“I’m not going to betray my heart and sacrifice myself on the fires of your expectation.” –C. Ara Campbell
Photo by Natalie Grono
“I’m not going to betray my heart and sacrifice myself on the fires of your expectation.” –C. Ara Campbell
Photo by Natalie Grono
I’ve had a lot of loved ones recently suffer the loss of someone they love. Whether that be a parent, child, grandparent, friend, significant other, etc. My heart breaks for them because I know this pain too well. I’ve been living with the loss of my mother the past 8 years and I wanted to share what I have learned.
Several months after my mother died I attended a grief support group. Everyone in the group had lost someone significant to their lives and it was healing to be with people who knew exactly how I was feeling and it was healing to be able to support each other in our collective grief. One particular night the Social Worker who was leading the group told us that we had to find our “new normal.”
I felt an instant wave of anger at that statement. I didn’t want a “new normal.” I wanted my old normal back. I wanted a normal that included a living mother to help me navigate life and motherhood. I wanted a normal where my kids had a relationship with both their grandmas. I wanted a normal where it didn’t feel like my heart was hemorrhaging at every moment of the day.
Eventually I realized how kind that Social Worker was when she talked about a new normal. Because I didn’t have a choice. Life was going to give me a new normal whether I wanted it or not.
I learned that my new normal was going to be like if someone cut off my right hand and I had to learn how to write and function with my left hand. It’s not easy. It doesn’t feel natural. It’s against my gene’s predetermined hand dominance. But eventually I learned how to write with it. And it was sloppy and messy at first, but over time, it got easier.
And although it’s easier now, it’s not perfect. Every happiness that has come to me since my mother died has been bittersweet. She’s never going to be here for all the births, weddings, birthdays, happy occasions, accomplishments. She’s never going to be able to be a grandma to her grandkids, four of whom she will never meet. She’s never going to call me again and recap American Idol for me while I pretend to be annoyed. I’m never going to cry to her again when someone is mean to me. She’s never going to cheer me on, root for me, or tell me how much she loves me again.
And that’s okay. It’s not fair. It’s not what I want. It’s never going to be alright. But it’s okay.
Despite the bittersweet, there has been joy. And when I do have those happy moments or we as a family have welcomed a new member or enjoyed a family gathering together, we feel her with us in Spirit. If I can’t have her here on earth, I’ll settle for guardian angel.
So my new normal has become honoring her life. I do this by living the best life I can. By being happy with what I have. By helping others as much I can. By raising grandchildren to be people she would be proud of. By making others laugh. By being kind to strangers and children. By leaving the world a better place for having lived in it.
Like she did.
It’s so much more than a hashtag. #AftonStrong is a cause close to my heart.
Afton Wallace is my second cousin on my mom’s side. Her dad, Rob, and my mom are first cousins. My grandma and her grandpa are brother and sister. Afton and I share great-grandparents. I think that’s how second cousins work.
Afton Wallace is more than just my second cousin. In the last year Afton has taught me to live more fully and love more deeply. She has taught me about courage and fortitude. She has taught me what a real Superhero looks like. She’s half my age but has taught me about the kind of person I want to be: strong, brave, fearless, positive, inspiring, formidable, optimistic, loving, generous.
Afton is a senior in High School in Mississippi. Afton was her high school’s Homecoming Queen last Fall, she was named Miss Warren Central High School, she was voted Class Favorite, was the captain of her swimming team this year, scored a 33 on the ACT (that’s the 99th percentile), earned a full-ride scholarship to BYU for this Fall, took AP classes her senior year, and is graduating with honors this month  . She is quite a smart, accomplished young woman. But the truly remarkable thing is she has done all of this while battling Stage 4 Ewing Sarcoma, a very rare childhood bone cancer that is very aggressive  .
Afton was diagnosed with Ewing Sarcoma on May 22, 2014 and was only given a few days to live. Afton had tumors on her pelvic bone, spine, liver, and kidneys. She immediately started chemotherapy and radiation and her progress far exceeded doctor’s expectations. In January of this year we thought things were starting to turn around when doctors declared her to be in remission. However, a short month later Afton relapsed with a significant tumor on her brain. In March scans showed that Afton has numerous tumors growing throughout her body. Since last May, Afton has spent over 120 days in the hospital, undergone 45 radiation treatments, and received 70 doses of chemotherapy. 
And through it all Afton has “just kept swimming,” her motto from the movie Finding Nemo. Swimming is something Afton knows well considering she has been competitively swimming since she was in grade school and was a star athlete on her swimming team. Afton’s positive attitude in the face of insurmountable odds has inspired thousands of people, including me, her older cousin. On her Facebook page, Afton Wallace #mymissionisremission, she and her parents post countless videos of Afton singing after chemo treatments and pictures of her bright, smiling face . Afton acknowledges she has her hard moments as well. “You can have breakdown moments cause everyone has breakdown moments, and sometimes you have them every day,” says Afton. “But you have to keep a smile on your face to make it through. You really do.” 
As I have watched my sweet cousin face this impossible battle over the last year I am continually humbled by her optimism, good humor, and ability to give to others during, which should be some of her darkest moments. As part of her occupational therapy, Afton has been crocheting infinity scarves and donating them to a clinic for abused women in California. She also reaches out to other cancer patients and lifts their spirits. Anyone would be justified in being angry at their situation and not want to help others and maybe sometimes Afton does feel that way, but she does not show it publicly and instead her generous spirit shines through every time.
This quote by Helen Keller is one of my very favorites. If anyone had reason to give up and wallow in the unfairness of life, it was Helen Keller. Instead she overcame all her disabilities to be a social justice warrior and an iconic and inspirational American. This quote exemplifies Afton to me. Afton has opened a new doorway for the human spirit. Before her, I never knew that a young person could be so hopeful, optimistic, brave, wise and mature beyond her years, and heroic. She has reminded me just how precious and beautiful life is. She has taught me to never take a single day for granted. Her parents, Rob and Sheri, have taught me how precious our children are and how to be a rock of strength when everything inside you is crumbling to pieces. The Wallaces have taught me what true courage looks like. They have taught me more about unconditional love, sacrifice, and faith than I could ever learn from any book. And like I said at the beginning, Afton has taught me to live more fully and to love more deeply than I ever would have before her diagnosis.
Sadly, our hearts all broke last Friday, May 8th, when Sheri made the announcement that Afton’s latest CT and PET scans showed that her latest chemotherapy was not working and her tumors have tripled in size and dramatically increased in number. There are no more standard treatment options available to Afton and her body will not be able to recover enough to participate in a clinical trial. The doctors believe that Afton has less than 3 months to live. 
I read the news when I was checking Facebook on a break and I broke down in tears. I cried for Rob and Sheri and the devastation they must be going through. I cried for Afton’s siblings, Kaylynne, Abigail, Scott, and Katie. I cried for Afton and for the life and future she deserves. I cried for Afton’s grandparents, aunts, uncles, 58 first cousins, extended family, friends, and hometown of Vicksburg, MS.
It’s not fair. It’s not fair when this happens to those who want to live the most and have the most to live for.
I thought about Afton and what I could do to help, and there’s nothing I can do except contribute to her GoFundMe page . I thought about how selfless and giving Afton has been through all of this. I remembered that she always felt better after having blood transfusions, and though I have never done it before, I made an appointment for the very next day with the Red Cross to donate my blood. I learned that my blood will help save the lives of three people. If I can’t save Afton’s life, I can at least help someone else. 
Despite the odds, Afton is not giving up and neither are the people who love her. We don’t give up. We just keep swimming and we petition the Lord constantly with prayers for continued miracles.
I can’t let myself think far enough ahead into a future that doesn’t include Afton. If and when she passes from this life, whether that’s 90 days or 90 years from now, Afton will leave a great legacy of love, courage, optimism, enthusiasm for life, endurance, strength, grace, and success.
Afton your life has been a success because you made the lives of those who love you better by simply being you.
There are no words in the English language adequate enough to express my deep love and gratitude to Afton and her family. They are a miracle, and through the atonement of Jesus Christ, no matter what happens, we will all be together forever. There is no mutant cell that could ever take that away. Because of His grace, cancer will never win. It can destroy a physical body, but it cannot harm an eternal soul.
Don’t give up. Never quit. Just keep swimming. Just keep smiling. Just keep loving. Give more. Love more. Live more. Enjoy more. Seek out joy. Look for miracles. Never let go.
Those are the lessons I’ve learned from my dear, sweet, younger cousin.
“…unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that He might be glorified.” Isaiah 61:3
This article is posted with the gracious permission of the Wallace family.
The article was featured on The Huffington Post where Afton herself picked the beautiful pictures that were featured. RIP Beautiful girl.
 MS NEWS NOW | WLBT, WDBD (http://www.msnewsnow.com/story/28949637/afton-wallace-her-fight-for-life)
 The Vicksburg Post (http://www.vicksburgpost.com/2015/05/03/just-keep-swimming/)
 Afton Wallace #mymissionisremission (https://www.facebook.com/aftonwallacemymissionisremission?fref=ts)
 Quote by Ralph Waldo Emerson
Mother’s Day is this Sunday and we will collectively celebrate the women who either gave us life or raised us. We will make phone calls, or take them out to lunch, send them flowers, buy them meaningful cards, and express gratitude for all the sacrifices they made for us.
Except some of us won’t be doing any of those things on Sunday for a variety of reasons. There is a small club of us for whom Mother’s Day is difficult. This post is for us.
Mother’s Day is difficult for those of us who have lost our mothers, either through death, estrangement, or other reasons. It’s difficult for those who deal with infertility and Mother’s Day is just a reminder of what we don’t have. It’s difficult for those who have lost children and it’s a day that reminds us of what we used to have.
I remember the first Mother’s Day after my mom died. I was 8 months pregnant and completely dreading that Sunday. We all met up at the cemetery to see my mom’s headstone for the first time. She died six months previously and the ground was too hard to install it earlier. I think we went out to lunch afterwards. I can’t remember. Grief has a way of erasing memories. Self-preservation at it’s finest. The next month I gave birth to a beautiful baby boy and my mom wasn’t there to hold my hand this time.
The advertising industry doesn’t realize how hard this holiday is for some of us. They don’t realize how triggering it is to see the umpteenth commercial about the perfect card/flowers/fruit bouquet you should send your mother. They don’t realize how triggering it is for women who are experiencing infertility, or are childless due to life circumstances, to see commercial after commercial reminding them that they’re not a mother when they desperately want to be. And unfortunately some bloggers are devoid of empathy and compassion and like to shame those of us who have deep-seated hurt around this day.
That is why we need to be patient with our tender little hearts. We need to do some self-care and allow ourselves to feel what we feel, without guilt or shame. (For self-care I like to take baths and read, exercise, watch silly movies with my kids, and make snarky jokes). If Mother’s Day is difficult for you for any reason your feelings are valid. Don’t allow anyone to make you feel bad for feeling bad. Give yourself the same empathy and compassion you would give your best friend. Celebrate, or don’t, however you choose this day. For this one day, it is all about you and your tender heart. Protect it.
I acknowledge that I am incredibly lucky. I have four children whom I love and who love me. They keep talking about the things they are making at school for me or the present they all want to buy me to celebrate me on Sunday. They are so sweet. What I want to do on Mother’s Day is gather them around me and embrace each one of them and tell them just how lucky I am to be their mother. They are such good kids with such big hearts. I also have a wonderful mother-in-law, who has always treated me like one of her own kids and is just about the best grandma in the whole world. I have no problem honoring her on Sunday and thanking her for all the sacrifices she has made for her family. All the things she has given to us to help us make our lives better. All the times she has cheered us on and picked us up when we’ve fallen. Even when we’re ungrateful or don’t acknowledge just how special she is. Sometimes angels masquerade as people, and she is one of them.
However, Mother’s Day will always be bittersweet to me. No matter how thankful I am to be a mother and to have had a wonderful mother and mother-in-law, there is a part of my heart that will always be missing. It’s in the shape of my Mama Sue. On this day I will wear the necklace I gave her on the very last Mother’s Day we celebrated with her when none of us knew she was sick. I will lay flowers on her headstone and I will thank my God above that one of the bravest, funniest, most loving people I’ve ever known gave birth to me. But I will also mourn because I wish she were here for me to tell her why I’m so grateful I was lucky enough to be her daughter. Alas…alas…
Happy Mother’s Day, to all of us, the motherless, the neglected, the infertile, the childless, the discarded, the abandoned, the weary, the sad. This day is for you too.
This post was featured on The Huffington Post
The older I get the more I realize how much I’m like my dad. From overly critiquing the logistics of car commercials or only wanting to eat popcorn for dinner, I’m more like my dad than I ever thought. I was a mama’s girl growing up and thought every attribute of my personhood was a direct result of her influence. Now that she has been gone for a little over six years, I’m starting to recognize how very much like my father I am as well. My dad has dissimilar life philosophies than my mom did. They say opposites attract, and in their case, this is very true. I believe I benefited from having two very different people with different beliefs about life raise me and influence who I would become one day. These are the life lessons I learned from my dad:
1. Cross that bridge when you come to it
My mother was a world-class champion in worrying. She could come up with any disastrous scenario of any situation and worry about every minute detail until she was sick to her stomach. My dad has always been decidedly more laid-back. I remember many times worrying about something completely out of my control and him reminding me not to worry about it until it actually happened. When I was little I had no idea what the idiom “we’ll cross that bridge when we come to it” actually meant, but as I grew I began to appreciate my dad’s way of handling the unknown. As an adult I have really benefited from not being riddled with the anxiety constant worrying brings and appreciate my dad’s approach to life. Why worry about something that may never happen?
2. No good deed goes unpunished
I’ve heard my dad say on more than one occasion that no good deed goes unpunished. I’ve come to realize over the years that this means that even when I have good intentions and do something good for someone else, that doesn’t mean that my actions will always be appreciated. Sometimes they are even unwelcome. I used to say this mantra a lot when I worked in my first job as a social worker. I would work my tail off for the benefit of a client and not only have it not appreciated, but criticized. I had to realize that I’m not always going to get the praise and adulation I expect when performing “good deeds,” and yet I still need to do and be good.
3. Don’t always work up to your full potential
My mom had a very strong work ethic. She believed if someone is paying you, you work as hard and adeptly as you can to accomplish the task. While I admire this, I noticed that when she came home from work she was so exhausted she had nothing left to give to her family. When I was older and able to articulate my feelings into words, I told her she gave so much of herself at the office that she had nothing left for her children at the end of the day. I know she listened and heard me, but the work ethic that she had learned from her parents won out every day. When I got my first job my parents gave me very different sets of advice. My mom told me to work as hard as I could and to do my very best every day. My dad told me not to work up to my full potential because then my employers would always expect me to work that hard and that was a quick way to work myself to death. I could still adequately perform my job duties without giving myself ulcers and a heart attack by the age of 30. More often than not I have stuck to my dad’s philosophy of not working up to my full potential. That is, until I had my first social work job and I loved it and was so dedicated to my clients. I noticed after a few years I had missed out on things like trick-or-treating with my children, my daughter’s first piano recital, and my son’s birthday party because I was working. I would come home so exhausted I was literally too tired to make a sandwich for dinner, let alone be a good parent. I know the job I was doing was important, but my family is more important to me.
4. There are jerks every where you go.
I remember complaining to my dad once about a jerk I worked with and how I couldn’t wait to get a new job and be away from this jerk. My dad just chuckled and said that he has encountered a jerk, or several jerks, at every job he’s ever been at. There were jerks in the Army with him, there are jerks at church, there are jerks at every job, and there are jerks in your neighborhood. The only person I can control is myself and how I react to the jerks. I’ve had to learn to deal with the jerks and get on with my life, my job, my church work, and my job assignment. There are always going to be jerks. What’s important is that I’m not one of them.
5. Appreciate Nature
My dad loves nature. If you are Facebook friends with him you know that he likes to re-post pictures taken at various National Parks. Growing up in Utah, I had an abundance of nature to appreciate just off my front steps. My parents were always taking us for drives in the mountains and pointing out the beautiful views and the gorgeous changing of the leaves in Autumn. Whenever family from Back East came to visit he would take them to Antelope Island, in the middle of the Great Salt Lake, and show off the spectacular scenery. My dad loves to go camping and would accompany me and my friends on a church youth group trip up to Jackson Hole every summer for some river rafting. My mom stayed home and read her book. I’ve hiked with him in Zions and Arches National Park. We’ve enjoyed the sunrise over the ocean in Florida together. And whenever I leave the state of Utah and return, I see the beautiful Rockies rising in the distance and my heart thrills. I believe this is because my dad taught me to appreciate the beauty of the nature around me.
6. Stay true to your own conscience
One of the greatest things I admire about my dad is that when he was drafted into Vietnam he went as a conscientious objector. Because of his religion he is a pacifist and does not believe in taking a life for any reason. In the Army he was trained as a Medic and took care of POWs instead of taking more lives. I am proud that he was able to stay true to his religion and fulfill his duty as a citizen at the same time. My dad once told me that I always had a deep sense of what was right and wrong and was fair and what was unjust. I believe I got this from him. As an adult I refuse to be a party to things that offend my conscience, even if my culture, my religion, or my community tell me that what I believe is wrong.
7. When it’s important to your kids, you show up
I can’t say that my dad loves choir concerts, or piano recitals, or school plays, but he showed up to every one his kids were in. Even when “the game” was on. I can’t even imagine how many excruciatingly boring performances my dad sat through over the years but I never heard him complain (not to me at least). My dad and I are different religions and he often attends religious rituals that he doesn’t necessarily understand and can’t participate in. That hasn’t stopped him from supporting me, my siblings, or his grandchildren in these rituals. He once told me that he may not understand something, but if it’s important to one of his kids, it’s important to him.
8. Unconditional Love
The greatest life lesson my dad taught me is the hardest one to write about. When I was in 3rd grade my mom was diagnosed with a pre-cancerous condition in her breasts. This was the late 1980s and there weren’t a lot of good options. My parents decided together that my mother would have a bilateral mastectomy. It was very scary to me as an 8 year old to have words like “cancer” and “surgery” bandied about. It was also scary to see my mom’s body forever altered. Her breasts were never rebuilt and she lived the rest of her life with scars across her chest. I saw the unconditional love my dad had for my mother during this time. She couldn’t lift her arms up very far and couldn’t do a lot of things for herself. He bathed her, helped her on the toilet, gave her enemas when the pain pills caused her constipation, affirmed to her that he still loved her and was attracted to her even though her body had changed, and cheered on her recovery in his own quiet and supportive way. This had a lasting impact on me as I grew. I knew that marriage wasn’t a relationship to take lightly and sometimes when it comes to “for better or for worse” the worse is really much worse than you ever anticipated. Twenty years after my mom’s mastectomy, my parents were dealt an even more devastating blow. My mom was diagnosed with stage IV inoperable pancreatic cancer. Yet again, I watched my dad take care of my mom in a way that left her with the dignity to make her own choices. He protected her wishes. He supported her when she decided to do chemo, even though it caused more pain and didn’t prolong her life. He helped her make the decision to end treatment and opt for hospice care. And he was the person in the room with her when she died. Through their 36 year long marriage, through the fights and disagreements, through the births of three children, through illnesses, and mortgage payments, and choir performances, and summer camps, and finally an empty nest, my dad remained loyal to my mother. He taught me more about unconditional love through his example as a husband to my mother than he ever could with any words he’d ever speak. My dad taught me how to be a committed spouse and I only hope that I can show my husband the kind of unconditional love my dad taught me through the way he lives his life.
Happy Father’s Day, Dadoo! I love you.
Cross-posted at The Huffington Post
Brace yourselves for a rant.
I’m really tired of being accused of being a lazy mother because I medicate my children who have ADHD. I’m really tired of being told I just don’t want to deal with them, so I choose to drug them.
I’m sorry, but no. Attention Deficit Hyperactivity Disorder is a real thing and it’s not always solved with some extra playtime. It is a real psychiatric disorder of the neutrodevelopmental type and is recognized by the DSM-IV. Two of my children have been tested and observed extensively and they are in the clinical range. Their behavior and symptoms are not typical for their age group. Their parents, teachers, and doctor didn’t make up this disorder just because we like drugging children into mindless drooling drones.
Trust me, I wasn’t real thrilled with the thought of my daughter going on medication when she was first diagnosed with ADHD 7 years ago. I was in deep denial. I did not see the behaviors her teacher saw because, her being my first child, her behaviors were normal to me. I thought this was how all six year olds acted. I thought all six year olds could only do their homework for a few minutes at a time before they needed to go run around. I thought all six year olds stole items with little or no value because of impulse control problems. I thought all six year olds lost interest in an activity within minutes. I thought all six year olds had trouble concentrating, daydreamed, were excessively concerned with what others were doing, and had trouble listening and remembering what they were told. I excused her behavior with saying her beloved grandmother just died and so this is why she was distracted in school. I excused it by saying I was pregnant and there many changes in the household with a new baby coming and this is why she acted antsy. It wasn’t until her teacher told me that she missed 80% of what went on in class each day before I got out of my denial and allowed her to be tested for ADHD. And it was even harder to accept that my child was two standard deviations from the typical behavior of six year olds.
Being committed and concerned parents, her father and I immediately scheduled an appointment with her pediatrician. She had us do additional testing just to make sure. That test also came back with her showing signs in the clinical range. She prescribed her a very low dose of an ADHD medicine and waited to see results. We barely saw any and I doubted that my child had what everyone said she had. Luckily for me at the time I worked with a lot of therapists and child psychologists and I sought their opinions. They pointed me toward a different medication, that is not a stimulant and not addictive, to see if that worked better. She was seven years old and deep into 2nd grade before she finally got on the right medication and her entire world (and our entire world) changed. I’m sure her 2nd grade teacher can tell you the exact day she started medication because she went from a child who literally could not sit down in her chair, so her teacher put her in a spot in the classroom where she could stand beside her desk, to a child her could sit for longer periods of time and concentrate.
Do you know what ADHD did to my child in the meantime before we got the right medication figured out? It destroyed her self-esteem. Because she could not focus and concentrate she was way behind her peers in their knowledge. She could barely read a few sight words at the end of 1st grade. She thought she was dumb. Do you know what it’s like to have your 7 year old daughter feel so dumb and worthless she threatens to kill herself? I was lucky I knew therapists and I was able to get her treatment with therapists who taught her behavioral techniques that would help her concentrate and who also helped build her self-esteem. We were lucky to move to a school that had a phenomenal special education teacher who fought for her, with us, to get her into some resource classes so she could catch up with the kids in her grade.
And finally in 7th grade my precious daughter is finally on grade level for reading and I consider it a miracle. I thank my God above that there is a medication out there that helps her focus and concentrate. She is old enough to know the difference between the days she doesn’t take the medication and she prefers to take it because she knows school is easier to deal with when she does. And she is thriving in Junior High in a way I never dreamed possible. She has wonderful grades and has even been on the Honor Roll. She has taken great strides to become more independent and responsible and she is doing so well. Me withholding medication from my daughter for a real psychiatric disorder would be as dumb as my parents withholding asthma medication from me as a child just because they didn’t want to “over medicate their child.” I don’t think the strides she has made would have been possible without the help of her medication.
I don’t know why we as a society treat illnesses of the brain as imaginary and it’s shameful to treat them when we don’t do that for any other part of the body. If my child had diabetes there is no question that she would be given insulin. If she had asthma like me, there is no way I would deprive her of a rescue inhaler. All my wishing away her ADHD didn’t work and the strides she has made in the last 7 years are because her medication suppresses her ADHD symptoms and allows her to learn.
I’m not saying every child with ADHD needs to be medicated. I’m just say my kids do and I refuse to be ashamed because of it. So, those of you who think you know better than me, the woman who gave birth to my daughter and my son with ADHD; who think they know more than their father who has devoted his life to raising these children; who think you know better than the doctor who has treated them since the first days of their lives; who think you know better than the child psychologists I took my daughter to to learn behavioral techniques to help her cope, I’m here to say, you think you know better BUT YOU DON’T. When it comes to my children and their medication this is a MYOB issue. I have dealt with this for almost a decade. I have spent countless hours reading research and books. I have talked to many therapists. And you? You read ONE article and you think you know more than me about ADHD? Laughable. Keep your uniformed opinions to yourself.
To learn what it’s like to be in the mind of a person with ADHD, read this.