Momma Mia!

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My son said something to me tonight that resonated deeply. He said, “Mom you’re like Wonder woman. You always come to our rescue”. As flattering and sweet as that sentiment was, it hit me like a half ton weight and this is why.

Listen don’t get me wrong, I love that in the eyes of my child he thinks I’m pretty awesome. Hey, that’s like the ultimate win in my books! High fives all around! His sentiment struck a different chord though, that’s the “Super Mom” label.

I’ll be the first to admit, I for one am no “Super Mom”. In fact, I hate that label all together because it implies perfection and the inability to make mistakes. I’m sorry but, the path to motherhood is built upon mistakes and blunders. It’s not as if the day you give birth, you are also handed The Book of Motherhood: Answers to All Things Mommy. We begin learning the moment our baby is placed in our arms and we are responsible to keep this little human alive. Um ok, I don’t know about the rest of y’all,  but that was a profound “holy f*@#” moment for me. And just when we think we have it mastered, the circumstances change and we need to learn a new skill, technique, etc., etc., etc.

I don’t want my kids growing up thinking parents are perfect, holding us on some pedestals.  I want them to grow up seeing and loving a mother who has flaws and imperfections. A mother who is capable of making mistakes, but graciously learns from them. A mother they admire not because she had it all together, but because she didn’t and still tried hard to do things right. A mother who, above all else loved them. A mother who taught them, in the words of Eric Wilson, “to be human is to be beautifully flawed”. If I can succeed at this, then I think I will have succeeded in being a pretty good Momma. That folks is what it’s all about!

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What Lies Beneath

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Everyday and I mean everyday, is a quest to conquer equality for Olivia. Can you imagine what that’s like? Between making sure she receives the same opportunities as her peers, that she is given respect and her dignity preserved, that she be acknowledged and celebrated equally with her siblings (birthdays and other special occasions), that she truly be “seen” beyond the wheelchair, orthopedic braces, feeding tube, involuntary movements, etc . etc . etc. Every single day I strive for others to see what lies beneath Cerebral Palsy.

Olivia….

Olivia is so beautiful. She has the bluest eyes that sparkle when she looks at you. Oh and that smile….be still my heart. She can make the coldest heart melt with the warmth from that smile. Olivia is intelligent. She loves to read books about animals and silly, funny characters like those in many of the Robert Munche series. Olivia knows her primary colors and is beginning to recognize letters from the alphabet, just like other kindergarteners. Olivia loves to play and use her imagination. She enjoys playing dolls and pretend school, she loves board games like Candyland and Trouble, and making crafts with her sister. And most importantly, Olivia has feelings.

Olivia loves and she hurts. She knows what it feels like to be left out, believe me I’ve wiped away those tears one too many times. She gets excited for her birthday, well any birthday she can celebrate really; but what can I say, the girl loves a party! At the tender age of four, Olivia also feels her differences. I’ve experienced the frustration she feels when all she wants to do is run after her sister and brother, but her legs won’t allow it. Yup, those moments kill me on the inside, but on the outside I have to remain her cheerleader, encouraging her never to give up.

This folks is what lies beneath the package of Cerebral Palsy. My daughter, a person just like you and I. A little girl who wants others to know her and love her for the happy, funny, impish and oh so adorable kindergartener she is. To see her as we see her, to look beyond the package and to see the beauty of what lies inside.

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If I Could Go Back To That Moment

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I will never forget the day a stranger asked me if my daughter was retarded…

It began as a typical day, drop my son off to school then off to the hospital for Olivia’s appointments. As I hurried through the revolving doors, Olivia in one arm and her sister Kameron holding the other; I accidentally dropped Kameron’s bag of snacks. A lady bent down, picked them up and matter of factly said to me, “She is awfully big to be carried,  you should make her walk”, directing her statement to Olivia. Trying not to lash out at her; taking the split second I had, I decided to calmly explain Olivia having Cerebral Palsy and how she couldn’t walk. Thinking that would suffice,  I began to gather the girls and walk away, when the next sentence the stranger spoke would freeze me in my tracks. The lady asked,  “is she retarded?”

Completely shocked, I couldn’t find the words I wanted to say. I couldn’t speak; desperately I held back the tears, not wanting my daughters to witness their mother’s heartbreak. If I could go back to that moment this is how I would respond:

Retarded is a word that suggests a person’s  disability be defined as weakness or defect, a word that is saturated in ignorance. A word that should never be used to describe another human being! Let me tell you what my daughter is. Olivia is beautiful, smart, joyful, courageous, and loving. In her young life, she has overcome and endured such hurdles; you could not comprehend the strength she comprises. She is a remarkable little girl who has inspired me and many more with the incredible determination and positive attitude ingrained within her personality. You see, her disability or difference does not define her. Yes it sets her apart, but in a way that her unique abilities enrich our lives and the society around her. Individuals like Olivia, with special needs all comprise ability to learn and succeed.

The word “retarded” applies more properly to the ignorant, weak and defective conceptions people in society share with you. Have a nice day!

To everyone reading this, let’s spread the word to end the word!

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Let’s Celebrate Being Different!

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As a parent to child with special needs, days set aside to celebrate our children’s differences and to spread awareness are days important and close to my heart.  This month there are two such days; World Down Syndrome Awareness  (March 21), and Cerebral Palsy Awareness Day (March 25).

Four years ago I would meet one of the happiest, charming, and loving little girls, whose smile was like sunshine bursting through the clouds, spreading warmth to  everyone around her. Her name is Emma and Emma has Down Syndrome. For those of you that are unfamiliar with Down Syndrome, it is caused by a genetic occurrence that produces an extra chromosome.  Emma would form a kindred bond with my daughter Olivia,  who as most know, has Spastic Quadriplegic Cerebral Palsy. The first time Emma laid eyes on Olivia,  she walked over, bent down because Olivia was seated in her wheelchair,  and gave her the gentlest kiss on the forehead. No words were spoken, both girls being nonverbal, but the emotions and love passed between them was well heard.

Love knows no boundaries, and such love is what we all should focus on. Differences aside, we are all the same beneath our skin. Days like World Down Syndrome Day and Cerebral Palsy Awareness helps to break down those boundaries, teaching everyone that different is beautiful, it is love, it is acceptance, it is wonderful.

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Hang In There, My Ass!

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Olivia is 42 days post op. According to her doctors, surgery was a success and has already shown great benefit to her. What they don’t acknowledge is the continuous pain she has been struggling with and how she can’t get through the day without Tylenol around the clock.  The mornings that begin with Olivia waking and immediately vomiting. The extreme difficulty in tolerating her breakfast;  in which experience has taught me to have several towels nearby in preparation for a 50/50 chance of more vomiting. The excessive growth of granulated tissue build up around her surgical site.  The “beefy” water blister-like sore; growing from a hole inside my child’s abdominal wall.

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The sleepless nights because Olivia’s reflux has worsened causing her to choke on vomit  in her sleep.  The increased stress from this “new issue” affecting her body’s muscle tone drastically,  causing her to have increased painful, uncontrollable  muscle spasms.

Then there’s the “stuff” doctors can’t help with. The stuff we parents are left to deal with.  Let’s talk about that. Let’s talk about how for 42 days my husband and I have not slept. Nights are the hardest for Olivia; everything from severe spasms in her muscles and joints to, vomiting as a result of reflux or intolerance to her evening tubal feed. How about the added stress that stems from complete and utter exhaustion and there is no escaping it because it’s just the two of you; trying the best you can to “hang in there “. God damn it if I hear those words again,  I may scream! Hang in there? We’re hanging on with everything we’ve  got! How ironic that I find a coffee mug in my cupboard, depicting the exact slogan I have begun to loath. Well we all know where this is gonna end up.

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So how do we go on? Move forward? Why else,  we do it for her. Olivia has sustained so much these 42 days. Although her nights consist of a few hours rest,  she struggles with tolerating her tube feeds, and she endures relentless spasms throughout her body; our little girl always has a smile on her face. She’s my inspiration,  my strength,  my hero. She instills hope and I believe there HAS to be better days ahead!

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