A lot can happen in three years. And by a lot, I mean an exuberant,
gigantic, monumental, extreme, life changing amount. When I first started this
blog I figured I would be able to keep up with it. I intended to journal the
life of my family, and my daughter. The funny thing about life is, it has a way
of getting in the way of the rest of your plans. If I was to be very honest,
the entrepreneur in me has way to may plans, and way too many directions I want
to go. There is a very great difference however between where we want to go,
and where we need to be. It is a decision I seem to struggle with often. I
often tell my wife, I feel my job is putting out fires every day. I move from
one emergency to the next, knowing that this emergency needs my time and
attention. I boast to the fact that whichever client, or customer needs my
attention will feel like they are the only person in my life at that time. The
problem? Ensuring the balance in my life so that my family feels as least that appreciated
as well.
No matter how important or jobs are, our family and our spirituality
is greater. Our connection to what is truly important must not only just stay intact,
it must thrive for our mental wellbeing, and for the strength of our family’s
bond. One of the most vital questions a person must not only ask but also
answer is: What is the most important thing in your life?
In the last three years since my last blog post, I have had
a business fail miserably, and I have another business that in which I am struggling
to make a profit, but is making friends and customers frequently. A great accomplishment
that I feel proud of. But, also a block that can cause stumbling.
Why all the talk about me? As a father, and a husband, I
think there is really no greater responsibility than taking care for your
family. My Wife Liana, and my Daughter Xinara are the absolute loves of my
life. Liana and I have been married now for 6 ½ years. Xinara is almost 3 ½ years
old. What has been happening?
I will start off with the simple statement, that Liana is
awesome. Liana works full time as a nurse, and double time as a mom of Xinara,
our wonderful daughter with special needs. Xinara has come so far. A far cry
from the proposed 3 to 5 months of life she was originally given at birth. She
has grown and is nearly 3 feet tall now and 22 pounds! Not only as she grown
physically, but even mentally, and cognitively.
Guess what baby is not? She’s not blind! And she is most certainly
not deaf. Her hearing is superb (relatively). I am not convinced it is acute,
but it most definitely is intact. Based on recent doctors opinions of how she
may not be able to tell direction, or able to tell if sound is coming closer,
or going farther away. It is how I also understand how people who use hearing
aids have had to adapt. They are not able to have the acute hearing of a
natural fully functioning ear. So it is very event that she can hear. She loves
the white noise of crashing waves, fans, blenders, static, and so on. We found
an app that plays white noise, and she has one of our old iPhone’s and we use
that to keep her happy often. She loves
it, and we love to make her happy.
As far as blindness goes, it’s quite clear that she can see
something. Not that she can see a lot of something, but she can see something.
It seems she can see better out of her peripheral vision, and if she has plenty
of time to try and focus. When she does that I swear, but cannot prove, she sees
her mommy and daddy, and I think her grandparents too. It is amazing to have
this level of ability from her, given her original prognosis.
Xinara has proven stronger than we could have ever imagined.
Though it still seems that she will never walk, crawl, talk, or have other
highly cognitive actions, she is able to grasp the pacifier from anywhere
within her sight, and bring it to her mouth on purpose. She can play with her toys on her car seat,
and put them in the position she wants them. I feel she will do more as times
goes on, and I feel that it is probably a great post for another time. This
post is becoming longer than I had anticeipated, but there is one more thing ( I feel like Steve Jobs…).
We have another little girl on the way! Due on February second,
we look forward to welcoming our newest addition to the family. We look forward
to the joys, and attempt to juggle the responsibility. The time allocation, and
financial aspect of this life has been quite challenging, and it has taken an
interesting turn for the more difficult. We have started a website
XinaraStrong.com, and I encourage you to go there if you can, read about the
upcoming bundle of joy, and the crowd funding movement we are trying to attempt
right now. The Xinara Strong campaign urges you to ask another important question
“How strong are you?” We are attempting to use this campaign as a spring board,
and a test in how collaboratively we can help families in similar situations
everywhere.
All support is appreciated!
