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.

 

Rewrite Your Blueprint

I think I lost the blueprint for my life. The life I have is so blurred and out of my control that I feel lost in the whirlwind and I’m just spinning on an hamster wheel and getting nowhere. I believe when we’re young and full of anticipation of what we want in life, what we will be in life, we dream big. And there’s nothing wrong with that except sometimes those dreams don’t always happen the way we planned, the blueprint we had planned and designed for our life gets lost and we are left disappointed, frustrated and unhappy.

I believe that the greatest need within all of us is just to be accepted, loved and to belong. Our blueprint is not all about what our careers will be, although that’s a big part of the plan. And lots of times when we’re young our dreams of what we think we will do or become don’t even come close to what we thought it would be. Seasons change and so do we. Sometimes that change happens naturally and willingly, other times it can happen through unforeseen circumstances that are out of our control.

When I was in High School, many decades ago; I didn’t really know what I wanted to do with my life. And if I did know, my plans would have come to an abrupt halt, when I had a (what they called then) ‘nervous breakdown’. I became disabled to a point of not being able to function, this went on for months. So already my blueprint was shattered and torn. Every decision I made after that was always affected or altered by my illness. I felt so alone, dictated by my illness and afraid. Afraid that any decision I made for my life would awaken my ugly, sleeping lion within me.

But I knew I had to move on in spite of my illness. So I planned a blueprint for my life with what I had, a life with limitations. But I couldn’t let my illness control my life entirely, I had to move on. I completed my high school education and went on to College. And for approximately thirty years I owned and operated my own business. Easy right? Not at all, I had several episodes of depression and anxiety throughout those years but still functioned and carried out the  plans of my blueprint.

For years marriage and children were never part of my blueprint. But then in my thirties, this beautiful young lady walked into my life and I knew I had to redesign my blueprint; my plans had changed. And on August 9,1997 we were married. We lived an amazing life, moved to St.John’s where we lived for fifteen years and had two beautiful children.

Yet under all this amazing life as we knew it, loomed my ugly, unpredictable illness that I had kept under control with medication for all those years. But then it happened; nothing was able to tame this roaring lion within and it lunged into full force. This attack left me disabled both mentally and physically. It destroyed everything in my life, every area of my life was affected. I was left for dead, with no will to live. My blueprint was burned to ashes.

Almost six years have passed, I had to redesign a brand new blueprint for my life. A blueprint that I would never had imagined I’d ever be designing; where I am and who I am is so far from where I thought I would be at this season of my life.

Bitterness and self pity often knock at my door, but I can’t let them in. They would just make my life worse and that’s certainly not what I need. I’ve began to realize I need to redesign my blueprint of what I think my life should be. My blueprints of the past are gone, I have to stop dwelling on what they were and design a new blueprint. A blueprint that is based on what I have right now, whether that be good or bad, a blueprint that is not crystal clear anymore. And when my life feels like it’s spinning out of control, I have to sit down at my drawing table and start designing a life for this moment, for today. And throw  away or discard those old blueprints of where I thought I would be and be content with where I am at this season of my life.

So if you are like me and your blueprint for your life, is not so perfect, it’s not at all what you had planned. It’s best we stop fighting what we think it should be and redesign a new set of blueprints. Accept the reality of what is, and learn to enjoy what we do have and stop dwelling on what we think our life should be. Even if that means giving up on that misguided dream.

 

Hanging By A Thread

I feel like I lost my ability to write; I just stare at my paper and nothing happens. Not that there’s nothing to write about, maybe just that there’s too much going through this head of mine and I don’t know how to express it anymore. Almost like, what’s the point? Who’s listening? Who cares? The last few days have been tough, and I mean tough, unexplainable tough.

When you struggle/suffer from a mental illness, it just doesn’t go away when you will it to or want it to. When you awake in the morning, you don’t choose how you are going to feel today, you just hope that it’s going to be a good one. Well, the last couple of days have not been good ones, you feel like you’re hanging by a thread and if you let go you are going to fall into this dark hole, a bottomless pit and you just keep falling.

The symptoms of depression and anxiety are so crippling and disabling. Everything I do I have to push myself, the everyday tasks are never simple or enjoyable. The overwhelming fear and inability makes them nearly impossible to do. You want to hide, to isolate; just escape. But you can do neither, life happens, life still goes on and I have to move along with it, in spite of it all. Whether I feel like it or not; it as to be done and I do it. I guess I’m stronger then I think I am because when I’m at a low, I have no idea how I can move on. But I do!

I’m tired of performing, exhausted from the fight, laden with the burdens, the load is just too heavy to carry. What are my options? Give up? Keep fighting? In my human strength, I would have given up a long time ago. But that still small voice keeps reminding me, ‘I got this, just leave it up to me’. And I try with every ounce of strength that I have left in me, and at times that’s pretty limited, to put my trust in the God, who when I’m feeling low, seems so far away. But I know He’s there, He’s got to be, there are no other answers; only He can provide what I need. So when I’m hanging by a thread, it’s the hem of His garment.

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!

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.

Reminiscing; It’s Never Too Early

Can you believe it; Halloween as come and gone once again for another year. The ghosts and goblins have disappeared into the misty night once again, to return next year. One seasonal event leaves and another is about to burst into full bloom, the spirit of Christmas. It seems Christmas comes earlier now then when we were children.

The stores display Halloween in one aisle and Christmas in the other, kind of ironic in a way. I remember when Mom and Dad would take one day and travel to near by Grand Falls and shop for all nine of us children in one trip. Nowadays people shop all year around for, not that one perfect gift, but for many gifts. I remember the excitement of looking out the window of our home for their car to return, laden with Christmas.

One Christmas as a little boy I remember getting a plastic toolbox filled with plastic tools. I thought I had the world, it was the most amazing thing I had ever seen. I was so full of the Christmas spirit I thought I would burst, the magic of Christmas ran frantically through my veins and mind. I could barely contain myself.

I wonder do the children of today burst with that same excitement and anticipation? I think they do but in a different way. For us it was that only time in the year when we would receive a gift that we would never receive if it had not been for Christmas. But today the gift receiving aspect of Christmas lasts the whole year, and therefore I believe children have lost the appreciation of that one sacred gift. I think the magic of the season hasn’t changed. Children today believe in it’s magical, unexplainable and fascination; just as much as when I was a child. I guess the magic of Christmas will never change, for without it, Christmas would loose it’s appeal and disappear like the melting of the snow.

What about for us adults? Have we lost our Christmas spirit? Do we still believe in the magic of Christmas? Is Christmas still the season of miracles? Yes, I believe Christmas sometimes can become overwhelming, stressful, sad and lonely for some, at different seasons in our lives. But I believe there’s a kid in all of us and that kid will never loose it’s Christmas spirit, magic and hope.

No matter what our circumstances this Christmas, whether sad or happy. May we always find the hope that the season brings. And when we stand in the darkness may we always find hope by looking up at that light. The light that still shines from that first Christmas star, still shines in our sky this Christmas night.

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.

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.

 

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.

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