Theme: Work
I’ve been working full-time since the summer I graduated from college, about 100 years ago. I worked through two cross-country moves. I worked through years of fertility treatments and three international adoptions. I took maternity leave after the arrival of each of my children, but I promptly returned to work a few months later every time. I kept working when my daughter Dalia was diagnosed with MERRF Syndrome and worked still as her disease progressed over a dozen years. Fantasies about winning the lottery aside, I never thought about stopping.
To be clear, not working was never a viable option for me financially. But fantasies aside, working would have been a non-negotiable for me anyway, just as going to school was when I was a child.
So when one of Dalia’s nurses wrote me a letter challenging my decision to work in the face of Dalia’s disease, I was stunned.
“Dalia’s needs require your full attention. In my thirty years of nursing, I’ve never seen a child with needs as complex as Dala’s where a family member isn’t present at all times. When you’re with Dalia, if you’re thinking about work, you are risking Dalia’s safety. I tell you this because I think if you keep going this way, it’s only a matter of time before something catastrophic happens.”
My reaction to the letter was threefold.
- Why did she send this letter only to me and not my husband, too, even though I was the primary breadwinner and he was a better caregiver for our daughter?
- Talk about a sucker punch. I was gutted by her nerve and explicit judgment of one of my most personal decisions.
- Was she right?
But I didn’t perseverate for long on whether there was validity in her judgment because I knew that I was going to keep working, and that doing so didn’t just benefit me, it was important for the rest of my family, too.
Money, of course, is the obvious reason most of us who work do so. But suppose we take that out of the equation. When I thought about the nurse’s letter, I realized that even if we could make ends meet on one salary, I’d keep working outside the home.
If you’re like me, and especially if you aren’t, you might wonder why we’d keep working while caring for a medically complex child.
We work because while the illness defines so much about our lives, it doesn’t define our children, or ourselves. Soon after Dalia’s diagnosis, it became clear that our lives would never be the same. The disease changed us logistically, spiritually, physically, and emotionally. Yet I knew that the disease wasn’t the most important thing about who Dalia was as a human being…it didn’t even make the top-ten list. And if that was true for Dalia, didn’t it need to be true for her siblings and for my husband and me, too? Working on the other hand, was indeed core to my identity.
That became a model for my other children, too. It was important for all of my kids to see that our lives could go on in some semblance of a normal fashion. I wanted Dalia’s siblings to go to school and sports and parties and not feel guilty about it. Seeing me do things outside the home helped them feel okay about doing things that were important to them.
Perhaps surprisingly, working also made me a better caregiver. Caregiving is the most intense, important, and exhausting job I’ve ever had – by far. Getting a break allowed me to be more present when I was with Dalia. Unlike most other jobs, there’s no room for burnout in high-stakes caregiving. Going to another job some of the time makes us more present when we’re doing the work that matters most.
There’s also the inherent community we get from work. Having a child with a serious illness is incredibly isolating. Friends and family simply can’t relate to what it means to live on the precipice. It can feel like we’re living in a universe with a different language and a whole set of traditions that others don’t understand. The workplace is a culture of its own. By definition we have something in common with our colleagues and that becomes more precious when the rest of our lives feel so off kilter.
Most important, we work to remember who we were before the disease and to remember who we want to be after. It may be hard to recall life pre-diagnosis and impossible to imagine what life will look like in the future, but work can be a throughline from who we were to who we will become.
In the end, there are countless reasons we may choose to keep working and countless reasons we might choose not to as well. Just like with everything else we experience as medical caregivers, there’s rarely a clear right or wrong or “one size fits all” answer.
Theme: Work
Caring for a child with a serious medical condition is extremely demanding. If you have other children to also care for, and/or a career or job outside of your home, you may encounter financial, logistical and emotional conflicts that cause you to constantly reevaluate your priorities and juggle feelings of guilt, obligation, responsibility. Work also touches upon one’s sense of personal identity and self-actualization.
This event explored the many challenges and rewards that parents find as they consider their options and adjust accordingly.
Theme: Work
Everything seemed to be going according to plan. I had worked tirelessly to become a mom, doctor, and Army officer – the culmination of my childhood dreams. However, just like a sudden crash in the stock market, my world came tumbling down when my daughter was diagnosed with neuroblastoma, a type of pediatric cancer. The fear, uncertainty and despair that consumed me during that time were unlike anything I had ever experienced before. I successfully navigated the challenges of surgery, chemotherapy, NG tubes, and central lines with my daughter and thought I could put the nightmare behind me. Life, though, can be unpredictable and volatile. Years later, I found myself standing in a small school bathroom, surrounded by medical supplies I had taken from my pediatric clinic. In this moment, my world once again came tumbling down when I became the doctor who diagnosed my 12-year-old daughter with Type 1 diabetes. Overwhelm, fear and despair returned and replaced the pride, excitement, and hope that had been present after my daughter beat her cancer diagnosis.
Through my experience as a physician and mom, I know it is not uncommon to feel overwhelmed parenting a chronically ill child. The constant demands and challenges of caring for a sick child can leave you feeling exhausted, stressed and emotionally drained. However, it is important – and I believe helpful – to understand that overwhelm is a natural reaction to a challenging situation. By recognizing the types of thoughts that create overwhelm and developing strategies to manage them, you can better navigate this difficult journey.
“All or Nothing” Thoughts
One of the types of thoughts that can create overwhelm is “all or nothing” thinking. This type of thinking is characterized by black and white, either/or, and extreme statements. For example, “If my child isn’t getting better, then I’m a terrible parent.” This type of thinking is not only unrealistic but can also be harmful to your mental health.
One day during Kyleigh’s treatment of neuroblastoma, as I was flushing her central line, fluid immediately leaked from the wound site. Panic set in as I realized the line had become dislodged and nonfunctional. I couldn’t help but think that this was a major setback and a sign of my failure as a parent. My mind raced with all-or-nothing thoughts, like “If I can’t even handle flushing a central line, how can I possibly take care of my child’s chronic illness?” I felt overwhelmed and defeated, like there was no middle ground between success and failure. It took me some time to realize that this kind of thinking was neither productive nor true. I learned that it’s okay to make mistakes and that setbacks are a natural part of the journey in managing a chronic illness. By letting go of my “all or nothing” thinking and embracing the process, I was able to be more present for Kyleigh and provide her with the best care possible. I was also able to have more grace for myself.
Suggestion:
Mindfulness or pausing to think about your thinking – can help you become aware of your thoughts and emotions, allowing you to recognize when you’re engaging in “all or nothing” thinking. Once you’re aware of this type of thinking, you can challenge these thoughts and find more balanced and realistic alternatives. For example, instead of thinking “If my child isn’t getting better, then I’m a terrible parent,” you could reframe this thought to “My child’s health is not solely dependent on my parenting, and I can still be a good parent even if they are struggling with their health.” By practicing mindfulness, you can break the cycle of “all or nothing” thinking and reduce feelings of overwhelm and anxiety.
“Should” Thoughts
Another type of thought that can create overwhelm is “should” thinking. This type of thinking involves placing unrealistic expectations on yourself and others. For example, “I should be able to handle everything on my own.”, “I should always be strong for my child.”, or “I should never show weakness.” These types of thoughts can lead to feelings of guilt, shame, and inadequacy.
“I should be able to handle a chemo kid and a toddler,” was a thought that swirled in my head and left me expecting I could be a superhuman parent. When Kyleigh was diagnosed with neuroblastoma as an infant, I juggled chemotherapy appointments, hospital stays, and taking care of my toddler. I believed that as a mother, I should be able to handle everything on my own. But the reality was that it was a difficult and overwhelming time. I was exhausted and constantly on edge, feeling guilty that I wasn’t doing enough for either of my children.
I realized the pressure I was putting on myself was unrealistic. I was placing too much emphasis on what I thought I “should” be doing and not enough on what was practical and manageable. I started to reframe my thoughts and use language that was more compassionate towards myself, like “I would like to handle everything on my own, but it’s okay to ask for help when I need it.”
By changing my mindset, I was able to let go of the guilt and shame that came with “should” thinking. I learned to prioritize self-care and ask for help when I needed it. This allowed me to be a more present and effective caregiver for both of my children.
Suggestion:
“Should” thoughts can be reframed and this would set more realistic expectations. Instead of using the word “should,” try using words like “could” or “would like to” to express your desires or preferences. This can help you acknowledge that you have a choice in how you approach situations and that it’s okay if things don’t always go as planned. Additionally, it can be helpful to set more realistic expectations for yourself and others by considering factors such as time constraints, available resources, and individual abilities. By reframing your language and setting more realistic expectations, you can increase your ability to cope with challenging situations.
“People Pleasing” Thoughts
“People pleasing” thoughts involve putting the needs of others before your own. As a parent, it is natural to want to do everything you can to help your sick child. However, this can lead to neglecting your own needs and well-being. For example, “I need to stay up all night to care for my child, even though I am exhausted and need rest.” or “I can’t take a break because my child needs me.” These types of thoughts can lead to burnout and feelings of resentment.
As a parent, I was overwhelmed by Kyleigh’s nighttime feeds that required the NG tube. This came from the idea that Kyleigh’s physicians thought this daily ritual was something easy to do. It was overwhelming because these physicians were my colleagues and teachers, and I did not want to disappoint them. Overwhelm was the result of thoughts of not meeting these expectations.
I found myself constantly trying to please everyone around me, even if it meant neglecting my own needs. I would push myself to stay up all night to care for Kyleigh, even when I was exhausted and needed rest. I felt guilty and ashamed when I couldn’t meet everyone’s expectations, even though they were unrealistic.
It took time for me to believe that I needed to prioritize my own well-being in order to be the best caregiver for Kyleigh. I learned to say no to requests that I couldn’t fulfill and to delegate tasks to others when possible. I also allowed myself to take breaks and seek support from friends and family when I needed it.
Suggestion:
Practicing self-compassion and setting healthy boundaries is an important solution to “people pleasing” thoughts. Practicing self-compassion can help you recognize and acknowledge your own needs and emotions, allowing you to prioritize self-care alongside your caregiving responsibilities. It’s important to remember that taking care of yourself is not selfish, and it can actually help you be more present and effective in caring for others. Additionally, setting healthy boundaries can help you manage your time and energy in a way that promotes both your well-being and that of your child. This can involve saying no to requests or activities that you don’t have the capacity for or delegating tasks to others when possible. For example, instead of thinking “I need to stay up all night to care for my child, even though I am exhausted and need rest,” you could reframe this thought to “I can take turns with someone else to care for my child so that I can get some rest and be more alert and focused when caring for them.” By practicing self-compassion and setting healthy boundaries, you can reduce burnout and feelings of resentment and promote a healthier balance between caregiving and self-care.
“Perfectionist” Thoughts
Finally, perfectionist thoughts involve setting unrealistic standards for yourself and others. For example, “I need to do everything perfectly to be a good parent.” or “I can’t make any mistakes.” These types of thoughts can lead to feelings of anxiety and stress.
As a parent, I wanted nothing more than for Kyleigh to live a long and healthy life. However, managing her Type 1 diabetes was not easy, and there were days when her blood sugars were too high or too low. On these days, I would become overwhelmed with the idea that I needed to be a perfect mom to a diabetic child, always maintaining her blood sugars within range. I would blame myself for any deviations and worry that one bad day would ruin her chances of a healthy life. This line of thinking left me feeling paralyzed and unable to take any action.
To combat these perfectionist thoughts, I embraced imperfection. I began to acknowledge that managing diabetes was not easy, and there would be days when things didn’t go as planned. I learned to treat myself with kindness and understanding, recognizing that mistakes were a natural part of the learning process. I learned to celebrate small victories and progress along the way.
Suggestion:
Self-compassion and embracing imperfection are critical to combat “perfectionist” thinking. Practicing self-compassion involves recognizing and accepting your own limitations and mistakes, and treating yourself with kindness and understanding. This can help you let go of unrealistic standards and focus on progress rather than perfection. Embracing imperfection can involve reframing mistakes as opportunities for learning and growth, rather than as failures. For example, instead of thinking “I can’t make any mistakes,” you could reframe this thought to “Making mistakes is a natural part of learning and growth, and I can use them to improve and become a better parent.” Additionally, it can be helpful to celebrate progress rather than solely focusing on the end result. By practicing self-compassion and embracing imperfection, you can reduce feelings of anxiety and stress and promote a more positive and accepting attitude towards yourself and others.
For parents of chronically ill children, getting organized can be a powerful way to overcome being overwhelmed. Organization of your living space, such as setting up a designated area for your child’s medical supplies, can help reduce stress and make caregiving more manageable. Organizing medical information, including test results and doctor’s notes, using tools such as the advocacy checklist * can also help you feel more in control of your child’s healthcare needs. Additionally, taking time to organize your thoughts and ways of thinking can improve your mental clarity and reduce anxiety. Organization can help you regain a sense of control and reduce feelings of overwhelm.
As parents, caring for our chronically ill child is one of the toughest challenges we can face. It’s a relentless journey filled with endless appointments, medications, and constant worry. My personal experience has shown that managing the types of thoughts that create overwhelm is critical to navigating this journey effectively. “All or nothing” thoughts, “should” thoughts, “people-pleasing” thoughts, and “perfectionist” thoughts can all lead to exhaustion and despair. However, by practicing mindfulness, self-compassion, and setting healthy boundaries, you can overcome these thoughts and find a healthier balance between caregiving and self-care. Remember that it’s okay to ask for help and that you are not alone in this journey. With support and self-awareness, you can provide the best care for your chronically ill child while also taking care of your own well-being.
*In sharing this link to Dr. Maureen Michele’s site and her checklist, Courageous Parents Network is not endorsing her professional services. CPN has no experience with Dr. Michele in this capacity. The suggestions in the article are based on the author’s personal experience and training, but they are not meant to replace the recommendations of your physician, therapist, or other qualified professional. Please seek the assistance of a healthcare professional for any medical or mental health conditions.
Maureen Michele, MD is an award-winning leader, life coach, author, and physician. As a general pediatrician and allergist/immunologist, she has spent her career caring for patients with a variety of acute and chronic health problems. She is a military veteran and has enjoyed using her story-telling talent to teach young physicians the art of medicine. She is an accomplished life coach who helps parents of chronically ill children regain control of their lives and thrive at fulfillment. Maureen is the mother of three amazing children and has first-hand experience with being a parent of a child with long-term health issues.
Theme: Work
Theme: Work
When parenting a child with complex care needs – like my son Lucas had due to Menkes Syndrome — a couple often faces a tough choice: is one of them not going to work?
And I’ll stop myself here since the way I phrased that is already a trap. You will both work. But one may choose not to work outside of the home for a paycheck. Parenting kids like ours is a fulltime job and then some. I know some parents manage it while both working full-time jobs. I’d love to know how. Seriously, if you’re one of these families, please tell me.
If, like our family, both partners were working full time before the diagnosis of your child, do you decide something has to give? And that something is one of your jobs? In most of the rare disease families I know, one parent has elected to be a full-time at-home parent while the spouse continues to go to their paid job. I probably don’t need to say this, but — in a heterosexual couple — this is most often the mom. However, I’ve been so pleased to become friends with amazing exceptions. Bo Bigelow and Mike Graglia each walked away from their high profile careers to be the primary at-home parent while their wives continued to work in their own high profile careers. They continually inspire me. If you’re a dad caregiver looking for a model, you’d do well to look to them.
When one partner leaves their job, it has several impacts. Most obviously, the family income is greatly reduced, if not halved.
Have you heard of Pay Equality Day? For women that day is April 2 – chosen to illustrate that women need to work a full year plus four months to equal a male colleague’s earnings. For African and Black American women (earned pay $0.61) it is August 22 and Latinas (earned pay $0.53) it is November 20th.
No one has established a Rare Disease Parent Pay Equality Day yet. But we need one.
Even though I can appreciate that the pay equity examples above don’t involve a choice and that it could be argued that rare parents are choosing to earn less, for most of us, it feels like there’s simply no choice at all.
The average dual earner household makes 1.57 times more than the single earner household. Using those stats, Rare Disease Parent Pay Equality Day would be June 24th. Let’s mark our calendars and tell the world.
Of course the income loss is not the worst impact. There are also emotional and relationship tolls; and often the spouse who stops working outside the home struggles to define their identity without a career to define it. These often become strains on the marriage. Talk to any rare disease couple and it is likely you will hear the dynamic play out this way – the working spouse will say, “But I have to go to work.” to which the stay-at- home partner will frustratingly reply, “No, you get to go to work.” Work outside of the home can be a welcome relief from the challenges of care. Just as with parenting a “typically healthy” child, each parent gets exhausted in a different way. If you’re one of these couples (one goes out to work, one stays home to parent) you’ll know the dynamic: one parent gets home tired from the job and wants to relax, but the other has been pushed to their caregiver limits all day and wants to tag in their partner for duty so she can finally take a breath.
Like Bo and Mike, I’m an exception to this gender norm too, but in a different way. In my career making TV commercials, I was my own boss, able to set my own schedule. So instead of deciding which of us would quit our job, we dodged the tough choice and settled on reducing my work-at-home work load so I’d have a flexible enough schedule to handle much of Lucas’ care.
This meant that Monday through Friday I’d work 6 hour days. If a project demanded more time, I typically had to put those hours in after 9pm when the kids were sleeping. I didn’t love those parameters but we mostly made it work. However, it sounds easier than it actually was. Making TV commercials can be divided into production (set up lights, mics, cameras and roll film) and post-production (the editing work which can be done in a home office). The former requires travel and often long days. The latter can allow for a flexible schedule. So I began to turn down client work that involved production and limited myself to post-production jobs only. Turning down work is seldom a good business decision. Many clients still needed the production piece done so they’d ask me to recommend someone and almost everyone who does production also does post-production. With each recommendation, I also ran the risk of referring away all of my work.
But that’s how we managed the care-giving divide. I wasn’t exactly the full time parent but certainly the go-to parent or at least the parent with the flexible schedule. And even this reduced work schedule would not have been possible for me without others helping out. When Lucas was too young for school, my mom was his daycare. Once school began for him, we were fortunate to have a home-care nurse working from 3pm until his bedtime of 7pm. It was only because of the nurse that our work days could go as late as 5pm.
It became easy to take my flexible schedule for granted. I could almost always squeeze in a doctor’s appointment or a surprise pick up from school. And we were grateful for that. But if I wanted to keep my business going, I couldn’t confuse flexible with 100% available. There were plenty of times I felt frustrated by my role as compared to my wife’s.
I recall during a week of far too many medical appointments, asking my wife which of us would handle the next one. I was no longer willing to be the default by assumption. Her reply was logical,“It’s harder for me to take time from work. It’s easier for you.” But my desperation provided me with some logic of my own, so I answered “You’re right, it is always going to be easier for me to be the one, but it also can’t always fall to me.” And she got that. We worked it out. It was harder for her but not impossible. She almost never took sick days (for herself or due to Lucas). In fact, her very sympathetic co-workers had offered to donate their paid time off to her should she need more time.
Several times, I wondered if it would be simpler to give up my work entirely and have increased availability for Lucas’s needs and less tug-of-war on my priorities. But to be honest, I liked keeping active in my professional capacity. I drew satisfaction and a sense of identity from my work and it would have been a struggle for us to lose that income. We probably could have gotten by if it was just my wife’s salary but there would have been no margin for the unexpected expenses. And this lifestyle is nothing, if not unexpected.
For me it wouldn’t be as clean as a job, waiting a few years and then finding a new job to re-enter the workforce. If I shuttered my business and years later wanted to return to it, it would be like starting from zero. My clients would have found other solutions in my absence.
My wife felt trapped in her role too. We couldn’t consider reversing the roles because my wife’s job provided our health insurance. Being self-employed didn’t offer me great options for insurance. Any thoughts she gave to being a stay-at-home parent were dismissed as soon insurance came into play. Luckily for us, my wife is a teacher with summers off and so our roles could flip each July and August. She would become the primary parent while I could extend my work hours some and allow myself to be less available for medical appointments. This gave us each a change of pace and a chance to appreciate the burdens of both roles – to understand we were both working. Cause that is the thing – whether you are the parent who has the validation of working outside the home or the one that feels less validated as a caregiver, you’re both gonna be working!
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At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began to tell Lucas’ story with a short documentary: “Menkes Disease: Finding Help & Hope” narrated by Oscar nominee Mary McDonnell. That film led to Daniel co-founding with Bo Bigelow DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases.
Theme: Work
In this new age of Zoom, those parents who are working from home with their children underfoot find that their colleagues are getting a private glimpse into their family. For parents with children affected by a serious illness, this can mean colleagues seeing something new and at first, perhaps, unsettling. Courageous parent Myra wants her colleagues to feel comfortable seeing her daughter Havi in the frame – Havi is Myra’s beautiful superpower – and she sent them this message. She shares it now with CPN in the event other parents have occasion to send a similar invitation to their colleagues, friends, family.
Dear All,
I am writing to share a request with you all. I appreciate you reading this email with an open heart.
As you all know, our oldest daughter, Havi, was diagnosed with a terminal illness last December. We will lose her in the upcoming months. We are shattered and our world is turned upside down in ways that are hard to imagine.
Many of you have seen her join recent Zoom calls.
It is true: She has lost the ability to do almost everything. She is blind, she cannot speak, she cannot move, and this cruel disease even makes it very difficult for her to smile. Despite all of this, she is filled with the most love and grace and beauty I’ve ever known. And she can feel energy and love in a big way.
So, as my colleagues and also as the caring people I know you all to be, I ask that when you see her with me on a Zoom call that you say hello to her.
I ask that you acknowledge her presence, talk to her, maybe tell her she is beautiful and that you are happy to see her.
I recognize that it’s hard to know what to say when something feels so sad, so unnatural, and so cruel but please don’t pretend she isn’t there.
I ask for your support in seeing that a precious and beautiful girl is joining her mom for a day of work.
And I’ll ask you to see her long after she is no longer physically here with us. I hope none of you is faced with this type of tragedy: but I promise that I will extend the same love and compassion to you and your family.
With gratitude,
Myra
Theme: Work
To the outside world, my role as mother for my son Robby was clear while he battled a serious illness. I was the primary caregiver, the point of contact for the medical team, and the information hub for family and friends.
But I didn’t and couldn’t do it alone. My husband Brad and my daughter Laura were vital to everyone’s well-being even though their efforts were often not out front.
Throughout the years of Robby’s illness (anti-phospholipid syndrome), Brad stayed the course and went to work. From the outside it may have even seemed an easier road out of the daily fray. Brad went to the office every day to run a team, build business, and focus on results for his clients. It has a certain appeal, right?
But look at what that actually means. Brad left his home every day knowing that his son was ill, and that his wife was grappling with dangerous uncertainties and daunting logistics. Sure, we decided on this strategy together, and he trusted that I could handle whatever we encountered, but that doesn’t mean it was where he wanted to be. What he wanted most was to be present and supportive for his family.
The bottom line was that what we needed most, was him at his job, earning his salary and the all-important health insurance.
Work was most definitely NOT an escape for him, in fact, it was often an excruciating choice. So, compartmentalizing became a survival skill for Brad’s highly demanding job. He tried not to let fears about Robby’s well-being leak into his workday, and tried to forget about work pressures when he was home. It was possible sometimes, but at some point all walls are permeable to relentless force. Stress seeped into the cracks, and its power was cumulative – each crisis might be manageable on its own, but the effort was grueling by the end of a long week.
With so much going on, we prioritized energy for problems we could actually solve, and Brad was quick to cut through logistics. Hard to catch during the workday, he arranged a signal for when I really needed to speak to him – I would call once, and if he didn’t pick up I would call back immediately. Brad always picked up the second time, no matter who he was with or what he was doing.
One morning as I was finalizing Robby’s discharge from the hospital, I called to tell Brad that he needed to go home right away to meet the technician delivering some new medical equipment. He didn’t ask a single question or try to finagle a more convenient time. He understood that I wouldn’t ask unless it was important, so he just said “Absolutely”, dropped what he was doing, and was out the door in minutes.
It was incredibly comforting to know that we were his non-negotiable priority when we needed him.
One of Brad’s toughest challenges was determining when his presence would be most valuable, or if he should save his time off for a future (maybe worse) day. Sometimes that meant staying at the office even while Robby wasn’t doing well, other times he’d work from a laptop in the hospital room. He continually juggled his schedule to attend pivotal medical appointments, and would leave the office earlier so he could spend time with us, even when that meant working late at night to make up for the time he missed during the day.
It felt like an impossible calculation, but it was necessary since Robby spent more than 150 nights in-patient over the four years of his illness. Unfortunately, no matter what Brad did, he felt like someone was getting short shrift of his attention.
At the end of the day, Brad always walked in the door with a smile and energy to lift everyone’s spirits, but it could be tricky for him to jump into the shifting rhythm of our new normal when he got home. He knew the general plan, but was sometimes less conversant in the nuances. Maybe he would need clarification about the complicated medication schedule, or when to be concerned about certain symptoms, and he didn’t know how Robby liked his tea or his pillows arranged. This caused friction sometimes – “you’re not doing it right” is not exactly a welcome response (both from Robby and from me) when all the poor guy wanted to do was help.
On the other hand, Brad valiantly took sole responsibility for the monumental task of managing the health insurance. An odious task under normal circumstances, this was downright Herculean in our world. Brad was adamant that we divide and conquer — I advocated to get our son the right medical care, and he faced the foot-high stack of impenetrable six-figure (!) bills and insurance disputes.
This is not to say that Brad’s contribution was confined to picking up pizza and wrangling paperwork. In fact, those impersonal chores motivated him to create more opportunities for actual father-son fun. Never a videogame player in the past, Brad tried (without much success) to keep up with Robby in “Assassin’s Creed” or “Madden NFL”. He was a tireless viewing buddy for action movies, a worthy opponent for chess, and even managed to elicit rare enthusiasm by taking Robby skeet shooting.
Most importantly, Brad’s patient temperament and light touch were a welcome respite in a stressed family world. Robby was often glad for the changing of the guard after spending way too much time with his mother… and I appreciated the relief parenting too. Brad’s calm helped keep me grounded when I needed to vent frustration, or problem-solve a new setback, or just renew my resolve.
It wasn’t always about doing something specific, just his presence was deeply reassuring.
During all of this, there was little leftover for Brad, and he was ok with that. There was less time for everything from chores, to fun, to sleep. So laundry piled up, or dinner was scrounged from leftovers, or tempers were short after a long day. Brad often said that he understood that everyone was doing their best, and that was enough. He put aside ego and personal needs in favor of the big picture, willing to take front or back seat as the situation required. Not a grudging sacrifice, but a gesture of love.
Brad stepped forward most poignantly one final time as Robby’s father, at his funeral. That he spoke in his eulogy with heart and humor was not a surprise. But he astonished me and everyone present when he decided to join a group of our friends performing a haunting a cappella version of “Oseh Shalom” – a favorite hymn he used to sing as a lullaby to Robby. He hadn’t sung in public in more than 20 years, but was deeply moved to add his voice in an exquisite expression of love that went far beyond words.
Brad’s generous spirit enabled him to be the best possible father and husband in the worst possible circumstances. There is true honor in what he did and what it meant to our family. Brad never looked to be recognized for his contribution, but we always noticed the profound difference he made – sometimes in spite of and sometimes because of how quietly it happened.
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Caryn Anthony is a nonprofit consultant and executive coach from Silver Spring, MD, and is also a volunteer member of the Patient and Family Advisory Council for Children’s National Medical System. She is the author of “Any Way the Wind Blows,”—a blog geared for families raising a child with a significant medical condition. Her writing has also appeared in The Huffington Post, Grown and Flown, and Modern Loss.
Theme: Work
The father of a 3-year old with a rare, life-limiting illness shares how he talks about his daughter with work colleagues.
Theme: Work
“I myself stand in need of the arms of my own kindness.”
– Ram Dass
Early on in my daughter Mia’s life, a teacher told me,“You cannot get sick enough to help those who are sick become well.”
Lord knows, my wife and I tried. We often ran ourselves to the point of exhaustion, sickness, and emotional distress as we tried everything in our power to keep our daughter alive, comfortable, and happy.
I’m not sure where the idea that we must suffer to relieve the suffering of others came from but it sucks. We feel guilty. I should have done more. It needs to stop.
Easier said than done. As a parent you will do whatever you can do to bring any relief to your child. What. Ever. It. Takes.
Sleep. Food. Exercise. Job. Spouse. Friends. Fun.
All become secondary in importance when our kids are sick.
And if they’re sick all the time, well, then we are lost.
Two things helped me cope tremendously throughout my daughter’s life.
1. The first was writing. I’ve always loved writing. It feels as natural to me as breathing (see #2). When I’m inspired, words just flow. So I began a blog about Mia’s life. It was intended to be a way of keeping family and friends in the loop because so much was happening and it was impossible to talk about it over and over. The blog turned into a beautiful thing, I’m so glad that I did it.
2. Meditation. I always thought meditation was something I’d like to do, but they don’t exactly teach you these things in school, though they absolutely should! Meditation has countless benefits that scientific research is now proving. I tried it on and off with little success – meaning I didn’t know what I was doing so I gave up. What I learned is that meditation is a “practice.” Which means you need to practice it every day, whether you want to or not. Especially when you don’t want to! Most simply, meditation is being aware of your breath.
Here’s a quick meditation you can do any time, any where:
o First, rate your stress level from 0-10. 0 being you are blissed out to 10 being you are crawling out of your skin in full panic mode. Just make a mental note of where you are. Give it a number.
o Close your eyes (but read this all the way through first!)
o Become aware of your breath.
o Notice your breath coming in through you nose, into your sinuses, down your throat and then filling your lungs.
o Pause a moment.
o Then just let it out naturally. Feel the breath leave your lungs, back up your throat and out your nose.
o Pause a moment and repeat 2 more times.
o Open your eyes.
Feel better? Feel just a little calmer?
Rate your stress on a scale of 0-10 again. Hopefully, you moved down the scale just a little bit.
This is a very simple mediation that you can do in any moment. Meditation is just an awareness of your breath.
When you are aware of your breath, you are living more in the moment and that is what you want to do—in this moment lies all your power. When you begin to live with more present moment awareness, you will be able to help those you love with more clarity and ease.
And they will feel it. And so will you.
Namaste.
Mia’s blog: zingoswest.blogspot.com
My website: noahzingarelli.com
Theme: Work
I work outside the home and always have. I am also a wife and mother to two girls. Eight months ago, my youngest daughter, Annabel, was diagnosed with Tay-Sachs Disease, a fatal, incurable genetic disorder. After diagnosis, it never occurred to me to quit my job and stay at home with her. I know there will likely come a time when I will need to, but to just hang it up right away wasn’t my way.
Some people might question my decision to continue working. One person (another Tay-Sachs mom in fact) even went so far as to say, with an air of disdain, “I just don’t know why you would want to do that.” This was a pretty judgmental statement in my opinion. I understand that an outsider may think that any mom in my situation would want to spend every waking minute with her terminally ill child, and I know there are lots of moms who do want this. I’m just not one of them. I love my children dearly, but I am a separate person and am not defined solely by motherhood. I was 32 and had been married for over ten years when I had my first child. It was impossible for me to become this new person – Mom – and forget the person I had been for so long. I had to merge the two and let both have their space.
Now that I am parenting a child with a life limiting illness, I need, more than ever, to become that other person for a few hours a day. When I go to work, it is a way for my brain to escape and recharge. Aside from the financial aspect, I need my job because it makes me a better mother and a better wife. It is a way of coping with a very difficult situation. I think that part of the reason I have maintained my sanity over the past eight months is that I do get to completely focus my mind elsewhere for a period of time. For me, that has been essential. I know some moms love being home with their kids every day (healthy or otherwise), and I have tremendous respect for those ladies. But just like I will never question their decision to do so, I will also not feel guilty for the choices I have made. Continuing to work or not in this situation is a very personal choice, and neither is right or wrong.
As someone pointed out to me the other day, fathers almost always work, and no one judges them or gives them grief for it. No one expects a dad to stay home and take care of a child following a diagnosis like this. No one would say to my husband what that woman said to me. Why is that? Are we, as mothers, expected to be so one-dimensional that our identity as people outside of that role disappears the moment we give birth? There is nothing I wouldn’t do for my children, but they do not require my constant presence in order to thrive. Working allows me to give them the very best of me. Of course, a vital part of that equation is that Annabel receives the best care possible while I’m gone, which she does.
Parenting healthy children is hard enough, but parenting a dying child is mentally and physically exhausting, terrifying and incredibly challenging, and being able to go to work allows me to avoid getting swallowed up by it. I for one will never fault any parent for making the same choice.