Some Days I Would Rather Hug A Porcupine

Being a mother of a disabled child is like juggling flaming torches while walking on a tightrope 50 feet in the air. I embarked on an unpredictable and challenging journey that requires unwavering strength, flexibility, and unconditional love. This is an experience that will push you to your limits and it is all too common to leave you feeling unequivocally exhausted, anxious, burned out, disconnected and alienated from other humans. The constant worry, emotional strain, and physical demands can take a toll on even the strongest folks. There are never-ending appointments where you are navigating a complex healthcare system and advocating tirelessly for your child’s needs and rights. There are sleepless nights and perpetual worry for the well-being of your child. The effects of stress on caregivers are nothing short of sacrificial, with countless other daily demands and impositions on top of it all. It involves forfeiting personal time, your own needs, career opportunities, and even relationships to devote yourself fully to your child’s care. 

Fun fact: According to Psychology Today, surveys suggest that the divorce rate for US families with a child with a disability may be as high as 87%!

If that didn't make your jaw drop, you might should read that again. 

I personally do not find it surprising as this life is a rollercoaster of emotions, from moments of intense joy and pride in their accomplishments to periods of frustration and helplessness when faced with obstacles beyond your control.

So often I hear or read, “be sure to practice self-care”, “utilize your support network”, “take a family vacation and recharge” and “remember that even superheroes need a break sometimes”.

Where will that time for self-care come from? What if your support network doesn’t include physical help or watching your child while you leave the house for a few hours? Where will the money come from for a vacation? What if taking a break means putting you further behind on your responsibilities you were already unsure of how you would finish?

Let me see if I can make it more relatable to those who may not understand or get it. 

Imagine yourself having a full-time job with NO vacations and NO sick days. Your paycheck is overflowing baskets of dirty laundry that you have to make multiple trips to load into your car to take home because “direct deposit” isn’t available. You drive home after a highly busy and long day and must unload your "paycheck" and begin tackling your household needs, cooking dinner, some cleaning, feeding the dog and cat, packing the kid’s lunches for school the next day…..meanwhile, there’s thunder clapping so loudly it is causing your house to shake so your actively running around to keep things from breaking because that just means more cleanup. Then imagine it ten times worse. 

There you have it.

But through it all, being the mother of a disabled child teaches you what true strength, compassion, and perseverance really mean, molding you into a fierce advocate, determined champion and an unwavering source of support for your child.💚

So, if you are a parent or caregiver for someone with a disability, remember, you are doing an amazing job, even on those days when you feel like everything is falling apart faster than a Jenga tower during an earthquake.💪

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If you could go anywhere and do anything, RIGHT NOW, where would it be and what would you do?

#letstalkaboutit #navigatingtheignorance