I have been absent. Because I am learning a whole new
life..That takes both lot of self-management and a lot of effort. And between all that I am still working..and being a mom..being a wife...a friend...a daughter....sleeping..eating.
It is hard to explain this layer of your child having all
the sudden a very long and hard health issue completely unexpected. You end up
living in a very different layer of the world that those who don’t have it..don’t
live in. and it won’t always stay like this-I won’t let it. But reality is that
for now I am separate. We are separate.
And now after talking to many many people in similar
situations and doing my research and reading…..I am not unique in feeling like
this. People who have kids who have health issues live in a bubble of their own.
It’s very different than many other types of hard times or crisis. It scores as
number one of the stress scale out of 20 crisisis. GreatL
Like at work-literally anyone I tell Beauty’s story too stops
whatever they are doing and helps me almost full time. Instantly. They all cry
when I tell them. They are sending me scientific research at midnight on Saturdays.
And they only do this for this type of issue. Only this.
Divorces have been announced almost weekly at work,
parents being ill, even spouses being ill, loss of jobs, and loss of homes,
robberies and fires. When you tell another human being your child is not well
and it will be long term…it’s a whole other ballgame. The world stops..both for
you and for those around you it seems. I never imagined this as I have never
been put into this world before until now.
And who I have relied on through this has been different than
my normal patterns. My people in this have been my work people. The scientists,
medial advisors, the doctors, the pharmacists, the finance guys whose brains
calculate the compliance rate vs the efficacy rate. And they have all held me
and hugged me and taken care of me too. They have been my people these last two
weeks and I could never ever have predicted this either. It’s funny what crisis
brings-if you open your heart. I have depended on about six of my work
relationships to a whole new level through this.
I am laser focused right now on making the right decision.
And we have made it now and I feel like I can breathe a little better. I feel
hope again.
I am still finding it a bit hard to live in the “real
world” right now but a bit easier daily. And the world I have chosen to live in
is work. Where the patient comes first. Where science is at its most innovative.
Where I have people who are literally geniuses wanting to drop everything else
and help me..for the patient..for science….for me..for her. Where this is a
case to be solved. They don’t ask me about her before this-or think what it
will be like afterwards. They don’t tell me about their kids-or their troubles.
They don’t tell me about their work, their happiness, the problems, their lives,
their vacations and their files. I don’t tell them about mine.
We focus on the patient. Because that is what we all do. That is why we all come to work every day. For the patient
and nothing else matters.
My heart is full of love and thankfulness for the people
I work with right now who are deeply taking care of me and my girl. Our world
has become a better place because of these three guys and these three girls. Who
could ever know.
