Tag: Lauren

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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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The Year I Died

In 2012 someone died. That someone was me. Something changed that year that I have fought to resurrect, fought to bring that person back to life; to resuscitate. It’s now 2020 and I’m still trying to find that person who died. My spirit died, my enthusiasm, my zest for life died. Some days are worse then others but this week as left me feeling numb, no motivation; I’m still missing me. And I don’t like the one that’s left behind.

The new me is in a constant struggle to survive. The fighting as left me exhausted, tired and numb. I find it so hard to feel happiness, especially since that’s all I want. I believe happiness is something you shouldn’t have to fight for but should come naturally. And after all these years I thought I would be at a much better place of improvement with my mental health. But it’s like I’m still fighting to keep me alive. Still fighting to resuscitate that lifeless me.

I remember back in 2012, my wife Lisa, described me as a ‘walking corpse’. I’m sure I’ve improved pass that acute stage but it’s been a battle I fought every day. How much can one person fight and how long can a person fight before they come to a breaking point? That’s the question I’ve asked myself during the pass few weeks.

This year as brought many challenges and obstacles for everyone. The worldwide Covid19 pandemic itself as added so much stress and anxiety to us all. But for us, those living with a mental illness, this pandemic as been a trigger and frightening experience and many have found it hard to cope. I’ve certainly had my moments that’s for sure. At times when my wife Lisa was hospitalized for three surgeries in less then a year. Then Lauren with her already comprised immune system was hospitalized for cerebral palsy related issues. And our son, Logan, was thrown around in all this chaos and turmoil; a strong but worried little boy, dealing with issues that no little boy should not have to face.

So in the midst of a world that was so frightening, unpredictable and isolated, I felt the pressure of having to survive. There were days I thought I would crumble but I knew I had to be resurrected to get through this yet another life changing crisis. I knew that if I crumbled we were doomed and I could not let it happen. I was reminded of the safety regulations repeated by a flight attendant on an airline prior to take off. And it was advice that I had to use during this very stressful time. The flight attendant would say, ‘In the event of a drop in cabin pressure; air masks will be released from above your heads. If you are travelling with infants, small children, seniors or anyone requiring assistance with their mask; put on your own mask FIRST!’ And that’s what I had to do, put on my own mask first and  then I would be equipped to help those that were in my care. I was resuscitated once again.

Maybe the year to come will be my year to be resurrected. The year I come back to life! For everyone’s sake, I need to return, I need to be there for my family, in every way. I pray for strength, wisdom and endurance to press on, to never give up. To live again!

 

 

 

 

 

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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.

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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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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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No Options Left!

The screams of terror, fear and pain fill the house. No, we are not watching a horror movie; it seems we are living it. Logan rushes to close the bedroom door because he can’t bare to hear his little sister in so much pain. It was just Monday, October 22,2018 that Lauren had her third spica cast removed. For anyone having a cast removed is never pleasant but for Lauren it’s even worse because her cerebral palsy exemplifies itself by spasticity(tightness)  of the muscles.

Because her muscles have been unable to move within the cast: they are now weak, tight and very little control over her movement. If she is moved at all, even to do a pamper change, throws her into an horrifying rage. We have to put her in a bath of epson salts and very warm water to help relax and awaken her now ‘sleeping’ muscles. Getting her from the bed to the bathtub is nothing short of a nightmare. She is clawing at my neck in hopes of getting relief from the fear and pain. Once she gets in the tub with Mommy, she starts to settle down and relax a little, to a point where she is just floating. We do this for about twenty minutes. Then its time to get out and the terror starts all over again.

Why am I telling you all of this? It’s because I want to educate and make you aware of what’s involved in caring for a child with a disability. And also to make you aware that our insensitive, non caring, non compassionate Government does nothing to help. We has her parents feel so all alone and no support, we have to provide 24/7 care ourselves with  no respite care because we can’t pay for it ourselves and our Government as declined  any help whatsoever. We are not complaining about what we have to do, because we love Lauren and would give our lives for her. But we believe we deserve a little help from our Government to receive some respite care. We are only human and we are running on empty and this road is just beginning and we are falling beneath the load already.

What do we have to do to get some help? I am tired of pleading with our Government officials MHA, MP, Minister of Health, Minister responsible for the Status of Persons with Disabilities, etc. Where did I get with all this advocating? No Where!

Where else can I go? What else can I do? We have run out of options and feeling exhausted and overwhelmed. Who can help? Who will help? Someone as to do something and I’m calling upon our Government to get their heads out of the sand, to hell with policy and do what’s right for this little girl and her family.

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Lauren’s Walk of Fame

Daddy’s writing again, he must have something big on his mind (He calls it getting inspired). Mommy, Daddy and Bruddy(Logan) are my biggest fans. They want the absolute best for me, but you see I have Spastic Quadriplegia Cerebral Palsy and that creates a lot of problems for me; especially when it  comes to mobility. But we believe one day mobility won’t be an issue, and my wheelchair won’t be my form of mobility but I will be able to walk on my own.

Today I am lying flat on my back in an hospital bed at the Janeway Children’s Hospital in St.John’s, NL. I have spent a lot of my time here since I was diagnosed at age one but now I am five. Just yesterday I had my third dega osteotomy and as well I had my adductors released (cut). Three surgeries in one.  In children with spastic(tight) muscles, who are unable to walk, the hip joint does not always develop properly. This was the case for me, therefore I had to have this surgery on both my hips to correct the abnormal hip development and prevent further dislocation and prevent or reduce pain in the hip. But unfortunately for me, the first time I had the surgery, the hip became displaced again and the surgery had to be redone. I’m hoping this will be my last osteotomy, because I want to move on to my next plan of attack.

To present, I have made four trips to the Shriners Childrens Hospital in Montreal, for an assessment to determine if I would  be a candidate for the Selective Dorsal Rhizotomy. Which is really my only hope (other then God) of walking, but four of the times it was determined I was, as of yet, not a good candidate. What this surgery entails is; opening up the lower back to separate the ‘rootlets’ in my nervous system, which would ease/release the tightness/ spasticity of the muscles in my legs, which would hopefully allow me to walk or at least some form of mobility. But right now, that’s not happening anytime soon but we are still believing that it will happen sometime in my future. Because I really want to walk.

My next plan of attack after I am fully recuperated and both hips are in good working order; is another trip to Montreal. This visit to the hospital there would be to determine if a baclofen pump would be beneficial and work for me. A three day trial would determine this. If this is successful then a programmable pump and catheter that delivers baclofen  which helps relieve severe spasticity; by supplying the medication directly into the intrathecal  space where fluid flows around the spinal cord, would be surgically inserted inside the skin around the abdomen area. This would supply a steady supply of baclofen to the spine and in turn reduce spasticity. This would be a temporary alternative until I was ready and a good candidate for the rhizotomy surgery.

So it ain’t over yet and we are not giving up. The journey may be long, but our prize is the destination; that being one day I will walk just like Bruddy. And will never ask the question again; ‘why am I in a wheelchair?’ Miracles happen, I’ve already proven that. My strength, resilience, determination, willpower and drive will all help me reach my destination. You just wait and see!