I look at my life and at times I don’t recognize it. The life I imagine when growing up looks
nothing like my reality. Very few of the
dreams I had have come true. This may
sound sad, but it isn’t. Some dreams are
better than my reality but in many cases my reality is better than the dreams I
had. That’s what I try to focus on each
day. I don’t consider myself to be an
optimist or a pessimist; I consider myself to be a realist. But I do
try to see the good and be thankful for all of our blessings.
Sometimes I wonder what our lives looks like to those
outside of our family. I hear from time
to time “you are amazing”, “I don’t know how you do it”, “you’re an inspiration”,
etc. I wonder what people see in me to
say such nice things. I can assure you,
I am not amazing or inspiring and I know you would handle this situation in a similar
manner if it was your life. I don’t feel
inspiring or amazing. I am just a wife,
mom, daughter, friend, etc. making the best out of an incredibly sad and
painful situation.
I have had people tell me to that I need to be more
transparent about our struggles so they know how to pray for us or how to help
us. Why do I always end conversation or
updates on Kate on a positive note? To
be honest, am not sure why. It’s just
how I do it. Maybe its because I know
there are people with harder struggles. Maybe
its because I hate leaving people with a negative impression and/or with sadness. Maybe its because our story is conversation
killer so sharing the joys and positive news makes everyone more
comfortable.
Tonight I will share with you some of the things we don’t share.
I will share with you the emotions that I
feel from time to time, that honestly make me ashamed of myself. Please no judgment or hateful comments. I am opening up in a way I rarely do.
Some days I feel like I am in a black hole. I want to run and hide. I want to scream at the world and transfer
some of my hurt and fears onto something else.
Some days it is all I can do to stand in a room filled with people and
not fall to my knees in tears. I find it
hard to watch kids Kate age participate in sports, dance, school, play dates,
etc. because I am reminded of all the things Kate can’t do. I hate going to IEP meetings and hearing the
goals the therapist and teachers have for the next year. They are so simple and appropriate for her
condition, but once again, scream in my face all the abilities that Kate has
lost due to her illness. I struggle with
celebrating a new life because I know that the new, precious baby will develop skills
by the age of 6 months that surpass Kate’s abilities. Am not proud of these feelings, but they are
real.
A few weeks ago I went to Meijers to get Easter candy and a
small gift for each of the girls. I was
in a good mood when I left the house but by the time I was done it was all I could
do to not cry in the check-out lane. As
I surveyed the candy options I struggled to find something Kate would
enjoy. Since she cant eat by mouth my
options are limited. I settled on
suckers, like I always do. I then
searched and searched for a meaningful gift for her. The soundtrack to Frozen and ???? Shopping for Lauren was easy. It should be easy for Kate too. I know Easter isn’t about candy and
gifts. I know Kate doesn’t care if her
basket is filled suckers and gifts, but I care.
I care because once again the disease wins. It has taken Kate’s ability to walk, talk,
see, eat, learn, play, laugh, sing, and so on.
It has taken so much from her and us.
It shouldn’t be allowed to take the joy out of holidays. But it does.
This disease has stolen so much from us. (as I write this I struggle to tell you all
the amazing things this disease has given us).
I left Meijer and felt as if I had my emotions in check once I loaded
the car with the items I bought, so I headed to Five Guys. I placed my order and as I watched the
employees do their thing my emotions took over.
As I stood by one of the tables the tears flowed. There was no stopping them. I was so relieved when my order was up so I could
cry alone in my car, which is often where I find myself crying.
Then there are moments like yesterday, where nothing in
particular happens but the feelings of sadness, fear, and loneliness hit me
like a truck and came unexpectedly.
Nothing set this off, it just happened.
I allow myself to feel these emotions for a moment but never for too
long. I think it is important to
acknowledge the feelings but because I have a family to take care of, an
employer that depends on me to do my job, etc. I don’t allow myself to dwell in
those emotions for too long.
Amazing I am not.
Inspiring I am not. Mother and
wife making the best out the life she and her family is living? Yes! I
appreciate the compliment but if you knew how dark and sad some of my days are,
you probably wouldn’t think that about me.
Perhaps, through writing this I have determined why I end
most of my conversations and updates on a positive note. It is easier to focus on the good than the
bad. It brings joy to my heart to see
the gifts we have and the blessings we enjoy.
So for those who wonder what its like to be us or have asked
me to be more open and transparent, this is a small glimpse into the darker side
of the disease. Not pretty, but
real. I hope you will join us in seeing
the blessings and not the sadness.
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