Category: Lauren

Posted on

Fill My Cup

Today is one of those days when I feel like I’m running on empty. Just like a car, if we don’t refuel it, it will run out of gas and be of no use. So what do we do when our car is empty? We take it to the gas station and fill it up.

Well today I’m on empty, the challenges and responsibilities of life have left me empty. It seems there’s never a reprieve, a time when I can just breathe.

With Mom’s passing, time as not healed my wounds. It seems the more time passes the more I miss her and the reality hits me that she’s no longer with me. The telephone calls every day have ended, just hearing her voice is gone. So I call out to God; be my comfort today.

I’m guessing that most people wouldn’t admit to having a down day. And that’s okay, but for me I like to be real and by doing so to help others. We live in such a world that expects perfection, a ‘me’ society, a cookie cutter mentality of what we are supposed to feel, think and act. I guess I was never drawn into that way of thinking. I am who I am, nothing or no one more, just me. Sometimes maybe it would have been easier if I just went along with the status quo. But I didn’t always chose the path most travelled. Many times I made my own path, I found my own way.

Living with a mental illness can so easily drain you to a point of exhaustion. Every day is a struggle, some less then others. But lots of days I feel like I’m running on empty. Many days I just have to stop and refuel, to breathe.

And then there’s a caregivers life; that means 24/7, 365 days year. I’m not complaining; I would do it all over again if I had to. But I can’t say it’s an easy life, it’s tough, challenging, isolating and exhausting. I love Lauren more then life itself and that’s why I gave up my own life for her. But what I gained was far above anything I could ever imagine. John 15:13 says, “Greater love hath no man than this, that a man lay down his life for his friends”(his daughter, his family).

So it’s those days when I’m running on empty, when it seems humanly impossible to keep going. But it’s those days that I have learned to look to an higher power. To a strength that is not my own, to a God that is in the driver’s seat of my car. I’ve been singing this song all morning and it sums up what I’m trying to say. The words of the song are “my” words, my prayer for today. He is faithful!

Like the woman at the well I was seeking, for things that could not satisfy. And then I heard my Saviour speaking, “Draw from My well that never shall run dry”.

Fill my cup, Lord. I lift it up, Lord. Come and quench this thirsting if my soul. Bread of Heaven, feed me ‘til I want no more. Fill my cup, fill it up and make me whole.

There are millions in this world who are craving the pleasures, earthly things of gold. But none can match the wondrous treasure that I find in Jesus Christ my Lord.

Posted on

Lauren’s Continuing Journey

July 3, 2023. Yesterday was quite the busy day but a successful one. Lauren’s Fundraiser Market may have been a lot of work but I think it was worth it. Sometimes you do what you have to do in order to make it. It was pretty exhausting just the same, especially having to leave for Montreal the next morning. But here we are, boarded our plane, waiting for takeoff.

Lauren’s journey begins. It was only a few weeks ago that we were in Montreal for Lauren’s trial surgery for her baclofen pump, which was quite successful. So now we are going back to have the pump permanently placed inside her abdomen. It’s bitter sweet really, we hate having to put her through yet another surgery but we know that this surgery will give her a better quality of life, less pain, less spasticity and better function overall.

The journey itself; from getting here to there, is very difficult on all of us. But I guess you do what you have to do, it’s not like we have a choice and really we would do whatever it takes to protect both our children. So it’s, Montreal here we come, for about the millionth time it seems.

July 6,2023. Here we are sitting in the waiting room of The Sick Kids Hospital in Montreal. Lauren just went into the OR for what’s to be a 3 hrs and twenty minutes surgery. The worry, anxiety and a million different emotions run through your mind. There are no words to really describe how you feel, you just wait.

It’s 12:50 pm, Dr Farmer just returned from the OR and came to the waiting room to speak to us. You literally freeze for a moment in time. The surgery went well and he was very pleased. What a relief! Now we are waiting for her to get settled into recovery and then we can see her. Needless to say, we can’t wait.

My cellphone notifies me of a text. It’s the recovery room, telling us that Lauren is now ready to see us. She’s still asleep when we get there. Only a few minutes later and she starts to move her eyes and she’s awake! Oh my, I wish I could trade places with her; I would. So hard to watch her lying flat on her back once again. But she really is a trooper; courageous and brave, a warrior princess for sure. So now the next leg of her journey begins…..

Posted on

Lauren’s Next Journey

“When a train goes through a tunnel and it gets dark, you don’t throw away the ticket and jump off. You sit still and trust the engineer” Little did I realize when I posted this quote by Corrie Ten Boom, to my Facebook page, that it wouldn’t be long after that my trust would be put to the test. Trust isn’t something that I do easily. To trust is to put your firm belief in the reliability, truth, ability, or strength of someone or something, now that is not easy to do.                                                                                                                                                                                                          A good example of trust would be; when we go for surgery and  are about to be put to sleep, you have no choice but to put your full trust into the medical team that they will do everything humanly possible to perform a successful surgery. Are we guaranteed beyond a shadow of a doubt that everything will go fine? No we are not! But we have to trust that it will. So we have to willfully surrender our very lives to the medical professionals and hope that all will go well. TRUST!

Just after I posted that quote, Lisa’s phone rang. Now it’s been months that we have been waiting for a call from the Shriners Hospital for Children in Montreal. The purpose of this call would be to notify us of a time when Lauren’s surgery would be taking place. The surgery itself would be the first of two, the other which would depend on the success of the first and would be done at a later date. This first surgery would be a trial surgery to determine if a baclofen pump would be suitable for Lauren. The actual baclofen pump implantation is a surgical procedure performed to permanently implant a pump that delivers baclofen to the spinal fluid to treat Lauren’s severe spasticity and dystonia that is refractory to oral medication in Lauren’s case.

I knew by the look on Lisa’s face, what this call was all about. As much as we were anticipating this call, you can never prepare yourself for it. We knew that this was just the beginning of another long journey that we so didn’t want to put Lauren through again. The call confirmed that Lauren’s surgery would take place on June 7th. You see, Lauren has already endured more pain in her short life, then most adults experience in a lifetime. Where is the fairness in this? Why do we have to expose her to this trauma once again? Why can’t God just release her of this horrible disease? Didn’t He say, “Suffer the little children to come to me and forbid them not…”? So many whys! Not a lot of answers. I believe we are well into our right to question. Who in their right mind would want to expose their child to pain?

But yet there are no other alternatives, no other choices! So we are left to, TRUST! Trust that the medical field know what is best for Lauren and that God knows best. Both of which require us to surrender our trust and faith into someone outside ourselves. Placing Lauren’s life into the hands of someone else other then our self. Now, that my friend,  is not easy to do. Being a Christian doesn’t make that decision any easier, doesn’t mean that we can’t question, and have concerns and worries. After all, we are human and God totally understands. Jesus himself questioned God when He said, ‘My God, my God, why have you forsaken me?’ WHY?

In spite of our human weakness, we realize we have to trust, once again, into an higher power.  For without trusting, what are we left with? Nothing, no hope, nothing. So we will trust and pray that everything goes well and this surgery will give Lauren a little better quality of life. It’s all we can ask for.

 

 

Posted on

The Unseen Caregivers

I just finished watching a documentary called, ‘UNSEEN’. It was a documentary that was so eye opening, encouraging and was produced to show non caregivers an inside look at the lives of parents of a disabled child. It’s not about being selfish  or about complaining but it’s stating the reality of the unseen caregivers. When you have a baby you have dreams for that child, to walk, to talk, to see. Then off to kindergarten, junior high, play sports, make friends, high school graduation. Then off to College and maybe even get married and have kids of their own. It’s just one big ball of dreams.

But then you have this child with confounded disabilities! What Now? Then your big glass ball of dreams just shatters to the ground and explodes into a million pieces. You immediately fall into a state of unbelief and panic. This is not a path that the majority of parents have to walk on but yet there are thousands of us out there; they are just UNSEEN, sometimes by choice, sometimes its easier for the ‘perfect’ cookie cutter parents to just look the opposite way.

Then you wake up one day and realize – this world wasn’t created for your child and that’s the hardest to accept. But you do what you can to give your child the best life possible because you love them, you love them more then your own life. You want nothing less then the best for them, in this imperfect world that was only designed for the ‘perfect child’. You keep going, you have to keep going because your child needs you but you realize it’s a very lonely path.

Home is supposed to be a sanctuary, but it is sometimes far from that. At times it’s more like a war zone. Some days you find you are hanging on by a thread. The screaming, crying, pain, uncertainties, the worries go on and on, you can’t stop it. We thought that as Lauren would get older  things would get a little easier, but it doesn’t, and this can get very overwhelming. It eventually turns into a constant state of anxiety for the whole family. You are living on the edge, you don’t know what a day is going to bring forth. You are in a fight or flight mode. It affects every area of your lives, your family, your marriage. It feels like some days you are just existing.

Our lives as caregivers never ends and will probably never end. It’s not Lauren’s fault, it’s not our fault,  sacrificing your life for another person  for 24/7, 365 days a year; you love them but that doesn’t make it any easier. Parent caregiving never stops, you know you need a break, but how are you going to get it, it’s next to impossible. We need to decrease the stress in our lives but how do we do that? We need to find a balance but there is no balance in sight.

The system has failed us as parent caregivers, we require mental health resources (I’m not just referring to ourselves but all parent caregivers) , more continuous care and respite. There  is no burden of child, if you care about a disabled child, you have to care for the parent caregivers as well. Most caregivers are not fine and are not doing well and that’s a fact. The older we get the harder it gets. We can’t get sick ourselves, for who would become our child’s caregiver?  Our daughter needs us, no matter what and that’s so overwhelming.

Our glass ball fell and shattered into a million pieces, many years ago now. As life become easier? Not at all. We feel just has overwhelmed now as before., maybe more. We feel just as alone as we did on that dreadful day that Lauren got her diagnosis. But maybe one day some of the pieces of that broken glass ball can be put back together. Just maybe! And the UNSEEN caregivers can see a ray of light!

 

Posted on

Accessible and Inclusive

Two words that really weren’t even in our (Lisa and me) vocabulary before we were blessed with our little angel Lauren. Little did we know just how well known these two words would become a part of our everyday life. And certainly not in a positive way but in a fight for your rights kind of way.

Let’s begin by defining what each of these words really mean, what they imply. “Disability inclusion means understanding the relationship between the way people function and how they participate in society, and making sure everybody has the same opportunities to participate in every aspect of life to the best of their abilities and desires.” While accessible means, “ a person with a disability is afforded the opportunity to acquire the same information, engage in the same interactions, and enjoy the same services as a person without a disability in an equally effective and equally integrated manner, with substantially equivalent ease of use”. Those two words would change the world for so many disabled persons if only they were put into practice.

Having a child with a disability opens up a whole new world of challenges that we never knew existed before. Ever since Lauren was diagnosed with spastic quadriplegic cerebral palsy, we have come face to face with the many obstacles that she will have to face; not because of her disability but the roadblocks that society and the world has placed in front of her. Roadblocks that make it near impossible for her to consider her world neither inclusive nor accessible.

They say a picture tells a thousand words. So let me paint you a picture. A little girl sits anxiously in her wheelchair at the entrance of her school playground, while the ‘normal’ kids run freely through the sea of pea stone that covers the floor of the whole playground. She sits there knowing that it would be impossible for her to maneuver her wheelchair through this sinking sea of stone. Then she thinks, even if I could get pass this gate, then what?? She realized that there’s not one piece of equipment that is accessible. Someone had forgotten about those two words, accessible and inclusive, while making plans for her school playground. After all, it’s her playground too! Isn’t it? So she turns around and leaves…

I could paint pictures on top of pictures of examples where Lauren was unfairly and unjustly misjudged because of her being in a wheelchair, enough to fill an art gallery. One assumption that I must mention; that being, she’s in a wheelchair, therefore she must be delayed mentally. The only person that is mentally delayed is someone who thinks this way. Lauren is one of the smartest little girls I have ever met; she could teach the wisest among us a thing or two.

I won’t elaborate any further, there’s just no need. I think you get my point. If we are going to have an inclusive and accessible society then we have a lot of work to do. But in order to change our world, we must put those in a wheelchair and with other disabilities in the forefront, not on the backseat. Maybe ‘walk’ a mile in their shoes. It’s then we will see change; accessible and inclusive will become a normal part of all our lives, none excluded!

Posted on

2020; A Year We Would Not Soon Forget

January 20, 2017 was my first post to my blog; www.harrislisa72.com. Life & Times Of  “The Tuckers”. ‘Living with severe depression and anxiety. Raising a child with cerebral palsy. The ups and downs of life; the rain and the sunshine’. A form of therapy that brought me through many very dark days. And here I am, January 2, 2021; posting again. Never in my life did I think this blog would last for years and would eventually be published into a book. And may I go further and say, books (two at the least). I can always dream; dreams do come true. This, I feel, will be a cause to pause from writing about my illness. As therapeutic as blogging has been for me, it has also been exhausting and draining; I’ve been misunderstood, stigmatized, traumatized and ridiculed. But that came with no surprise to me; it’s what having a mental illness does to a person. But I still had to write the truth, no matter what. What was meant to start out as therapy for myself, also became a means to help others, through my own experiences with a mental illness. I learned that, much like everything in life, we cannot change the world; nor did I think I could. But I did think I could help one person at a time. And if that meant putting my heart and soul into my writing (raw & honest) then I was willing to do so.  If it meant helping someone else, to save one life, then I was successful in what I set out to do.

In 2012, I had my last relapse, and was told by my doctor that I would not be going back to work; if ever. And here I am in 2021, still fighting my disabling, crippling, tormenting illness; an illness that has left me fighting for that one ‘good day’. But inside this physical body a war is still raging against my mental health. Over the past few years, life has introduced many triggers, many uphill climbs, many times when I just had to crawl. But I fight with what I have and there are times when that may not be much. But I fight!

When I look back over the past year, and wonder how I survived, I really am in awe that I am doing as well as I am. The year was filled with much sadness, loss, sickness, discouragement and I could go on, but what amazes me the most, is that we are still fighting; fighting against all odds.

When Lauren was diagnosed with Spastic Quadriplegic Cerebral Palsy in 2014, we knew we were going to encounter many challenges and obstacles; but we had no idea just how many; it was one thing after another, there was no end. We were told, when she was around one year old, that her vision was affected, they just couldn’t tell us just how much she was seeing. Being the naïve parents we were, we just  thought,  when she gets a little older she’ll just need glasses and that’ll take care of her vision. We were so wrong again.  When she was referred to the CNIB (Canadian National Institute for the Blind), we were literary in shock. We realized then that Lauren’s vision was not going to be corrected with a pair of glasses. My God, how were we going to get through this? How were we going to accept this? Sometimes you just don’t have a choice. Then she was referred to APSEA (Atlantic Provinces Education Authority) in March 2020. Their findings were what led to her being diagnosed with CVI (Cortical Visual Impairment). This has more to do with how the brain is interpreting what the eye is seeing. There is no cure per se. With intervention, improvement is possible, but not a lot of hope, in my opinion.

The year, 2020, began with Lisa’s surgery on March 16. This surgery was supposedly a routine surgery that would only require an overnight stay in the hospital. However, due to complications resulting from the surgery, Lisa was rushed back into the OR for emergency , life-saving surgery on March 17. This surgery resulted in  her being put in ICU on a ventilator, fighting for her life.

And if that weren’t  bad enough, the hospital was now on lockdown due to the worldwide pandemic of the Covid19 virus. Lisa had to experience this all alone because there were no visitors allowed in the hospital;  not even her distraught husband. You talk about an hell on earth, and that was exactly what we were experiencing. Lisa stayed in the hospital for eight days. Once released, we thought we were on the road to recovery; so we thought. To make a long story short, within five months Lisa was back in the hospital from August 23- September 3, due to more complications from that first surgery back in March 16, 2020; a nightmare for us all, especially our two children, Logan & Lauren.

Then, once Lisa was back home and settled in again, she had to find the courage to tell me that my sweet niece, Tonya, had suddenly passed away. Shock, grief and bereavement totally shot me down! The feeling of disbelief consumed my mind. How could this be? She was so young! Our whole family was lost in a sea of grief. A part of all of us was missing; that piece of your heart that you hold close to you, had now gone to Heaven.

It seemed like the year could not get any worse, but the pandemic was sweeping the world! Schools were closed for the remainder of the school year. Lisa was pretty much out of commission; what was supposed to initially be a six week recovery period, ended up to be a full year for recovery. And, here we were with a child that had CP, requiring 24/7 care; care that we had to provide on our own.  All the while, we continued to try to give our nine year old little boy as normal a life as possible.  In spite of it all, he was a trooper and we are so proud of him.

I had to believe that God was in the midst of all this chaos, because this was something we could not handle in our human strength. I prayed for God’s strength, comfort and protection to make it through these most trying times. He was and is faithful!                                                                                                                         

 

Posted on

The Silent Killer

I wouldn’t say that Winter is my most favourite time of the year. The freezing cold, slippery streets and sidewalks, back breaking shovelling of the snow and the claustrophobic confinement inside your home because of a monstrous snowstorm. None of which make for the ideal situation for someone suffering from chronic depression and anxiety. I would call Winter, ‘One big trigger for mental illness.’ And then there’s the relentless hours of darkness, where daylight savings time is at it’s cruelest.  We require, as human beings, a certain amount of daylight each day in order to produce enough vitimin D, which  in turn increases our mood and helps combat anxiety and depression; that’s not always possible this time of the year.

But I’ve been doing fairly well and by fairly well, I don’t mean cured. But it’s been managable for the most part, with a lot of daily work; it certainly doesn’t  happen naturally. But at least I can function, to a certain degree. This functioning level recently was misinterpreted falsely by someone’s ignorance and boldness. When she stated in an email that I was more then capable of working and that I shouldn’t burden my family, friends and Community with the financial responsibility of Lauren’s needs. Our hearts were broken and torn that someone could be so cruel and insensitive.

In reality I have no obligation to explain the status of my health to the general public. Nor do I need public clearance for when I go back to work. I think this would be my doctor’s area of expertise and the public should keep their opinions and comments to themselves. It’s really sad that I feel the need to even justify my illness. I guess that’s why it’s sometimes referred to as the ‘hidden/silent killer.’ It’s an illness that you don’t always see on the outside. And when I go in public I’ve mastered how to act ‘normal’ despite an abnormal illness. The public will never see my worst days; it’s those days I hide; I isolate. But in the end , it lends significantly to the public’s misconceptions about the severity of my illness because just maybe what they are seeing and what the reality of my illness is, are two different things.

I’m telling this because it’s easy to judge a person’s well being on what you see; and you certainly cannot diagnose the severity of my illness or the wellness of my being by what you see. But when you see me, you aren’t seeing all of me. I write this because I want people to understand that when someone looks okay on the outside, certainly doesn’t mean that eveything is fine on the inside. Sometimes we are so quick to judge someone else and to dictate what we think is right for that person. But if we don’t walk in their shoes, we have no right to judge that person. So if we can’t say something nice about someone, it’s best to say nothing at all. And for a lot of people that is near impossibe to do. I have to live with this illness, every fighting day of my life; as does so many others who are fighting this battle called mental illness.

I believe (I know) we have been the topic of conversation around many supper tables. I have never experienced such cruelty, gossip and backbiting in all my life.  And the topic of conversation being our fundraising efforts in order to give our six years old little girl, who has cerebral palsy, and who’s needs far outway the needs of a ‘normal’ child. We were told we were a burden to others and society. It’s attacks like this that make it near impossible for us to live a normal life. Life is hard enough as it is while trying to raise a child with a disability, 24/7 365days a year and no government funding. But then to have to deal with such cruelty, added stress and humilitation is beyond humane.

But we will move forward, with courage, strength and hope; despite adversity, hatred and insensitivety. We are so grateful for those in our lives who support us with their love, compassion and encouragement. It’s those people that help us each day to put one foot in front of the other, without them we could not survive. I am sorry that I have to write such a disturbing blog but I feel exposure is the best and only remedy.

Posted on

Nothing Short of a Miracle

Lauren’s Cerebral Palsy has been nothing short of a roller coaster ride. Many have been the ups and downs, the good and the not so good. The challenges, the uncertainties and the ever changing symptoms of her diagnosis. We have learned to take it one day at a time because we never know what looms around the corner.

Just recently Lauren made her fifth trip to the Children’s Shriners Hospital in Montreal for an assessment (August 12-14,2019). Lauren was assessed for two possible surgeries that could help. One being the Selective Dorsal Rhizotomy and the other the bacolofin pump. If you would like to know more about these surgeries, visit our website at www.harrislisa72.com and read; ‘Lauren’s Walk of Fame’.  After meeting with all of Lauren’s doctors and support team, it was decided that Lauren wasn’t a candidate because of the much improvement in her lack of spasticity. And the purpose for both  surgeries was to release some of Lauren’s spasticity, but as of today, August 13,2019, Lauren’s spasticity was not at a point where she would need either of the two surgeries. Nothing short of a miracle! This was good news; we did not want to have to put Lauren through any more pain and now we are hoping her spasticity stays at a minimal amount where surgery is not necessary.

Lauren’s biggest issue now is her dystonia; which is when a person’s muscles contract uncontrollably. This causes the body to twist involuntarily, resulting in repetitive movements or abnormal postures. She is presently on medication but the doctors in Montreal decided to put her on another medication, plus vitamin B6; both of which they are hoping to improve her dystonia. So ends her fifth visit and it’s back home to Newfoundland in the morning.

The plane landed in St.John’s around 6:45 pm and everyone was exhausted and looking forward to getting settled back home. We grabbed a bite to eat and were anxious to hit the road and get home before dark because of the fear of hitting a moose. Mommy was going to be the pilot for this ‘flight’ home, while Daddy sat in the back seat with Logan and Lauren sitting on each side; in the event that a fight broke out between the two and Daddy could go referee.

But before long, the two were fast asleep. Just like the two little angels that we knew they were. When suddenly Mommy screamed, ‘MOOSE’; brakes, swerve, hit moose, impact, loud bang, stop! My first thoughts were; the van is gone, I knew the kids were okay. I asked Lisa, ‘are you okay?’ She said, ‘yes, I’m fine! My next thought was, she’s in shock and doesn’t know she’s hurt. How could she not be? I heard the impact, I saw the moose; it hit the driver’s side. It made perfect aim for Lisa. But she kept saying, ‘I’m fine.’ The kids were fine; frightened but physically okay.

I told Lisa to call 911 for the police. Then once the kids settled, I got out to make sure the moose wasn’t dead on the highway and would endanger coming traffic. I turned on my cell flashlight and walked back the highway to search for the moose. There was no moose! How could that be, I heard the impact, the collision. The moose had to be dead on the highway, but he was nowhere to be found.

Well I thought, I’ll go back and see what’s left of the van. With my flashlight in hand, I scanned the front of the van, there was nothing! I was in disbelief and awe; the van was in one piece. How could this be? I heard, I felt the impact; this van was supposed to be demolished and all I saw was a broken side mirror, small cracks in the driver’s side windshield and a few minor scratches. UNBELIEVABLE!

I was reminded of the bible story of the three Hebrew men who were thrown into a fiery furnace by King Nebuchadnezzar, when they refused to bow down to the King’s image. And when the King looked into the furnace he said, ‘Did we not throw three men in the furnace, but I see four walking unharmed in the flames’. He looked in disbelief, he could not believe what he was seeing. And that was exactly how I felt when I looked at the front of that van, it was basically unharmed and so were it’s passengers. A miracle? I believe!

I will end this blog by simply repeating the words of this song, “To God Be The Glory, Great Things He Hath Done!”

Posted on

“Battered n’ Worn”

I have recently completed a painting called, ‘Battered n’ Worn’ (view on my Facebook Page: ‘Harris’ Artistic Designs’). It depicts a scene of an old, weather beaten shed and an overturned ‘punt’ that had seen better days. And the boisterous sea just uncaringly raging in the background. While I was engrossed in the actual painting of the scene itself, I really didn’t give much thought to what I would name the painting or what the painting was actually trying to say to me; not until it was competed! And then I stepped back and viewed it from a distance, it really told the story of my life and how I was actually feeling right at that moment. I had painted my life and it was ‘Battered n’ Worn’.

I have fought this crippling, disabling sea of depression and anxiety for far too long and it was starting to show. That along with ALL of the other winds and weather, had left me battered and worn. I was and is feeling much like that deserted, weather beaten shed; ready to crumble if I had to withstand just one more storm. How much can one withstand before the storms of life just leave you battered and worn; before the shed can take no more and just eventually crumbles beneath the beatings of the storms of it’s life.

If the only battle I had to fight was for my mental health, then maybe I could withstand that. But when the storms of life, and they are many, come beating you down and the winds are taking you off your feet, the rain as saturated your skin, right to the bones. The cold, cold air as left you numb, the raging sea is pulling you down into it’s clutches and you are drowning, gasping, gasping, gasping for air.

But you cannot keep a good ma down, no matter what others may think or say about you; you forgive and move on. You get up and dust yourself off, and we have had to do this many a times, and keep moving on.

One such battle that we have fought and I believe now is the time to let the world know how Lauren was discriminated against by Skate Canada, Skate NL and the CBNSC. I will give them the benefit of the doubt that it may not have been intentional but as defined by Human Rights: ‘Intention to discriminate is not a requirement to a finding of discrimination’. The full story can be found on our website: www.harrislisa72.com called, ‘I Want To Skate Like ‘Bruddy”. But the story doesn’t end there. I filed a complaint with the Human Rights Commission and won the right to file a ‘formal complint’ against Skate Canada NL. This was no easy journey, filled with anxiety, fear and intimidation. You see, Skate Canada (on behalf of Skate NL and CBNSC) hired a lawyer to fight their battles (an intimidation tactic I’m sure, hoping we would back off, not a chance). I followed through with the Human Rights procedure in settling this injustice.

This is what we were offered to keep our mouths shut and not proceed any further. Sadly to say, we could not proceed any further because we did not have the money to obtain legal counsel of our own and I could not fight anymore. But this is what we were offered and I am quoting Skate Canada’s lawyer, ‘My client is prepared to pay the sum of $2000.00 in settlement of this matter. These funds would be paid in exchange for a release which acknowledges no admission of liability on the part of my client. A condition of the proposed settlement is a confidentiality agreement. This proposal would not see the provision of an apology on the part of my client’. Obviously we did not accept the ‘bribe’ and because we really could not pay for a lawyer, we had to withdraw the complaint.

Did we lose? Not at all. First of all we did pass the requirements and was awarded an ‘Official Complaint with the Human Rights Commission’. That was the first hurdle and we leaped that one, without any problem. We knew we had a legitimate complaint. And although we had no admission of guilt on either of the three clubs involved; we ourselves knew by their actions of hiring a lawyer and offering money for a confidentiality agreement, that we had won.

I write this because it is not Lauren’s Cerebral Palsy that we are fighting against but an everyday fight for her rights as an equal, inclusive and accepted little girl that needs to live a happy life, in spite of the injustices, the stigma, the unfairness and lack of compassion that is still prevalent in our so-called ‘Society’ today. And this is just one example of what we have to deal with on a day to day basis. And yet we have to stay strong because the challenges that come with Cerebral Palsy alone is enough to ‘break’ any man or woman!

So today as battered and worn has we may feel, we will fix up that old shed and polish ourselves off and lift our heads high and be proud parents, that want nothing more then for their children to have the best life possible; against all odds. And we will not give up the fight, we are going to brush ourselves off and start again. It’s not a choice, we have to do it, if we are going to survive the raging storms in our  lives!

 

Posted on

Wings To Fly

When Lauren was diagnosed with spastic quadriplegic cerebral palsy at the age of one, little did we realize just what we were about to encounter. Lauren is now six and the battle still rages. It’s not just about the actual struggles that we have to encounter with Lauren’s physical, psychological and emotional needs that are associated with cerebral palsy. But it’s also the strain that CP puts upon the whole family unit. It’s the financial strain and stress that it places on the parents to provide even the basic needs for a disabled child. It’s the worry of being able to provide adequate care when your limited resources are just not enough.

Lauren’s kindergarten year has been anything but smooth. It’s now April 2019 and she is just starting to readjust to being in school. Lauren as spent all Fall and Winter recovering from two hip reconstructive surgeries, it’s only now that she’s feeling much better. Her transition back into the classroom is going really well, as long as we take it slow and steady.

One of the more difficult challenges would be the financial burden it places on  us. For example, Lauren requires much needed equipment and aids in order to care for her properly and safely. But we don’t qualify for any Government assistance whatsoever. So anything Lauren requires, we have to find a way to purchase it and that would be through fundraising. And we as her parents should not have to depend on fundraising to meet her needs; Government funding should be available for all disabled children, not just a few. This is why we have advocated so diligently on her behalf because she and others like her deserve every opportunity that every other child avails of.

This is why we have advocated through every means available including; social media, television, radio, internet, and newspaper. This is one of my post that I published recently on social media:

I don’t consider myself a political person, I really didn’t have any reason or motivation to get involved. To be honest, I rarely voted. But I will certainly make my vote count in this election! And it certainly won’t be for the present party. Right now I have lots of reason and motivation to get involved. When our now, six year old little girl got diagnosed with spastic quadriplegic cerebral palsy, little did I know just how involved in politics I would have to be. I have advocated on her behalf, to every Government Department and Level available to me; with absolutely no success. All we needed was some respite care to help us with Lauren who needs 24/7 care, all we got was, ‘you don’t qualify’. Yet here we were two parent on disability, caring for a disabled child; who could be more qualified for assistance? But to this present day we have received no help, no funding, no nothing from a ‘Disabled Government’! We are so desperate for help in caring for Lauren but our present Government as just turned their backs on us but not just us but a six year old little girl who is so deserving of so much more. Shame on our present Government and present MHA who’s last correspondence to us was (and I’m quoting her), ‘Here’s some federal info-‘ Need I say any more! This post stirred up a lot of interest and public awareness of what parents of disabled children really need. Shortly thereafter CBC Here & Now and CBC Radio did amazing stories of our struggle and fight for Government support.

Another great need would be respite care, for which we qualify for none. And sad to say, ‘we are not the only parents that are struggling for the same basic needs’. We are taking care of Lauren 24/7, around the clock care. The toll this as had on us has her parents is both physically and mentally draining to the point where you are surviving, not living. This is no way for anyone to live, both our children deserve so much better but sad to say, ‘both suffer because our Government will not intervene’. If Government is not willing to listen and to make changes to our present system, then these helpless children from all across Newfoundland and Labrador, will be deprived of the proper care that they require and deserve.

Maybe what is needed is for all parents with disabled children, who are not able to financially provide  and care properly for their children due to lack of finances, is to drop our children off at the Premier’s Office and say, ‘Now you take care of them and you decide which ones should ‘fall through the cracks’ (direct quote from Premier Ball). And maybe the MHA could offer him some respite care. But the message needs to get out there, loud and clear, that we are not going anywhere and we will continue to advocate for our children (speaking for all parents in the same situation as we are) until we are heard.

The road that Lauren is travelling, is a road with many twists and turns; you never know what’s around the corner, it’s a road that never ends. Cerebral Palsy is so unpredictable and ever changing, each day brings with it new challenges and new road blocks. But Lauren is a Warrior Princess and will fight for what she needs. She is strong, courageous and brave and will overcome any obstacle that is put in her path.  She may not walk (right now) but she does have wings to fly!