The SpecialMoms Parenting Magazine 4th Issue | Page 12

Passing
the Torch

Life-Changing Conversati

A

s a parent, it’s your job to prepare
for the unexpected. Just like you
provide healthy meals, tailor learning opportunities, and insist on a
proper car seat, you also should plan for “what
if ” something happens to you.
For the last three years, I’ve spoken with people
about the importance of planning ahead for a
personal emergency and I feel this is even more
important for special needs parents.

I was surprised to learn that 70% of Americans
living with children under 18 do not have a will.
Seventy percent! I’ve surveyed hundreds of parents
and they told me they didn’t want to “tempt fate,” or
spend the money, or couldn’t decide whom to name as
guardians. Most people surveyed by Rocket Lawyer said
they just hadn’t gotten around to it.
Does any of this sound familiar to you?
When facing day-to-day challenges, it is often difficult for special needs families to understand all the
things they need to do to prepare for the future.
Understandably, deciding who would raise your child in
your absence is one of the most difficult decisions you’ll face as
a parent. No one will ever be as good as you and often planning for or
thinking about a hypothetical emergency where you are no longer able to
provide care for your children can be a stressful experience. But, as stressful
as it may be, it is important that you give instructions to those you trust with
the care of your children.
I am incredibly inspired by families who help each other persevere through the ups
and downs of life and I feel compelled to share little Ally’s story with you. This year I
had the great pleasure of meeting her aunt, Ashli Matus-George, and her mother, Kristin
Matus-Kelso.
When Allyson (Ally) was born with a rare genetic condition called Ectodermal Dysplasia, her
parents’ lives changed dramatically.
Kristin shares: “Between the emotional strain of labor and delivery and the shock of our newborn
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