One Helluva Week…

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Olivia has been experiencing full body spasms and severe reflux episodes this week. My tears have dried, but my heart is still carrying heaviness. Watching your child battle chronic pain is the absolute most unimaginable helplessness a parent could ever experience.

This week, I have held my nine year old child in my arms, gently rocking her, as she sobbed. As her eyes searched mine in a desperate plea to alleviate her pain, I broke and sobbed because the medication I gave could not numb the pain, the midnight stretching and massaging of her tightened muscles would not sooth, nor did the tender Momma cuddles bring reprieve. I cried harder as her little body wretched with each agonizing burst, and there was nothing I could do to soothe her pain.

My beautiful sunshine girl with a smile that could take your breath away, lives with chronic pain every single day as a result of Cerebral Palsy. Most days we can help her concur it, but days like this last week, these days the pain overcomes our brave fighter until she passes out. These are the days I hold her wrapped in my arms, her forehead wet and cheeks flushed from fighting through the pain. Her eyes close for a moment, as she folds in towards my chest and I wipe her dampened bangs from her eyes. There is little I can do during these episodes, but I know when they end, in my arms is where she wants to be.

Exhausted, emotionally defeated, and utterly shattered. These are the days I question why my little girl must endure so much. From the moment she breathed her first breath, Olivia has lived a life with chronic pain. Many who know her, see a child with a bright, charismatic personality and a smile that can take your breath away; and all of this is true, however, she also endures more than any of us could ever understand.

As I type this, I still sit at her bedside watching her sleep. Finally, her body is calm and hopefully will rest. She is drained. I’m drained. I know I should go to bed, but my heart needs to be near her longer. As she sleeps peacefully (for now), I cherish each calm moment she can dream. I pray that tomorrow will grant her grace.

The Voice Of My Nonverbal Child

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In the five years I’ve been Olivia’s mother, I have learned that my voice is an important tool in my daughter’s well-being. With it, I hope to help Olivia obtain opportunities that may never have been presented to her and to assist in the assurance of equality.

As parents we strive to do what’s best for our children. Ideally we make sure they receive the proper balanced nutrition in their meals, practice good hygiene, be mindful of their manners, finish their homework, be respectful of others and be kind, loving people. We hope through this guidance that they one day will grow to be confident, good natured members of society. As a parent I value all of these ideals, but one ideal I didn’t list; which not many parents think about, is equality for their child. Parents to children with special needs have this on their minds everyday.

This day in age, equality should be a given, not a goal we wish to achieve. It shouldn’t have to be a topic of debate, but we see it everyday on the front pages of our newspapers, headlining stories on the news and trending on social media, instances in which individuals’ right to equal education, equal opportunity, equal employment, etc, etc, has been threatened.

I want a world for my children that offers opportunity for each of them. Neither of them should be scrutinized due to gender, disability or how they live their lives.

Olivia is only five, but in her five short years, myself and husband have had to be her advocate; her voice. Why? Because our daughter is disabled. I cant tell you how much I hate that word. The prefix “dis” promotes negative and an unwillingness; as if being different were something that were ugly or of burden; but it’s the definition society assigns to those who have limited abilities or differences in their physical appearances than that of our own. I recently heard the term difference of ability and thought how it promoted a more inclusive feeling. How the implementation of this term could potentially have a positive impact on how individuals with different needs are viewed. We all have different abilities, this is no different from an individual who relies on a wheelchair to move around or uses communicative technology to speak. Using these tools is just that; they are tools to assist that person in life. Would you ridicule someone for wearing glasses and limit their right to equality because of this? Of course not. Then why do we do so for those who also rely on assisted devices? I bet you never considered eye glasses to be an assisted device.

We have had to strive for funding for programs, equipment, educational opportunities, and developmental support. Everyday I wake up wondering what challenges, road blocks, or walls I will face and how will these challenges prevent Olivia from reaching her full potential or achieving the goals she sets for herself. Will she grow up in a world where she is viewed equal to her peers? One day I hope this to be true. For now I will continue to be her advocate, her voice and her biggest fan because I believe this world can be better for our children.

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Ah-Huh, I Use To Be One Of Those

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Before Olivia came along, I was that parent. You know the one. The one who looked at other special needs parents and thought, “I don’t know how you do it”. The one who gave the “look”. You know which one I’m talking about. The “I’m so sorry for you” look.

(Ugh…how I despise that look)

The one who admired the amount of patience you had. How you so graciously answered questions about your child, never showing an ounce of frustration for answering this particular question the one millionth time for probably the one millionth person that stopped you to ask it.

The one who felt embarrassed for you in the restaurant, when your child yelled and created a scene while you were trying to have dinner together as a family.

The one who never thought she would be venturing along the same journey as you.

Hi, how the hell are ya?

So this is what it’s like to be a parent to a child with special needs….

Why did I pity you?

How come I was blind to see the joy you were experiencing?

How did I miss the beauty and sparkle in your child’s eye?

Why did I consider your life to be burdened?

I am so sorry.

How ignorant I was.  We are conditioned often to view from the outside looking in that we miss the beauty of which surrounds it.

Becoming a parent to a child with special needs is like adding color to a life that was in black and white. Olivia breathed a breath of life into ours, different from that we had known. Through her eyes we have learned to focus on the importance of hope, love, patience and kindness. I discovered a strength I didn’t know I had, and a will to fight at all costs.

I see “those” parents now.

I feel the stares our family receives when we walk into a restaurant. When I make eye contact, their eyes nervously try to look somewhere else.

I get the questions now too. I’m gracious and pleasant as long as the individual asking is respectful and courteous.  I believe if stigma surrounding special needs is to change,  it’ll be us parents changing it by spreading awareness and advocating for our kids.

To all the rest of “those” parents from one parent who used to be one of you, forget whatever you thought you knew about special needs parents. You are wrong about us! We have the family we always wanted and would never change it in a million years. Our kids are not burdens, they are our love, our lives, our joy. We may have days in which we look tired, burnt out and downright flattened; these days tend to appear after a battle we have had to fight in a world that doesn’t make it easy for our children to be accepted; so forgive us if we come across agitated or anxious. We need support and sometimes a shoulder to lean, but remember we pride ourselves of standing on our own two feet; we don’t need your pity, just an ounce of compassion.

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