A Smile Is A Precious Gift

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Did you know we never knew if Olivia would be able to smile? Most parents experience their baby’s first little crooked, curled up grins at around six to eight weeks old. It’s the first real exciting milestone in our child’s life that signifies their reaction to something positive and becomes their nonverbal way of saying, “I love you”.  Well, for us, only time would tell…

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Olivia had suffered brain damage at birth and no one seemed to really know what she would be capable of…not even smile. As badly as I yearned for that crooked, curled up grin; I knew we needed to be patient and allow Olivia to develop and reveal her gifts at her own time. Time frames and milestones didn’t matter anymore.

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Olivia taught us so much in the early years of this journey. The biggest lesson was to learn to appreciate the things we took for granted everyday. A smile is a precious gift.

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At four and a half months old, something very beautiful and downright miraculous occurred.  Olivia’s little crooked, curled up grin began to appear. Her eyes sparkled and it was as if something switched on for the first time.

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Her smile has grown to be her greatest form of communication and has been the most symbolic statement to never give up hope.

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When Olivia smiles,  you can’t help but smile too…

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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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Olivia’s Lunch Dateā™”

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The highlight of my day, when I’m sitting down reading through Olivia’s daily journal from school, is when I read the sentence, “Nicholas came for lunch today”.

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Everyday, since the first day of school; Olivia’s big brother, Nicholas comes to sit at her table, gives her a fist pump and asks her how her day is going. At the beginning of the school year I had no idea he was doing this, until a teacher mentioned he had been coming everyday to the kindergarten classroom to spend time with her.

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My heart instantly melted and I filled up with pride. Nicholas was so casual in response to my emotions.  He said,  “I just wanted to check up on how her first day in kindergarten was going. She was really happy to see me”.

It’s this stuff you can’t teach your kids. It’s the deep connection and bond they form with their siblings.

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It’s how I know he will always have her back and fight for her when she can’t fight for herself. And it’s how I see the love and compassion he holds for her.

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It’s going to get better

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“It’s going to get better” is such a common phrase consisting of five words, that when put together, give us something to believe in, to hope for. People use it all the time when looking for inspiration to cope and survive their bad days.

I’m a positive thinker. I always have been. I believe that what you put out, good or bad, in some way always comes back to you.

Throughout the last three months our family has had to cope with a lot. Our youngest daughter Olivia recovering from surgery that led to weeks of sleepless nights, back and forth appointments to doctors and late night visits to the hospital. Our family van, “Old Faithful” breaking down in a big city, three hours from home; engine completely shot, leaving us struggle to find a way home, three kids in tow no less. In case you didn’t know, Sundays are by far the hardest day to not only track down a mechanic,  but also to rent a vehicle. Then the possibility of my husband being sent away with his job.

Yeah by this point, my positivity tank was running on empty!

It’s going to get better….I started saying this sentence over and over in my head until I believed it.

These five words kept me from breaking down and giving up.

Are things turning around? Yup. But stuff happens all the time in our lives. There will always be the ups and downs. Everyone has something they are dealing with. It’s not always going to come up roses!

We all have that opportunity to choose how we deal with it. It’s not always easy finding the strength or energy, we have to coax ourselves into believing we can handle what’s happening. I think that’s why the phrase, “it’s going to get better” is a wonderful little five word sentence that compels a person to have hope for the future. I know it sure works for me!

My Child Has Special Needs, She Does Not Get Special Treatment Because Of It

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I get the impression at times, from others that just because Olivia has special needs we should also be giving her special treatment. Well folks, I’m here to clarify that this is not the case.

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Yes Olivia has Cerebral Palsy and it prevents her from verbal communication as well it inhibits her ability to walk…BUT it never affected her ability to learn and understand what’s going on around her. At times we need to modify activities or assist her in managing daily tasks, but as for raising her to be a caring, compassionate and kind individual, we have not detoured away from our parental teachings.

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Olivia is raised no differently than that of her brother and sister; meaning Olivia is still taught right from wrong and at times she will get a time out if warranted. Olivia’s capacity to understand her environment is normal and equal to that of other four year old children her own age. She also exhibits the characteristic strong willed behavior of a redhead. We applaud this quality because it is this drive that will lead her to conquer barriers and hurdles that appear throughout her life. Do I overlook her temper tantrums that sometimes erupt out of this testament of will? No way!  She needs to learn like every other four year old that just because they scream for not getting their own way, Mommy isn’t going to give in to this negative behavior.

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Children with special needs need to be given the same opportunities, advantages, education, and life teachings as that of “normal” children. Under the Rights of The Child penned by leaders of the United Nations, all children are equal and are not differentiated based upon ethnicity, disability, or economical background.

Team Olivia

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Today I cheered from the sidelines while my children participated in a community 1 km kid’s race in support of our local Child Development Center. This was their fourth year competing in this event; only this time it was a little extra special….

My oldest son, Nicholas approached me a few weeks ago to ask permission if he could run with Olivia. He wanted her to experience something different than she had in the past; to race alongside other kids and experience the feeling of friendly competition.

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But it would be something so much more…

I’ll admit, I was instantly moved by my son’s heartwarming request to give his sister something he felt she was missing out on. I felt instant pride.

This morning,  as the crowds of kids lined up at the start line, eagerly awaiting the countdown, “ready, set, go”; my stomach echoed flutters of nervous energy. It didn’t matter to me what place they finished. They were a team and I knew they would motivate each other.

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As the race began and all of the excited children began to run, I could feel tears swell up in my eyes. I cheered as they ran passed. I caught a glimpse of Olivia’s face and seen the biggest smile come across her face.

Minutes passed and you could see the trailblazers break away from the pack. A few kids sprinted in, closing in on the finish line. First….Second….third place finishers crossed; then a few others approached. Then I seen them.

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Nicholas was giving it all he had and Olivia…well there was that smile again.

Nicholas gave Olivia her legs. For a moment she felt the speed and thrill of moving fast, into the wind; the sun shining upon her face.

Olivia was free.

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Difference Of Ability

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The biggest challenge I have faced as a special needs parent is getting others to see Olivia beyond her different abilities. It happens in every situation, out in public, around friends and family and even at school.

Often times Olivia is referred to as a “baby” or is treated very cautiously because others believe she will hurt easily or they feel she can not understand them.

I always correct these perceptions and draw attention to Olivia’s abilities.  When others, especially kids her own age, see she knows how to give a fist pump; their initial impression of her changes immediately. She becomes the cool kid. They begin to relate to her as a regular kid; which she always was, but they struggled to see.

I guess what I’m saying is, I wish people would just give individuals, like Olivia, a chance. We as a society have to stop looking at disability as being limited and accept it as a difference of ability. People do things differently everyday. I for instance write with my righthand; my son writes with his left, famous artist and writer, Christy Brown created masterpieces using his left foot.  My point is this, it shouldn’t matter how you express your abilities, there is no rule book of life that states we all need to be cookie cutter images of one another,  copying tasks identically. We are all unique individuals capable of unique and extraordinary ability.  Disability is a word that in its creation, placed judgment on another person simply by implying disadvantages in a person’s ability. I am passionate about changing the face and stigma around what others perceive of “disabled” individuals.

“People are pretty much a like. It’s only that our differences are more susceptible to definition than our similarities”~Linda Ellerbee

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Just Breathe

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Just breathe…

I’ve been saying this over and over to myself for quite sometime. Really since Olivia’s last surgery.

I keep waiting for the “it’s gonna get better, don’t you worry” days.

I’m tired of weekly, sometimes twice or more, appointments to the Children’s Outpatients Centre because yes, something else has gone wrong with the godforsaken g-tube! You know you’ve been a fixture there too long when the nurses know you by your first name and ask you about the family. I don’t even have to check Olivia in at reception anymore; they see us enter and automatically get Olivia’s charts ready.

Routine….oh how I miss you. When will you ever return? I long for the days when our lives felt stable and somewhat predictable.  These days brought solice and happiness because they meant no emergency appointments, only routine check ups; conversations that didn’t revolve around “seepage”, “granulated tissue build up” and “tolerating feeding”; and neighbors visited our house more than nurses. I dream of those days!

It’ll get better they say…well you know what I say, I say they’re full of shite! We are going on month three and we haven’t turned that corner yet to signify we will ever see those better says ahead. Stay positive and remember tomorrow is a new day…Please don’t. I may throat punch the next person that says this to me.

For now I choose to drown my sorrows in mounds of left over Easter chocolate. Don’t judge, I’m sure y’all are stress eaters too!

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She’s A Bit of A Daddy’s Girl

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There is an unspoken connection between these two, one that is only understood between a Daddy and his daughter.

To her, he is her wings. Whether he is lifting her up in the air, flying her around the room, shouting, “Here comes Super Olivia! ” in which she squeals happily; letting him know, “More Daddy! I love it”; or holding her steady and supporting her to stand. His encouragement strengthens her determination, giving her confidence to never give up.

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To him, she is his “little sweetie”. The little girl that showed such courage in her fight to survive. The little girl whose big eyes look at him like he is the greatest and gives him a smile that tells his heart how much she loves him.

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“My father gave me the greatest gift anyone could give another person, he believed in me”~Jim Valvano

The Fight

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What I want most is for Olivia to experience and enjoy being a kid. I want her to be able to have friends and play games.

The reality is, it won’t always happen. This is a truth I never wanted to face…

Olivia is the youngest of three children. Most of the time she is included in every game,  activity,  or shenanigans concocted by her older siblings; but…sometimes she isn’t.  Children live spontaneous lives. They rarely plan their next move. If Olivia’s brother and sister decide last minute they are going outdoors to play soccer, that means I can either take her outdoors to watch them or we choose a different outdoor activity that she can do. Most of the time Olivia has no interest in either of the latter choices. She wants nothing more than to run off with her siblings, chasing and laughing after a soccer ball. She shows her wholehearted attempt by tirelessly willing her body and legs to move. She becomes upset and usually breaks down crying. These moments are not easy for all of us. This is the side of Cerebral Palsy that I despise, and is the side we fight against daily!  CP gave my daughter a body that is more like a prison; and everyday,  we tirelessly work hard to help free her from it.

I look into Olivia’s eyes all the time. I check to make sure the “fire” is still burning inside. The fire that drives her to continue fighting! My job, our job as parents is to make sure the fire never goes out. I can’t fix her broken body, but I can enrich and nourish her mind and soul.

CP you may have won this fight, but you haven’t won the war!

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