We are the Halls! Jeff and I are both psychologists working
primarily with children who have neurodevelopmental differences. We have 3
children. Liam is 13, Ronin is 10, and Keira is 6. Keira came to us after a
seemingly typical pregnancy, but we soon learned that her brain development had
been severely compromised by a congenital infection of cytomegalovirus (CMV).
Keira cannot walk, talk, or hold up her own head. Her life has been complicated
by many illnesses and surgeries. Most recently, we’ve discovered that she is growing
deaf, so Keira is rocking some colorful hearing aids while I take a crash
course in hearing loss, cochlear implants, and sign language.
Keira has a beautiful smile, an effervescent laugh, and more
spunk than you’d imagine possible for a child with her limitations. Keira loves
nothing more than being with her brothers, swimming, and drinking coffee. Black
coffee. She has taught us so much about love and life. She helped inspire Idaho’s
first legislation to further education about CMV, which is more prevalent, devastating,
and preventable than most people know.
In spite of all the beauty we behold with Keira in our lives,
it is also chronically stressful and difficult. The best way I can think of to describe
our life is that it’s like having a newborn baby all the time. We are always
watching her. As a family, we always need help. The needs of the older siblings
often get pushed aside.
It is difficult to ask for help in the in-between times. We
are lucky to have friends and family who are there for us in crisis, like when
Keira is in the hospital. Corwyn’s Cause has made a welcome and measurable difference
in our lives. Corwyn’s Cause has truly provided our family with things we didn’t
know we needed. Monthly housekeeping frees up a lot of time and mental energy
for me to do things with my family that would go undone otherwise, like
swimming or an ice cream date with one of the boys. Corwyn’s Cause has provided
us with gift cards for St. Luke’s, which pays for meals in the cafeteria when
Keira is in the hospital or even a mocha to treat myself on busy appointment
days. One of my favorite gifts from Corwyn’s Cause was the Christmas lights they
put on our home last year! Christmas lights were something we’d always wanted
to do, but it was so far down the list of priorities that it never got done.
What a delight for us to see this festive display every time we came and went!
Corwyn’s Cause reminds us that there are other families out
there who understand what we are going through, even in the relatively steady/”normal”
times. And, through Corwyn’s Cause, we have access to those families. We can
message through Corwyn’s Cause on facebook, to get moral support or to find a
way to give our used equipment to someone who needs it, or to get advice about
where to get the best size 7 diapers in the valley. Families who are associated
with Corwyn’s Cause, I’d say, are families who are all dealing with the unique struggle
and beauty of raising one or more children whose lives are very limited. We are
families who don’t want to be alone, ostracized or forgotten. Neither do we
want to be pitied, patronized, glorified, or smothered in platitudes. Corwyn’s
Cause gets it because Corwyn’s family is one of us. Corwyn’s Cause meets us
where we are. No obligations. No apologies. No strings attached. I know of no
other charity of its kind.
Finally, Corwyn’s Cause hosts events for us to all come
together. Events for the moms. Events for the dads. Events for the whole family
that are inclusive of the typical siblings, too! Keira loved the summer event,
where some BSU athletes RAN Keira, in her wheelchair, across the finish line of
the race track they had set up. At the winter party, she loved getting to be so
close to the live musicians that they could sing in her ear. What precious
opportunities Corwyn’s Cause has provided. We can’t thank you enough.
-Bekah
Hall
Black coffee!! Go, Keira. What a great organization!!
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