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Every day for me is an in-between day, by this I mean, not happy, not sad, not sure. For every
smile comes many tears. I do not want to sound ungrateful, because I am very grateful that my
first born Gabrielle is still with us today. I am grateful I was blessed with three more
beautiful children and a wonderful husband. I do not think that there is any one person that has
a perfect life and I would not trade mine for anything. It is dealing with the unknown the ups and
downs of Opsoclonus Myoclonus that make my days, in between days. If there were only some answers,
"what can I expect?", "will things get better?", "will this every go away?", "what exactly is
happening to my child?", "Does my child suffer more damage With the reoccurrence of symptoms?". I
think if one of these questions could be answers with 100% accountability it would not be as bad.
Every day for Gabrielle is a new challenge and even a new ability. Here again the happy and sad
combination. Though things do not come easily to her, she rarely shows that it bothers her. There
are those times when her body just does not cooperated or the words do not come out clear enough
to be understood that a screaming or crying fit will occur. A prisoner of your own body. One thing
that this has shown me is not to take anything for granted, even though I may not always show it.
Remember, everything no matter how little is a gift.
A smile, a laugh, to walk or crawl, for that matter to be able to move. To cry and wipe your own
tears away, or have someone love you enough to wipe them away for you. To hear the sounds a child
makes weather it be a word or just a sound. To know love in whatever form it comes and accept it.
To dream, even if the dream does not come true.
Being a mother I struggle with the in between of happy and sad. I glow as I watch Gabrielle sit
and play, I cry when I see her play alone. I am joyous that she is in school and tries her
hardest, it makes me sad that she has to try so hard. I love to see the smile on her face when
she has made a new friend, it breaks my heart when a person may not accept her and be her friend.
You see if they only knew her struggles and amazing triumphs they would know nothing but respect
for other human beings. I am the lucky one because she has touched my life and made me a person
I have always aspired to be, one that has compassion for everyone and everything just like my
little Gabrielle.
I can not help think of when I was pregnant with my son and was so sick both Gabrielle and her
sister Sara would stand next to me with their arms around my shoulder and assure me things would
be all right. This is the only time I see concern in her eyes, when someone else is hurting. She
endures a full day hooked up to an IV and does not protest when being stuck with a needle but
she is the first one to stand up for her sisters or brother when they are hurt or in trouble. Her
spirit always soars to a new height with each new obstacle. I had a hard time understanding this
at first but now realize you have to make the best of what you have because that's all you have.
To except that who and what you are is the greatest thing and with it comes all these incredible
abilities to touch others lives. It is in this and this alone that happiness comes. Because you
see, with being OK with yourself you are OK with everything around you, good or bad. With this
comes love.
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