Tag: CP

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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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Lauren’s Continuing Journey

July 3, 2023. Yesterday was quite the busy day but a successful one. Lauren’s Fundraiser Market may have been a lot of work but I think it was worth it. Sometimes you do what you have to do in order to make it. It was pretty exhausting just the same, especially having to leave for Montreal the next morning. But here we are, boarded our plane, waiting for takeoff.

Lauren’s journey begins. It was only a few weeks ago that we were in Montreal for Lauren’s trial surgery for her baclofen pump, which was quite successful. So now we are going back to have the pump permanently placed inside her abdomen. It’s bitter sweet really, we hate having to put her through yet another surgery but we know that this surgery will give her a better quality of life, less pain, less spasticity and better function overall.

The journey itself; from getting here to there, is very difficult on all of us. But I guess you do what you have to do, it’s not like we have a choice and really we would do whatever it takes to protect both our children. So it’s, Montreal here we come, for about the millionth time it seems.

July 6,2023. Here we are sitting in the waiting room of The Sick Kids Hospital in Montreal. Lauren just went into the OR for what’s to be a 3 hrs and twenty minutes surgery. The worry, anxiety and a million different emotions run through your mind. There are no words to really describe how you feel, you just wait.

It’s 12:50 pm, Dr Farmer just returned from the OR and came to the waiting room to speak to us. You literally freeze for a moment in time. The surgery went well and he was very pleased. What a relief! Now we are waiting for her to get settled into recovery and then we can see her. Needless to say, we can’t wait.

My cellphone notifies me of a text. It’s the recovery room, telling us that Lauren is now ready to see us. She’s still asleep when we get there. Only a few minutes later and she starts to move her eyes and she’s awake! Oh my, I wish I could trade places with her; I would. So hard to watch her lying flat on her back once again. But she really is a trooper; courageous and brave, a warrior princess for sure. So now the next leg of her journey begins…..

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Lauren’s Next Journey

“When a train goes through a tunnel and it gets dark, you don’t throw away the ticket and jump off. You sit still and trust the engineer” Little did I realize when I posted this quote by Corrie Ten Boom, to my Facebook page, that it wouldn’t be long after that my trust would be put to the test. Trust isn’t something that I do easily. To trust is to put your firm belief in the reliability, truth, ability, or strength of someone or something, now that is not easy to do.                                                                                                                                                                                                          A good example of trust would be; when we go for surgery and  are about to be put to sleep, you have no choice but to put your full trust into the medical team that they will do everything humanly possible to perform a successful surgery. Are we guaranteed beyond a shadow of a doubt that everything will go fine? No we are not! But we have to trust that it will. So we have to willfully surrender our very lives to the medical professionals and hope that all will go well. TRUST!

Just after I posted that quote, Lisa’s phone rang. Now it’s been months that we have been waiting for a call from the Shriners Hospital for Children in Montreal. The purpose of this call would be to notify us of a time when Lauren’s surgery would be taking place. The surgery itself would be the first of two, the other which would depend on the success of the first and would be done at a later date. This first surgery would be a trial surgery to determine if a baclofen pump would be suitable for Lauren. The actual baclofen pump implantation is a surgical procedure performed to permanently implant a pump that delivers baclofen to the spinal fluid to treat Lauren’s severe spasticity and dystonia that is refractory to oral medication in Lauren’s case.

I knew by the look on Lisa’s face, what this call was all about. As much as we were anticipating this call, you can never prepare yourself for it. We knew that this was just the beginning of another long journey that we so didn’t want to put Lauren through again. The call confirmed that Lauren’s surgery would take place on June 7th. You see, Lauren has already endured more pain in her short life, then most adults experience in a lifetime. Where is the fairness in this? Why do we have to expose her to this trauma once again? Why can’t God just release her of this horrible disease? Didn’t He say, “Suffer the little children to come to me and forbid them not…”? So many whys! Not a lot of answers. I believe we are well into our right to question. Who in their right mind would want to expose their child to pain?

But yet there are no other alternatives, no other choices! So we are left to, TRUST! Trust that the medical field know what is best for Lauren and that God knows best. Both of which require us to surrender our trust and faith into someone outside ourselves. Placing Lauren’s life into the hands of someone else other then our self. Now, that my friend,  is not easy to do. Being a Christian doesn’t make that decision any easier, doesn’t mean that we can’t question, and have concerns and worries. After all, we are human and God totally understands. Jesus himself questioned God when He said, ‘My God, my God, why have you forsaken me?’ WHY?

In spite of our human weakness, we realize we have to trust, once again, into an higher power.  For without trusting, what are we left with? Nothing, no hope, nothing. So we will trust and pray that everything goes well and this surgery will give Lauren a little better quality of life. It’s all we can ask for.

 

 

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Accessible and Inclusive

Two words that really weren’t even in our (Lisa and me) vocabulary before we were blessed with our little angel Lauren. Little did we know just how well known these two words would become a part of our everyday life. And certainly not in a positive way but in a fight for your rights kind of way.

Let’s begin by defining what each of these words really mean, what they imply. “Disability inclusion means understanding the relationship between the way people function and how they participate in society, and making sure everybody has the same opportunities to participate in every aspect of life to the best of their abilities and desires.” While accessible means, “ a person with a disability is afforded the opportunity to acquire the same information, engage in the same interactions, and enjoy the same services as a person without a disability in an equally effective and equally integrated manner, with substantially equivalent ease of use”. Those two words would change the world for so many disabled persons if only they were put into practice.

Having a child with a disability opens up a whole new world of challenges that we never knew existed before. Ever since Lauren was diagnosed with spastic quadriplegic cerebral palsy, we have come face to face with the many obstacles that she will have to face; not because of her disability but the roadblocks that society and the world has placed in front of her. Roadblocks that make it near impossible for her to consider her world neither inclusive nor accessible.

They say a picture tells a thousand words. So let me paint you a picture. A little girl sits anxiously in her wheelchair at the entrance of her school playground, while the ‘normal’ kids run freely through the sea of pea stone that covers the floor of the whole playground. She sits there knowing that it would be impossible for her to maneuver her wheelchair through this sinking sea of stone. Then she thinks, even if I could get pass this gate, then what?? She realized that there’s not one piece of equipment that is accessible. Someone had forgotten about those two words, accessible and inclusive, while making plans for her school playground. After all, it’s her playground too! Isn’t it? So she turns around and leaves…

I could paint pictures on top of pictures of examples where Lauren was unfairly and unjustly misjudged because of her being in a wheelchair, enough to fill an art gallery. One assumption that I must mention; that being, she’s in a wheelchair, therefore she must be delayed mentally. The only person that is mentally delayed is someone who thinks this way. Lauren is one of the smartest little girls I have ever met; she could teach the wisest among us a thing or two.

I won’t elaborate any further, there’s just no need. I think you get my point. If we are going to have an inclusive and accessible society then we have a lot of work to do. But in order to change our world, we must put those in a wheelchair and with other disabilities in the forefront, not on the backseat. Maybe ‘walk’ a mile in their shoes. It’s then we will see change; accessible and inclusive will become a normal part of all our lives, none excluded!

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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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“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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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’.