Tag: cerebral palsy

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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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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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“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!

 

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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!

 

 

 

 

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The Seasons Come And Go

Winter as finally passed and Spring is so desperately trying to unfold. With Spring comes that feeling of new life, new beginnings, fresh hope and a warmth that inspires the soul. The cold, chilly winter season as reluctantly become another memory in time. Much as happened; good and bad. But yet we have survived another season; another season of life.

I can’t honestly say that the past several months hasn’t come without it’s tough times. It’s been rough on all of us, to say our life is simple, would be an understatement. Living with mental illness and cerebral palsy would be enough to send any family’s life into a whirlwind. And lots of days that’s what it feels like; you are living in a whirlwind. Where life is spinning out of control and you’re fighting to hold the pieces together. Some days you may feel like you’re winning and other days like you are loosing the fight.

With my mental illness, I must say it’s still an everyday struggle but most days now, I feel it’s a struggle that I am winning. I guess it’s like someone who has diabetes, they still have it but they have it under control. And for me with my depression and anxiety, I feel on most days I have it under control.  But each day still requires a lot of self talk, keeping my thoughts from becoming distorted and unrealistic, trying to keep life as ‘normal’ as possible and live in the moment. Is this easy to do? No, not at all but if I am going to beat this living hell, then this is what I have to do on a daily bases, if I am going to survive; I can never let my guard down. And maybe with this new season of Spring may come new life, new hope and new beginnings for all of us.

Lauren has certainly had her share of pain, hurt and uncertainties. The cold winter months have found her spending most of it in bed, recovering from two major hip surgeries, that can only be described as horrific. No child should have to suffer what this child as endured and will still have to endure in the months to come. Her first hip surgery was performed in May 2018, the second was done September 2018. It’s now April 2019 and it’s only now that I can say that she is bouncing back from her ordeals. She as missed majority of her school year in kindergarten. We are now in the process of gradually introducing her back into the school setting, which as to be done slowly, cautiously and at her own pace, due to her high levels of anxiety. But she is doing fairly well and her school as been so accommodating during this transition period and for that we are so thankful.

Life for us as parents of a disabled child will never be the same again. And I don’t say that in a selfish way but in a realistic way. I know that the only parents that will truly understand what I mean; are parents that are privileged to have a disabled child. Lauren may be six years of age but right now we still have a six year old baby. We do the exact same things for her now as when she was a baby. Except now it’s harder because she as grown to be a big girl, who requires constant lifting. And the 24/7 care doesn’t end and doesn’t get any easier.

I believe that life for all of us at this season of Lauren’s life is a little tougher. Lauren is so aware, so intelligent and so full of questions; questions that we don’t always know how to answer. For instance, yesterday we were going outside and out of nowhere she asked, “Daddy why do I have to be in a wheelchair?” I’m sorry but I wish that no child would ever have to ask that question. She’s realizing now, more then ever, especially since she’s gone back to school; that not all kid’s are in wheelchairs. So she’s wondering and asking, why am I in a wheelchair? It was only recently she asked Lisa, “Mommy, when you were a little girl, were you in a wheelchair?” How can we live without having a broken heart? There will always be moments like these when our hearts are torn from our bodies. And just one more heart wrenching moment, when she asked me while we were just lying in her bed, “Daddy did you see me when I done a cartwheel?” And I lied and said, “Yes my angel and that was the best cartwheel I have ever seen in my life”.

Nature may have four distinct seasons; Fall, Winter, Spring and Summer. All of which will come and go at it’s own designated times. Much like the seasons of life. Right now I am at a different season in my mental health then I was last year at this time. And right now Lauren is at a different season of her cerebral palsy and we have discovered that those seasons are forever evolving and changing. We just have to learn to adjust to each individual season and to learn to find warmth in the coldness, sunshine in the rain, new life amidst the dying dreams. Healing and hope when the season as gone.

 

 

 

 

 

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Waiting For Lauren

I’m standing at the kitchen cabinets, sipping on my coffee; my holy water. But from the corner of my eye I catch a glimpse of something that wasn’t always there. I quickly turn my eyes back to my mug of coffee, I don’t want to look at ‘it’. Why can’t I be just dreaming? I guess it wouldn’t be classified as a dream but a nightmare. I  capture another glance, maybe this time it’ll be gone. But no, there they both appear; motionless ,empty, just waiting…. waiting for Lauren. Her ‘Zippy’ (I guess it’s supposed to be a more glamorous word for wheelchair) and her borrowed ‘Stander’. I hate them both, I hate Cerebral Palsy, I hate what it has done to our little girl and what it is doing. There is no end in sight, no happy endings, no happily ever after. Just uncertainties, pain and the great unknown. Because with CP you never know what a day will bring forth.

But still from the corner of my eye I see ‘it’. It really looks like something from the movie; Silence of the Lambs, where Hannibal Lecter is strapped to a chair for transportation while in prison for various murders and cannibalism. This chair is to immobilize it’s occupant, while the chair I’m looking at is to mobilize it’s occupant; but yet they look the same; ugly! But we have to look pass the ugly and see what this chair can do for Lauren. In reality, no child should have to be strapped to any chair but sometimes some children don’t have any other options. So now we have to see the beauty in these mobile apparatuses and look pass the unfairness, the confinement and the not so pretty side. And look at what these chairs and apparatuses can do for our child’s mobility and benefit; despite what we really feel inside .When really this morning, I can’t focus both my eyes on either. When really I’m screaming on the inside; Why? Why? Why?. Please don’t tell me you have an answer because I believe there are some things in life there are just no answers. When really what I would like to do with all of it is to take a sledgehammer and beat it up, piece by piece.

But in reality I know I can’t do that. I just wanted you to feel our pain and to understand, even just a little of what this does to a parents heart and soul. But  for those out there who don’t have a disabled child, you cannot feel our pain, you can only imagine and that doesn’t even come close. I don’t blame you, it’s just the way it is. So today if you have healthy children; be thankful, never take it for granted and teach your children that kids with disabilities are children too and are to be respected and loved. And not looked upon has having some contagious disease or less of a person because they are sitting in a wheelchair or some other mobile device. They are human beings with an heart and feelings that are greater then what I can ever imagine. No matter what diagnosis they may have, whether that being Cerebral Palsy, Spina Bifida, Down Syndrome, etc. we are all the same, we are all human beings and that label you cannot remove.

It’s still so sad that we live in a Society that stigmatizes anyone that is outside what Society defines as being ‘normal’ We are all different and that’s a good thing; acceptance and love for all is our biggest obstacle. So today I will try with all I have in me to look at these mobile apparatuses as being a good thing because without them whether we want to believe and accept it or not; Lauren needs them. And for her sake, I will do whatever it takes to make her life has pleasant, happy and mobile as it can be. Because  she’s a ‘Princess’ that only rides in her ‘Chariot’.

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Lord Help Us To Believe

Lauren asked Mommy, ‘Mommy are you sure Jesus is going to make me better?’ Wow, how do you answer that truthfully? What we want and what we pray for isn’t always what we get. Sometimes God’s way isn’t our way. Our timing sometimes is way off, we expect answers right away, but I believe that’s not the way it always works. And trusting God when your five years old little girl is in pain and can’t walk is very hard to understand and accept.

You see, Lauren as been in bed now for months, she is gradually improving but very slowly. She is so intelligent and because she is, there is nothing she doesn’t analyze. Therefore after all this time she as spent in bed and having so much pain and discomfort, she’s starting to question God. Everyone keeps telling her that Jesus is going to make her better. So she, being no different then ourselves, asks the question, ‘Mommy are you sure Jesus is going to make me better?’ Are we giving her false hope and unrealistic goals? Is she beginning to realize that I’ve been in pain and discomfort for so long and Jesus hasn’t made me better? Maybe He never will, maybe this is her life.

And I’m beginning to believe that maybe what we are telling her isn’t what God wants at all. It’s what we want and oh we want it so desperately. There is nothing I would want more then for her pain to end and she could just get up and walk. But is this what God wants? I don’t know, my thoughts are not God’s thoughts. I am trying so hard to believe and trust, when things aren’t looking that great. I believe that miracles can still happen and that God is our greatest option. But the reality is we are tired, worn down, worried, anxious and helpless. There are days when we feel we are sinking, our ship is going down, when we have no other alternative but to keep looking for that light, that beam of hope, it’s there somewhere, still shining; but the fog is so thick with life’s trials and tribulations that it’s so hard to see. We need a miracle, if not for healing, then for strength, hope and wisdom to endure, to overcome, to do what we have to do.

A family cannot experience what we are and it not affect the whole family unit. It’s tough on all of us and we struggle to keep us together. All four of us have experienced so much trauma in our lives, so much unforeseen change, that some days it’s near impossible just to focus on getting through that day. But we try to take it one day at a time and that’s not easy when the decisions you make today, could drastically affect tomorrow. We have to believe that there is someone greater, an higher power that is watching over us. Lord help us to believe.

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Different and Isolated

It’s late November, a very misty,foggy, mild day. But it’s November, where’s the white blanket of snow and the cold frosty air? Oh right, we’re in Newfoundland where the seasons change every ten minutes, but I’m not complaining because shovelling snow is not my idea of fun. The push is on now to get the Christmas decorating done and that takes me forever because I can only do a little at a time. If I tried to do it all at once, I would just get overwhelmed and my anxiety would go through the roof.

It’s kind of ironic the things we take for granted because there was a time when those kind of tasks didn’t trigger my anxiety; it was total enjoyment. But now I have to work a little harder at keeping anxiety under control and that requires work on my part, which exhaust me and steals the joy from the things that once I so much enjoyed. I know that’s hard for some people who haven’t suffered from major anxiety to understand, and that’s okay. But my goal here is to educate those who don’t ‘get it’ and to let those who do ‘get it’ to know that they are not alone.

This illness is so disabling and crippling (major depression and anxiety) that it makes you feel like you’re different, you’re not normal, you’re flawed; that you’re going around trying to imitate everyone else that you think is ‘normal’. Trying so desperately just to fit in. But truthfully, there are so many times that I feel I just don’t fit in, I’m different. And that feeling is so isolating.

Since Lauren was diagnosed with Cerebral Palsy, and I’m not comparing the two for similarities but it gives me a better understanding of what different and isolated really feels like. No matter what you think or say, there is still such an enormous stigma that is attached to a wheelchair. Just for example sake; it was just yesterday we went to a birthday party with Lauren. And just for the moment I began to observe how the other children interacted with her. And I realized that a lot of them, not all, were staring at her like she had some contagious disease, like they had never seen a wheelchair before in their lives. And no, this was not just my thinking but when we left, Lisa pointed out the same observance. It was very sad, especially in today’s society where kids are exposed to so much but yet still looked at Lauren as if she was different. And yes she is different but no different then a kid that was wearing glasses, hearing aids, kids with diabetes or me with my mental illness. In one way or another we are all different, I guess some differences we just can’t see, and because we can’t see them they are looked upon as ‘normal’. So sad but yet so true.

I guess for us it’s accepting the fact that that’s the way things are. And some things will never change, no matter how much we try to educate and no matter how much we advocate, some things will never fully change. We just have to embrace those who do and accept those who don’t ‘get it’. And realize that there are still those out there living in their perfect world, with their arrogance and ignorance and for those we will say a little prayer.

 

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It Can’t Be In Vain

It’s kind of ironic that it’s when I’m in the most pain, it’s then I can write the most. It doesn’t take away the pain, it just helps to alleviate it a little. Gives me the feeling that I’m talking to someone, that I’m baring my soul to them, which in turn lightens the load a little.

Today my heart is broken, the pain that I (we) bear is so overwhelming. Up until yesterday, Lauren as been in bed not wanting to be moved because every time she did, she was thrown into an ocean of unbearable pain. Has her parents, we have been drained, emotionally, physically, psychologically and spiritually. How long can we stand by and watch our helpless five years old angel just not want to move and cry screams of terror if she did. We plead with God to make it stop! What is the purpose of al this pain; she is innocent, helpless and fragile?  Please just make it stop!

Early yesterday morning the phone rings. Lisa answers, it was Lauren’s Orthopedic surgeon. I knew by the look on her face, something’s not right. How often do you get a call directly from your doctor? Pretty much never. But here he was calling us personally; he wanted Lauren to be admitted again, immediately, today. Lisa finished the conversation and told me the news. But how are we going to do this again was her plea? When you are already broken, hanging by a thread but yet you have to face another mountain. How can we climb yet another? There is just no end in sight.

The doctor said, ‘we have to save these two hips or if not, all that we have done (the surgeries on both hips) will be in vain.’ We are now in a panic because in order for Lauren to even have a chance of walking she has to have two good hips because if not the Children’s Shriner’s Hospital in Montreal will not even consider her for the other surgeries that she needs done there. This as to work, she as got to get these hips moving and right now they are not. All this pain and suffering cannot be in vain.

Lauren is now settled into her ‘hotel’ room, as she calls it, once again. I do believe it’s where she needs to be, despite how difficult it is. Her x-rays came back good, the doctors had feared that something had moved out of position, which could give her all this pain. But thank God everything is fine. So I guess now it’s weeks of physiotherapy; that will certainly not be an easy road, but it as to be done. No one wants their child to cry in pain and hurt. We still pray that all the angels in Heaven will surround her and protect her.

Today we search for hope, pray that our faith would be renewed and the strength that can only come from an all powerful God. And thus, we start yet another journey.