The sight of
Ella standing by herself has long eluded us.
She was
briefly able to stand while holding onto something as a baby...a milestone that
never passed the assisted stage and in fact, never developed into the next
milestone.
Shortly after she stood while holding on to
something she was diagnosed with Spinal Muscular Atrophy. Our sights were
directed into another direction, one we never imagined.
That direction
included, but wasn't limited to, therapies, equipment, heartaches, sleepless
nights one after another, scary hospital visits, a knowledge of the
complexities of the human body, fundraisers, and miracles.
The picture
below is one such miracle.
According to Wikipedia, the first part of the definition for "miracle" reads:
"A miracle is an event not ascribable to human power or the laws of nature and consequently attributed to a supernatural, especially divine, agency".
My heart skipped a beat when I saw this in
person. On the one hand it was so natural to see a three-year old
standing on her own, on the other hand it was so foreign to see that the three-year
old was Ella. I wasn't even sure how to react as my mind was grappling
with the scene before me. Standing. By herself. Strong and confident. Actually
able to move her head which shifts her weight. And smiling with a pride
unmatched by any other I've witnessed in her.
Ella's
lifetime has been filled with miracles and occurrences that has
re-directed our sights of the future.
First, the
continued support that people, including family, friends, acquaintances, and
strangers show for Ella. Since the time she began showing signs that
something was wrong to this very day, people have truly been there for her and
our family. A miracle in and of itself.
Second, there's
incredible research being conducted to provide possible treatments and/or a
cure for SMA. The research to date has the SMA Community and their families and
friends more hopeful than ever before. The research and those who work
tirelessly on them are truly amazing.
Third, Ella
herself seems to be getting stronger in many ways. She works hard and
fights this disease with all that she has in her. She time and again
provides us with "WOW" moments. She ceases to amaze those
around her. With this kind of progress it is undeniable that her independence is
going to mean so much to her; for that is what she strives for the most in her
world...independence.
When I
look at these three seemingly separate "miracles" I cannot help but
seek a way to bring them together. As I do so I realize that they really
are part of each other. They are intertwined in a way that brings a rush
of hope for me and Lindsay.
Our goal the
past few months has been to raise enough funds to be able to provide Ella with
a house that will accommodate her needs, primarily her need for independence. It
would be less expensive (by about $75,000) to simply purchase a house with 4
bedrooms and complete the necessary modifications than to modify our current
home.
Now that
research is getting closer to finding possible treatments and/or a cure the likelihood that
Ella may survive longer than her initial prognosis is a real possibility. Her
survival, however, would most likely include the need for a modified house for
the rest of her life. A tall order to say the least.
Now that Ella
is showing strength in ways we couldn't have imagined, her need for
independence increases...if only on a emotional level. We must never
forget that we are to take care of her physically as well as emotionally
(and spiritually). I couldn't imagine her being able to do something but
in essence, being denied the opportunity.
Now that our
support system (namely our family, friends, the acquaintances, and
strangers) have grown to know and love Ella we are in a position to once again
reach out and humbly ask for assistance. Unlike before, however, this
comes with more behind it. For we find ourselves in a better position
than just recently on two fronts.
Our "Caring
for The Castens" concept that is dedicated to "Ella's
House Fund" has miraculously brought in over $17,000 that can be used to
provide the accessibility needs required. This is a miracle.
Our newly
formed "ellaWEAR Jewelry" which is also dedicated to "Ella's House
Fund" is specifically designed to be a win-win situation for all involved.
A host reaps the reward of knowing that they are helping to raise funds
for Ella far beyond what they could offer alone. One party raised close
to $700 in 2 hours!! Not to mention that the host also receives a
generous amount of free jewelry. In addition, the guests of the host
enjoy great deals, a wonderful experience, and a part in helping Ella. It
is an easy way to offer assistance, can be accomplished in person or online,
and there are absolutely no strings attached. It is simply a way for us,
along with you, to raise funds for Ella.
We have talked
about how it will be bitter-sweet to have to move. We have an abundance
of memories tied closely to this house. Memories that have shaped our
marriage, our family, and our personal journeys. Memories that carry joy
and sorrow, coupled with newly discovered avenues of life. It has been
more than a house, it has been a home. Adorned with love, filled with the
breath of sincerity, and will forever be the place where Ava, Henry, and Ella
began their lives.
We are hopeful
that the sharing of our story continues; we welcome anyone who might step
forward and host an ellaWEAR Party in the name of "Caring for The
Castens", we are forever grateful for the time, the prayers, and the love
that has been showered over us.
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If
you are interested in hosting an ellaWEAR Party either in person or online,
feel
free to contact us at:
