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Shopaholic and Babies

Our life raising five kids...

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Life is Hard. Then You Die.

ADNP syndrome: one of life's real problems.
Zella at 19 months, just after receiving her ADNP diagnosis.

Sometimes the problems of this world are all just too much to bear.

You are laid off at a job you adore…
You get a call from the principal about your kid’s behavior…
You make a bad investment and are out hundreds or thousands of dollars…

The list of bad days goes on. And on. And on.

And then it happens.

You find yourself in a public space. Perhaps it is a doctor’s office waiting room, or an elevator. You overhear a story.

A young wife lost her husband to gun violence.
A son discovers both his parents are gone in a tragic accident.
A mother watches her daughter slowly die in hospice care.

Suffering

I grew up at the peak of wealthy, WASPy, American privilege. Despite being raised by nearly perfect parents, being grateful for what I have is not something that comes naturally…and neither is the idea of self-reflection. I fail miserably over and over in these departments, and looking back I am mortified.

I have a few excellent friends who keep me grounded when it comes to the idea of suffering. I look to them when my own wallowing becomes too intense…too deep for me to continue to wade through. These days my mind drifts in and out of thoughts of Zella and her self-injurious, sporadic behavioral episodes. Should we check her into an acute, short-term crisis center? If we do, will she be at increased risk of being abused like statistics would suggest?

And then I am reminded: ours are champagne problems.

Real problems are finding out that the baby you are carrying has a rare genetic disorder that is unequivocally incompatible with life.
Real problems are trying to determine whether your child has a routine cold virus or a shunt malfunction that will kill them.
Real problems are trying to decide whether to bring your dying baby home or keep them in the NICU for the remainder of their short life.
Real problems are a team of doctors telling you that your child’s rare brain cancer will kill them within weeks or months.

Experience leads to perspective

I am and have always been an advocate for living in many different locations. As adults, Jake and I have had the privilege of moving to a handful of different cities and states. Although obnoxious to feel so transient, we have found that our moves have lead us to so many unique relationships that have shaped our lives.

As an extroverted introvert, too often I prefer to live in my tiny box. If it were up to me, my box would be filled with familiar places and friends who look like me, think like me, speak like me, and tell me what I want to hear. It is convenient. Comfortable.

When I struggle against these type A, introverted tendencies and go to the trouble of befriending people with vastly different experiences, I find that it leads to more perspective. And perhaps more than perspective, these friends lead to an increase in empathy…in grace…in understanding.

My definition of suffering is narrowed…more precise. Does everyone have problems and struggle against adversity? Absolutely. But watching these sweet friends go through literal hell on earth puts my own suffering in perspective.

And I long for the day none of us will know this suffering.

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September 19, 2019 10:46 PM Amanda Leave a Comment Filed Under: ADNP Syndrome, Helsmoortel-van der Aa syndrome, Kids & Parenting, Moving

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Hey, guys.

I'm Amanda...a former music business professional turned HR representative who left it all to become a mom to five crazy kids. Although my primary job duties include cooking, baking, and chauffeuring, I'm a homebody at heart and *love* hanging out and watching hours upon hours of trash television. I'm glad you stopped by and hope you'll stay awhile! Read More…

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Hey, guys.

I'm Amanda...a former music business professional turned HR representative who left it all to become a mom to five crazy kids. Although my primary job duties include cooking, baking, and chauffeuring, I'm a homebody at heart and *love* hanging out and watching hours upon hours of trash television. I'm glad you stopped by and hope you'll stay awhile! Read More…

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