It’s OK To Ask

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The summer is winding down and as such it signals the beginning of a new school year. In preparation for this new beginning, I took my three children shopping for new clothes, backpacks, and shoes.

We ventured into a favorite store of my girls, not mine per say due to the narrow aisles, making it damn near impossible to navigate a wheelchair through it; but we managed pretty well considering. While looking through a table of t-shirts, a young girl probably around five years old walked over and stood in front of Olivia. She didn’t smile, just stared. I smiled at her and said “hello”. She looked up at me, expression unchanged, looked back at Olivia and then ran over to an elderly lady that I assumed was her grandmother.

“What’s wrong with that little girl?” I heard her ask while pointing in our direction. Waiting to hear the grandmother’s response, I seen her grandmother take her by her hand and say, “Shhh! She probably can’t walk. She looks disabled.”

I could feel my cheeks burning and could feel a lump form in my throat. I took a deep breath, gathered up my kids and walked out of the store.

Kids are kids and what they say is out of pure innocence. I have long known this fact. Questions I get from children curious about Olivia are usually formed this way. They don’t always have the vocabulary to choose “softer” words and that’s ok. Our job as adults is to teach them. We have the ability to instill compassion, awareness, understanding,  respect, and love. That’s what got to me. That’s what initiated the lump in my throat and the blood rushing to my cheeks. The child’s grandmother hushed her question, as if she had said a dirty word.  She failed to see that this action planted the seed of ignorance. She taught her my daughter’s difference was something to be ashamed of, something that should not be asked or understood. 

I would have been kind and gracious had she approached me with her granddaughter. I would have been all too happy to introduce her to Olivia and let her know how they were both close in age, probably with many similar interests. How both of them were probably entering kindergarten and I would have asked if she loved the show “Sofia The First” as much as Olivia. This child could have seen that they were not so different.

The stigma surrounding special needs is something we can rid forever. It’s ok to be curious, to want to learn more. When we educate, we eliminate ignorance. Talk to your kids. Let them know it’s ok to ask about the things that make us different. After all, what makes us different is what makes us all beautiful and unique creatures.

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Four Years Later And We Are Still Going Strong

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Four years ago we packed up our three kids and moved half way across the country. Besides the routine stresses of settling into a new home with three little ones; we had just received our daughter’s diagnosis of Cerebral Palsy. Along with the boxes and suitcases we packed, we also packed away all the emotions that came from this.The emotional time bomb that was lying dormant within us, would explode soon after.

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The raw, emotional carnage was something we could have never prepared for. The tears we shed, followed by bursts of anger and frustration that echoed throughout our four walls ricocheted like bullets piercing our hearts over and over again.

We were fighting a real emotional battle.

I have never experienced anything so terrifying, devastating and completely numbing as I did the day we were given Olivia’s diagnosis. I believe I went into emotional shock and I feel my husband would agree he did the same.  When something so profound happens, it’s as if our mind, body, and soul go into self preservation mode. Someone once said to me, “You are only given what you can handle.” I don’t believe this statement. I believe it is in our instinct to survive. We make the decision to either throw in the towel and give up, or we stand tall and face it head on. That’s all there is to it!

We chose to stand tall, face this thing called Cerebral Palsy and give our daughter every opportunity to the best life possible. We dealt with the grief, the anger, the frustration and found resolve.

Four years later, as I sit in my home; looking around at the four walls that were once witness to so much anguish, I see the love and strength that supports them. I hear my children’s laughter and take pride in my family’s happiness. I know there will continue to be bumps in the road along this journey, but I also take comfort in knowing we have the strength to persevere.

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It’s Gonna Be A Long Night

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It’s going to be a long night. How can I tell? Well, Olivia has only been asleep for about an hour and has already woke up with reflux pain.

For children with a Gross Motor Classification of 5 with Cerebral Palsy, or severe CP, in laymen’s terms; severe acid reflux is common. 

Because Cerebral Palsy affects muscle function and control, the soft muscle that lines the digestive tract and basically the entire gastrointestinal system, acts abnormally causing everything from digestive pain, vomiting and constipation.

Olivia has been on medication for GERD  (gastroesophageal reflux disease) since she was about a year old. The medication does little to control her vomiting,  but it is suppose to limit the amount of acid that can harm her esophagus.

This past February Olivia underwent a surgical procedure to have a G-tube inserted through her stomach wall. The hope was to get further nutrition into her, so she could gain weight. At the time of the surgery, she had been diagnosed as “failure to thrive”, meaning she was severely underweight for her height and age. Her difficulty in gaining weight has forever been associated with the severity of her reflux. Before the G-tube, it was a constant struggle to play “catch up” with her calories after an event of excessive vomiting. Once the G-tube was in and we began tubal feedings, we began to see great improvements in her weight gains. Within the first month post surgery, Olivia had gained four pounds! Previously that would have taken almost an entire year to see those results. You can imagine our elation to see our little girl thriving.

This past month Olivia underwent another surgery to have her heel chords released.  The last three weeks we noticed a significant spike in her reflux episodes resulting in excessive vomiting. After contacting her pediatrician, we decided to increase her dose of reflux meds. Within a few days the vomiting subsided and Olivia began sleeping through the night again. This was a huge relief on so many levels, however my husband and I suspected a possible weight loss in her and requested she be weighed. In those three weeks, Olivia lost one pound.

One pound doesn’t seem like much to most, but for Olivia; one pound could take us months to get it back on her.

To witness her in so much pain and not be able to stop it, is the worst situation a parent can go through. Together, she and I have spent many sleepless nights trying to ride out the reflux storm. Nights spent cleaning vomit off of her and her bed clothes, walking with her in my arms; rubbing her back and nights where the reflux is so painful, her little body becomes so tight and rigid that the spasticity of her muscles causes her entire body to go into a complete spasm, bringing with it more pain.

And yet through it all, this is what I wake up to each and everyday….

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I am marveled by my daughter’s incredible strength and perseverance. For a child who endures so much, she loves life and brings with her so much happiness and joy!

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She’s my inspiration….

How I Approached A Co-worker About Using The “R” Word

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We are all at fault of the occasional slip of the tongue. You know what I mean, the accidental swear word that slips out in front of your kids or the sometimes awkward “foot in the mouth” incident. We are human and we all make mistakes. But what if the word we are saying, holds a stigma of damaged, broken, delay and downright negativity surrounding being different.

The word retarded is used so casually by some in day to day conversation. You hear people saying it in reference to foolish behavior, music, television, etc., you name it, and I bet you have heard it used in many different contexts. 

Let me tell you where it was derived from. It came about as a means of defining an individual’s mental disability. It’s a word, in my opinion, that holds a great deal of disrespect.

I am a mother to a child with severe special needs and have had the “R” word said to me in reference to my daughter’s disability. I will never forget that moment, it will forever be burned into my memory. Thinking about it still turns my stomach into knots, but I have taken away a positive approach to educate anyone I hear using it.  This is exactly how I handled a co-worker who used it in a conversation with me.

I calmly interjected our conversation with, “do you know my daughter Olivia has Cerebral Palsy?” This was completely off topic, but I wanted her undivided attention. I continued to share with her our story of a lady who asked me, “is your daughter retarded?”. I explained how that word, the “R” word, holds so much disdain and disrespect and I would appreciate if she refrained from using it.

Never did I witness someone so remorseful. She felt terrible and apologized perfusly. I told her there were no hard feelings, but appreciated her apology. By sharing our story, my hope is it will forever be tied, in her mind to that word. I hope every time the “R” word pops into her mind, an image of my daughter follows. She will see her beautiful face, bright smile and loving eyes and remember how this one word disrespects, insults and holds a great deal of ugliness.

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And I hope every person who reads this post will learn from it, make a positive move forward, and spread the word to end the word! Let’s be change folks! Look at that beautiful face. Doesn’t she deserve to live in a world where being different shouldn’t mean being delayed, damaged or broken? Because each time you use the “R” word, whether or not you realize it, you are championing that notion.