Month: April 2019

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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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A Healthy Mind

The freezing rain falls like beads of crystals. The trees glisten with the sparkle of it’s radiance. Just looking at it makes for a picture perfect work of art. But on the other hand, it can also do so much damage. Especially when it’s weight weighs down on the electrical wires; can make for an unwanted power outage. And in today’s world it seems there’s so little we can do without electricity; yet we take it for granted and don’t miss it until it’s gone. Much like our health, we take it all for granted on a day to day basis, until one day it’s gone.

Because I have lived my whole life with a mental illness, I have learned never to take my mental health for granted. And at times when my depression, anxiety and panic attacks have gone into remission, controlled by medication or I have been experiencing a reprieve from it’s overpowering control, then I have realized that I need to enjoy every moment that I can. And experience life to it’s fullest, because you don’t know what morning you are going to be awakened by it’s ugly presence.

The past few weeks I have struggled with panic, so intensely that it haunts and terrifies me. I’m just after having a period of time, for about two years, when my panic attacks were gone. My mind and body can experience a panic attack without warning, whether asleep or awake. A panic attack is defined as, ‘the abrupt onset of intense fear or discomfort that reaches a peak within minutes and includes at least four of the following symptoms: Palpitations, pounding heart, or accelerated heart rate. Sweating. Trembling or shaking. Sensations of shortness of breath or smothering.’ And over the past several nights, I’ve been awakened from my fragile sleep by one of the worse attacks of my mental illness. I say this because  you literally feel that you are loosing control of your life and you are going to die. If you have not suffered from panic attacks, be grateful and never take a day for granted. Please remember I am not comparing my illness with any other illness and it’s not my intention to make it appear that I have the ‘poor me syndrome’, I know there are people that have it worse. But do remember it is the purpose of my blog to educate, help to tear down the walls of stigma that surrounds mental illness and to be a support for people who suffer from mental illness.

And that’s why today I want to speak to those of you who have good mental health. I know you can never understand  where I am coming from and what it feels like to have to fight every day of your life to just experience a ray of sunshine. Please don’t take it for granted and use it for good, use it to make this world a better place to live. I’m opening my heart to you today and hoping that you will never have to experience what mental illness really is.

I also want to address those of you who have a healthy mind and you are abusing and destroying it by using anything you can find to alter it. You have what I want so badly; a healthy mind. But yet here you are destroying one of the most valuable organs in your body. That organ that makes you who you are, your decision maker, your personality, your ability to feel. The next time you go to use drugs abusively, think twice, don’t do it. You are so blessed to have an healthy mind/brain; please don’t destroy it. I would give my life to have what you have; but I don’t and probably never will. Please say no to drugs!

I work with what I have and many days that feels like not much. My mental illness as become a battle that I have to fight every day. Maybe one day, I may find relief, find freedom, find the sunshine again. But until then, I will keep fighting, even on days when I feel like I’m not winning. I have come so far over the past few years and for that I am truly thankful. Although I feel I still have a long way to go, I’m still in the race, sometimes running, sometimes walking, other days crawling but I cannot give up. And I encourage those who are suffering from a mental illness, you are not alone. Keep fighting; you are strong, courageous and brave!

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CLOSING MY BLOG

These past few weeks for me have been an overwhelming sea of depression, panic and anxiety. My illness as so desperately tried to destroy me, to a point of where I just wanted to give up and not fight anymore. Fatigue had drained every ounce of strength that I had left in me; that I couldn’t fight anymore, even if I wanted to. Curling up into a ball and staying there would be so much easier to do.

I had been so tired of ‘well meaning’ people who know nothing about me, nor my illness but who think they have all the answers to  mental illness. And I know they mean well but sometimes it’s best they say nothing at all. Actions speak louder then words. A simple hug would do more good then a textbook of advice. But sorry to say society is quicker to give their opinion (not always fact) rather then a compassionate heart. And before I go any further, let me make one thing clear, I am not looking for pity (that I don’t need) but I do deserve respect and understanding. Just as I respect others feelings, thoughts and beliefs. I don’t always have to agree, I just need to respect. And respect meaning; ‘due regard for the feelings, wishes, rights or traditions of others’.

I reached a point this week, when I felt, ‘why do I do this to myself?’ Why do I speak so openly about my illness and in so doing, put myself out there for ridicule, stigma, misunderstanding and isolation. People are not always kind; and say or imply things that really hurt. And when you have a mental illness you are already in a vulnerable state. I was ready to say, ‘I’ve had enough and I was going to close my blog/website down. But then I remember the real reason I do this, it’s not about those ‘well meaning’ people, it’s not all about me, but it’s about those who are suffering with mental illness and do so feeling all alone. And for some reason, mental illness as always been an illness of isolation and even in today’s society is still so plain to see. But if I give up now, that would be one less voice that mental illness has and I will not give up. Despite adversity, ridicule and ignorance I will keep talking about mental illness. If you are reading this and you are guilty of stigmatizing mental illness, then shame on you for not educating yourself to what it means to be mentally ill; tomorrow it could be you or someone you love. But if you are someone who is suffering from a mental illness and you feel you are alone, you are not; I am where you are.

There are so many who are suffering from mental illness all around the world; mental illness has no respect of persons, no one is exempt. Just this week a famous Olympic swimming champion revealed he lives with depression. He said, ‘If I can get one message out there, it’s that ‘it’s OK not to be OK’. When he says, ‘living with’ he is implying/stating that his condition is a chronic illness. Chronic meaning, ‘persisting for a long time or constantly recurring’. Unfortunately for many of us, our condition is a chronic one; no different then any other chronic physical illness. So yes, I have a chronic mental illness that I have suffered all my life, but I am living with it. That doesn’t make me any less of a person; it just means I have an illness. And it also doesn’t mean that all mental illnesses are chronic, but for me; mine is. And if I have to go to my grave still struggling with this illness, then I will. Not unlike the countless multitudes of persons with cancer have gone to their graves, fighting to the end.

So today I hope I have accomplished three things. One, that I have helped to destigmatize the disease. Secondly, that I have inspired and given you hope in that you are not alone. Thirdly, that by acknowledging our own disease, I have empowered you to face your own disease openly and in the face of stigma. Our only hope of mental illness ever being publicly accepted by society, is through awareness, education and speaking out. We all have a part to do. Chin Up! We can do this together! I’m here for you!  Closing my Blog? I think NOT!

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The Seasons Come And Go

Winter as finally passed and Spring is so desperately trying to unfold. With Spring comes that feeling of new life, new beginnings, fresh hope and a warmth that inspires the soul. The cold, chilly winter season as reluctantly become another memory in time. Much as happened; good and bad. But yet we have survived another season; another season of life.

I can’t honestly say that the past several months hasn’t come without it’s tough times. It’s been rough on all of us, to say our life is simple, would be an understatement. Living with mental illness and cerebral palsy would be enough to send any family’s life into a whirlwind. And lots of days that’s what it feels like; you are living in a whirlwind. Where life is spinning out of control and you’re fighting to hold the pieces together. Some days you may feel like you’re winning and other days like you are loosing the fight.

With my mental illness, I must say it’s still an everyday struggle but most days now, I feel it’s a struggle that I am winning. I guess it’s like someone who has diabetes, they still have it but they have it under control. And for me with my depression and anxiety, I feel on most days I have it under control.  But each day still requires a lot of self talk, keeping my thoughts from becoming distorted and unrealistic, trying to keep life as ‘normal’ as possible and live in the moment. Is this easy to do? No, not at all but if I am going to beat this living hell, then this is what I have to do on a daily bases, if I am going to survive; I can never let my guard down. And maybe with this new season of Spring may come new life, new hope and new beginnings for all of us.

Lauren has certainly had her share of pain, hurt and uncertainties. The cold winter months have found her spending most of it in bed, recovering from two major hip surgeries, that can only be described as horrific. No child should have to suffer what this child as endured and will still have to endure in the months to come. Her first hip surgery was performed in May 2018, the second was done September 2018. It’s now April 2019 and it’s only now that I can say that she is bouncing back from her ordeals. She as missed majority of her school year in kindergarten. We are now in the process of gradually introducing her back into the school setting, which as to be done slowly, cautiously and at her own pace, due to her high levels of anxiety. But she is doing fairly well and her school as been so accommodating during this transition period and for that we are so thankful.

Life for us as parents of a disabled child will never be the same again. And I don’t say that in a selfish way but in a realistic way. I know that the only parents that will truly understand what I mean; are parents that are privileged to have a disabled child. Lauren may be six years of age but right now we still have a six year old baby. We do the exact same things for her now as when she was a baby. Except now it’s harder because she as grown to be a big girl, who requires constant lifting. And the 24/7 care doesn’t end and doesn’t get any easier.

I believe that life for all of us at this season of Lauren’s life is a little tougher. Lauren is so aware, so intelligent and so full of questions; questions that we don’t always know how to answer. For instance, yesterday we were going outside and out of nowhere she asked, “Daddy why do I have to be in a wheelchair?” I’m sorry but I wish that no child would ever have to ask that question. She’s realizing now, more then ever, especially since she’s gone back to school; that not all kid’s are in wheelchairs. So she’s wondering and asking, why am I in a wheelchair? It was only recently she asked Lisa, “Mommy, when you were a little girl, were you in a wheelchair?” How can we live without having a broken heart? There will always be moments like these when our hearts are torn from our bodies. And just one more heart wrenching moment, when she asked me while we were just lying in her bed, “Daddy did you see me when I done a cartwheel?” And I lied and said, “Yes my angel and that was the best cartwheel I have ever seen in my life”.

Nature may have four distinct seasons; Fall, Winter, Spring and Summer. All of which will come and go at it’s own designated times. Much like the seasons of life. Right now I am at a different season in my mental health then I was last year at this time. And right now Lauren is at a different season of her cerebral palsy and we have discovered that those seasons are forever evolving and changing. We just have to learn to adjust to each individual season and to learn to find warmth in the coldness, sunshine in the rain, new life amidst the dying dreams. Healing and hope when the season as gone.

 

 

 

 

 

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Triggers

My pen sets silently in my hands. It doesn’t want to move, much like my whole body. Depression as washed over me like an ocean wave. The last few months have been a very disturbing time for me, there has been many triggers that have aggravated my illness. Triggers are unpleasant and disturbing experiences that occur in your life that bring on an episode of intense depression and anxiety (in my case). And when this happens, you have to fight for your life again.

Right now this episode as left me with so many unwanted, irritable symptoms. I find it very difficult to socialize, I isolate as much as possible; my interaction with others are forced. I know I can’t  isolate, it just isn’t good for my mental health, but yet it’s all I want to do. I just don’t have the drive, the energy or enthusiasm  that is required to be in public. My triggers have knocked me down big time, but I know I have to get up, but how do you get up when you feel you have so little strength left; fatigue is a big problem. You barely have enough strength to crawl.

I have learned over the years what I have to do to survive but when intense depression strikes, your survival guide seems so unattainable. You push and push and push until you feel you can push no more. But push I must, or if not I will be in deeper trouble; and I am not going there again. To that dark tunnel that has no light at the end.

When you are feeling this way, you search for that something that can bring you that glimmer of hope. But when you are enduring such intense depression; your thoughts are so distorted that you cannot see the light, the smallest task seems so impossible to do. It’s at this point you have to give it all you got and find some good, somewhere. It’s there, just so much harder to see when you are in a cloud of fog.

Some things that I’m using to bring me through this valley of despair at the moment are; looking forward to Logan coming home from school, hearing Lauren saying ‘Good morning Daddy’. It’s in the little things lots of times, the smell of supper cooking, the sun shining, looking outside and realizing that spring is here. All does my heart good.

It’s great that I do enjoy various hobbies and when I’m not feeling well I try to distract myself by engaging in them. Right now I started painting again, it’s great therapy and certainly a great distraction. Painting is a great way to express your feelings and emotions. For example, I can paint pictures that portray calmness, peacefulness, beauty and solitude. All of which help to reflect positive thoughts. I also love playing the part of ‘Walter on da line’, but that is very difficult to do when you are not feeling well. When I do feel well enough, I find it is such  great therapy and laughter is great medicine.

Writing about mental illness certainly brings no glory to myself. In reality, I really would like to hide under a rock and never come out, so the world would never see my illness. But I believe in order to help others that are suffering with mental illness, we have to talk about it. And in doing so, we help others realize they are not alone, we educate each other, and we help break down the walls of stigma that still exist today.