This weekend I saw the film “Finding Nemo” in 3D at the theaters – as I watched the movie again I started
realizing how much I felt like Marlin - his life did not end up the way
he thought it would at the beginning. This disease that turned us upside down, shook us to our core and
ultimately changed everything for me in a short 16 months has become a just
another part of our world.
Okay, I say “just” partly in jest – it isn’t "just" a part – all
things we do center on the ability for my daughter to function so it is a must
not a JUST I suppose. I am definitely the one that takes this on for our family
– therefore hoping that the rest of the family, my daughter included, does
think it is just a part of our lives. For me it is a “big” part but it is still
just a PART of our life – it isn’t our WHOLE life – 16 months ago I would not
have thought that.
We are busy people – we were busy before Type 1 diabetes exploded
into our lives – and we are still just as busy, actually busier because we
added being an advocate for Type 1 diabetes to our to do lists. We decided as a
family that we would not let Type 1 diabetes rule our lives we would face it
head on. This enabled us to better function in our world and we can help other
families, our schools, our community and organizations in understanding and ridding the world of this monster
that invaded our lives. I think now we even do all the things we did before
with even more gusto – in an effort to prove to the world that Type 1 diabetes
is something to pay attention to, but not something that ever has to hold you
back from anything. At least I am hoping that is what I am teaching my children
by choosing this tactic on this disease.
Am I better or worse off than I was 16 months ago – I don’t know (although I could do with out this disease completely – but that is
not a realistic option.) I have had to make some decisions I wish I didn’t have
to make – I completely changed the direction of my life to accommodate
the needs of the whole. Sometimes like everyone the selfishness of not being
where I wanted to be at this point in my life creeps in - but then this weekend
the movie made me stop and think about where I actually am now……..I am a
completely different person.
I am an advocate for a cause and for others. I was never an
advocate before and in looking at where I “should” be that path isn’t the one I
ever saw for myself, but here I am waving my Stop Diabetes Hand loudly and
fiercely. I realize this is a selfish task - it is for me – but not only for me,
it is for all those afflicted with this disease and all those families that one
day maybe, just maybe, won’t have to experience what we have had to experience
in the past 16 months.
I advocate for children in school with this disease. We are
lucky – others are not so lucky. I have become acutely aware of how it is
specifically about the SCHOOL, not the overall county administration, the state
or the federal laws – it is the school that makes the difference. We have a
great school and a great school system but that does not mean I will just sit
and be silent. There are still things that can be done and should be done to
ensure all children with Type 1 diabetes are treated fairly and equally at school.
If you ask my daughter she will say school is her number one issue – she does
not want to be perceived as “different” – what child does – so I will always
advocate for those that feel this way and do everything I can to have them be
safe and just like all the other kids around them.
I advocate for the newly diagnosed. Our family was there 16
short months ago. We felt overwhelmed, frightened, and unsure of everything. At
times we could not get our head above the water – the waves of change just kept
on coming at us – sometimes like one tidal wave on top of another. We had no
choice but to hold onto the life jackets we were thrown to us by those that
understood. It was those people and families I met after diagnoses that saved
me, literally from drowning in my own self doubt and worry. Those people and families
that were now swimming along side of me that made me feel like we could do this.
They gave me the life jacket that keeps me afloat. They made it possible to see
you can survive Type 1 diabetes and actually thrive with Type 1 diabetes. It
amazed me that occasionally they also needed to cling to us – that it was
normal to have issues and every day with this disease is different. I want to
be that for others now – someone that they can cling to when they have self
doubt and worry at 2am and feel the waves taking them under and helping them
ride out the waves so we can get back to swimming.
I advocate for people to understand Type 1 diabetes – and to
learn the difference between Type 1 and Type 2 diabetes. They are different. Because
of the misconceptions my daughter and I have had to deal with people saying
things that are inaccurate and make us feel like we have done something wrong.
We have not done anything wrong – we could not have prevented this – we could
not have done anything different. She cannot help her disease – she will never
be able to take a pill and exercise more to rid herself of her disease. She
will be forever on insulin therapy which is NOT a cure – it is a medical
treatment necessary for her to sustain life on a daily basis.
I advocate for a CURE for Type 1 diabetes.
We stand up and advocate for and with the American Diabetes
Association (ADA) for many reasons. Number one on that list is that it was the
Maryland ADA threw us our first life vest. They hosted a meeting in my area to
teach me about dealing with Type 1 diabetes at school – as soon as they met me,
they took an interest in ensuring our family had what we needed to get above
the water and stay afloat. They held us up at a time when we needed it the most
and helped us gain a direction to our lives that has forever changed us – they
made our whole family the advocates we have become today.
I may not be swimming in the waters I wanted to 16 months
ago, the hurricane that carried me to these new waters is over and the waters
have calmed (although we have our storms on occasion.) This water is good, it
is full of life, wonder, new tributaries and some waterfalls - but it is warm
with the love of those that now surround my life. I may not have chosen it or
thought I wanted to be here but I am going to do as Dori from Finding Nemo says
best – “just keep swimming, just keep swimming” and make these waters our new
home and keep advocating for them to get better and better with time.
"Just keep swimming, just keep swimming......."
"Just keep swimming, just keep swimming......."
Until there is a cure,
Jennifer Holdgreve
