Category: Cereabal Palsy

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Different and Isolated

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

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

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

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

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

 

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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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Something Beautiful

“Perhaps the butterfly is proof that we can go through a great deal of darkness yet still become something beautiful.” The third stage of a butterfly’s life is called the chrysalis. This is where the caterpillar forms itself into a cocoon. Inside this small, dark chrysalis is where all the action takes place and the caterpillar is transformed by metamorphosis into a beautiful butterfly.

Mental illness, sickness, cancer, cerebral palsy, etc. can bring  much darkness into your life. And so often you have to question, why? Deep down you pray that there has to be some beauty that will emerge from all this ugliness. While we are inside the cocoon, the storm is raging on the inside, but it’s here that the changes are taking place. If we didn’t experience this stage, this season in our lives; we would always remain a caterpillar, something not so beautiful, intriguing and powerful. But it’s in the darkness, we emerge into something more beautiful, more powerful, more strong then we ever thought possible.

Right now, I am still at the metamorphosis stage. I’m still changing, still evolving and still hoping that I am becoming someone more beautiful on the inside, stronger then I ever was before and a better person because I have experienced so much darkness and brought down to the valley of life. But it is in the valley that we are restored, we grow, we emerge. If we were always on the mountaintop we would never experience growth and new life.

I do thank God for the dark times (maybe sometimes a little unwillingly), for the valleys; even when I don’t understand, I just pray that He would keep us all in the hallow of His hand. And one day, I believe that we will ‘come forth as gold’. For in Job 23:10 we read, “But He knoweth the way that I take; when He hath tried me, I SHALL come forth as gold”

Do I believe today, that I have come forth as gold? No, but I have to believe and not loose hope that one day, in His time, I will! So if you are experiencing a very dark place in your life today, be encouraged, you too can and will come forth as gold. You can go through a lot of darkness but you will see the light again and shine with beauty. Remember God loves you, you are not alone.

 

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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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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!

 

 

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Back To School Disaster

Have you ever felt beaten down; well I feel beaten down today. Ever since our child came into the world, we’ve been like any other parent and want nothing but the best for her. But that best is so obstructed by so many different means. And sadly to say, it’s only parents of special children that understand.

Excuse my expression, but it best sums  it  up, “You are damned if you do and you’re damned if you don’t”. I have advocated for disabled children on so many levels, it certainly doesn’t win you any popularity contest. But I’m not in this for the prestige or the social status. In reality, people look at you, as if you are committing a crime. Dare not fight for equal rights, all inclusion, accessibility, policy change or disturb the comfort zone of the ‘normal child’.

I am so amazed at our ‘all informed society”; that kids today don’t know what a wheelchair is. If parents could just take a moment and educate their children that we are all different, even if we don’t have a disability (a one we can’t see anyway). And different is not a bad thing, it’s okay to be different. For those who don’t know how to explain what a wheelchair is, I will do it for you. A wheelchair is a chair that has wheels that allows a person that has legs that don’t work because their brain is damaged and can’t tell their legs to move. Therefore they require a wheelchair to provide mobility (allows them to get from point A to point B) so they can move around independently. Having legs that don’t work is no different then someone having eyes that don’t work properly and therefore they have to wear glasses to see. Or maybe someone has ears that cannot properly hear and thus they have to wear hearing aids in their ears to hear. Because you have a disability doesn’t mean you have a intellectual disability; I’ve met people standing on two legs with very little intellect. It’s not rocket science, it’s simple; diversity is what makes us unique not defected.

Again this week, that ugly word came up again, policy, don’t get me wrong policy is great if it works; whether it’s our health care system, education system or legal system. But trying to adapt and adjust a five year old little girl with CEREBRAL PALSY into the school system that is bombarded by policy. WE can’t do this because that’s our policy, we can’t do that because that’s our policy; then to hell with policy. If it’s not working, and obviously it’s not, then it’s time for some change or a little tweaking. If this little girl is forced into an environment that she sees as frightening, scary and overwhelming and CP just intensifies these emotions. Then certainly our school system can adapt and adjust to a little change in policy to accommodate a little child, for what’s best for her; not the system. After all aren’t we living in an all inclusive society? So let’s protect our children, not the system. And for that to be done in “a nurturing, supportive, INCLUSIVE environment where all children are challenged and valued”. This week my thoughts have been challenged and disturbed to the cop out in order to save one from having to deal with conflicts to ‘policy’.

In order for this little girl to adjust properly, due to her CP, requires her to do it gradually with a parent or someone she is totally comfortable with, present to reassure her that this is a safe environment. This will only happen when she is introduced on HER terms; not the schools, not the unfamiliar team and certainly not the policy. Once she is eased into the environment, the parent can gradually exit the building and she can become the independent, intelligent and happy child that we know she was and is. If the school is not willing to make these adjustments, then this little girl will be having a very short school year. And only those who can help are the ones who right now strictly enforce policy that obviously requires leniency in practice.

For the protection of the school and child; names have been withheld.

 

 

 

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Lauren’s Eye Surgery. A Curve in the Road.

Early mornings and I don’t agree, my brain is in a fog and my body just doesn’t want to move. The clock alarms at five-thirty am, but I just went to sleep, but I better get my butt out of bed. Today we have to go to the Janeway for Lauren’s eye surgery.

We take Lauren out of the bed; body, bones and pajamas. Wrap her in a blanket and settle her into her car seat. Uncle Dale comes up to stay with Logan, I’m sure they’ll have a day of adventures. And then its off we go for the adventure of our day. It’s like we’re on auto pilot, we just do it. Not like this is the first time but if we stop to think about what we are doing; we might fall apart. Before long we arrive at the hospital and head for the surgical floor, where Lauren is prepped for surgery and dressed in a royal hospital gown. Now we’re in the waiting area, dreading our next move and passing her over to the team of medical professionals. This makes us feel like such horrible parents, but we know we have to do what’s best for Lauren.So now we wait and wait some more…

A nurse arrives to take Lauren to the OR, Lauren screams in fear. The saying, ‘ignorance is bliss’ doesn’t work for Lauren; she knows exactly what’s going on, she’s been down this road many times before. And she knows that she will not return the way that she went in but she knows that at least she won’t have a body cast. That was one of her concerns prior to arriving at the hospital.

After approximately an hour, her surgeon comes out to us with the good news that the surgery went fine. Relief floods your body like water in a pool. The next few days will be very uncomfortable for Lauren, but that’s to be expected. She is so resilient, strong and courageous; a fighter like none other. I have learned so much from her, she is my inspiration.

Wish I could say, that’s it for surgeries and visits to the Janeway but I believe we have only begun. The doctor that diagnosed Lauren, four years ago, knew what he was talking about when he said, ‘she has a long, hard road ahead of her.’ Little did we know just how long that road would be. Just for an example; while we were sitting in the waiting room today, the phone rang and it was the orthopedic department with an appointment for Lauren’s third hip surgery; on September 12th, just two weeks away and she’ll be in a body cast again! Her eyes will not be fully healed and she’ll embark upon yet another surgery. With no end in sight, maybe just a curve in the road.