Category: Lauren

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Living In An Unjust World

When Lauren was diagnosed with Cerebral Palsy at the age of one; I knew we were in for the challenge of our lives. What I didn’t know was what those challenges would entail. We have had many obstacles, uncertainties, and battles that no human should have to fight. We have been bombarded by policy, protocol and ‘the Systems'( there are more then one).

If there ever was a day when I felt I failed my little girl, it was today. If there ever was a day I felt that the ‘systems’ failed her, then that would be every day. It’s been one disappointment after another, but why does it have to be that way? You would think a child with a disability would come first, no matter what; if it meant it was going to improve the quality of life for that child. But that’s not the way our society/world works. Agenda, policy and protocol supersedes the rights and privileges of even a little child. When you are faced with the real world, with a child who has a disability, you soon learn and experience things you would never believe otherwise.

I could share with you many injustices, discriminations, unfairness, inequalities, exclusions and the list could go on. I could name names of people from the school system, the School Board, the Dept. of Education itself, owners of public buildings, including Government buildings, all levels of Government from MHA’s-MP’s, Skate Canada; to name a few. But for our own sakes and the protection of our children, I won’t go there (right now anyway).

I have learned that we live in such a corrupt world, that human life is nothing more than a name or number on a piece of paper. We have fought many battles, that no parent should ever have to fight when they are already fighting against the biggest  battle of  their lives  already, by raising a child with no supports, with so many needs. But I have found that some battles are never meant to be won. And at this point because I have failed to win some of those battles, I feel I have failed.

Just to give you an example, here is an excerpt of an email that I sent to the Human Rights Commission (kind of ironic in a way that I felt I was fighting the Human Rights Commission for human rights!). “So it is with great regret that we wish to withdraw our complaint: not that I don’t believe we don’t have a solid and valid case but we just don’t have the money to pay for a lawyer to represent Lauren. We live in a very unjust Society, when a five year old, disabled child is denied legal counsel because we are not rich. I believe I have failed my little girl but I will not take all the blame, I also feel The Human Rights Commission as failed her because they have failed to provide her with the rights she so deserves as a human being, the Legal  System as failed her and Society as an whole. I will close this matter with a saddened and broken heart on behalf of Lauren. I am tired of fighting for Lauren’s rights and getting nowhere but I can say with certainty that I have tried with all I have, but there comes a time when you know you can do no more and I have reached that point”. This is just one of the many battles that we have been fighting behind the scenes, that nobody knows about and there are more.

The energy, the stress and stamina that is required to fight such needless battles is overwhelming. We are tired and exhausted but we have to go on and make the best life we can for Lauren, despite the forces that are against us.  She deserves so much more, but lives in an uncaring world (for the most part, not all); that policy, protocol and agenda come first. I feel nothing but sadness for those who enforce these policies and protocol. I don’t know how they sleep at night, when they would rather protect their own agenda over that of a five year old, disabled child. And that my friend, is why we live in an unjust world!

 

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My Letter To Santa

My Letter To Santa

 

                                                                                                                         Hey Santa,

 

I don’t have a Christmas wish this year.

What I want you can’t pull out of your magical bag.

Your elves can’t make it.

You can’t wrap it in pretty paper and tie it in a bow.

 

What I want this Christmas is not a wish but a prayer.

You see Santa I need a Christmas miracle.

But Santa you would have to say a Christmas prayer.

And when you do could you ask Jesus for a gift that can’t be tied with a bow.

 

You see Santa, my little girl needs Jesus healing touch; not a doll this year, not a stuffed toy, nor an iPad.

I believe Santa if you ask, maybe, just maybe she would get her Christmas miracle.

A gift that will take away all her tears of pain, no more surgeries, no more walkers, standers, wheelchairs.

Please Santa tell Jesus to just let her walk this Christmas. That is my Christmas prayer this year.

 

My gift you see comes in the form of a prayer.

And I believe that Jesus is listening, even to Santa this year.

 

So Jesus, tell Santa we won’t be needing gifts or presents that can be wrapped under our tree.

But this year we’re going to receive our Christmas Miracle.

 

But Jesus, we won’t be greedy and forget all the other boys and girls that are sick, hungry, abused, extorted and even alone this Christmas.

Could you please visit them for me and sit them on your knee and tell them you love them and everything is going to be alright.

 

Maybe Jesus you can tell Santa that when he makes his rounds this Christmas; that he would make their Christmas wishes come true.

Take away their hurt, Jesus, their pain and hunger too,

may this be their best Christmas ever.

 

I’ll leave that up to you Jesus because I still believe; miracles do happen!

Sincerely Yours,

A Loving Father, Harris   

 

 

 

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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 I Believe

‘The quality of being thankful, readiness to show appreciation for and to return kindness’. That’s how google defines gratitude, that just doesn’t do it justice. Gratitude doesn’t just come from your mouth has words but from your heart. It’s an overflowing of thankfulness that is felt only from deep inside. There were days I thought I would never feel gratitude again.

It’s been years since I’ve been able to live a normal, functional life. The disabling, crippling disease of mental illness has stolen from my life immensely. But everyday I live my best life, despite my illness, some days better then others. And everyday, little by little I have fought to regain some of my ‘normal life’. Times when I wouldn’t be overwhelmed with anxiety and fear when I attempted to perform life’s simple task. For me, the simple task that I would  normally just do without even thinking; now have turned into a mountain of anxiety.

But today I am so grateful for the simple things that I now can perform. One in particular I have to share with you, to help you understand my point. It’s been six years since I have driven on the Trans Canada Highway. Lauren is presently admitted to the Janeway Children’s Hospital. Lisa stays with her and I visit when I can because one of us as to stay with Logan. I was forced into a position where if I wanted to be with Lauren while Logan was in school, I had to overcome this phobia. How am I ever going to do this? When my brain says, ‘you can’t!’

I stayed home one day because Logan had to go skating with his school class and a parent had to be present. I knew I couldn’t stay away from the hospital for two days and my pride didn’t want to ask anyone to give me a lift to the hospital (only an hour away). But to me that seemed like a six hour drive. But I was determined.

The problems, trials, sicknesses and uncertainties, have moved in, in abundance. Making it next to impossible to feel gratitude for anything. When everything else was so overwhelming and drowned any feelings of gratitude that tried to seep in. Lauren’s Spring/Summer/Fall was basically spent in bed, lying on her back; due to one surgery after another. And we has her caregivers/parents were feeling the weight of the load. We were at the bottom of a very dark hole.

I knew we were running on empty, hope was depleting and our human strength was failing us. We were beginning to question, how can we go on? There was nothing humanly possible that anyone or ourselves could do, we were at, what felt like, a dead end. But I remembered my Dad (who is now passed) was a prayer warrior, a man of faith and strength. I was home alone, what did I have to loose. So to my knees I fell, if I could pray Heaven down to us, it was going to be today. And pray I did, for every ugly situation in our lives, that was out of our control. And do you know what? Heaven did come down! I prayed from the depths of my heart and soul, for the power of God to take over, I was done, now it was up to Him.

You may call it coincidence and foolishness. You may call it what you like, but I call it a visitation of the power of God. ‘He came to me, when I could not come to where He was, He came to me’. That night before Logan and I went to bed, Lisa texted me a picture of Lauren sitting in her wheelchair (a miracle), we hadn’t seen Lauren sit for months; she was always in a lying position when in cast or out. An here she was just the next day sitting, my heart leaped for joy ad gratitude. I could not believe what I was seeing, that’s impossible. But then again we serve the God of the impossible, anything is possible with Him. My hope was renewed.

And today I made that one hour trip to  visit Lauren at the hospital, all by myself. It’s ironic because prior to my severe depression and anxiety; I could drive across Canada and probably wouldn’t think twice. But today I was not alone, I had an unseen passenger. There were many times  in the pass six years I have questioned God’s presence and power but today I know He is present and is ever present.

Today I am filled with gratitude to God. “To God be the Glory, Great Things He Hath Done”. And great things I believe He will continue to do, if we just believe. Lord I Believe!

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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.

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The Seasons of Life

It’s Fall, one of the most beautiful, scenic seasons of all. The bright, vivid colors of leaves as they hold on tightly to the trees; not wanting to fall off. The cool, fresh, clean air of the wind whispers the ghostly sounds of Halloween. Winter is fast approaching with it’s chilly winds, sparkling blankets of snow and all the trees are laden by the weight of the white, sugar-like powder on it’s branches. The seasons come and go, we have no say in when and where, much like the seasons of our lives. Life is built around seasons; some cold and sad, some warm and happy, others filled with uncertainty and unpredictability but this one thing we know; they will come and then they will go. Nothing last forever, not even the seasons of life.

Today is Halloween, ironically you can feel the airy, ghostly feeling of the season, as I glance out my window at the grey, silent atmosphere. With nothing but the sounds of black crows screaming in the distant air. I wonder what they are saying? ‘Hurry winter is coming’! Or maybe, ‘Halloween is here, watch for the ghosts and witches flying overhead’.

Logan is gone to school, overflowing with excitement and wonderment of what the day will bring. Halloween is here and all the excitement it allows for kids, even the kid in all of us. Logan decided to be ‘pikachu’ from pokemon. And of course so did Lauren (her’s is a girly pikachu) but sadly, Lauren can’t get out this year. Right now she is still confined to her bed and only gets out when it is absolutely necessary and that is always against her will because when she moves she is in so much pain and fear. But we will try to put her costume and give her a form of Halloween. It fills us with so much sadness but we will make it as special as we can for her sake; sometimes the seasons of life are not very fair or kind.

Maybe the next season, things will be better. It is so easy to loose hope and faith when your season of life is a boisterous winter storm. But maybe, just one day, our season will change to the bright, sunny days of summer. And from the wise words of my father, ‘Tomorrow will be better’. I will cling to that hope and believe in his wisdom, that things will get better.

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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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A Father’s Plea

This is a post I put on Facebook, but I thought I would share it on my blog as well:

On Monday Lauren will have an X-ray to see if her cast is ready to come off, we are praying that everything is healed and the cast will be removed. It is far beyond my finite understanding how she can endure what she does. She as practically spent all summer and up to this present day in bed and in a body cast. I know people mean well and say things like; ‘ well that’s great that she is out of cast’ and it is. But it’s then the pain begins and we have to listen helplessly as she screams through days of intense therapy. We have to believe there is an infinite God of mercy, grace and strength for all of us; including Logan who feels every pain that ‘Sissy’ endures.
I am a firm believer in prayer but I also believe that faith without works is dead. So I am putting this out there, as much as we need prayer, Lauren is also in need of so much; including her own accessible bathroom, a stander which cost $3000 and the list will just keep growing. We will never be able to provide her with any of this because of our limited income. I know there are those out there who could provide her with anything she needs and it wouldn’t put a dent in your bank account but yet you say you pray for her and I thank you. And there are people that say, ‘is there anything we can do’? Well, I’m asking and the ball is in your court. May God today open someone’s heart and realize that all needs are not across the sea but some are right here at home.
The bible says,’you have not because you ask not’; well I am swallowing my pride for Lauren’s sake, and asking. I am not exploiting Lauren’s situation but sharing that you may get an understanding of where we are. Lauren can get nothing from Government funding and our fundraising is just not enough to meet her needs. She deserves so much better, her life thus far has been filled with so much pain and we have to do all that we can do to make her life a little more comfortable. Because we know her suffering is not over, her journey is just beginning. Please don’t leave us alone to ‘walk’ this journey alone, we need you!
A plea for help from an helpless Father,
Harris

 

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In His Hands

Night falls, day breaks; what will this day bring? Can I do this again? My strength is depleting , but life requires so much endurance and I wonder where does my strength come from? As a human being we have a limited supply, there is a fuel tank and there are times when I feel I am running on empty. But then once again that still small voice speaks to me and reminds me that, ‘He is my strength’.Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God, I will strengthen you and help you; I will uphold you with my righteous right hand”. Exodus 15:2 says, “The Lord is my strength and my song, He has given me victory”. Nehemiah 8:10 “Do not grieve, for the joy of the Lord is your strength “.

My life is anything but stress free. I am sure we all have stress in our lives and I am not comparing. I am just sharing my experience, to remind myself and to help others who feel they have no hope. I suffer from depression and have so all my life, I was born with it, genetics plays a big role in my illness. Choice was never an option. Do I become angry and blame everything that ever went wrong on my illness? I can and have but that’s the past, I cannot live there anymore. I now try to live in the moment (notice I said ‘try’, sometimes my human side tries to go back). But Philippians 3:13-14 says, “But one thing I do; forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus”. Is this easy to do? Not at all but in order to survive and live a life that is somewhat ‘normal’ I have no choice. I just pray everyday for His strength, to be mine. And I have to believe that His promises are true.

Everyday I am plagued with my illness, it’s a never ending battle. Would I like to be healed of this illness? Of course I would, there’s nothing I would like more (except for Lauren’s healing). But that’s not God’s will right now for Lauren or me. Does that make me angry, discouraged and question God? Yes it does! But so did the apostle Paul, he pleaded with God to remove his ‘thorn in the flesh’. But God said, ‘no’. He does assure us though of His grace and strength in our sickness and infirmities. 2 Corinthians 12:9-10 says, ‘And He (God) said to me (Paul), ‘My grace is sufficient for you, for my strength is made perfect in weakness’. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me’. ‘For when I am weak, then I am strong’. The dictionary definition of infirmity is ‘a physical or mental weakness’. I guess for me that would be my mental disorder, it’s what makes me feel weak but in reality because of this weakness, Christ’ power rests upon me and therefore I am strong. What an amazing encouragement for those of us who feel weak, beaten down and broken. Our strength is renewed daily through Him who died for us.

So on those days when I feel like a nobody, worthless, hopeless and good for nothing; I am forever reminded of God’s love for me. I don’t measure myself anymore by Society’s standards because if I do, I will surely fail and never measure up. But God loves me just as I am, Jeremiah 31:3 ” I have loved you, with an everlasting love. With unfailing love I have drawn you to myself”. On those days when I don’t love myself, God reminds me that I am His and He loves me with an unconditional, everlasting love. Roman’s 8:38-39 reminds me every day; “For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord”.

Today we have to take Lauren back to the Janeway for her post surgery check up. Here we have our five years old little girl lying in bed with a body cast (for the third time). Does that give me cause to be angry, sad, to question? Yes, of course it does, I wouldn’t be human if I didn’t. I bring her to the Lord in prayer for healing, but that healing never comes. Is that cause to be upset and question God? In my human weakness, yes it is. But I know that God is much greater than I am and He knows what He’s doing, He knows what’s best, even when I feel lost and helpless; He’s still in control. And I have to learn to take it one day at a time and to trust in Him fully. Lauren is in His hands, whatever the future holds; we are all IN HIS HANDS.

Whatever this day may bring, I know I am not alone. My strength comes from Him and Him alone. So be encouraged today; God loves you; you’re IN HIS HANDS!

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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!