Category: Cereabal Palsy

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Going Outside The Will Of God

This is a quote I read the other day, sounds great when you don’t stop and think about it but when you do stop to think, it isn’t what you expect at all. The quote says, ‘If you knew how He (Jesus) can take away all that bitterness, that sorrow, that hurt, that depression, anxiety’.

To begin and I will state right from the beginning that I believe Jesus ‘can’ do all these things. But does Jesus do all these things? NO, He didn’t promise that if we came to Him all these things would be taken away. If that were the case we would have a sweeping revival flow over this earth. Who wouldn’t want to be free of all these things? I sure would. I have suffered depression and anxiety all my life. I believe beyond a shadow of doubt that God can do that. But does he always? No, that’s not the way it works. Jesus said in John 16:33, ‘I have told you these things, so that in me you may have peace. In this world you WILL have trouble (there is no doubt about it; Christian/Non Christian, we will still have trouble, sickness, trials and hurts). ‘But take heart! I have overcome the world.’ He promised to never leave us, or forsake us, no matter what situation we find ourselves in.

Psalm 46:1 ‘God is our refuge and strength, an ever-present help in trouble (there will be trouble).

Romans 5:3-5 ‘But we glory in tribulations.

James 1: 2-4 Consider it all joy, my brethren, when you encounter various trials (bitterness, sorrow, hurt, depression, anxiety) , know that the testing of your faith produces endurance.

But God did promise that He would be with us in our trials; He didn’t promise to take them away. 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’.

Isaiah 43:2 (World English Bible) ‘When you pass through the water’s, I will be with you: and through the rivers, they will not overflow you. When you walk through the fire, you will  not be burned, an flame will not scorch you.’ God did not say we will not have to pass through the waters, rivers, walk through fire. But He did promise to be with us.

To say that God takes away ‘all’ bitterness, sorrow, hurt, depression and anxiety; is in my belief giving so many people false hope. And  making God out to be the ‘Genie in a bottle’. If we come to Christ it doesn’t make everything bad go away. Bad things still happen to good people. That statements also implies that if those things aren’t  taken away then there is something wrong with you the person, because Jesus is supposed to take away all that stuff. It is not our place to decide what God heals us from, that is His decision and yet there are so many who make themselves out to be God and speak for God, when that is not their place. God has a reason, a plan and purpose for everything and no one else can decide that for Him.

Because I still struggle with depression and anxiety doesn’t mean that God is not a big part of my life. It’s His ever abiding presence that have brought me thus far and WILL lead me on. And for somebody to even suggest otherwise hasn’t struggled with a mental illness or hasn’t had a child in a wheelchair. I will not tell my child that Jesus is going to make her walk, when I don’t know that, it may be in God’s will that Lauren remain in that wheelchair but I do know that God will never leave her alone in that wheelchair and He has great plans for her life, whether she’s walking or not. I may struggle with depression and anxiety for the rest of my life and if that’s what HE decides; I have no choice but to fully trust in Him. It’s not only about trusting God in the good times (that’s so easy) but it’s also about trusting Him in the bad times, that’s when your faith is really tested. And I can honestly say, ‘I still trust Jesus!’ Despite everything, I still trust Him. If those all knowing Christians just walked a mile in my shoes, would they be so quick to judge, condemn and shun. Jesus may have all the answers but I think sometimes they may not be the answers we were expecting.

I just pray daily for His strength, grace, mercy and wisdom to ‘know’ (I may not always feel, but I don’t live by feelings but by faith) that we are in the will of God. And at times, being in the will of God is not always the easy path but God WILL  provide strength that we need to pass through the waters, through the rivers and to walk through the fire.

 

 

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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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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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Let’s Blame God For That

When we are angry, hurt and in pain; whether emotional, physical or mental, the first thing we want to do is to blame somebody or something. By blaming someone else gives us the feeling of alleviating some of the burden and pain that we are carrying and feeling. And one of the first and most easy person to blame is God. I think we have all been there at one point in our lives, when we lash out at God and blame Him for everything that as gone wrong. But is He really the blame? Can He be held accountable for every little thing that goes wrong in our lives? I believe God is not always to blame and when we do we alienate the only person that can really help us through our most difficult times and hurts. I admit and I am guilty of blaming God and questioning God, why? But when I sit down and analyze my situation, I realize that God is not to blame. But I realize that He is the one who can help me through any circumstance in life and give me a peace and presence that can only come from an eternal God. He’s not my enemy, but my best friend. Let’s try looking at it in a different light and let’s maybe stop the blame game.

I think we can begin our search and get a better understanding of name-blaming by going back to the beginning of time. Back to when God created the earth and everything in it, including man and woman. It was His intention for humanity to enjoy the beauty, abundance and fruitfulness of creation. In Genesis 3 we read about the fall of man and sin enters the world (it’s here we can do the blaming) because of man’s disobedience to God. It’s because of this fall that we are now separated from God and God’s plan for mankind would be forever changed. Therefore Adam and Eve changed our destiny and relationship with God. And the only way of reconciliation to God would be through the shed blood of HIS son, Jesus Christ. Acts 4:12 “Neither is there salvation in any other; for there is none other name under Heaven given among men, whereby we must be saved”. So maybe the next time we want to blame God for something, may we remember that it is God who provided for us a way of escape.

Let’s start directing the blame at the real source of evil in our world today, that being Satan himself. I want to quote directly from the Bible because I feel it would be the most powerful and effective attack on Satan himself. John 8;44 ‘…He (the devil) was a murderer from the beginning, not holding to the truth, for there is no truth in him….for he is a liar and the father of lies’. 1 Peter 5:8-9 ‘Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour’. 2 Corinthians 11:14 ‘And no wonder, for Satan himself masquerades as an angel of light’. Ephesians 6:12 ‘For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms’. Genesis 3:22 states that in this world there is good and evil, so lets become more aware of the presence of evil and shift some blame to where it belongs.

Many times I believe when we want to blame God, it’s because throughout our lives we were taught to believe that if we came to God all our sickness, troubles, etc will go away. Many (not all) Churches preach what I would call, prosperity preaching. Or others, the ‘name and claim it syndrome.’ Neither of which I believe. I do believe this kind of preaching is dangerous and misleading. And when God fails to prosper us financially or heal us from our illnesses, or doesn’t meet up to what we were taught He was supposed to be, we become bitter and blame God. But God is not a magician, waving a magic wand. I believe God can heal, but not all of us will be healed, nor will we all be millionaires. God’s love for us is not measured by what He can do for us but by what He has already done, by sending His only Son to die for our sins and that’s what truly matters (John 3:16).

So let’s stop blaming God for everything that goes wrong in our lives, it’s then we begin to know God for who He is. He is someone who loves and cares for each one of us and we can give Him all our hurts, cares and sickness. 1 Peter 5:7 says, ‘casting all your care upon Him; for He careth for you’.

Many times in life we are faced with much trauma. The death of a loved one is so devastating and hard to understand. But we have to realize that just as birth is a part of life, so is death. 1 Corinthians 15:22 ‘For as in Adam all die, so in Christ all will be made alive’. It’s one thing in life that we are certain of; that we will die, it’s a part of life. The big question is, Are You Ready? Age has no barrier, sometimes loved ones leave us much too early and we question why and are left with a broken heart and emptiness that just won’t go away. Let’s not blame God for a death but let’s remember He is the one who took away the sting of death. 1 Corinthians 15:55-57 ‘O death where is thy sting?……. thanks be to God, which giveth us the victory through our Lord Jesus Christ’. God is the one who gave us hope, death is not the end, we have hope through Jesus. 1 Thessalonians 4:16-17 ‘…and the dead in Christ shall rise first….and so shall WE ever be with the Lord. I’m reminded of my Dad right now because when he preached or talked about the promises of God he would get so excited, with tears streaming down his face, he would praise and worship God for who He was. My Dad lived a hard life with many hardships, struggles and rough times; but that never dampened his love for God. And that is what I’m feeling this  morning; an overwhelming presence of God. If it were not for God, the grave would be the end. But we have the hope of the Resurrection. So let’s hold on to the hope that Jesus gives and let go of the blame and hurt.

I am not speaking to you today as someone with all the answers to our questions. But I am pointing you to ‘The Answer’, and His name is Jesus Christ! I am speaking to you from my heart and my own personal experiences in life that have not all been so pleasant. There as been lots of times when I wanted someone to blame and lots of times that was God and for that I am sorry. But I have learned that in life, bad things happen and that we have no control over. What we do have control over is how we respond to them. Through my own mental illness, Lauren’s cerebral palsy and many hardships and struggles; I have to believe that God is in control and He will give us strength for every day. He’s our only hope. I am trying everyday to live the best life I can, in spite of my own illness and life’s struggles. I don’t blame God anymore, I just hold on to His hand a little tighter because there are still days when I feel I’m loosing my grip. But God is faithful, God is GOOD!

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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 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.