Sara Camak Coaching

As parents of children with rare disorders, there are so many times where situations arise that are completely out of our control.

Instead of asking questions like “why is this happening?”, I’ve found a much more helpful question to ask. For example, let’s say your child is hospitalized during a medical crisis. Instead of focusing on all of the things outside your control, try this:

“My child is in the hospital. I didn’t ask for this and I can’t control it. But, since it’s happening, how do I want to show up during this hospitalization?”

This simple question helps me move from unhelpful thought loops (envisioning worst-case scenarios, indulging in self-pity) to envisioning my best self in this scenario, which in this case is showing up with curiosity, openness, and compassion.

Next time you are overwhelmed by a situation, give this question a try!

Wishing all of my readers an early Happy Mother’s Day!

Your needs matter too. Every day. As parents of medically complex children, there are often legitimate times to put our child’s needs above our own. I experienced this personally recently as our family experienced two medical crises, both urgently needing my full time, attention, and energy.

I used to think that in moments of crisis neglecting all of my own personal needs except the most basic (a little food, water, and a tiny bit of sleep) was a noble act of sacrificial love. Yet, the further I travel down this road, I have come to see that even in the midst of medical crises, I can look for small ways to care for myself. It may be as simple as accepting help from a friend who wants to bring a phone charger to the hospital and sit with you for a few minutes. It may be leaving the hospital to get some sleep in your own bed.

What used to be a dichotomy

“I can only care for my child because she’s in crisis, nothing else matters”

has softened into a question:

“How can I care for myself while I’m caring for her in this crisis?”

Do you think it’s possible to care for yourself during your child’s medical crisis? Why or why not? Drop a comment below.

My 4 year old started a phrase that caught on in our household that we now use regularly: “ a good mistake”. She might use it to reference trying a cartwheel and falling down, coloring outside the lines, picking the “wrong” color for the line of the rainbow, etc.

Essentially, when we are brave enough to try something NEW OR DIFFERENT and IT DOESN”T GO AS PLANNED.

Indeed, I can learn a lot from my 4-year old here. Rather than seeing our child’s experience as a failure, as parents, we find it easy to instead see their:

-bravery
-courage
-willingness to take a risk
-willingness to be a beginner

It’s not a problem when it doesn’t go as planned. It’s a “good mistake”!

However, we are often less willing as adults to view ourselves and our mistakes in the same way.

How would you view yourself differently if you considered everything you did to be either “winning or learning” a phrase I learned from Brooke Castillo.

For example, my child is nonverbal and uses an AAC device, something I knew nothing about prior to her first experience with one. I sometimes feel inept and incompetent in this area despite having tried to research and learn.

My default brain offers me thoughts such as
-“I’m not doing enough to help her communicate.”
-“This device is too hard for her to use, maybe it’s the wrong one or I’m not modeling it correctly”

But, what if instead, I choose to think:
- “Everything we try is getting us one step closer to learning how to communicate”
-“I’m proud of us for continuing to try even when it’s hard”
-“We can figure this out together even if it takes a long time”

What is a “good mistake” you’ve had recently? Drop a comment below.

Sometimes I’m so caught up in the minutiae of daily life and parenting both a child with a rare disorder as well as a typical child, that I lose sight of the bigger picture.

What’s an easy way to break this thought cycle?

Asking bigger questions.

For example…

-What if you’re exactly where you’re supposed to be right now? (Both literally and figuratively)

-What if your child isn’t “behind” (even if they are labeled so as measured by age-related ability testing) but are exactly how they are supposed to be? (Even if you desperately want more for them)

-What if you are the exact parent your child needs today? (Even though you’re not perfect)

-What if nothing has gone wrong? (Even if you would do anything to cure your child’s disorder)

If your brain is anything like mine, questions like these are instantly rejected as preposterous and far flung until I’m willing to be open and curious. When I’m truly willing to consider how questions like these could be at least partially true, my brain suddenly finds plenty of supporting evidence. Evidence which I find encouraging and that pulls me out of my limited viewpoint.

Which bigger question can you answer today? Drop a comment below.

Looking for a quick mindset shift to implement today?

Try this. Whenever your brain offers you a thought such as

“I have to pick up my child’s prescription”

Notice that our brains treat this thought as factual, even though it isn’t. Treating our thoughts as facts in this way often creates feelings of obligation, dread, or resentment.

No matter what the action is, telling ourselves that we “have to” do it instantly makes it less desirable.

Instead, remind yourself that there is nothing you have to do (for example, I do not have to pick up my child’s prescription. There are many alternatives, such as having someone else pick it up, switching to mail order prescriptions, etc.)

That’s when your reasons for completing the action will become evident (for example, I want my daughter to have her medications to prevent seizures, which is a compelling reason for me).

“I’m choosing to pick up my child’s prescription”

This slight change feels so much better, connects me with my reasons for wanting to complete this action, and makes me aware of my freedom of choice which is empowering.

What thought can you shift from a “have to” to a “choose to” today? If you give this mindset shift a try, drop a comment below and let me know how it went!

I don’t know about you, but the idea of adding any new self-care habits for myself sounds exhausting, daunting, and unnecessary.

But...

A few years ago, I walked to a nearby coffee shop first thing every morning while on vacation. The sun was shining in this quaint downtown neighborhood full of charming houses, beautiful flowers, and friendly neighbors. I remember how well I slept, how good of a mood I was in but mentally attributed it to being on vacation (new surroundings, fewer responsibilities, etc.) and didn’t think anything of it.

Until a few months ago, when I was reading about all of the health benefits of morning sunlight. Specifically, 2-10 minutes of outdoor light before 10am.

Two minutes a day sounded doable, especially considering that it can improve sleep quality and provide many other health benefits. (Side note: having a child with a sleep disorder, I’ll try just about anything to improve sleep!)

And so began my new daily ritual. After the morning chaos of getting my older daughter on the school bus, I sit on our back deck overlooking a golf course with a cup of hot coffee for at least 2 minutes, weather permitting, often with my 3 year old cuddled next to me with a blanket over our laps. We listen to the birds, watch the clouds and sky, and do nothing. The best part? I’m reaping health benefits without having to “do” anything.

Slowly, this became one of my favorite moments of the day. Time permitting, I’ll now sit out there for 10-15 minutes, especially on the weekends. With daylight savings, I’m often able to watch the beautiful sunrise.

Why not try this tomorrow morning? Simply go outside for 2-10 minutes before 10am and see how you feel in a few days.

If you’re anything like me, it might be less of a dreaded self-care task on your to-list and might be a new favorite way to ease into your day.

P.S. Notice your brain offering resistance and a long list of reasons why you don't have time to do this and all the excuses why? Try it anyway. :)

I spent YEARS dreading, procrastinating, and if I’m really being honest, fearing an action I needed to take for my daughter who was born with a rare genetic disorder called Angelman Syndrome.

Creating a special needs trust to protect and provide for her future.

Today, my husband and I signed the final special needs trust. It’s done.

I dreaded the process of creating the document because I was afraid I would have to confront all of my worst fears about who will care for my daughter once my husband and I are gone.

In reality, the legal document consisted of words on a page. The lawyer said words when he answered our questions. There was nothing I needed to dread or fear if I didn’t want to. When I saw a phrase I was uncomfortable with, I asked for it to be changed. That’s it. Once it was finished, I felt silly for dreading it for so long because it was so....straightforward and simple.

Spending years low-key dreading and fearing discussions of the future created the following in my life:
-anxiety
-exhaustion
-overwhelm

Now that it’s over and was an uncomplicated process, I have feelings of:
-relief
-calm
-love and protection for my daughter

What was my takeaway from this experience?

Action > dread
Action > procrastination
Action > fear

What have you been procrastinating on? Whether it’s a decision for your child or yourself, or an overdue action, whatever it is, I want to challenge you today to simply:

Take the next step.

Often the feelings we use to justify procrastinating are far worse than taking the action itself.

Are you a mom to a child with a rare genetic disorder who has been wanting to try coaching without making a several months-long commitment?

My new coaching package launching today is for you. In the “New Client Limited Time Special” you will receive three 45-minute one-on-one virtual coaching sessions.

FAQ: This package is valid for new clients only. Sessions must be completed within 60 days of purchase. Please look at calendar availability prior to purchasing to assure that there you can find availability as my schedule is currently limited.

SPECIAL OFFER: Use the coupon code “RARE MOM” to receive 50% off!

Sign up by clicking the link in my bio, then selecting “New Client Limited Time Special”!

The most common objection I hear from rare moms to signing up for coaching is:

“I don’t have time for myself”

Sound familiar?

If so, maybe that’s the exact reason you could benefit from coaching.

My special introductory coaching offer launching tomorrow is especially for you. Check back tomorrow for more details!

Are you a rare mom who is intrigued by coaching but wants to learn more before signing up for a 6-week package?

Get ready for an Introductory coaching package special that is launching in 3 days.

It’s easy to have an isolation “pity party” when your child’s disorder is so rare that most doctors aren’t familiar with it.

When you are a parent of a child with a rare disorder, your brain loves to focus on thoughts such as:

-all of the things that make your family life different than other families
-all the ways your child is different from neurotypical children
-all of the ways the experience is isolating as a mom
-no one around me understands or “gets it”

In learning more about how our brains work, I understand that we are wired for survival and that fitting in with others (being part of the tribe or pack) is viewed by our brains as essential to survival.

So it’s no surprise that when we focus primarily on how our child’s rare disorder creates isolation, we can create a lot of stress for ourselves and at times even initiate our body’s fight or flight stress response. This can use up a lot of emotional energy, leave us feeling drained and exhausted, and easily spiral toward burnout.

So, what’s an easy solution?

If your brain wants to focus on the differences, let’s give equal air time to all of these equally true thoughts:

-there are so many other families out there struggling with the same or similar things
-all the things my child does have in common with others
-there are so many communities available to me (some may be online rather than in person) and I do not have to feel isolated
-I can still connect with others around me even if they don’t “get it”. I don’t need everyone to “get it” in order to connect with them.

Do you feel isolated as a rare mom? Drop a comment below.

Do you ever finding yourself thinking things like…

-I have so much to do today
-my child takes up so much of my energy I don’t have time for myself
-no matter how much, I do for my child, it’s never enough

If you’re like most of my rare mom clients, this type of default self-talk is common.

There’s nothing wrong with it and maybe even be some truth to it.

However, how do those thoughts make you feel?

Most of my clients are left feeling discouraged, overwhelmed, and disempowered.

So, what’s a quick, easy shift you can make today?

Use the word “and”.

How can I meet my child’s needs AND meet my own needs today?

How can I get the most important things done AND have time for myself today?

Your self-talk matters. And so do you.

I first learned about the “Squiggly Line Effect” in a blog post by Kath Younger in regards to nutrition. The basic premise was that in order to maintain a certain weight you need to eat slightly fewer calories most days to accommodate for the days you eat higher calories in order to not gain weight.

I find this concept very interesting when applied to caregiver burnout.

Most of my rare mom clients have intense (and often unplanned) periods of high-level caregiving (such as when a child is sick, in the hospital, has surgery, seizures, or another medical crisis).

How can we as caregivers accommodate these instances knowing that they will continue to occur (and in many cases, quite frequently) without creating burnout for ourselves?

The answer is simple.

We must create a baseline of daily living for ourselves as caregivers that is UNDER our daily max capacity.

In other words, if you know you will have unplanned days/weeks/months where you will be at caregiving 10/10 max capacity level during a medical crisis, you need to create a reality where the remaining days, you are operating at a lower capacity (such as a 4/10, 5/10, 6/10).

However, most of the moms of children with rare genetic disorders I know aren’t doing this. They aren’t even trying to do this. Many moms are trying to perform in life and caregiving and parenting at a 10/10 max capacity every single day. And this is setting themselves up for disappointment, frustration, self-judgment. Then, when the medical crisis does hit, burnout is right around the corner.

No one can operate at 10/10 max capacity 365 days/year without burning out.

So as mothers of medically complex children, why are we expecting ourselves to?

Going through a hard time right now?

Learning how to manage our emotions as rare parents often doesn’t come as naturally as caring for our rare child does.

I would argue that sometimes that is the hardest part. Harder than the physical demands, lifestyle changes, appointments, medications, insurance issues, pharmacy, and yes maybe even the physical exhaustion too (although there are times exhaustion is the hardest part).

Learning how to manage our emotions during the ups and downs of health concerns, fears, decision-making, hospitalizations, IEP’s, and so much more is something that few rare parents are prepared for.

That’s where coaching comes in. Helping strengthen the tools to manage our minds and emotional lives.

We all have to start somewhere. So, if that’s you today, here’s the tiny shift I want to offer...

Rather than “I’m having a hard time today.”

Try this on: “I’m having a hard time today, and that’s ok.”

Give in to feeling those negative emotions instead of resisting them. By giving yourself permission to not be ok, you can normalize and validate that it’s part of the human experience, and particularly the experience you are having today as a rare parent.

Are you having a hard time today? Drop a comment below.

I hate to be the bearer of bad news...

But

I have to tell you that balance as a rare mom doesn’t exist...

Unless

you define it for yourself.

So, before you keep telling yourself “I wish I had more balance” please take a moment to think about what that would look like for you each day, each week, each month, and even each year.

Let’s look at a different example. Many moms have a goal of feeding their young child a “well-balanced diet”...but what does that mean?

Some moms put pressure on themselves to make sure their young child eats a certain amount of fruits/vegetables, proteins, and carbohydrates every day, often feeling frustrated that they miss the mark, and making it mean they are a failure or even feel like a bad mom.

However...

Experts recommend looking at a well-balanced diet for a young child over the course of a WEEK, not simply each day, because each day will vary. That means, the two days your child ate only mac and cheese for dinner isn’t necessarily a failure, it could be part of balanced meals over the course of a week. Other children may receive "balanced" meals through a feeding tube while consuming the same things each day.

I personally don’t strive for balance. I strive to honor my core values, which may look different each day and week. In January, I took time away from home and kids to spend 3 nights away with my husband. Later this month, my daughter was hospitalized and I prioritized my time on her and her needs. After her medical needs were met, I increased my time with my other daughter, our household, and other commitments. Balanced? No. Exactly how I wanted to spend my time? Absolutely.

What does balance mean to you? Drop a comment below.

Envision your future self five years from now.

Who is she? How does she spend her time? How does she show up in her relationships, with her children, at home, at work, with friends, etc? How does she feel day to day? What is she wearing? What kinds of habits does she engage in? Where does she live? How is she similar to you now? How is she different from you now?

If you have 5 minutes, go ahead and jot these down on paper.

Most people spend the majority of their time reacting to things happening in the present or dwelling on the past. Which is fine. But in coaching, I find one of the most powerful practices that leads to some of the most exciting outcomes is spending an increased amount of time envisioning our future selves.

Many of my rare mom clients encounter resistance when doing this activity - this is 100% normal!

They might say:
“I have so many unknowns with my child”
“I can’t make any plans because my child’s health is so unpredictable”

And that might be true. It’s reasonable to expect that our children’s rare disorder will continue to offer frequent unplanned interruptions to our routines and schedules.

BUT

Guess what? You can simply build that into your dreams for your future self.

My future self is equipped to handle unplanned medical emergencies for my child with confidence and ease. My future self has an even better support system and community to weather hard times.

How is your future self different than your current self? Drop a comment below.

Ready to start becoming her (your future self)? Click on link in bio to work with me.

Did you know that thoughts are like clothes in a dressing room...

You get to try them on and decide which ones you want to keep!

Facts are facts. Our thoughts about them are how we are interpreting those facts. Our default mode is to believe the first thoughts our brains offer to us as true.

Sometimes this serves us well; other times, because of how are brains our wired (for survival, to seek pleasure and avoid pain, and to seek comfort and efficiency) our default thinking doesn’t serve us well.

For example,

I have several more appointments/meetings/commitments scheduled than usual this week, mostly related to my daughter’s medical care.

On default, my brain is offering me the thought:

“I’m overwhelmed”.

But, it’s not a very helpful thought for me. It doesn’t make me feel good. It doesn’t motivate me to take actions that would help my situation. Even if it feels true or is true.

Let’s try on a few different thoughts

-I get to choose which appointments and meetings are most important to me this week.
-I have 8 appointments and meetings this week and that’s ok.
-I have more appointments and meetings scheduled than usual this week and I can do hard things.

Which one feels better to you? Which one feels believable to you?

Here's the thought I am choosing to keep after trying them on all:

“I get to choose which appointments and meetings are most important to me this week.”

After choosing this thought, I felt empowered. I then took action to reschedule one appointment that wasn’t time sensitive and chose to keep the rest because they were important to me. I like my reason why and I feel better about the upcoming week.

Which thought would you choose? Drop a comment below.

My 7 year-old daughter with Angelman Syndrome has received physical therapy since she was 2 months old. After years using a stander and a gait trainer, she is now able to take up to a few hundred steps independently…

But, here’s the problem:

She does not visually attend to the floor she is walking on, which means that unless she happens to be on a flat, straight surface with zero obstacles (including changes in floor material/texture), she cannot safety walk independently at all.

So, what’s the solution?

In physical therapy we intentionally put obstacles (such as toys, furniture, people, etc) in her path and assist her in learning to navigate them.

Why do we make it harder for my daughter to walk by intentionally placing obstacles in her path?

Because I can’t change that the world she will navigate will be full of obstacles (if I could, I would).

So instead, I have to help her navigate intentional obstacles so that eventually she can develop the strength, balance, coordination, muscle memory, and neuropathways to do it herself in the real world.

In short, we intentionally put obstacles in my daughter's path to help her grow.

Now, how does this apply to my rare mom clients?

I hear many clients complain about obstacles in their path, such as:
-a broken healthcare system
-a broken educational system
-a broken health insurance system
-a world that does not accommodate their child’s disability

They’re not wrong. If I could change these things overnight I would, and that won’t stop me from advocating to make much-needed changes in the world.

BUT, what if we tried on the idea that we could also view these obstacles as opportunities for our growth, just like the ones for my daughter?

What if these obstacles were part of our training to help us grow into the next version of ourselves?

We don’t have to like them; my daughter certainly doesn't! We don’t have to choose to think this way, either. This is not toxic positivity. But, if you choose to try that new thought on, how does it feel?

How would that shift your perspective on the obstacles you face today? Let me know in the comments below.

FAQ: How do I know if I'm a good fit for your coaching program that just launched “Reduce Caregiver Burnout Now”?

If you are a mom of a child with a rare genetic disorder who feels burned out, chances are you could be a great fit for my coaching program.

Additional criteria include:
-ready to get started and complete 6 virtual sessions by the end of February
-committed to growth
-willing to be curious
-prioritize 1 45-minute session per week (in a quiet place, finding childcare may be required)
-internet access via Zoom during the limited EST hours available (listed on my website via link in bio)

Ready to learn more? Join me in my current 6-week coaching program, “Reduce Caregiver Burnout Now” by clicking on the link in my bio.

Tag a friend who may be interested in the comments below.