure Arianna's needs are being met. It's a delicate balance, a waltz of sorts. Sometimes I lead, other times she does.

Both lil ladies continue to amaze and challenge me. They inspire me and keep me grounded. If I can do half of what my mom did for me I know they are in good hands.

Here's to studying for the game of life, the practice of nursing, and the training of the marathon.

The Adventure Continues

Arianna started her blog on Friendster before the invasion of Facebook. We have since stopped her blog (which is still archived there and can be seen via her website www.ariannasawesomeadventure.org)

Today's is from Stephanie, Arianna's mom:

2011 brings a lot of new challenges to our home. It is my first full year of core Nursing school, for which I am hoping to sit for the RN boards in June of 2012 and then continue to get my Doctorate of Nurse Practitioning in pediatrics. I am also going to run my first full marathon.

Both of these major goals in my life are fueled by Arianna. For those that have just joined our adventure, she was diagnosed almost five years ago with a rare genetic disorder called Angelman Syndrome. As a family we have to live with Arianna's diagnosis everyday. There is not a moment of our lives that is not affected by this disorder. It requires us to live a very different life than what we ever expected. There is the fear of seizures around every corner, many sleepless nights when Arianna just can not organize her little body to get to sleep. But I think the thing that hits home the hardest, at least right now, is that she is unable to speak and has a profound delay in her academics and development.

Arianna is the happiest little girl you will ever meet (maybe besides another little girl with Angelman Syndrome). She honestly can cure any bad mood with her smile and unconditional love. She has worked so hard to accomplish simple tasks like holding a spoon, drinking from a straw, walking, and putting an item in a box.

Some have asked me about her brain, does it just not work right? Well the best analogy I can give is one I'll borrow from a friend. Its like a car that has all the a parts but somehow the spark plugs are wired to the radiator and the radiator is hooked up to the fuel line. Arianna and others with Angelman Syndrome have everything in their brain to make it work, it is just that the lines are not connected right.

It is our hope that through research we WILL find a way to hotwire this car. Angelman Syndrome has been CURED in the mouse model. Granted mice are a lot different than humans, but with enough money this research CAN translate into AT THE VERY LEAST a therapeutic for our kids.

I decided to start running two years ago, as a challenge to myself. Every day for three years I asked Arianna to push herself beyond her limits. I pushed her to make herself condition her neurons to fire the synapses needed to jump those wires and help her crawl, stand, point, clap, and babble. Tireless hours of therapy, tears, and willpower. It was my turn to show her that Mommy could do this too. I was going to take on running, something I hated with a passion. 400 meters and I was beat, but I pushed on. Within 10 weeks I ran my first 5k. One year later I ran my first half marathon. Arianna's smile was at every step. When I crossed the line after my first 5k she was there, and my heart swelled with joy.

On Dec 4, 2010 I promised a close group of friends that I'd put my new found runner's high into full gear. I committed to finding a marathon to run. This time I was also putting a pricetag on it. 5 years since Arianna's diagnosis, $5000 to raise for Angelman Syndrome research. A small small price, financially and physically, to pay to make a difference in the life of my daughter.

Someday, I hope to be able to cross that finish line with her calling "Mommy". I would give every step I have ever taken to hear her say that one small word.

So I am blogging for now about my progress running, thoughts of Nursing school, life as a mom, wife, and advocate.