My mom was my best friend,
My advocate, my rock.
She loved us kids through our faults,
In her children, she took stock.
Then she got the call
That the cancer was back,
With tumors in her lungs and brain.
No treatment could save her,
So it began...the dreaded waiting game.
Nine months after being diagnosed,
We said goodbye to a living Saint.
A devoted wife, loving mom & grandma,
A talented Artist, man oh man,
Could she paint!
It’s been 10 years since
Cancer took away my mom.
And if this time has taught me anything
It is that you ALWAYS need your mom.
No matter how old you are.
No matter how much time has passed.
You need her on the happy and hard days
You need her in your future,
Present and past.
How I wish she could have met my babes.
You see, I became a mom after she died.
I can just picture her,
Holding her namesake,
Squeezing my littles tight,
Beaming with pride.
This makes me cry.
The thing about losing a parent...
Unlike other losses, time doesn’t heal.
You are simply forced to deal.
I miss my mom today
Just as much as I did 10 years ago.
Life doesn’t get easier,
You just get stronger
Is how I’ve learned to cope.
So I love my kids through their faults,
I play the role of friend and advocate.
Sharing stories of their incredible
Grandma, her compassion, her strength
And immeasurable wit.
I’d like to think I’m making her proud.
But I’ll never know for sure…
Until I see her again on the
Other side of that majestic cloud.
Love you forever Mom
Lucy Riles, Life of Mom Founder
The term “Heart Mom” refers to a mother of a child with a CHD (congenital heart defect) Children born with CHDs are as common as 1 in 100 births. Some are diagnosed in utero (which was the case for me) or not until after birth. The journey for families affected by CHDs is an emotional one. You never quite know what’s waiting for you at the next appointment…
thankfully today, my brave little heart warrior received a clean bill of health and cleared for another year🙏 This is not always the case for heart families and these appointments may not always have clear EKG and echocardiogram results…
I do not for one second take for granted days like today, a clean bill of health, a strong beating heart. After all, I am a Heart Mom who has watched as my daughter flatlined…I have watched my daughter’s beating heart as her chest lay open covered by a transparent type of tape…I have felt her life inside of me❤️
9 years later and I am still brought right back to that time. The girl in this photo is the strongest person I know!
I was compensated by Med-IQ through educational grants from AbbVie, Astellas, and Genentech to write about managing distress for cancer patients and their caregivers. All opinions are my own.
In June 2008, my mom was diagnosed with stage IV metastatic melanoma.
In July 2008, my mom’s youngest child, her 12th child, was married. That child was me.
In March 2009, cancer took my mom.
In June 2009, I found out I was pregnant for the first time…my due date was my mom’s birthday.
It’s a great debate in my family whether or not my mom knew her cancer was terminal before my wedding…but let me ask you this: if your youngest child was weeks away from getting married, would you announce you’re dying of cancer?
Would you want your child’s wedding day to be a joyous one or feel more like a living funeral for the Mother-of-the-Bride?
Now that I’m a mom myself, I would have handled it the same way. I’m fairly certain she knew her fate in June, but it wasn’t until early August when my parents shared the news with my siblings that she had less than a year to live. They intentionally left me out. I was on my honeymoon. My mom’s plan was not to tell me…she wanted to “protect” me in some way. As the baby of the family, shielding me from all the family drama was a common move. My mom didn’t want me to worry, she didn’t want this newlywed stage to be tainted.
Well I ended up finding out about some “secret family meeting” that took place while I was away. In a big family like ours, secrets rarely stay secrets. I confronted my mom, sobbing while I begged “What is going on? Stop protecting me. No more sugar-coating. I need you to be honest with me.”
After that, my mom told me. “Lucy, I have less than a year to live.”
There I was, begging for the truth, but as soon as she uttered those words I wanted to go back to living in denial. Deep down, I knew back in June this was it. This cancer was going to kill her.
Every month for the next 9 months I flew home from LA to Chicago to spend time with my mom. And every month I said goodbye to my mom as if it was our last goodbye.
I was sad ALL the time. I was a new bride with no joy. How could I have joy? My mom, my best friend, my biggest advocate was dying. Every time my phone rang, I panicked “Was this it? What did this test result show? How much time does the doctor think she has?” Living so far away gave me tremendous anxiety. “What if I need to get home? What if it’s too late? What if I don’t get to say goodbye?”
These thoughts consumed my life and sabotaged my first year of marriage. It’s safe to say I was not the person my husband signed up to marry…far from it.
This was exactly what my mom was trying to “protect” me from. And now that I’m a mom, I’d do just about everything to protect and keep my children happy.
(Mom, I get it now. You were right…you were always right.)
It was only recently that I realized there’s an actual term for what I was feeling at that time. It’s called “cancer-related distress.”
Cancer-related distress is any unpleasant feeling or emotion (sadness, hopeless, powerless, uncertain, guilty, etc.) that affects a patient or caregiver’s quality of life, how they cope with cancer and how they interact with others. It can be mental, physical, social or spiritual suffering. This type of distress can actually make it harder to cope with having cancer, its symptoms or its treatments.
If you think you or someone you love has “cancer-related distress,” here is a list of symptoms that the patient and/or caregiver might experience:
-sadness, fear and helplessness
-anger, feeling out of control
-questioning your faith, your purpose, the meaning of life
-pulling away from people
-concerns about illness
-concerns about your social role (i.e. mother, father, caregiver)
-poor sleep, appetite or concentration
-depression, anxiety, panic
-frequent thoughts of illness and death
It’s been almost 10 years since my mom passed away to cancer, yet I can relate to almost every one of these symptoms during that time. I battled with depression and anxiety issues for years. I lost so much weight from the stress that it actually triggered me to develop hyperthyroidism. To date, I’m still treated for thyroid and anxiety issues.
But something significant has changed. One thing has returned…and that is JOY. The girl that my husband signed up to marry has returned. The fun mom I hoped and dreamed to be for my kids is alive and well. Cancer may have taken my mom but I refuse to let it take my joy!
Here are some tips to taking back your joy!
This applies to cancer patients, caregivers, family and loved ones who have been affected by this horrible disease.
Do the things that bring you joy. Say you love spending time with your grandchildren, maybe you like taking your daughter to the theatre or taking your dog to the beach… Whatever brings you joy, do it as often as you can.
Ask yourself, what are you hoping for? For my mom, she knew being cured wasn’t an option so she took the least invasive, most comfortable treatment plan. Even towards the end when she was in hospice, it was her hope to be at home. So each of her 12 children and spouses took turns caring for her on different days. Since I was the only one out of state, I would come home every other weekend for those final 3 months of her life and care for my mom. It was her hope and an honor for all of us. She taught us grace and beauty and dignity even in her death.
What are you worried about? (What is causing the distress?) Whatever those worries are, acknowledge them and then take action…make a plan to try to minimize the distress in your life as much as possible. I wish I had done this. I did not take care of myself physically and emotionally. I wish I had made that a priority.
Get out! Go to the movies, schedule a lunch date with a friend, join a book club…whatever you can do to get out of your head (and home) to forget about cancer for a few hours.
Update everyone all at once! Your family and friends love you, so they will want to know how you are doing…but that can be very straining to emotionally “go there” time and time again. If you have ongoing health updates to report to loved ones, send it out in a group email or post. This helps keep them informed and minimizes the stress on the patient and caregivers.
“Caregivers, put your oxygen mask on first.” Basically, you are no good to the patient if you don’t take care of yourself. Go get your doctor check-ups, workout, schedule a spa day or an appointment with a therapist so you too have an emotional outlet. Self-care is so important!
These tips were provided by Lillie D. Shockney, RN, BS, MAS, ONN-CG, University Distinguished Service Professor and Professor of Surgery, Johns Hopkins University School of Medicine.
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Med-IQ is an accredited medical education company that provides exceptional educational experience for physicians, nurses, pharmacists and other healthcare professionals. I decided to work with Med-IQ because I want patients/caregivers/mothers/daughters to be aware of the signs of distress and anxiety. I want them to know they are not alone. No one should suffer in silence. I hope my story can help other families be more proactive in curbing cancer-related distress and finding joy whenever possible.
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This is how she always sleeps, chiseled into my neckline and chest ever since she was a newborn and still does 3 years later. With the right position in a dimly lit room with a fan going, she’s sound asleep in less than 4 minutes.
I’ve officially mastered the nap.
Now bedtime is another story… my husband has been pushing to eliminate her naps… but he’s also at work in the late afternoon when she rages from exhaustion if she doesn’t nap. Easy for him to say!
But in all seriousness, she’s my last… my baby. I’m not ready to give up those quiet afternoon cuddles, the calm before the “after school” storm.
It’s just us. She and I… and I’m just going to savor these MOMents for a little while longer. She and I… my rainbow baby of hope🌈
I’ve always felt this statement to be true… that no matter, “YOU WILL ALWAYS NEED YOUR MOM!”
This past weekend validated just that as I flew back home to my beloved Chicago and Indiana to spend some quality time with two of my closest, oldest and dearest friends;
While one celebrated one of the happiest days of her life, her wedding❤️
The other one is going through one of the scariest, most heartbreaking days of her life as she cares for her very ill child💔
I watched a heartsick mom devote every waking minute nurturing and caring for her fragile baby while her mom shed tears of pain watching her child and grandchild go through so much… Missing and wishing for her own mom for support.
Then I watched an excited bride-to-be shed tears of pure joy as she walked into the arms of her new husband while her mom shed tears of pride and nostalgia as she sat next to her own beaming mom.
What a roller coaster life is…
I literally spent the happiest and saddest MOMents in my best friend’s lives in the span of 4 days… and one very similar, very present universal theme surrounded them both… a mother’s love❤️
(This photo was taken 37-ish years ago of me and my mom who I miss every single day💙)
Life of Grandpa is… bear hugs and knuckle head rubs and afternoon naps and early dinners and jolly chuckles and watching slices of your own childhood’s admiration for this man play out through the admiring eyes of your children❤️
So very grateful and blessed to have this man as my dad🙏
Self Care… coming to moms worldwide in 2019!
It is my humble opinion that self care makes us better moms to our kids. Whether it’s a walk to your local cafe or a spa day or a workout or a nap or a vacation or a check-up or a good book or takeout or time to make out😉
Care for yourself!
As moms, we would want that for our children when they are adults… so let’s stop doing everything for everyone else without doing anything nice for yourself!
Our mental health is crucial to maintain a nurturing childhood for our littles. They will remember mom cared them but also cared for herself and hence do the same❤️
I have fond memories of my mom dancing around our basement, blasting her 45s on our jukebox as she created whatever art installation she was working on at the time💙 Art was her outlet to escape the stresses of raising 12 kids. A place to create something that was uniquely hers🙌
It wasn’t until I became a mom myself that I came to appreciate what she was doing in the basement for all those years… She was a better, more fulfilled wife because she nurtured her own creative passions!
My mom was a sensational role model, ahead of her time in so many ways, teaching her daughters you don’t have to sacrifice your dreams and passions in order to be a mom… you can do both!!
It’s a pretty simple thought.
Each one of us makes choices in life based on our own personal experiences.
I know this to be especially true…
Holding my stillborn child in the palm of my hand, watching my medically fragile child flatline in front of me 3 times and cuddling in bed with my mom dying of cancer has deeply impacted and changed who I am forever.
I wouldn’t expect you to understand me and the choices I make, just as much as I wouldn’t assume to know life’s burdens you’ve had to carry.
The way we see the world doesn’t have to be the same, it also doesn’t have to make one right or one wrong.
So I have a challenge for you. Before making assumptions and lumping people into some preconceived stereotype, stop and think perhaps there’s a more meaningful reason they see a SIX where you see a NINE…
Approach people with this perspective and I promise you will gain a deeper sense of understanding and compassion. I’ve always felt that we share far more in common than that which divides us.
Life of Mom Founder
Mom’s love is with you as you start back at school,
Once you walk off, mommy might cry like a fool.
Hugs might be extended when it’s time for goodbye,
But I know to let go, it’s time for you to fly.
Mom’s love is with you when your teacher asks
“Please stand up and say your name.”
Remember, YOU ARE WONDERFUL, mom loves you,
Be proud of who you are, no shame.
Mom’s love is with you when you hang up your backpack,
When you take a sip of water or sit down for a snack.
And if you need a little reminder of my constant love for you,
Here’s a message from mom to say I’m thinking about you too.
Mom’s love is with you when you’re learning math,
During writing, reading and spelling words too.
When you’re running laps in P.E.
And painting art green and blue.
Mom’s love is with you when it’s time to eat lunch,
You may eat your snacks first, mom has a hunch.
But that’s okay,
You are free to be you!
Mom’s love is with you when you’re meeting someone new
Some kids may not be very nice and some may adore you,
But be kind to everyone anyways is the key thing to do,
You are already loved by so many… if only you knew.
Mom’s love is with you at pick-up,
The day may have had a few hiccups,
But you did it!
We did it!
We made it through!
Mom’s love is with you back home when you play,
Drawing, building, games is how we spend the rest of the day.
No homework for now, no sir, no way.
Time to unwind from your big, busy day.
Mom’s Love is with you as you fall asleep tonight,
Feeling pride for my child; their will and their might.
There may have been tears shed, perhaps just from me,
But we made it through the first day of school… yippee!
By Lucy Riles
Life of Mom Founder
EDITOR’S NOTE: This is a sponsored campaign on behalf of Stuck on You, however the content and opinions are all mine. All products pictured here are Stuck on You. For more information on Stuck on You, check them out HERE, on Facebook, Twitter and Instagram.