Category: Cereabal Palsy

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Wear Red

It’s National AccessAbility Week (NAAW) 2024, May 26-June 1 and is a nationwide week of recognition that celebrates the many social, economic and cultural achievements of persons with disabilities. The theme for this year is: “Forward Together: Accessibility and Inclusion for All”. Then there’s the Red Shirt Day, this is an Easter Seals initiative and was first celebrated in 2019. It takes place on the Wednesday of NAAW each year. Red Shirt Day for accessibility and inclusion is a day when people across Canada come together and wear red to create a visible display of solidarity to show their support for disabled people and their families, celebrate the achievements of disabled Canadians and to pledge their commitment to help create a fully accessible and inclusive society.

This is all wonderful and we so appreciate this nationwide week of recognition. But we are not living in a perfect world and sometimes, more then not, this world can be cruel, discriminating, judgmental and uncaring. Accessibility and inclusion are for the most part not at the forefront of our society. We can say this because Lauren as been the recipient of such injustices on many occasions. The minute Lauren steps foot outside our door, or should I say, ‘the wheels of her wheelchair’; then the reality of just how inaccessible and non-inclusive our society and system really are. And this is why we decide on this particular Wednesday, to NOT wear red, in recognition of this injustice to disabled persons. The theme for this year; “Forward Together: Accessibility and Inclusion for All”, sounds great if it were only true.

In this blog I will certainly give praise and applause where it is do but I will also give you some astounding and shocking illustrations of just some of the injustices that we have encountered during Lauren’s years of struggling with this disability. I was just about to disregard this whole blog and throw it in the garbage. I thought, ‘what’s the point?” I have advocated for years and it seems I get nowhere; only exhausted and frustrated. But this will be my last and final blog on this topic, I’m tired and rather then putting my energy into a fight that I know I will never win; I will put my energy into giving Lauren the best life that I can, in spite of everything else.

I will list the non-profits and organizations that we are so thankful for and have helped us to make Lauren’s life just a little bit easier. I cannot elaborate on these because it would take forever. But we are so thankful for: Easter Seals, CNIB, APSEA, Rainbow Riders, The Shriners Children’s Hospital and The Children’s Wish Foundation.

But, sad to say I could write a book on the lack of accessibility and inclusion within our own province and society of NL. I will elaborate on just a few, just to give you an idea of what we deal with on a daily basis.

One very important issue would be accessible public washrooms. You would be amazed at the number of washrooms that are ‘not’ accessible, to a point where, if Lauren needed to use the washroom, then we would have to take her home or take her to another establishment that provided an accessible washroom that she could use. It is appalling to me, in 2024 that we still are dealing with this issue; sometimes it’s easier to find an “Outhouse”.

Then there’s parking!! OMG!! Yes you may find the ‘limited’ blue handicap parking spaces that are so misused it is shameful. One example, if I am driving our van and Lauren is ‘not’ in the van; that doesn’t give me the right to park in the blue zones just because I have the sign in my van window. I will park in a regular parking space. I could go on and on with examples of parking incidents but one is sufficient to make my point.

A very important violation of Lauren’s rights to accessibility and inclusion and is very near to our hearts are community and school playgrounds. The closest that Lauren can access her school playground is, she can get to the gate/entrance. When outside play is supposed to be a big part of our children’s curriculum; then where is Lauren supposed to play? The Dept. of Education puts absolutely no thought into inclusion and accessibility when designing playgrounds for ALL children. To my knowledge there is not a school playground in this province that is totally accessible. Very sad!

Many organizations, clubs, associations, leagues or specific groups are not at all accommodating if you have a disability. One such club in particular, knowingly discriminated against Lauren because she was disabled and offered us $2500(which we did not accept) to keep quiet. I have the written proof of this transaction but we could not bring a lawsuit against them because we didn’t have the financial means to do so. We had no choice but to cut all ties, communication and correspondence because of the immense about of stress that the whole situation brought into our lives.

As any parent would, no matter the ability or disability of your child; you want only the best for them. But when you have a child that is not on the ‘normal scale” of what society defines as “normal”, then you are in for a not so pleasant journey. You will be confronted with many obstacles, hurdles, roadblocks and barriers that you would have never otherwise encountered.

We will wear red everyday for our precious Lauren, 365 days a year!

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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.

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Mental Illness; the Joy Killer

I’m angry, there, I said it! Maybe angry is a bit of an harsh word but I can’t think of another that sums up how I’m feeling. This has been one of those days when I’ve needed to write but every time I attempted to, I couldn’t. I know if I started writing, I would never stop.

The thoughts and emotions were anything but joyous. I’m angry, angry at me for being me, I hate what mental illness has done to me; it kills my joy and leaves me empty. I need to fight back but I’m so exhausted. And then life itself has been more then any human being should have to deal with. We have fought two near death experiences where Lisa was intubated in order to save her life. This trauma has left us with scars that well last a lifetime. Then I lost my Mom, I loved her more then life itself. We only get one Mom and she’s gone; no second chances. It’s so hard to grieve when you have many other responsibilities that demand your every moment. And then two of our very good friends passed away, it seemed like death was all around us and we were losing those we loved much too soon.

To say the least; 2023 was not without its challenges, hurts, disappointments and pain. Then to top it off, Lauren had two major surgeries in Montreal. Surgeries that we struggled with for so long; were we doing the right thing? Was this in the best interest for Lauren? But what other choices did we have? None! This was early summer and now it’s the end of the year and we have faced so much disappointment. Right now discouragement invades our thoughts, we see little improvement and still so many uncertainties and yes we worry; with good reason.

Again today I was reminded of just how imprisoned I felt. Lisa had to attend our friend’s funeral alone because one of us had to stay home with the kids. It seems we can do very little as a couple. We are caregivers 24/7, 365 days a year. I’m not complaining, I’m just stating the facts; the reality of the life of caregivers. It’s tough!

I thought by now that things would have gotten a little easier but today just proved me wrong. It felt like my world was crumbling all around me and there was nothing I could do to stop it. And that reality stirred up some very unpleasant emotions within me. It made me feel once again that we were so isolated and that feeling of being alone in a very busy, big world just overwhelmed me once again.

I find it very difficult to look the other way and ignore the state of the world. The war in Gaza, the homeland of the birthplace of our Saviour, is left in ruin and war rages on with no, “Peace on Earth”. No cease fire for the Christmas Season. I believe there’s not much that I can do but I can pray for peace, we can all pray for peace.

In spite of all this turmoil within my own world and the world abroad; I still have to find peace and hope in that baby that was born in Bethlehem all those years ago. He is still in control, He still calms our storms or sometimes He just calms His child.

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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…..

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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.

 

 

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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!

 

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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!

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Our Reality

For the past fifty-six years now, I’ve attended the Academy of Life. And throughout these years I hope to think I’ve learned a thing or two about life itself. Many have been the ups and the downs, the joys and the sorrows, the good and the bad, the happy and the sad; you get the idea, sometimes life seems like a roller coaster ride and you just want to stop and get off. I can’t take this anymore, I’ve had enough. But we keep going, it’s life, we did not create our own reality. So we live life to the best of our ability with what we have.

So what do I mean when I say, ‘we did not create our own reality’. It most commonly means that we didn’t create the world in which we live, and this includes how we think and feel. We certainly live in a society that definitely tries to convince us that this is not true (and I respect that). But from my own life experiences, I find this to be my truth. No matter how I used the ‘power of positive thinking’ or ‘like attracts like’ (The Secret). Everything in my life didn’t come falling into my lap. If that were the case nothing bad would ever happen to us and we know that is not true. And then there are others who might interpret this to mean that if you think negative thoughts, bad things will happen (or think positive thoughts and good things will happen). Yes we can think both negative and positive thoughts but they will not dictate our reality. My thoughts, due to my mental illness, are sometimes distorted, lack of concentration, losing train of thought, memory loss; all which lead me to a disabling reality. So in short, it suggests that by controlling your thoughts, you can control your destiny. When in fact I am not always in control of my thoughts because if I were there would be no room for negative thinking. So I could ‘try’ to think positive thoughts but that is not being realistic, neither is it being a pessimist. Sometimes I feel we have a tendency to brush the negative thoughts under the rug because we just don’t want to deal with them. And by doing so they will just go away. I think not! It’s our way of coping.

There is a ‘LITTLE’ truth to this idea that we create our own reality. For example, if we’re looking for negative things all the time, sure enough, we will find them. Or, if we look for the positive, we will find it too. Therefore, we do have some control over that for which we look.

That said, the overall statement is hogwash!

What you think does not control what happens to you. Some people have very bad lives for absolutely no reason. They did not ‘think’ incorrectly nor is there anything wrong with their character. Similarly, some people have great lives for no reason. These people are not superior; they don’t ‘think’ in a better way, lets just say they are luckier.

Now I better back up with what I just said with some proof. Take a child who is starving to death in a third world country. That child did nothing wrong. That child cannot think their way out of their situation. That child will die, not through any fault of their own. They will die because life is cruel at times and unfair and they were born in the wrong place at the wrong time.

Me on the other hand was not born in a third world country. I was born in Canada, a fairly rich country. That doesn’t make me better than the child in the third world country. But it sure gave me an advantage over the child in the third world country and I did nothing to deserve it. Guess I was just luckier?

The people that think they can create their own reality, are people with good realities. They seem to think they did something ‘right’ to manifest these realities. We all have to take responsibility for our own lives; we have to do what we can with what we have. You might be fortunate enough to be born  into a rich family, you did nothing to make that happen.

Where am I going with all of this you may ask? Well, I was born with a mental illness. I have spent years of my life in a life-threating depression. There is no amount of thinking that could free me from this prison. And there is no amount of thinking that can get people out of all the horrible, unfair illnesses and life circumstances that strike people. So please stop blaming people for their own realities. I am not to blame for my own reality. I did not ask for this illness, no more then Lauren asked to be born with cerebral palsy. Your life could be going along wonderfully and then something terrible happens and there’s nothing you can do to stop it, it’s out of our control.

So while we don’t create our own reality, we do deal with reality in the best way we can. Life is not always easy, or smooth going, it’s certainly not always in our control. No matter what we are facing today, we can’t give up but we have to keep going and one day we will reach the finish line, supposedly we have to crawl, we will make it!

 

 

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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!                                                                                                                         

 

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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.