Parenting a Child with Big Health Challenges
by Carla Atherton, Director of The Healthy Family Formula
As an active person, I have been interested in health and wellness since my early teens, but didn’t always know what to do and how to be healthy in a holistic way. And when I became a mother, my interest in health deepened. But it was when my own family was affected by chronic illness that I became first, borderline obsessive. And now, well, I would like to call myself passionate about not only individual health or children’s health, but family health.
And when I say health, I do not mean just eating right and walking every day, which are very important, indeed, and, of course. But a deeper health that includes mental and emotional wellness, spiritual fullness, familial bonds, your mental and physical and social environments, your relationship to the earth, your relationships to your own body, science like genetics, anatomy, brain and gut health, and better yet, epigenetics, and all the way into the taboo topics of healing and cure.
The challenges we parents of children, who are ill or are hurting in some way, face day in and day out are vast and many. You may feel fear, insecurity, overwhelm, loneliness, and anger. You may be under-supported, not know where to seek support, or suddenly become a square peg trying to fit into that round hole of our extended families or communities you used to feel so comfortable with. You may neglect your own health, burn out, or fall apart. I have seen this happen.
But this is not to say, “Woe is me. I have a sick kid.” This is to say that these are all very natural experiences and part of our growth as parents, as human beings, to go through some of this or all of this. But you don’t have to go through it alone. And you can ease some of the fear and worry and loneliness that can come on full force with such a challenge by openly talking about what it is like. And what it takes to not only get through intact, but whole, more full, and I dare say, stronger.
So what kind of days do you have as a parent, who has a child who has become seriously ill, has been diagnosed with some disease or condition or another, has had a malfunction in their bodies or been in an accident or has been injured? What are your days like? What is your story? The challenges are so great and affect every aspect of a parent’s life that it is almost impossible to voice what this experience is. But I shall try.
When your children are ill with even a cold or a headache or a stomach bug, it can mean some hard, sleepless nights. And when your child is ill for an indefinite amount of time, that time when you are relieved of the heightened intensity of the care you need to give those children is very often far into the distance or not in the cards at all. I could say that it is like running a sprint when our children have an acute illness and running a marathon when they are chronically ill or permanently injured. But it is sometimes more like running a sprint for a marathon distance.
So What’s My Story?
As many of you know, one of my daughters has type I diabetes. What you don’t know is that I am the parent of kids who have also battled severe anemia, mood issues, serious infections, gut dysbiosis, leaky gut, food allergies, and hypothyroidism.
In the early days, I had been known to wake with a wave of fear that my daughter had died in her sleep due to low blood sugar. I don’t feel that as much anymore, well, not to that extreme and not every morning. But yes, it’s been an interesting three years.
Back when my kids were little and we didn’t appear to have any of the issues that we have been sorting out over the last several years, we spent a great deal of time with another family whose daughter has Down syndrome. When I would try to identify with my dear friend’s struggles at times, she would tell me that I couldn’t know what it is like for her.
I remember feeling hurt by her comments. And my little ego felt that she was calling me insensitive and ignorant. But she was doing neither of those things. She was simply telling me that unless you are there in the trenches, you can’t really feel what it is like, no matter how much you care and love and want to understand.
So when I no longer had the perfectly healthy family, I had to learn fast, adapt, and get my crap together. And I’m still learning an exponential amount every single day. Things like patient advocacy were definitely on my radar having worked in the women’s studies field tackling issues such as autonomy and patient disempowerment as an academic coordinator for a university where we taught a class about issues in women’s health. But this understanding and the need for better care deepened when it became my child I was advocating for.
I dove deeper into functional holistic health where we sought the root causes of my daughter’s health challenges. I had to know the “why” so that I could help her to heal as much as she possibly could. It began to make perfect sense to me that the body is a system, not individual parts, and that all illness has roots in either a toxicity or a deficiency that cause stress to the body.
I studied, gained certifications, and built an entire practice dedicated to children’s and teen health so that I could share this revelation with the world. Managing symptoms became a “for now” situation, and finding root causes to heal became the ultimate goal.
I realized that caring for our bodies needs to be a priority. That sleep, less exposure to EMFs, which are electromagnetic field, good whole organic foods, stress reduction, and joy need not be something we attend to only when we burn out, but before that happens.
Again, something I felt, but wasn’t always practicing was that kids can live healthy lifestyles without feeling deprived of something. There is no such thing as kid food! I never looked at a children’s menu in a restaurant the same way again! They need food just like adults—even more so!
Having a child who has a big health challenge meant that death was a possibility every day. And mortality snuck up close. Letting go of expectations of perfection of what I had planned of that finish line that kept getting further or changing where it appeared was something I had to learn how to do every day.
There is so much more. But the point is that some of the things I understood in one way became deeper more expanded as our family travelled this new road together.
Okay, so enough about me.
Our Current Medical Model.
I want to talk here a little bit about our current medical model. The healthcare system we in the developed world utilize tends to fall short for the folks who are faced with chronic or long-standing health issues. Our system is designed to treat acute cases, to deliver sick care, but really has no clue how to support our families for the long term or to help them to heal or to prevent illness in the first place. None of these things are even often considered.
What we have is a system that can patch and deal well with acute illness or injury. But when it comes to what happens next, we need to look elsewhere. And that would be to the practitioners, functional medicine doctors, communities, fellow parents, and our own research and findings and experience to be able to understand what we need to do for our kids and to make the decisions that are right for us.
I am not the expert or an authority figure on what everyone should do when seeking better healthcare and support for your families. But I am the expert in my own experience, and want it to hit home for you that the expert for your situation and for your family is, well, you.
By conversing about these issues and lending each other support and ideas we may not have had access to in the first place, we can all become better equipped and inspired to keep on keeping on during those difficult or early days when the learning curve is steep or, better yet, to thrive when we feel more strength well up inside of us to move to the next level or path or stage.
I see this journey as more fluid than stages, though. I see this health thing as a progression through life, a series of events and heroes’ journeys that we move through. I can’t and don’t want to tell you what to do. But I can tell you what I have learned and hope that it is relevant to you.
Okay. So now that you have a diagnosis or have been through a health crisis with your child and the ball is rolling swiftly in an entirely different direction than you had planned for your life and the life of your precious child, what now?! What can you do to first learn how to live this new way and navigate all you will have to navigate from here on in?
My answer to that question is, “A lot!”
So Advocating for Your Child and Navigating the System is the next issue I’d like to dive into here.
Being an advocate for you child is probably not a new concept to you. After all, you are a parent. We all advocate for our children at their schools, amongst their communities and groups, in other social situations, in systems and facilities and programs. We do this every day. However, this position takes on a whole new meaning when our children are ill and when we need to address more serious and life-altering issues in a healthcare system and in communities that are only set up to deal with short-term support.
Healthcare professionals are often only trained with the knowledge needed for short-term, acute care. There is no time built in to the system to investigate serious conditions or to get an accurate overall picture of the health of your children. And let’s face it, there is not enough time in the day for every doctor to spend hours of research for each patient.
Even our own social communities can only understand so much or accommodate people, who have special healthcare needs to a certain extent.
Where 15 minutes to check in with your doctor once per year was more than enough to send you and your children off packing with a smile and a lollipop, many people’s experience turns to hours in various waiting rooms toting a bag full of books and activities to keep from going nuts waiting to be seen and then sometimes even getting very few answers in the end.
Please do not get me wrong, though. I completely respect and admire those in the healthcare field. Many of them are doing their very best. And some are stellar healers. My own daughter wouldn’t be alive if it weren’t for a particular group of doctors, nurses, and lab techs.
My point is that we need everyone on this team. And everyone on the team needs to be heard. We can’t solely rely on the system to do all we need to do for our children because part of that team, and I would even say the quarterback of that team is you, the parent. You decide who is on the team and what position they will play. Period.
Think about it. You’re the one who knows your child best. You are there in the middle of the night. You know what they eat. How they interact. What makes them tick. What they love and what they don’t like. When something is wrong or when something is working or going well. Now pair that with the healthcare professionals and supportive communities, who bring all they know, their individual training, education, and their own experience to the table, all communicating for the good of your child. Here you would have one hell of a line-up! Sometimes in order to empower you and your children in this way, you will need to advocate more than you would if the stakes were not as high.
Okay. So now that I’ve made it clear that I respect and am grateful for the work of the folks who work hard in the health field, here is where I part from the more polite and diplomatic approach to advocacy. Here is where my inner mama bear sits in on this conversation to tell you what she does to make sure that her children are cared for and their individual needs are respected.
Becoming a Health Advocate for Your Child.
Recognize that people are not always kind or generous in their treatment of your children due to personal and vocational burnout. Remember that healthcare professionals are human, so deserve understanding, but also make mistakes or are not always right in what they advise or how they behave. Try working in an ER—and I’m sure that some of you do—in a dangerous neighborhood, where many of the clientele swear at you and see how you might feel at the end of the week. Not so good!
Some of these jobs are not easy. No. But they still need to be performed professionally. This is yours to understand, yes, but not yours to rectify. As the system needs to rectify it by way of better training, better policies, staff support, and time off.
Even if staff members are not always interested or in a space to do their jobs well, you still deserve to ask for respect and be clear on what you need, even if it would be easier not to rock any boats. The more people who respectfully request better treatment and attention, the more healthcare professionals take note.
Whenever I speak up, I not only improve my own child’s situation, but that of every child who comes after us to see that particular professional. We are not only there to learn from the pros, but we also have a hell of a lot to teach
them, as well. And let me tell you, my favorite doctors are the ones who ask to borrow your books!
Sometimes being a health advocate for your child means going against convention, whether it be conventional treatment or conventional ways of thinking. Conventional thoughts and treatments are believed to be effective because they have track records of efficacy. But sometimes there comes a time when we need innovation, new thoughts, and a different plan if you want to make change to move beyond coping to healing.
Sometimes convention is not what we need in a particular situation or has not worked or doesn’t make sense for us to follow or keeps us stuck with undesirable results. For example, staying ill with an illness that is healable. Sometimes we need to think outside the box to innovation. And isn’t innovation and experimentation and exploration the whole premise behind science? The whole premise behind medicine? Never stop exploring.
Which brings me to my next point: finding answers. I will be the first to admit that I am highly annoyingly curious and question everything. I don’t mean in a way that is oppositional. But that asks the question why? What is the mechanism behind this? Does this make sense to me? Does this make sense for me?
Always take in the thoughts and opinions of others in your life and on your healthcare team. Then dig further if you have not found the answers. Think for yourself, and ask questions until you get those answers. You need to set aside hurt feelings if you want to remain a fearless parent and keep advocating and doing what you need to do to find answers. If people get sick of you or don’t know the answers or don’t have the time, then ask someone else.
A hierarchical relationship between you and your healthcare professionals can cripple you. There should always be mutual respect. And when there is not, shop around for a new member of your team. This might not be an easy feat if there are a limited number of doctors in your area. But there are always options.
Never get cowed down or afraid to ask questions because you feel the professionals’ time is too important. You are both important. And there are ways to be able to respect both of your time.
Some things I find that work:
- Get the longest appointment you can get.
- Plan for the appointment by being organized with all of the questions you anticipate asking.
- Keep records of answers and lab results so you can investigate further on your own.
- Be clear on what their role is.
- Be clear on what they can deliver and what you expect.
- Be on time and end on time.
- Make subsequent appointments if you need more information.
- And always remember that you are actually the employer. And the professionals are there to help you.
One of the most important things I did for my sanity when we had the big D-day was to get organized. And I would tell anyone now, even those of us whose kids are entirely without health complaints, is to get your poop in a group. Very empowering! So keep records of everything for reference, to research, and to see improvements, etcetera.
I have caught problems many times with vitamins that contain ingredients my child is sensitive to or that I didn’t want her to have. I have pointed out trends in bloodwork. I have brought possible problems or solutions to the attention of my teams that they hadn’t thought of. And I have been able to tell myself and my kids how far we have come and if we have sorted out a particular health problem or another!
This next one is pretty hard at times, as we sometimes need a bit of time to adjust. But if we are to help our kids in any way, we need to face what we are dealing with and move on. If you are not in your own denial, then you can become the expert in your children’s health.
This is not to say that we accept a diagnosis and say sadly, “This is all there is for my child.” Hell no! We keep growing and finding more. It is to acknowledge what we have now, today, to work with, sort out, or to be joyful for. And what we can do to make tomorrow that much better.
Now, What About You?
Other people’s success stories can be inspiring, but can also make you feel like a failure or think thoughts like, “Why didn’t I succeed?” There may be no answer or finish line. But that is what life is. A series of heroes’ journeys, one after the other, cycles tumbling through and over each other. You never stop in life at this perfect place or space.
So stop expecting this with the health of your child. Even when you get control of the big health challenges and are out of the woods, so to speak, you will still be challenged when they get common illnesses or move away to college or marry the boy you think is no good for her. We parents know all too well that life is just that way.
But there can be closed chapters, where you have overcome the worst and are in maintenance mode. And if not, there needs to be things in place that allow you to get help, rest, respite, support, and a feeling of acceptance that this is what it is today. And who knows about tomorrow. And you will most certainly hate me for saying this, but revel in and recognize the learning that happens in the dark moments and when you think nothing has changed at all.
So all philosophy aside, maybe, here are some actionable steps I have identified to work with my own family in making for a successful healing: one, find the root cause; two, work with your kids, and three, stay sane.
First, let’s define what I mean by a successful healing. A successful healing is where you are out of the woods and into maintenance mode. Where you have either gotten a handle on the illness or healed it altogether. I believe we can do both for most things. But it takes a hell of a lot of work, dedication, and knowing what to do!
So Number One: Finding the Root Cause.
You need to know what caused the illness. We can be afraid to look at the root cause because we may have made decisions that contributed to our children’s health challenges. We may determine that it might be our fault. And sometimes what we didn’t know may indeed have been contributing factors. But so is chance, so is circumstance, so are the choices of others. We cannot and should not get stuck in this way of should-have-could-have thinking.
I know that if I were to put myself through that, I would beat myself up over vaccinating my daughter as an infant, feeding her wheat, and not looking into the possibility of her having an infection earlier. But I didn’t know then what I know now. And what I knew then was what I knew then, which was still a lot! There is only the future ahead, which we can anticipate, but cannot predict. And what is most important is what we are experiencing today.
The purpose of finding the root is not to blame yourself, but to be able to address and alleviate the cause and to know where to go from here. Self-blame only makes us unable to fix, move forward, and heal.
Number Two: Work With Your Kids.
I say work with your kids, not against them or against their will. They need your guidance, but not your dominance over them as you are teaching them to be responsible for their own bodies and well-being and that they deserve the respect of others, including you. You are teaching them to respect their own bodies, to treat themselves well.
If you force things on them or don’t listen to what they think and feel about their healing protocols, then you run the risk of creating adults who cow down in doctors’ offices, who fear asking questions, and then ultimately, suffer in silence. You teach them that someone else has authority over their bodies and disempower them. This is a delicate balance. But you can guide them while respecting them by being honest and clear and keeping communication open.
Try not to panic and get clear. Think first before changing a protocol or introducing new ideas, and commit to seeing these protocols and practices through or your kids may stop wanting to try new healing methods, become discouraged, and think nothing works. Pay attention to what they need or resist. Then give them what they need or adjust what they resist.
Pick the right time to discuss issues or teach them something they need to know about their condition, not when you just had an argument about taking vitamins or after their friend stood them up. Know when to back off. Like when they have had enough of thinking and talking about their illness or food or doctors’ visits. Know what is age appropriate for them to handle. And know when to call it a day or to go and do something else like play at the beach or throw a ball around or go to a movie or a friend’s place.
Give them age and maturity appropriate autonomy and a say in their own health. Even if they make the unhealthy decisions, you still heard them and they felt heard. And then they will trust you when you say, “Hey, I heard you. And there is a bit more I can tell you about this. And this is what we need to do.” If you hear them, they will hear you.
Give them more information when needed and less when needed. Ask them honestly, “Do you want me to handle the sorting of your vitamins or do you want to take part? Do you want more information about this or need less so you can just go and play? Do you want me to just tell you what time to do your exercises or do you want to decide?
Get them on board and involved. Always foster a respect for themselves and their bodies and minds and empower them with inspiration. They won’t always care as much about outcomes because when you are young, you don’t always have the brain development that is required for foresight.
But if they know that they want to feel better and to get outside with their friends more and be able to do that day in and day out without their healt complaints or illness or disease, then keeping an ongoing dialogue about how the decisions they make greatly affect how good they feel is essential.
Your children have their own processes and will be going through something much different than you are as a parent. They may feel controlled or helpless or afraid or frustrated, just like you, but for different reasons. And those feelings may manifest in different ways. If they need to hole up in their room and read for a couple of hours, leave them.
If they need to walk, let them go. If they need to cry or scream for a while, hug them then help them get through it. I know we all want the pain and hurt and frustration to be gone for them, and we want to buffer and control and distract from the hurt. But sometimes they need to go through what they need to go through because if this is hard for you, it certainly must be for them.
This is something I had to learn and am still learning. What I need may not be the same as what my child needs. Yoga may not be her thing, but trampolining may be, and may be even more therapeutic for her, things like that.
Here is where it is also important to listen to them and check in on occasion about how they are doing and perhaps even finding support groups of kids their own age that are going through the same things. My daughter just went to a camp for kids with diabetes for the first time. And although there were issues I had with the camp, itself, and was afraid of the dangers of identifying one’s self with a disease, we don’t regret the 8-hour drive and displacing our entire family for 12 days or my autoimmune flare-up that took place because of it for even one second, for the connections she made with other kids who are going through a lot of the same stuff she is going through.
When we signed her up, she told me that she wanted to be somewhere for a while where other kids were checking their sugar and receiving insulin and doing it as normally as everyone else brushed their teeth. She didn’t need to explain anything to anyone. My daughter came home feeling joyful and even closer to me and appreciative of all we are doing at home. Success, I must say!
Sometimes they will make bad decisions and sometimes continuously for a period of time, especially in the teen years! Remember that even for adults, it is easy to keep saying “that’s not good for you.” But us parents, we even do things that are not good for us every day. And we’re supposed to be grown up! We do things that hurt our health or sabotage our efforts when we already know what we need to do, but don’t always want to do it or address it. Our kids do the same.
There is nothing I can tell you that will make this easy. But I can tell you what might help get you through those times. Try to stay close to them so that they will always turn to and return to you for guidance and support. Try not to judge or be angry about their decisions because they will hide them from you. And then, you will have an even greater challenge with helping them, and be there for them if they are struggling or get worse, prepared to help them to regain any ground they have lost. They need a safe place.
Try not to beat a dead horse. I find this one so hard to do! If they get it, leave it be. If you repeat yourself when they have had enough, they will stop listening.
If what you are doing, even if it is the best-laid plan is not working, change the pattern, try a new modality, get help from a friend or professional, find support or chat groups, change practitioners, shake up your family routine, improve family relationships. Sometimes it is just about connecting with your kids, again, checking in and getting clarity on where they’re at.
Educate them if they don’t understand. Educate yourself if you don’t understand. Practice discretion and respect their privacy, don’t talk about them all of the time and about them in front of them with doctors, etcetera. Don’t always talk about their illness or identify them as ADD or diabetic. It is part of their current experience, but not part of who they are.
Recognize that you can only do so much in a day and make time for normalcy, the mundane. That sick kid doesn’t always have to be the sick kid, give them a chore or a task they are capable of performing so they are part of the family, part of the solution, and pulls them out of their sick kid role, challenge them, and give them back their power and self-worth.
Gain clarity on what you need to do and define your expectations. Get clear on their boundaries and wishes. For instance, my daughter wants me to give her her vitamins without commenting on her taking them.
Kids need to know what to expect as do you. Get clear on what the things you are trying to accomplish will take, set goals and time frames. For example, committing to trying this supplement for 6 weeks, not missing a day, even if it doesn’t seem to be as urgent as the day you started, which it never will. Take notes, chart progress. Some kids like to know all of this stuff and are motivated by it. And others don’t. You know which kind of kids yours are.
Sometimes we cannot see the change, but it is happening or will happen suddenly. Tell your kids that. Only change horses if you see harm, not a Herxheimer reaction or a healing response, but actual harm. And even then, get clear and then execute the changes you have decided to make.
Celebrate and recognize every single success. This is extremely powerful! Have fun with this! You could go to a movie, have a special dinner, have a little party, say a special thank you at a meal, or a smile, a nod of encouragement, even just saying, “Hey, kiddo, did you notice that you slept through the night last night? Or wasn’t that amazing?!”
Or high five everyone when you made it through ordering an entirely gluten-free meal with a grumpy server at the local greasy spoon diner while on the road and at your tenth hour of driving. Foster a team spirit, a supportive family environment, and be proud of each other and your collective efforts. Focusing on every success takes the focus off of the overwhelm you can all feel when focusing on what we may think is left to come. Focus on joy. Focus on what you have.
I don’t want to end this section without briefly discussing extra challenges some of you may be facing. Healing and parenting children with big heath issues is challenging to the ninth degree in the first place, throw in a divorce or other stressful situations, and it can become more that we think we can bear.
You may need to get very creative and how you approach healing protocols and routines and decision-making and therapies if you are divorced or if your partner is uncooperative. In these cases, you may need a mediator or some legal help.
Unexpected life changes like death, moving, trouble at school and work can also put some roadblocks in your way and make for extra planning, support, and some adjustments to your routine or plans. If you continue doing what I have suggested above and other things you have found yourself to be helpful, you will get through. Your kids will get through.
Having children other than your child who has health challenges puts another set of goodies on your plate. Dividing your time between your ill child and the other children can be very difficult and requires some planning and/or spontaneous adjustments. Don’t forget that your other kids need you just as much and also let the other kids know that you are there. But the quality of time you spend with them might be more important than the quantity.
You may even have other children, who might have gotten ill with either something temporary or with a big challenge like their sibling. Often, when one member is ill, others are, too, due to a combination of shared genetics, exposures, lifestyle, and emotional, spiritual, and familial ties. Here it is doubly important to get more help or to just turn off the phone, call in sick from work, let the house go to hell with laundry piling up, and focus on your family and yourself for a while.
Sometimes other family members or friends don’t understand what you are going through or what you are needing to do when you’re in the midst of a healing protocol. Some may question your routines like getting to bed early, your food choices like avoiding gluten, or your protective measures like avoiding EMF exposure.
Being in social situations like family gatherings and team sport potlucks can be difficult, especially when you are having to constantly explain why you are making the decisions you are making. Some folks will be confused and question your decisions. Some may be curious. And others may be insulted when you turn away that dish they made on the buffet table or that gift of cookies they made for your family. It is best to say thank you for the gift and cherish, but don’t eat or use it, rather than turning it away, and when faced with choices at a family meal, just eat what you can or eat before you go. And then just say a polite “no, thank you” to the rest.
There is no need to explain everything all of the time as it becomes exhausting and turns the focus at gatherings from the social aspect to your problems. There are many ways you can handle these situations. But they will sometimes be very hard to manage. And these situations can be very stressful and can affect your relationships and your children’s relationships with others.
Suddenly, grandma cannot express her love for her grandchildren with cookies, anymore. Understand that many other people and relationships can and will be affected by your child’s health challenges. And the new decisions you are making are sometimes the catalyst for other people to question their own practices and habits, which can be intimidating for them.
Just stay focused on what you are needing to do and resist making concessions that will sabotage your efforts just to fit in or make things more comfortable. There are other ways to make those situations more comfortable such as communication and finding other things to do socially that are not so focused on whatever challenge you are trying to rectify. And talk to your kids about it when they need to talk about it or are feeling the strain.
Addictions or mental health issues in the family are issues that can be most devastating and can really put the brakes on attaining the best health possible. Again, find the support you need to be able to make the best healing plans for your kids and know that the healing of those other family members is essential, as well as they deeply affect the stress level and manifestation of illness for the rest of the family.
When deciding to do the best we can for our ill children, it is sometime necessary to assess exposure to toxic relationships and other social or familial situations that can detrimentally affect you and your child’s health and sabotage your efforts.
Emotions can run high for both you and your children. And some of you might be dealing with issues like serious familial discontent, children being angry with or blaming the parent, tantrums, hitting, and physical or verbal abuse, even from younger children, who may be having serious troubles that either relate to their illness or are a direct symptom of their illness. This is when you may need more support and the help of specific programs and/or professionals.
And the last issue I would like to address here is the question, “What if my child has something that is irreversible? What if my child has permanent brain damage or a condition such as muscular dystrophy or Down’s syndrome or congenital heart failure or an underdeveloped kidney or uses a wheelchair or other supports that make everyday life much different than the majority of the population?”
The same goes for you folks—the same ways of communicating with your children and focusing on each day one at a time. One day at a time. And even when you want to scream, scream then, but then try to find the joy in each day. Your life is different than your neighbor’s. But it is not any less of a life.
Just as my daughter needs to check her sugar 10 times a day and insert herself with needles and pump sets, your child needs to do what he or she needs to do to care for themselves. Or you need to do these things to care for them. You have what you have, and to change your mindset about that is the most powerful way to really change your experience of what you have.
Okay. So the third action is to stay sane. Easier said than done, some of you are telling me. First, I just must commend you warrior parents and caregivers caring for these kids. I know, you would say, of course, I would never not do it. I love them and would do anything for them, as cliché as that may sound. But I am going to recognize you here. I want to stop and recognize what you
and I handle and move through, whether it be with grace or with a bit of a mess in our wake. I say, yes, you are brave. And I commend you on your heart and determination and strength. But stoicism isn’t always necessary or the only thing that needs to be acknowledged. So is the fear and the uncertainty and the loneliness and the alienation. And how everything changes including priorities, friendships, and interests, passions, life trajectory.
I am going to recognize the darkness that can come with the challenges you parents face. The depression and anxiety and the days when you fall apart and drop the ball or don’t want to do it anymore. Recognizing these things is not to say you are not strong or brave, but human, and even more deserving of recognition for all that you do day in and day out caring for your children.
And in order to be the best parent you can be for your kids, you must take care of yourself so you can handle all that is happening now and all that may lie ahead. You need to take care of yourself and strengthen yourself so that you can “bring it” when you need to.
We fear a lot being parents with children battling illness. We fear that our kids can harm themselves if they make unhealthy decisions or if we make the wrong ones that potentially bring harm to them.
It is easy to beat the crap out of yourself when your children have problems and blame yourself for what they are going through, but to become overwhelmed with blame and shame and frustration will lead to feelings of powerlessness. And when we are powerless, we cannot give strength to our kids. We can’t do our jobs.
So, take care of the caregiver. This is essential.
-Get help when you need help, rest when you need rest, get respite for breaks, support, an ear to bend, seek acceptance, understanding, and soft places to land. You do not need to be alone nor can you do it alone nor should you.
-Know when to hold ‘em and when to fold ‘em. Sometimes it is enough for the day. There is always tomorrow.
-Know when you have done all you can and need to let go and when you need to push or hang on.
-Remember that you need support so that you can support your children.
-You are not an island. Nor do you know everything. Nor can you be everything. Your children may need support outside of you such as therapies, camps, groups, other family members, mentors, and friends. And these supports are sometimes found in the least likely places or from the people you least expect. Open your mind and heart to the experience and presence of other people in your children’s lives and in your own as the diversity of their experience with other people will enrich their healing experience and ultimately their lives in general.
-And take walks, do your exercises, do your yoga, run, play in sports teams, get counseling if needed, get massages, go to the chiropractor, drink tea, eat well, sleep well, smile and have joy, try to reduce stress, address your own health challenges, sit in a sauna, swim, go out with friends, stop abusing yourself with vices or alcohol.
Don’t numb out with coping mechanisms or addictions, read for pleasure, listen to music, draw, paint, never give up what makes you you, what makes you passionate, what makes your heart sing in order to care for everyone else, think good thoughts, meditate, go for drives, employ all of the practices people suggest you do to stay healthy and do some more.
Do not lose yourself.
So in conclusion and in my humble opinion, aside from permanent injury or damage such as a loss of a limb or a genetic expression such as Down syndrome, with the right mindset and information, I believe you can heal anything disease related. And even when those health challenges are permanent, there is a whole lot you can do to improve your and your children’s health and the experience of your lives.
Dangerous words to speak to an audience of thousands of passionate parents and caregivers. People shy away from words like “cure” because so many feelings and issues come up when you make those claims. But here I have chosen to use the word “heal.” And even though my own family is perpetually in a state of healing, as we all are, I know that we are moving toward fully transcending the health challenges we have been facing.
I know this because I have seen it happen. I know this because I know where we started and how very far we have come. I know this because there is nothing we can’t do if we want to. And that our bodies and minds are miraculous if only we listen and give them what they need. I know this because my children laugh and share their triumphs or live a day that was better and easier than the day before. I know this because they don’t feel sick or damaged and they aren’t. They feel alive, just as they should.
We parents can feel hopeless and cheated and angry when we don’t have what we had pictured in our minds about the perfect life for our families. But I would bet my ass that there has not been a single person in the history of human kind that has turned out to have the life they had planned. They set goals and then adjust and allow the parts of the ride that turn and flip and dip.
I said to my daughter the other day, “Either become at peace with what bothers you about yourself or your situation and move on to the next hero’s journey, or change it.”
And as an empowered parent, you can do both, for you and for your children.