Category: Casey Duffield

Stress… can you really say it’s only the feeling of the day?

Posted on by Casey

Stress.  I feel like everyone can relate to being overwhelmed. How can life not be overwhelming at one point or another, right? Throughout my childhood and young adulthood, I had always considered the idea of being overwhelmed as something that meant you just had too many things to do and not enough time to get it all done before another task or responsibility got added to your pile. As I have matured and entered into what science deems “middle adulthood”, and even though that makes me feel old, lol, I reflect on the times and my life’s current situations and realize that during most of it, I was more emotionally than physically overwhelmed.

Chaos

Yes, the demands of being a young mother at 18 were challenging. Couple that with being the primary caregiver for my dad while also going to college/nursing school, I had a lot on my plate. But growing up in a house that was in a constant state of chaos for one reason or another, left me feeling like the amount of physical and emotional tasks and challenges were normal. Living in a constant state of high stress was the only way I knew how to survive. I was so accustomed to chaos, that when there was none, I would seek it or create it.

I knew no other way to function if life wasn’t constantly trying to take me down. I even jokingly reflect that my teenage years in our childhood home could have been easily upgraded from chaos to mayhem.

Physical  Impact

After many…. many… years of therapy, I learned how to stop looking for chaos. By finding or creating my own peace, I was able to manage my stress levels…. or so I thought.

This constant stress always created some underlying health issue or challenge at one point or another in my life. My mother would say that I wasn’t a hard child, just the one who was constantly presenting new challenges on the family health front. (If no one has heard of it, then Casey must have it.  )While that can be a post all on its own, the one that truly stuck out and I think it relevant to this posting, is my skin condition (again, could be a post on its own).

An Allergy to Water

The shortened version is that after the birth of my oldest son, I developed a skin condition that no dermatologist could identify. After many dermatologists and 12 years later, I was told that I had an allergy to water. Yes, you read that correctly. And the reason my body was having this issue, was initially triggered by the overwhelming amount of stress and emotional trauma I endured during that time.

And since I didn’t realize that stress and unresolved family issues were causing so many physical flare ups, I was placed on disability for almost 9 months, removed from work that I truly loved, so I could go on immunosuppressants, coupled with anti-anxiety medication and a heavy dose of antihistamines. This medication regimen had helped get my body to stop attacking itself, allowing me some time to get my stress levels under control. But more on that later.

After some big personal losses in my late 20’s and lots of consideration, my husband and I decided to move our life in New Jersey to Georgia to start fresh. Even though we absolutely loved our home state, to say that the stress and emotional triggers in our lives were overwhelming would be a complete understatement.

The Big Move, Big Relief, Surprise News

Once we settled into a routine, our lives in Georgia became simple and surprisingly, significantly less stressful. Yes, we had stress, but it was a different stress. I had stopped seeking chaos, avoiding it at all costs. And an added bonus…. my skin calmed down! The emotional turmoil that I was enduring all those years, slowly started to melt away.

Yes, I still have sensitive skin but I no longer need any of those meds for my skin! Rebuilding our lives in Georgia gave us a feeling and sense of happiness and peace that we had truly never experienced. And along comes fate, with its news of my diagnosis… laughing at our idea of a plan… throwing our lives once again into complete emotional upheaval.

The Diagnosis

We struggled to understand what the future held when no one could even tell me what was going to happen or when it was going to happen. The idea of a prognosis was an absolute joke. Our stress levels were once again taking one giant leap at a time with the jumps coming closer and closer together.

We had decided not to tell our boys because quite frankly, what were we going to tell them? We didn’t have any answers, so how were we going to answer any they had? We kept my diagnosis from them for almost a year before my knee problems and endurance became more prominent.

My oldest had more questions and my husband was protective, sometimes overprotective. We were both on a short fuse. (Telling my sons was another hurdle… I just keep adding post ideas, don’t I?)

I had sought out a therapist again, knowing that all of the coping skills and mental health intelligence I had learned weren’t enough… I wasn’t prepared for this. I wasn’t prepared for muscular dystrophy.

Disease Progression, More Unknowns

As the disease has progressed and remained an unknown, I have tried to find different ways to cope with the ever growing demands that our ever evolving, forever changing lives brings us. I am not sure how other people choose to handle their stress.

But since I am unable to do any physical exercise that would bring endorphins that create more muscle damage, and I am told that yelling at everyone is not a true coping method, regardless of how much better I feel in the moment….I’ve had to choose a new strategy.

Moving Toward Goals, A Game Changer

Instead, I have embraced setting long term goals. A few months of therapy taught me that I was living in fear of things I had no control over.  And that I could remove some of that stress by finding something to look forward to.

Working toward a goal that would make me feel productive in my own life- – not feeling like such a potential burden was a game changer. Another game changer was embracing living in my emotions but not moving them in permanently. For example, when I am frustrated or upset, I can be in that emotion for a certain time frame, but it isn’t allowed to consume my life. My mother always referenced it as having a pity party when needed, but at some point, the party needs to end.

In the last few years, especially since Covid, I resumed my love for reading. It allows me a space to be out of my own head for a while, regain some emotional control and find my center.

My hope..

I hope that at some point the stress of the unknown will go away and be replaced with scientific answers and standards of care. I hope that you, the readers of these posts, find some sense of solace with the knowledge that you aren’t alone in struggling to handle those hurdles that leave you feeling unprepared.

Your emotions are just as challenging and just as valid as everyone elses.

And lastly, no one has their shit together. Everyone handles their shit differently. As long as you aren’t hurting yourself or anyone else, then continue to do your best each day, because that is all the rest of us are ultimately trying to do, too.

A Walking Medical Mystery

Posted on by Casey

In some of my other posts, I mention having had health issues most of my life. Let me preface by saying that I never had to endure anything as horrible as childhood cancer or some life threatening or debilitating disease as a child. I did, however, have health conditions that, in their time, were not as well-known as they are now.

I also want to acknowledge that standards of care are vastly changed since my childhood, but it will explain where science and medicine were at that time and how far we’ve come.

Medical Mystery #1

As a child, I had eczema that only covered the left side of my body, (for real!)- – rashes that only affected certain parts of my body; 5-6 operations to have tubes in my ears starting when I was 18 months old, and horrible sinus allergies. Nothing crazy but enough that my mom had to keep an eye on me more often than not.

Medical Mystery #2

Fast forward a few years, maybe late elementary school, early middle school. I get what first appears to be pink eye… no big deal, right?
Wrong!
3 doctors and 1 week in the hospital later to determine that I didn’t have pink eye, but an abscess had developed in my eyelid and was pushing my eye into my head, causing an increase of pressure in my eye and head. Who knows, right?

Medical Mystery #3

Few months goes by… I must have gotten sick and required an antibiotic. I had told my mom that I felt like I had something in my throat for days but nothing was there. A few days later, a friend and I are in our bathing suits, getting ready to go to my grandmother’s house to go swimming when she asks what’s on my stomach. I look down and there are these huge, raised sections on my skin.. (FYI… I had one of those really cool bathing suits back then that had 2 holes on each side of the stomach… they have since gone out of fashion and are making a slow come back, just in case you weren’t interested, lol). One ER visit and a hospital admission later… anaphylactic reaction to an antibiotic. One week stay with the world’s most misleading medicine in the world. It smelled like white chocolate.. only it didn’t taste like white chocolate… the hospital was close to the high school, so my brother came by on his lunch to drop off Jolly Ranchers to my nurses to bribe me into taking my medicine. It worked. LOL

Medical Mystery #4

I’m now in 5th grade, I start telling my mom that I have horrible headaches and I am so tired all the time. I can’t keep my eyes open for more than an hour at a time. She takes me to the doctors again… they say its nothing and send us home. This goes on for almost a month… a FULL month! After 3 visits and my mother laying down the law, the doctor finally decides to take a blood test only to figure out that I have mono. (I’m about 9-10 years old. Doctor’s excuse was that he didn’t think a blood test was necessary…) Today, this would have been figured out within a few days, but again this is the early 90’s. Science hadn’t caught up yet. It’s highly contagious to people who live with. I got my own set of dishes and utensils that no one else used, washed with bleach when done. I spent the next 3 months sleeping 18-20 hours a day!!

Medical Mystery #5

Now it’s 6th grade… and I get it again, but this time I am out sick for 6 months, same sleeping patterns. The doctor tells my mom that it will double each time I get it so I need to take care of myself so it doesn’t continue.

Not too soon after this, I break my hand being a kid and rollerblading in the neighborhood. It takes 3 doctors to figure out to turn my hand a different way on the X-ray to see all the fractures on the inside face of my knuckles that were not seen on a different view. 6 weeks in a cast… and oh! It was my writing hand! My teachers don’t seem to understand that I can’t just switch hands to write, so they make me use my right hand to write all the assignments and homework. Needless to say, I remain someone ambidextrous.

Medical Mystery #6

I’ve somewhat told you about my skin issues but I kind of glazed over it.

I was 18 when it started to happen. I noticed that after I washed the dishes my hands were swollen, red and itchy. I figured it was the soap I was using and kept that mentality for a number of years. I changed my soaps, saw a few dermatologists who said to try this or that, but it only made things worse.

If I went out in the heat and started to sweat, my whole body was itchy. Itchy like your skin was crawling in bugs, itchy. Exercise made me sweat… itchy. Showers… itchy before I even washed my hair.

The doctors my mom took me to kept telling me that there was nothing there. There was no reason for it and would send me home with a prescription for some expensive scentless cream or lotion that made my skin go crazy. We continued to search, but to no avail.

It got so bad that when I would shower, my husband would have to hold my hands to prevent me from scratching my skin off. I didn’t care if my skin bled or cracked or wept. The itch was so intense it would drive me literally insane.

My hands were the most visibly affected. I would wrap my fingers in cortisone cream and cover them in gauze. I looked like a leper. I finally got some medicine to stop my itching before I would shower. It was like taking 2 Benadryl just so I could get clean. And to deal with this, I had started showering every other day because my skin couldn’t tolerate the water.

Medical Mystery#7 and ten years later..

This process went on for over a decade, literally. It just became part of my norm. Using a certain brand of homemade soap, certain brand of razors and shaving cream, medicating before a shower and every other day…. I had stopped noticing how often I was itchy. I was always scratching my legs or arms or back. I was getting ready for a surgery when my GYN asks me why I am taking a particular medicine. I explained it to him and he stops…pauses… looks at me and says ” You live like this?”

He then referred me to a teaching hospital in North Jersey, where he thought they might have a better idea or more specific subject knowledge. At this point in life, I had all but given up hope that someone would believe me, but figured, ‘Let’s just try one more time.’ Couldn’t hurt for one more crazy reaction from a dermatologist.

OK, one more doctor..

So I went, told the doctor about it. Showed her my hands. She said, “It’s psoriasis.”

I said,” No it’s not.”

She looked at it under a microscope during my visit, said “You’re right, it’s not.” Then she said, “I don’t think you’re crazy. I think you really do have something and I think you have aquagenic pruritus.”

Then she proceeds to explain that it literally translates to itchy after water. (How does one become allergic to water…?)

I said  to  myself, “Well duh! ”  as she explained that there’s no official way to test it except to do a skin patch test to rule out other potential irritants or allergens that would cause an issue.

Longest 3 days ever it felt like!! Turns out, not only did I have my body attacking itself after I went in water, but it didn’t like a bunch of other things that are in almost everything you eat or touch! I can’t live in a bubble, is what I told her!

I thanked her for everything, especially for believing in me. We came up with a treatment plan, including getting my triggers and allergens under control.

I, still to this day, am careful about where and when I shower, what soap I use and read the labels of products that are topically applied. Talk about a nontraditional PTSD!

So imagine my surprised face when I’m told that I am a patient with a disease that affects only one in a million people…HMERF (Hereditary Myopathy with Early Respiratory Failure)…







Alone…not Alone

Posted on by caseyscurefoundation

Sometimes we can forget how important it is to be part of something; a sense of belonging to a group.  With COVID being so in the forefront of everyone’s lives, a sense of community when we are forced to be isolated for self-preservation, has become more important than ever and ever harder to find.

Suffering (oh if you only knew how much I loathe that word) with a rare disease has left me feeling so isolated even when I am completely surrounded by my family and friends. It is a feeling like no other. To know that I stand in a group with so few people in the world (that I know of) that you can use all your fingers on one hand to count us all and still have 1 or 2 leftover is unfathomable. This is not the way I wanted to be one in a million!!

People ask me how I am doing from time to time. And I am never quite sure how to answer them. I know they mean well and are asking from the good place in their hearts.  But can I tell them the truth?  Or even should I tell them? How are they going to react if they knew exactly how I feel? Are they going to judge me for the things I can tell them?

So I answer them with the most generic phrases like “I am hanging in there” or something witty like “Doin’ the best I can!” (insert hand smacking my own forehead).

And then one day, I find myself scrolling through FB and see a fellow MD friend heading to a neurologist out of state and I curiously, yet sincerely, ask what makes the neurologist so special? I have yet to meet a neurologist who knew more about my condition than I did and who was honestly interested in helping me.

Side note – Now, don’t get me wrong, I see a local neurologist who I like. He helps with what he can and refers me to the correct specialists when need be. But like I said before, having a rare disease means that most medical professionals don’t know enough about me or my disease to help do more than manage my everyday symptoms. And I am grateful for his willingness to help in whatever way he can to make me be me for as long as I can.

 Most of the specialists I have met did not give me the genuine feeling they were interested.  And deep down I believe that they care, but they realized they really weren’t going to change my life and that there are other avenues more worthy of their time that can affect the most change.  And even someone in my predicament in life can appreciate wanting to affect change on a grander scale, even if it stings a bit.

Now that that is out of the way, back to the FB story…
So, as the comments from the FB post continue, another MD friend comments saying that she and I need to chat. I agree and we set a time to talk. She lives in Pennsylvania and I, obviously, (insert another head smack) live in Georgia. One thing leads to another and we are not able to connect as she is feeling under the weather.

Squirrel!! That is something that I think most able-bodied people take for granted. Your energy levels are boundless. My disease wipes me out after going food shopping to the point of spending an hour or two on the couch to recover enough energy to cook dinner.   And back on track… I hope…

We end up on the phone tonight, talking about things that I would never admit to saying out loud, outside of a small group of friends. I find myself laughing and feeling some tension rolling off me while I find an emotional connection to someone who understands; someone who just “gets it”.  I don’t feel like I need to add the “just kidding” to the end of the sentence, because deep down, I am really not kidding. And she completely understands and there is zero judgement.
It’s like we speak a different language than they do. And yet despite the best translator apps our smart phones have, we just can’t seem to understand what the other is saying.  But then, after what feels like an eternity, someone comes over and invites me into this room where everyone understands what I am saying!! No interpretation required!

I guess I didn’t realize how lonely I was feeling until she and I were on the phone. I didn’t know how much I needed to feel not alone. And I forgot how much a simple phone call with someone whom you have only met once, mind you, can make me feel so much better than I realized I needed.
​.
We decided we should make this a monthly thing, maybe a video chat and a glass of wine, because life is heavy enough.  And sometimes it’s just what the doctor ordered…
Thanks Jess…

Inclusion

Posted on by caseyscurefoundation

I always want to be so politically correct and proper. I want to be motivating. Inspirational. Selfless. Encouraging. Supportive. And I work so hard to be that person daily. But to be completely honest, some days I just lack the capacity to be that way.

I believe that COVID is real.  I believe that the consequences of COVID will continue to be uncovered.  And let me say that I whole-heartedly believe that COVID has long lasting health effects that are unknown and being discovered daily.  I guess that I just wish someone was looking that hard for me… for my rare disease will ultimately take my life, too.

And here’s the story that inspired this posting:

I was scrolling through social media and came across a post a friend had made. She was discussing and making bullet points of the hardships that she and her family has been experiencing while she has been recovering from COVID19. 

All her statements were and remain valid. 

She was discussing how she couldn’t keep a promise to her child to start an extracurricular activity; teach her child how to ride a bike; how there was no cure for her in sight and all of her emotional struggles are happening after 100+ days.

And all I could think while I am reading her post is…. You think 100+ days is bad! Try 4+ years! 

No cure, no treatment options, Nothing!!! Only waiting and hoping that people will care enough to open their hearts and wallets to help me.

She is talking about grieving for her lost time in the last 100+ days and I am truly sorry for her. 

I’m envious of the money her disease will garner… But where is the outpouring of support for people like me?

Where are their bleeding hearts for my children and their lost time with their mom? 

Where is their compassion and empathy for my parents who are grieving for their lost time with their daughter? 

I have already lost a parent to this disease and my children are going to watch me travel that same path and all I want is help to prevent that horrible, painful, experience of watching your parent waste away.

I don’t want them to watch me be bedridden, with machines breathing for me.
If every person in the United States gave 1 dollar each, scientists could find a cure for people like myself, potentially my children and grandchildren and so many others with rare Muscular Dystrophies!!!! 

I just want to LIVE!! I don’t think that is such an unrealistic expectation to have. 
Isn’t that all that my friend wants? To enjoy her life with her children as she was meant to?  People suffering with the long-term side effects of COVID will have more scientists and research being done for them than I could ever hope for.

And understand, I do want them to have a cure! (I tend to have random movie scenes pop up in my head and at that moment… I picture Donkey jumping up and down saying Pick me! Pick Me! from the movie Shrek) I want them to have so many treatment choices that they know ultimately one will work for them. 

But I, too, want that same chance; just need to be seen. Be heard. Be helped.

I want more than anything to be empathetic to so many non-MD people when it comes to their own experiences and hardships with their health. 
​
If I can’t give people empathy when they are going through an emotionally taxing health problem, then how can I expect them to have empathy or compassion for my own health journey? 
​
All my emotions really come down to wanting inclusion. And I can only hope that as people continue down these uncharted paths of COVID recovery, that they will begin to have an understanding of what so many of us in the rare and ultrarare disease community experience; and will continue to experience without their help and support.

At what point is my suffering, and others like me, enough to drive the larger community to support my search for a cure?  And not just the people who know me personally?

Double Edged Sword

Posted on by caseyscurefoundation

With the end of summer here and the wonderful beginning of autumn, the season change brings many mixed emotions for me. 

August is the month of my father’s birthday and also the anniversary of his death. I feel those days so intensely now that this disease has made its presence known in my own body.

What I wouldn’t give to have 1 day to sit beside him?

I am not sure that I would ask him about his disease or even what body part failed him first or what path it took… I think I would ask him what he would have done differently…. Tell him all the things that I could have used his guidance on.

Laugh with him.

You know sometimes, it’s the small things that really hit me the hardest; like I don’t know what my father’s laugh sounded like. He had spent so much time in the hospital and was trached (the hole in your throat) for most of my life and what time I spent with him, that he would slap his knee and kinda move back and forth in his chair to emphasize his laughter. (The reason his trach matters is physically speaking, he would have had to plug the hole with his finger to prevent the air from escaping through it in order for the air to move through his vocal cords to enable an actual sound of laughter). 

But my husband and I chose to get married in the month of August because we thought we needed to add some positivity to the month. It was just too much sadness for one person to carry, so this past August we celebrated our 14th wedding anniversary.

September has always been fun for me as it has my birthday- woohoo!- and the seasons start to change. From the warm and humid to the cool and crisp accompanied by the colorful fall foliage just makes my soul feel at home.

​However, since I was diagnosed, my birthday makes me wonder what the next year brings. What abilities will I have this time next year? Will I still walk without assistance? Get up from a chair without someone lifting me? Continue to work in a career that I have loved my entire life? Or will my body tell me I am just kidding myself? Will the memories we all think we have time to make only become  one I can dream of?   Will progress be made that can slow this disease? Will any answers have become clear? Any solutions or ideas?

And then I look at my children who keep me on my toes, both mentally and physically, and realize that they deserve a mom who will embrace life to the best of her ability, no matter what device gets me there. My husband deserves a wife who he can enjoy life with, no matter how many times he has to carry me to get there. My parents deserve a daughter who exemplifies the fighting- never give up- have your down days but dust your jeans off and get back up- spirit that they tirelessly fought to teach me. A sister who is going to grow old to tease my brother as siblings are supposed to. A friend who will smuggle your favorite alcoholic beverage into your nursing home so we can celebrate our 50 years of friendship. 

So yes… it appears that with all things in life, no matter what you have going on, it seems like there is double edged sword ready… waiting around the corner.

Unless you choose to grab it by the handle.

Don’t Let Anyone Tell You It Can’t Be Done…

Posted on by caseyscurefoundation

Hi! This post is by Casey’s mom, Chris Duane.
First off, I thank each of you who have made a donation to our Foundation through our Go-Fund-Me page. Every dollar counts and as you read on, you’ll understand why.

As you may or may not know, I have spearheaded the formation of the Foundation for Casey’s Cure, Inc. I proudly announced in June, 2019, that I was going to raise the money needed to get someone to work on Casey’s defective gene. Period. And I wouldn’t take or think for one moment that it wasn’t attainable.

I mean, sure, I’d never raised $350,000 before, but hey! Just because I haven’t done it, doesn’t mean that I can’t!

You know how a dog has that adorable way of cocking her head at you? And you’d swear that she was asking, “What? What does that mean?”

Well, I don’t have to explain to you that when humans do that to each other… well… that’s what so many people have done when I announced that I was going to find a cure for Casey. They’d cock their head, tap my arm, and say what a strong and determined woman I was… but the truth was, they didn’t think there was a snowball’s chance in hell that I would succeed.

And they weren’t the only ones who were doubters, but…

There was no way would I be persuaded that this was a ludicrous idea.

First, not-for-profit charitable foundations have pretty strict IRS guidelines. So I hired a lawyer who specializes in charitable work. (She works out of Nevada and Georgia. In this day and age, distance is of almost no matter. ) We received our 501(c)3 designation letter in March, 2020, retroactive to the Foundation’s commencement date of August, 2019.

​While we were waiting, I also knew we’d need a Board of Directors, and the ones at the top of my list were my daughter-in-law’s parents. That we have been fortunate enough to a family member with strong ties to the research community around the US…well, I can’t even begin to tell you what it was like when I received the email from him that said he had found a group of researchers at the University of Missouri who have spent the last 25 years working and researching how the TTN (pronounced tie-tin) gene.

For background, the TTN gene is the longest protein chain in the body and for some reason, finding researchers working on that chain was… disappointing, to say the least. When this family member put out Casey’s information to his community, TWO groups of researchers popped up! After explaining the medical details of her genetic testing, these researchers are anxious to get to work on Casey’s Cure.

​But, when our family member came back with the information that two or three sets of researchers are VERY interested in working on Casey’s Cure, well, my heart just fell to my stomach… I couldn’t believe it. And he closed his email with….”this might not be such a crazy idea after all…”

This is my journey. To find researchers who can dedicate a good portion of their time working on Casey’s Gene and to find people who are empathetic enough to make a donation… of any size.

The researchers need $350,000 to begin work. Then… they’ll need more, but I like to take on challenges one step at a time…so to $350,000 we go!

Thoughts On The Future…

Posted on by caseyscurefoundation
​Well, today was one of the first events in constructing our Wellstar promotional campaign.  Patricia R, Wellstar’s Public Relations Director in LaGrange, GA, arranged a photo-shoot of me with my family. The backdrop was beautiful and the terrain surreal. Until the challenges that the average person does not see become quite visible. And so… my support system! What you may not know is that muscular dystrophy begins with the smallest changes; ones that are barely noticeable to just about anyone but me. Well, except for my family.  They notice the small changes in my walk, the increasing struggles I have with picking up things that I’ve dropped onto the floor.  (The bending isn’t as hard; it’s the getting up part that’s hard… and gets increasingly harder bit by bit.) Sometimes I feel guilty having and using my Handicapped Hanger when I shop. What you see is that I have a bit of trouble getting out of the car, but it’s not something that may really catch your eye. You probably notice me, after I’ve parked, walking away from the car. I look like I walk pretty well! “Heck”, you say, “Why does she have a handicapped parking spot? She looks okay to me!” What you don’t see is how hard it is for me to pick up my legs to walk; how hard it is for me to keep my knees from buckling. Or the pain that comes from the strain on my knees and back because my muscles in the lower half of my body are failing.m I admit, I can make it look like I’m just like everyone else… What you don’t know… is how hard it is for me to do that… So… back to my support system… I’ve been able to hold it together for the last 2 1/2 years. I’ve been able to keep up with the house work, shopping, dinner, laundry, homework, football games… but all that has changed. Dinner time became a bigger and bigger stressor for me and my family. In a two working parent household, someone (I’ll let you ladies guess who…) is generally in charge of getting dinner together. But week by week, it became harder and harder for me to do that. You see, I’m a nurse in a busy pulmonary office by day. And I take great pride in my work. I work with a great team and feel that it’s my obligation to be sure that the patient schedule I’m responsible for runs as smoothly as it did before my m.d. And the patient schedule ran as seamlessly as possible. I always want my patients to come to the office and see someone who was focused on them, who made them the priority and left them feeling like someone cared. As you may suspect, many of them are critically ill and as a nurse, I have vowed to do my best to help my patients, and their loved ones, through their most difficult times. As you can imagine, it was a tiring goal even on the best of days… but now… my will is as strong, but my might is not. Coming home to the chaos of no dinner with a hungry family facing an exhausted mom was just becoming… too much. I am fortunate enough to have a mom and step-dad (Bob) who love all of us enough to leave their lives in New Jersey and come to Georgia to help out. Between us, we’ve divided up the weekday dinner schedule: Hubby takes dinner on Monday, Tuesday and Thursday are Mom & Bob days; Wednesday is Joshua, my oldest son’s day and Friday, Saturday and Sunday?  Well, that’s a toss up!  We enjoy the weekend without the weekday exhaustion.  Joshua also cleans the house on Wednesday’s and occasionally, mom comes down and hits up the bathroom for me.  I grocery shop on line and drive-in/pick up to help me manage the weekly food grind. All in all.. …. I’m lucky to have such a great net around us. It lets me spend my energy on the things are important to me. And my family is at the heart of it all.
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