Be Quiet Please I have Something to Say

Do you ever feel  that you are the only person who thinks the way you do?

I often find myself silently pondering this very idea. Not too long ago when I was dwelling on this idea the Lord spoke to my heart and reminded me that I don’t think like those in the world…my mind is being renewed with the thoughts of Christ.

Hmmm, a familiar verse indeed and one that spoke truth to me at the time. Often when I find myself in the place that reveals my thoughts to be different from those in the world I do not speak up–I consider this the power of discernment–knowing when to speak and when not to is a valuable lesson, one that I was not always mindful of. The circumstances were different in a recent meeting however and I felt the prompting of the Lord to share a perspective that the group needed to hear.

The group consisted of a number of my colleagues, nurses, social workers and other closely related providers of the team. The topic being discussed was the boundaries of the professionals as it pertains to interacting with patients. The “issue” being explored was the  decision of one of the group to go to a patient home to inform him of an upcoming  chemotherapy appointment that he was not aware of.  The patient was known to have many barriers to care, including only having a pay as you go cell phone. I should mention here that one of the primary functions of my role as a nurse navigator is to identify and overcome barriers to care. Well my colleague decided that she would make an “unauthorized” home visit and tell this person of his upcoming appointment. Her decision was not embraced by the administration.(Point #1 of thinking differently than the rest of the world)

The discussion that ensued eventually came around to caregivers, i.e. “the group” attending personal events of a patient, like celebrations and funerals. There was quite a bit of dialogue around the table. Many of the group felt that attending these events blurred the lines of professionalism, who were they attending the event as, the nurse/social worker or as a friend? Still others believed that this simply oversteps an unstated boundary.(Point #2 of thinking differently than the rest of the world)

As I usually do I sat quietly absorbing this conversation and asked, do I speak up or keep silent? The answer I received was to speak up. And so I did.

I entered this profession to provide health care to human beings. This meant showing compassion and mercy towards those that need it. It however doesn’t stop there, at the door. I went on to share with the group that when I have been invited to attend a celebration of some sort by a person I have had the privilege of caring for, I received the invitation with honor. As caregivers we help people in what is often their darkest hour overcome fear and pain creating a unique and treasured bond. Why should I not attend a special event that represents so much to the person? And if the person has extended an invitation to me how would they feel if I didn’t attend? And on those all to often occasions when a person I have provided loving care for leaves this life and enters into eternity should I spare myself the burden of attending the funeral service and forsake the opportunity for closure for me and the family?

Thankfully I have discovered that when I separate myself from these experiences, I cannot possibly be all that I am created to be in that moment–living life authentically and fulfilled.

I have long since come to appreciate that if the Lord has you share something it is to be done if faith–act as the mailman and expect nothing in return. In practice this can be difficult though as affirmation is often a much needed component to our life of obedience. On this occasion the Lord sent a special someone to tell me how much my sharing was appreciated. Oh the JOY!

Meet Grace

Last year I attended several photography classes in which the instructor would give us an assignment and we would interpret using photographs. On the particular class we were to photograph someone into who’s soul we could see. What follows is the narrative that preceded the photograph’s I shared with the other participants. I must give full disclosure by telling you that there was not a dry eye in the house by the time I completed the story. I hope you enjoy.

February 2, 2012

In my role as breast nurse navigator I am in a unique position to meet and minister to many women and families who are in a trying and vulnerable season of life. I am often extremely impacted emotionally and spiritually by the struggles, fear and pain that I witness and must provide support through. I have felt a deep stirring over these past couple of months as I struggle with the injustice of this life altering disease.

It was during a time of prayer and fasting that I began to sense a bud of an idea. Cancer care is inclusive of what is known as complimentary medicine; the use of eastern medicine as well as the arts to restore the WHOLE person to health. We are after-all composed of mind, body and spirit. I believe that God wants me to act as an agent to aid in the healing process. This assignment gave be the motivation I needed to move to the next level.

Let me introduce Grace. We met my first week on the job; the first patient at my hospital to be navigated through breast cancer care. Early August she underwent the first surgical procedure to remove the cancer from her body. The day we took this photo she was receiving her last dose of chemotherapy medication…we are two-thirds of the way complete.

I asked Grace to answer a couple of questions if she was comfortable. What I will share with you next is her response which is being shared with her permission.

Me: I was wondering what your thoughts are about how cancer has changed YOU. I know how it has changed your life at least on the physical level but how has it changed you…your thoughts, the way you interact with the world, people, God. Is there something that you have learned during this time that you will never forget?

Grace:First of all I never thought about death. I was always on survival mode.  When I was just diagnosed I was sad for my kids; in my head I was ruining their life; they couldn’t lose their mother yet, they are momma’s boys and they are too young (14, 23 and 28). I would not allow myself to mess up their life. I needed to do everything without them; including them but without them being present; what if anything went wrong and they saw me suffering? No, no it couldn’t happen.

I decided to reach out to the women in my life; they would understand and sympathize with me in a different way.  I created two closed groups in Facebook, one named girlfriends and one named amigas for the ones that spoke Spanish. It was a hit! I was an inspiration for them and I was able to share very openly how I felt. They shared my fears, my inside battles and my little by little accomplishments. They made me feel so loved.

In the dark side some people I thought they were close friends disappeared from my life; people that I bent backwards for them so many times; may be they were scared, may be they were not who I thought they were.

Cancer taught me to be wiser in my choices.

Cancer brought me closer to God; showed me that miracles happen every day.

 I need to share this with you.  When I was 17 years old I fell in love with a boy and for some strange reason we got separated. He married, I married, and we never forgot each other.  Technology brought us together.  This year right after my surgery and 1 day before my birthday he found me in Facebook; it was some happiness in my life much needed and unexpected. He lives in Argentina (where I’m originally from) and he is very active in the Catholic Church; I told him about my cancer and somehow he convinced me that with prayer my cancer was gonna be gone; God was going to help me.

Here is the miracle- one day out of the blue he told me that I should go to church and find out when they have a special mass for the sick people.  I said ok I will go tomorrow to find out; that was in the morning something inside me made me go the same day to check; well my friend the mass that is held for the sick people and is only once a year was that same day; I couldn’t stop crying……..I knew at that point God wanted that for me………I went by myself and I cried my eyes out; I felt so blessed…….. The same guy from Argentina said to me ‘you know one day you’ll be able to share this miracle in front of people and I said yes I told my kids and I told Steve and he said no I went to church today and I got that message from God that you will be standing in front of people and you are going to be giving your testimony’. Now Paige I think your project make my miracle/message complete.

What did I learn during this time?

I learned to be more patient; I learned to give thanks every day for another day;  I learned that I was chosen to fight this cancer battle was because I was strong enough to make it through;  I learned there is people around me who love me unconditionally;  I learned to reach out in order to heal; I learned a life lesson. 

I never said ‘why me?’.  Instead I said thank God it’s me with cancer and no one of my dearest.  I can make it!  I will make it!

Thank you Paige for giving me an opportunity to share this with you!

Thank you for showing up in my life when I needed a hand and helped me walk though!

Love you Paige!!!!!!!

As with every other adventure I have been on when the Spirit is leading I have learned that the Divine Healer uses power to heal me while I am working to heal others…

Here is beautiful Grace on the last day of her chemo treatment. I met her to give her a Victory Rose which is pictured. Grace has passed the one year mark since her diagnosis of breast cancer. Even though her treatment is complete, the fear never really leaves.

Grace and her Victory Rose

Grace and her Victory Rose

A Winning Smile

The Cost of Care

I really like the new reader page over on WordPress.com main page…I have discovered many new blogs using the category search for topics I am interested in. My searching left me wondering something about my own writing though. Way back in my early writing I shared a post about my vocational call to nursing. I close that post stating that being a nurse is really the at the core of my authentic self. What I have been pondering is why I have written so few posts on healthcare and nursing. While I do not have an answer to my question, I have decided to write on this topic today.

Should Hope have a Price Tag?

Should Hope have a Price Tag?

As with so many books that get added to my reading shelf something in the books   description captured my eye. Most likely the fact that the author, a lifetime & well known journalist, penned a book on two topics near and dear to my heart too. Cancer and the cost of healthcare. The book is really a love story and the lives of Terence and Amanda would have remained unknown and unnamed had it not been for his terminal diagnosis of kidney cancer. They live an adventurous life. Her journalism career and his love of learning brings creates a grand backdrop for the novel.

It is always insightful for me, the oncology nurse, to climb inside the patient’s perspective. To hear how confusing our healthcare system is for people, hence the need for nurse navigators(the role I have been carving out since August 2011). But it is more than that. She writes about the huge swings in costs she discovered as she researched for the book after Terence’s death. In the seven years he was ill, they lived in four different states and had four different health insurance policies as a result of her job changes. Each insurance contract has a different negotiated rate for the SAME test. The hospital or other facility gets paid based on those negotiated rates. And if you happen to be one of the unfortunate American who are uninsured you will pay the entire cost–kind of like the sticker price on a new car–the better someone negotiates, the less money s/he can expect to pay.

Sadly, we in the US do not even know what all this care really costs. If you walk into the dry cleaners and want to have your shirt cleaned, at least in Connecticut where I reside, a sign must be posted disclosing the cost for such a service. In my husband’s automotive shop a huge sign hangs indicating the cost of  hourly labor. In addition service he is responsible for calling the customer and discussing a quote before proceeding with the suggested repairs. Yet I walked into the Ear, Nose and Throat doctors office for an exam. No sign hanging. I was however asked for my insurance card. A month and a half later I received a bill in the mail for $685.00; the amount I would be responsible for paying after my High Deductible insurance plan reduced the charges based on the “negotiated” rate. I have got to tell you I find this amount preposterous! I was sitting in the exam chair for about 15 minutes. There was no prior disclosure. Whoa…wait a minute…does anyone out there beside me think there is something wrong here?

We met a woman last week who offered to send us a health insurance quote for one of our young adult children who is presently uninsured. In her email with the quote she tells us that the preventative care is FREE! I respond back–that care is NOT FREE–it comes with a cost.

Thanks dear readers for listening to my rant. If you reside in the US I would urge you to give consideration to my writing. Our consumption of health coupled with our unhealthy lifestyle and our desire to live forever(well maybe not forever but we certainly have a hard time excepting death) is going to bankrupt our nation.

Be My Guest~ He’s “Spectrum-y” but He’s All Mine

autismawareness

It is hard to believe that the month of April is pushing into May already. Part of my plan for my blog this month is to raise my own and my readers awareness of the often misunderstood diagnosis of autism. Earlier this month a friend shared his family’s personal story. Today’s post is written by my cousin Beth. My invitation to her to share her story on my blog has caused her words to bubble out onto the page. I have learned quite a bit about the trials and joys both of these family’s have faced over the years by reading their hearts story. It is my prayer that you, my reader, have as well.

Yes, He’s “Spectrum-y” but He’s All Mine!

“Spectrum-y”….. it’s a word those of us affected by Autism have come to know oh-so-well. Loving someone who is on the “Autism Spectrum” has it’s challenges, but with each challenge comes a bounty of blessings. One learns not to take the little things in life for granted. All the typical milestones, we as parents count on, become less and less important when one of our children has Autism. Getting through a shopping trip without a tantrum becomes the best day ever. The first day you don’t get woken up by the security alarm going off because your child wants to go outside at 4 AM… it doesn’t get any better! How about the first time you can go out for dinner and not have to leave inside of twenty minutes because after that the screaming begins…all these become milestones of an Autistic parent. A mother learns that the “competitiveness” we feel with other Mother’s is so insignificant- we start to appreciate how much a laugh, smile, reaction, kiss or a hug means more than a winning Lotto ticket could ever mean. Only a parent who lives with Autism gets how important it is to have a moment of peace and a full night’s sleep without having someone erupt into a tantrum. The tantrums can be fleeting and usually tolerable, but when it happens in a grocery store and you have to leave a cart full of groceries just to get the tantrum to stop… it’s always exciting. It’s certainly never dull….

My son was born September 5,1998… I’ll never forget that day. Not just because he was born then, but because it was the same day Mark McGuire tied Babe Ruth’s homerun record. All anyone could hear all afternoon was screaming and yelling- and it wasn’t from laboring women, it was from their significant others cheering the ball game! Interesting to say the least. I thought then, Corey would have have such an exciting life, simply because of the day he was born. How those words somehow “haunt” me, but not really in a bad way. Simply because if I knew then what I know now, I would have shut the doors and turned on a movie- maybe I could have had a little “less” drama. More of a sit-com kind of life? Maybe “Seinfeld” or “Friends” or something to “lighten the mood”. But I went with the moment. Sports were great that year, and I don’t even like sports. But, if you have to watch sports, that’s how you watch them. oh, well. C’est la vie…Corey was always a pretty easy going baby-he went to bed great… no fuss, slept through the night at 7 weeks, ate GREAT- I couldn’t get enough food into him! I never knew babies could eat so much. He was twenty pounds at 6 months old! He was chubby and did exactly what he was “supposed” to do as a baby and life was good… or so I thought. It couldn’t get much better, right? Until about the age of one…then it all changed.

autism puzzle

His easiness and contentedness would be sharply contrasted by how angry and annoyed he would get, for what seemed like no real reason. Loud noises bothered him, especially music, drastic changes in the weather like wind and rainstorms affected him and not in a good way! And foods became a huge issue- toddlers learn what they like and don’t like, but Corey was obsessed with macaroni and cheese- ALL THE TIME! Morning, noon, night… and if I ran out… believe me, I was at the store no matter what time of day, buying more. The extremes of his tantrums were getting worse. I was told repeatedly that I “spoiled” him or he needed a “beating” to put him in line. My heart knew better. My heart knew there was something else. Corey may have been what I thought was “stubborn” but he was perfect in my eyes and he LOVED his Mom! He never left my side unless it was for close family and he was only happy when I was in view. He didn’t play with kids, he didn’t even a want to look at them and that was ok with me, for a while. But, eventually, it was more and more like he was in a whole other world not a part of ours… and a part of me wished I could be there with him. I knew in the deepest part of my heart, something wasn’t right.

` After months of hearing, “there’s nothing wrong with him”, “he’s a typical boy”, ” all boys are slow” ( between you and me, I never quite understood what that meant?) and “you’re being paranoid” I FINALLY got someone to “hear” me- she asked me if he was ever diagnosed “On the Spectrum”? Nope. No idea what that even means? So, being the “neurotic” person I am… I Googled it…Oh My Gosh!!! Finally! It wasn’t me! He was everything Google said and more! Fast forward about 3 months when I could finally get to see a doctor and yes… he was officially diagnosed with PDD-NOS- a form of Autism diagnosed in children under the age of 6. Now I could get help from school for him- he qualified for services, occupational therapy, physical therapy, speech and language. Yay. What I didn’t realize in the midst of my happy dance, that while Corey would “qualify” for Special Education, I wasn’t prepared for what home was going to be like… here it comes. I still had a daughter to care for, too. Most of my family didn’t believe me or want to know about it- it was embarrassing. The friends that cared to even know what I was going through asked and the ones who didn’t care, couldn’t tolerate his tantrums and they stopped calling. Going out to the grocery store, mall or a restaurant became the most difficult trips- it almost wasn’t worth it. But I needed to get out and be around other people. Strange noises made him scream, smells made him freak out and unfamiliar places put the fear of God into him like nothing I had ever known. What I didn’t know then, that I do know now, was if I educated myself “enough”, I would have known all those things, right? Being a parent to an autistic child is a learning process. It’s also one where a lot of tolerance is learned, too. I’ve had many people stare at me and him, people have told me I’ m a bad Mother- that one came not only from strangers, but from family, too- if I knew how to be a decent parent, he would never act the way he does. One learns to ignore it. But it makes everything just a little more difficult. Other parents brag about how smart their kid is, how talented their kid is, how many friends their kid has- I had a “party” when Corey wrote his name without assistance for the first time… in first grade!!!! The first book he read by himself… in second grade… was cause for celebration! Mardi Gras paled in comparison to how many people I called and celebrated the news with! With his success came struggles- his OCD. He became infatuated with things that got in the way of his day, sometimes. Sea animals was and still is a big one for him- Star Wars, video games, cartoons, Titanic The Movie- but the biggest was penguins. He talked about them day and night, all the different kinds, he had videos, books… we even went to the penguin exhibit in Mystic- to this day years later, he still remembers everything about that one penguin. That one seemed to take over his life, but we all listened and in a weird way, became educated by him. Truthfully, I’m glad he took it down a notch…but no obsession he has now EVER compared to “The Penguins”… that one was tough. We did it, though.

Corey is 13 1/2 now and in middle school. He likes girls, video games, different types of foods for lunch -pizza and cheeseburgers are his favorites, though- he likes to cook, he likes math. I could never understand that one but it makes sense why… it’s predictable, just like he likes it. Predictable. That’s our life. Our whole family life. Predictable. Sometimes boring, but we do it because it works for him- the peace through the process is something my whole family and those closest to me have had to learn. I know, God doesn’t give me what I can’t handle, but I guess what I’ve learned? He can bring it on! I can handle anything! Sometimes, life doesn’t always go the way we want it to and Corey learns that everyday with great difficulty. I see it in his eyes when he’s faced with a sudden change. It seems so minute for some of us, but for him, he works so hard to just get through the day and when he does, there’s a certain gratification he gets from doing a good job… and so do I. Partly because I know how hard it was for him to do it…but mostly… because I’m his Mom and I get to love every single second of watching him.

Thanks to both of my guest bloggers this month for sharing such courageous stories.

Autism Flower

Warning…that can be habit forming

Good Habit

Habits. We all have them. Habits can be viewed as good. Habits can be viewed as bad. Habits can be developed. Habits can be changed.

A habits is defined as a practice or tendency.

A few habits that come to mind are:

Bathroom Habits

Buckling up

Listening

Eating Habits

Viewing and Reading

Driving

Nail biting

Smoking

Exercise

I have been working over these past four months to develop some new habits and have seen results in several areas. Consistency is key. It has been said that it takes 30 days to make a habit. Change is not easy however, in fact it can be downright painful at times. We must often stare down what we can often view as a glaring inadequacy. Now I know there are those among us that would flip that statement on its head and say it is an area to be improved, which it is but most often when we are seeing ourselves we tend to look at it from the other perspective. I will say however with practice I have begun to see a shift in my thinking from the inadequate person to one who is constantly seeking to improve and grow herself. This doesn’t happen overnight so be patient with yourself.

The chains of habit are generally too small to be felt until they are too strong to be broken.  ~Samuel Johnson

I lean on God and draw from His wisdom and strength, asking where I should seek to change. A number of years ago I smoked cigarettes. I had quit the habit many times but for one reason or another always started again. One day I felt the Lord telling me it was time to quit. So I did. It was quite easy to put them down. As in the past I resumed smoking again after a period of time but this time I really struggled because I knew I was being disobedient to what the Lord asked me to do. Eventually I put them down again but this time it was a real struggle, the cravings were intense and I yearned for a cigarette like I never had before. The season of grace was gone. It had been present when I obeyed initially but not now none the less the directive to quit hadn’t changed. Lesson learned here…do what the Lord asks when he asks…it will probably be easier than if you delay in your response.

Motivation and habit

My personal successes in 2012 include maintaining a well organized home office, creating a priority list of tasks and getting through them each month, rising at 4:30 each morning to spend quiet time reading and journaling, using my directional consistently when driving(this may seem odd but it makes me nuts when others don’t use one so I realized that CHANGE starts with me), and to add to the list this month hanging the laundry outside to dry in an effort to conserve more energy.

What about you…are there new habits you need to develop or old ones you need to let go of?

Be My Guest Autism Awareness Post

autismawareness

James and I met last March. We were part of the medical mission team in Guatemala. Over the week as James and I became acquainted he shared with me how having a child with autism has shaped his life. I was delighted when he agreed to write a guest post because I feel that when we become more informed myths and untruths are dispelled and I believe that autism is a frequently misunderstood problem. What follows is a glimpse into the life of his family.

When Paige first asked if I would contribute a piece for her blog regarding Autism, I first thought it would be a very easy task. My pride took over. I am integrated into our community as a member of three boards serving individuals with Special Needs, the Chair and Executive Director of another board serving the Autism population, provide bi-monthly respite nights for families called Parent’s Night Out (PNO), bi-monthly Parent Resource Information and Support Meetings (PRISM), and I am also a parent of a 15 year old young man with classic/severe Autism. I thought I had a lot to say, and I could do it quickly.

I was sorely mistaken.

In fact, everything changed last week. Let me explain by telling you how we arrived to this point. I served 20 years in the Army. I grew up as an enlisted soldier and transitioned into the officer ranks as a helicopter pilot. It was during our tour in Alaska where we received the diagnosis of Autism. We heard all the buzz words parents hear long before they receive an Autism diagnosis. “He is going to be an engineer some day,” or, “look how good he plays by himself, he is such a good baby,” or, “He is so smart and so quiet,” among many other statements that later reentered our thoughts when we were told that Jacob had Autism.

At that time Autism was diagnosed 1 in every 166 children. I remember the Center for Disease Control among other advocate groups stating that it is fast becoming an epidemic. The numbers were updated three times since then, 1:150, then 1:101, and now recently the CDC stated it is 1:88. I have not heard the term “epidemic” since 1:166, but I supposed the numbers would now support their claim.

We learned quickly that there were several areas that would occupy our energy and would keep us focused in the wrong direction. As a family, we decided that we would focus our efforts in areas that were within our skill sets. We were not doctors, so we refused to spin our wheels chasing causes or cures, but to work with Jacob in the “now”. I used to be a professor at the Virginia Military Institute and I taught leadership. I would engage my students in an exercise were they were told to define success. I received a variety of answers. After the drill, the students would ask me for my definition. I would state that I cannot define success, but I can define failure; failure is succeeding at the wrong thing. This lesson has proven true in everything we do for Jacob.

Now let me explain the last 12 years. Our lives have been rearranged, turned over, expensive, embarrassing, challenging, off color, disciplined, fragile, strengthened, and tested. Patti is Jacob’s mother and an amazing young lady who can be as stubborn as she can be gentle when needed. She has defended, offended, laughed, cried, and been the bedrock of our family. Jacob has been ostracized, ridiculed, but he has been loved, accepted, and prayed for by family, friends, and our church. Seven years ago, he was in a catastrophic accident where 70% of his body sustained 3rd degree burns. He was in a coma for 45 days and went through an amazing recovery period. It was during that time we decided that I would retire from the Army, we would live in Lexington, Virginia, and we would start ministry to help families affected by Autism Spectrum Disorders. In our ministry, we discovered that 80% of marriages end in divorce, the mother usually raises their child with Autism, and she becomes isolated without support.

Jacob has terrible tantrums. I have a friend who is from Greece. He owns a restaurant in Lexington, VA, and he participates in our annual fundraisers. He asked me, “What is Autism?”

I replied, “Nick, how frustrated do you get when you try to communicate and you can’t find the right words, or the person you are talking to, just can’t understand?”

“I get so mad,” raising his arms above his head showing his frustration. I explained, “Autism is a disorder that keeps a very intelligent person from being able to communicate. They can get so upset that they lose control. It is like what you feel, times 100.”

If a child has a diagnosis of Intellectual Disability, their IQ is below 70. That’s the only diagnosis. However, that is not the same with ASD. In fact, for Jacob, the diagnosis came from a team in Seattle, Washington. Not every child will get a multi-disciplinary diagnosis, but all will agree that the testing is much more complex than an IQ test. Every diagnosis is complex. Unfortunately, because of this complexity, Developmental Pediatricians, Psychologists, Nutritionists, Practitioners of Holistic Medicine, parents, and school professionals rarely agree on the causes, cures, or approaches for treatments. Healthcare providers disagree on funding for treatments, schools argue over therapies, and parents are left paying the bills attempting to find out the “cure” or even what works in keeping their child somewhat integrated in society.

For 12 years, we altered our lifestyle. We had extreme difficulty in finding childcare for social events that my unit would sponsor, or when friends would invite us over for a BBQ. For 12 years we have grown accustomed to segregating ourselves. Our friends had learned to not ask us over for dinner because they did not want us to be forced to decline and they did not to feel guilty. For 12 years we kept our family vacations within close proximity of Jacob’s ability to travel. We flew from Alaska to the states when he was three, and that was the last time. We have felt the wrath of Jacob if we were forced into long periods in the car. In fact, anything that is contrary to his routine would eventually end with a “melt down”. While flying helicopters, I learned an Emergency Procedure for an event called a “High-side”. High-side is an emergency situation where the engines and rotor system begin an unexpected and rapid escalation. This event becomes destructive to the helicopter. Sometimes the symptoms are gradual and are not noticed until the engine has escalated too much to resolve. Other times, escalation can happen within a split-second. Just as a helicopter’s engine can high-side, Jacob’s behaviors or “meltdowns” can occur gradually or suddenly. We would often find ourselves in a very precarious situation at a grocery store, restaurant, library, school, or other area. We had developed “Emergency Procedures”. It became just easier to stay at home.

For 12 years, we had been so wrapped up in our lives and ministry with Jacob and our community; we (Patti and I) did not see what was coming.

So, what happened last week? I often travel to conduct leadership seminars. I was asked to fly to the New Mexico Military Institute and conduct two sessions on a Saturday. When I gave Patti my itinerary, she asked if she and Jacob could tag along. I just returned from Guatemala and a myriad of thoughts flashed through my mind; airport security, lines, TSA screening, outbursts, what happens if he high-sides on an airplane while flying, full body scans, Jacob is non-verbal, what happens if we separate, and the thoughts went on and on. Patti was convinced this was an experiment she wanted us to endure. We decided to take the chance, and we begun praying earnestly for God’s peace.

The time approached closer and my anxiety level skyrocketed. I have done this leadership seminar many times, but my worries were about Jacob travelling. Patti and I went into planning with excruciating details. We planned every exit strategy for her and Jacob that we could think of permitting me to continue on the trip if necessary. She called American Airlines and stated her concerns. I remember driving to a track meet for our other children when American Airlines returned her call, assigned her a special agent to answer her questions, addressed each of her concerns, and made accommodations for Jacob. We were excited that American Airlines were very supportive, but our anxiety continued. American Airlines reached out us and attempted to ease many of our concerns.

We departed for Roswell, NM. We tried to make our trip as comfortable as possible. We flew from Reagan International on Friday, March 30th with a layover in Dallas. We made our connection easily and landed at Roswell, International that afternoon. After a great dinner and an evening at the pool (Jacob loves pools), we retired exhausted and in utter amazement on how well he travelled. We laughed as we reminisced on how Jacob begged to sit at a window seat (typical for 15 year old boy). He drank the water given by the flight attendant, he waited his turn to grab his backpack from the overhead bin, and he walked through the airport politely and with a purpose. I had a wonderful leadership seminar on Saturday, and on Sunday, we departed early for home in reverse route.

We landed at Reagan, picked up our luggage, and were in the truck heading for home when I noticed that Patti was quiet and later crying. I asked her what was wrong. She said this trip was liberating. She said, “For 12 years we could not go anywhere out of fear that Jacob would have a meltdown. Now, I am wondering where we should go next.” As I write these words, I joined her in crying.

I can honestly read Philippians 4:6-8 in a much better perspective.

6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

The sky is the limit. I just asked her if we can stay domestic. I don’t want to deal with Customs.

James Cook
Chief Operations Officer at Sayre Enterprises
Chairman and Executive Director of Rock Bridge Family Services
Jacob’s Father
Patti’s Husband

April is Autism Awareness Month

 

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Last month The Authentic Me celebrated Women’s History Month by inviting guest bloggers to write a post about a woman that inspired. I enjoyed the format of guest bloggers very much and hope to continue to incorporate it into my regular blog. As I readied myself for the turn of the calendar I discovered April is designated Autism Awareness Month and set my sights on asking 2 people I know who have been affected by autism if they would consider writing for this purpose. Both have agreed, happily I might add.

I will be sharing their stories with you soon. I am sure that you will be as informed and impacted with what they share as I have been.

If you have a personal story to tell about how autism has affected you I would be honored to have you as my guest. Leave me a note in the comment section and I will be in touch.

 

Flying Solo

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Every time I see those little cookie vases I smile. It is the simple things in life that are so significant.

Well hard to believe that it is already the middle of March. Happy St. Patty’s Day to all my Irish readers. I am about 50% Irish myself, guess that is why I enjoy beer so muchSmilest-patricks-day

My husband, Steven returns late tomorrow. He doesn’t travel without me so being home alone is unusual although I must confess not unpleasant. It is nice not to have the responsibilities that come along with being a wife for a little while. Not that he is demanding or anything but its nice not to have to be responsible to anyone else for a bit, well except the animals.

Steven and I have been married 7 years this June. Second time around for each of us. As I think back to when we were first married and how I would have felt and acted with his week long absence as compared to today I am very aware of how much I have grown and matured. It is amazing how REAL love makes you feel secure. This security is mostly because I have grown in the Lord these past years AND I am married to a truly wonderful man.

I have made great use of my time alone this week. I am so pleased with the fact that I committed and followed through with early morning rising and journaling every day! Wow, good for me! I have kept a journal for years but never with great consistency. I am still using the same one I wrote in 3 years ago, does that tell you something? Well I was inspired by Cee and Chris who are working through the Artist’s Way and have been journaling 3 pages everyday. I am really impressed with what my journaling has produced over the week and I intend to keep it up.

I have also been really blessed to spend time with each of my daughters, my mom and tomorrow my sister. Last night after work I met my oldest, Emily, at this fabulous place I found on Yelp.IMG_2894 I use Yelp often when I am looking to explore a new area for great eateries. We ordered salads, entrees and even splurged on dessert. Every bite was excellent and I enjoyed left overs today. I will be returning again soon and often.

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I also recommitted myself to Weight Watchers. I am a lifetime member…that means I made my weight loss goal(last March) and no longer pay.  I continued to attend weekly meetings for several months after achieving my weight loss goal but then my life changed and I stopped attending. Well guess what happened? Yep, over the past several months I gained some weight. Not terrible just about 10 pounds or so but I know what can happen and I refuse to do this again. So I cracked out the little WW calculator and began counting points. I have lost about 5 pounds. I plan to lose the rest and then get back to meetings. For me the weekly weigh in keeps me honest and I need that. Next thing is for me to get back on track with some regular exercise. I sure hope I will be writing a post about conquering this hurdle next month!

Well for tonight I think I will go plug into a movie. I borrowed a few from the library and have not watched a one.

Thanks for reading.

 

 

Looking back helps to keep forward moving…

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Well as this weeks draws to a close a new month arrived on the calendar. Yesterday’s post took on a life form I did not expect and am hopeful that a few of you will create posts throughout the month celebrating women in history. My plan is to write at least one a week with an eye toward highlighting different areas of excellence each week.

Today my plan is to complete a quick review of the past months accomplishments, some of which were planned some came as a surprise. And align with this months objectives.

~ I began riding the Easy Street van. This is a major blessing in my life as it has allowed me to regain 2 hours a day while someone else does the driving. Not to mention I am doing my part to decrease the carbon footprint.

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~ You would think with the extra time I would have accomplished more toward my reading goal. I have only completed one book this month. I have been reading some of the magazines I subscribe to on the van. I also use it to read and comment on many of the blogs I follow.

~ We had a wonderful Foodie Night and I learned how to make Fondue. We also experienced several new and some old favorite places to eat. My personal favorite would be the Golden Chopstick in Westerly RI where I had Dim Sum for the first time. Wonderful!

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~I managed to keep my home office organized. Kudos to me for this accomplishment…so easy to let this fall off.

~I tried several new methods of organizing at work. This is a constant evolution as the role is new and there is NOT a software program to help track the many patients that I am working with on an ongoing basis. This really causes me to be creative, flexible and constantly trying new things.

~ I have begun planning for a new ministry that I mentioned last month. I want to start a support group for women who have undergone cancer treatment. More to come on this.

~ I have begun to actively build my Twitter account. This helps with the goal above.

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~ I bought a new Canon DSLR camera and have begun to experiment with it. My photography class is requiring stretching and growth to complete the assignments. God is at eye level

 

 

 

 

 

 

 

~ I have written almost 60 posts since the creation of Authentic Me and have almost reached 3000 hits. Thanks to all my readers. I am considering a second blog that will focus primarily on issues pertaining to health. Stay tuned.

~ I continue to volunteer for Dress For Success. In February we hosted our Tiara Tuesday event at this place called the Russian Lady in downtown Hartford. Great spot with old, eclectic furnishings. Went back last night with friends. I completed the coaches training. Now I can be matched up with underserved women who are trying to enter into the workplace and help them achieve their goals. Very excited.

~ I guess finally I will mention that I applied and was accepted to spend a week this July at Paul Newman’s Hole in the Wall camp. I will be volunteering for a week when kids with sickle cell disease are there.

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Well that is all I have to say at the moment. The movie is cued up and my wonderful husband is waiting. As always thanks for reading.

Have a wonderful week. Happy blogging.

~Paige

Beautiful Women

Everyday I am amazed at the strength and grace I see at work in the lives of the women I interact with as they struggle to deal with their breast cancer. Today was no different.

I met C.P two weeks ago after that fateful biopsy revealed the dreadful news for cancer. She is a 38 year woman who moved to the US 2 years ago to start a new life for herself. This unfortunately means that she qualifies for NO federally funded insurance and cannot simply not afford the payments on the plan offered by her part-time employer(in my state you must be in the US for 5 years to qualify for state aid).

Needless to say C.P. has done her share of crying in my presence. Today I accompanied her to the consultation to the medical oncologist, the doctor who will order the chemotherapy medications. She saw the surgeon last week and since then has had several body scans looking at various body organs to determine the extent of her cancer. She is very nervous when we go into th exam room to meet the doctor.

After reviewing her history, all the reports and a thorough exam, the doctor tells CP that there are several small areas in her lung that could be cancer. If this proves true it means the disease is now considered Stage 4, treatable but not curable. The doctor also tells her that she has what is known as Inflammatory Breast Cancer. Much less common, always more aggressive, and more frequently seen in women of color. CP has difficulty making eye contact with the doctor for much of the visit. She needs to remain strong.

When the doctor steps out of the room CP tells me that she is a Christian and that she has been praying. Yes, I reply, prayer can gives us strength. She asks, are you Christian, Paige. Yes, I tell her. The doctor returns to the room and reviews the things that need to occur next, a new long list of people to talk with and tests to be done. This is such a difficult process. So much new information, so many appointments, so much stress.

As CP and I say good-bye for now she tells me ” I am not going to let this cancer beat me, I am going to beat it.”

She is so strong. She is so beautiful. She is so courageous. And today she is hopeful.

I am so blessed and honored to have such a place in the lives of so many beautiful women.

Pink In Honor Of Breast Cancer Awareness Month

Image via Wikipedia