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!
Sara Camak Coaching
Life coaching for moms of children with rare genetic disorders.
Operating as usual
As parents of children with rare disorders, there are so many times where situations arise that are completely out of our control.
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:
-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.
-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.
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:
Now that it’s over and was an uncomplicated process, I have feelings of:
-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”
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.
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