Author: harrisclyde@hotmail.com

Hi! My name is Harris Tucker. I live in Bay Robert's, NL with my beautiful wife, Lisa Kennedy Tucker and our two adorable children; Logan and Lauren.
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Never Take Today For Granted

To say that the last few days have been anything but wonderful, would be an understatement. Nothing as changed in my life that would trigger a flare up of my anxiety and depression. It just happens, I have no control over my illness when it decides to control my mind and body.

Yes, I did say, ‘mind and body’. This illness affects every aspect of your life, and some days leaving you crippled and disabled. Confined to the most inner core of your brain and leaving your body paralyzed as it were and difficult to move. Trying desperately to move and fight this war within. When on your very bad days you just want to give up, lie down and sleep away your emotional pain. But I cannot always do that, my anxiety makes it very difficult to relax even enough to fall to sleep. When my eyes open to the morning light, I cannot just lie there and enjoy the warmth and comfort of my bed, my thoughts would run away with me; so in order to not over think things, I have to get up and move. Staying there in my cozy bed would only exasperate my symptoms and make me feel worse. Getting up and moving is the best thing I could do for myself and everyone around me.

Hobbies certainly help in the control of my illness. But when I am really low, hobbies are the last thing I want to do. Sometimes I have to give myself permission to just take a break from it all. But I can’t let this break last too long because if I did nothing for extended periods of time, it would only increase my depression and anxiety. So I have to give myself a little pep talk, then a kick and try as best I can to get back on track. None of which comes easy for someone with a mental illness but life is not always about being easy.  The mental fatigue that comes with this disorder drains you of any physical energy that you may have, thus leaving you depleted and exhausted.

Life’s everyday responsibilities and demands put so much pressure on us to perform. Even for someone that is well; that can get overwhelming. But for someone struggling day in and day out with a mental disorder, it can seem impossible to do. So I can only do what I can and no more. I have learned how to say, ‘no’ and I know my limitations. My first priority is my family and I try desperately to be the best father and husband that I can be, in spite of my limitations and I know there are times I fail but I do give all that I have and sometimes because of my illness, that is just not enough. But I have to accept that I can do no more then what my mind and body allows. When you do your best, with what you have, you can do no more.

Today I pray will be a better day, I never give up on hope. And when I do get a good day, I give it all I got and enjoy it to it’s fullest. Because we never know what tomorrow is going to bring. Never take today for granted because our lives can change in a moment.

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A Mind That Tries To Die

It’s an early, Fall morning and I just got Logan off to school. I walk in the house, after coming back from Logan’s bus stop, and there’s not a sound, total deading silence. Lisa and Lauren are still sleeping, probably after another restless night of Lauren being in her body cast. It seems she gets her best sleep in the morning. So I, not wanting to wake them, decide to sit at my desk and quietly play with my iphone. I had no intentions of writing but changed my busy mind when I scrolled upon a post that read, “Depression is living in a body that fights to survive, with a mind that tries to die”.

If there ever was the perfect  description of what depression is, because it is very difficult to describe in words, this would be the perfect description. I have lived a lifetime of battling this illness and doing so mostly in silence. It’s only in recent years that I have chosen to speak openly and honestly about my depressive disorder. I have on more then one occasion prayed to God, to just let me die. To escape the pain and hell I was enduring at that moment, to free my family of having to live with the torment, fear, and worry that I had inflicted on them from having this illness and lastly to finally have peace of my own. To not have to live in constant torment, to not have to live with a mind that would not stop to rest, to quiet that inner voice that would not shut up. Even to this day,I still struggle, maybe not to the extent that I have in the past; but I still struggle. I would be lying to you if I said I weren’t. But I live each day as best I can, with what I have and my faith in God.

To get back to where I am today, did not come easy and I have to work each day to be the best that I can be. Living a ‘normal’ life with a mental illness does not come naturally or easily but with a lot of endurance, courage, strength and faith. If you are reading this and you can relate or ‘get it’, let me just share with you some words of wisdom that I have learned from having depression and have helped me to survive.

Let go of the PAST! No matter how painful that past may  have been, holding on to it will not make you feel any better. It will just keep eating away at you, mouthful by mouthful, until there’s nothing left. Letting go doesn’t  mean that you’ll forget but letting go gives you permission to live the life you have today, at it’s best. So let’s live today, live for the moment, it’s what we have; this moment.

Let’s stop worrying about other people’s opinions and judgments of us. We are, who we are, we are unique and that is not a bad thing. Stop ‘people pleasing’ , we will never please everybody and when we do, we free ourselves to live our own best life and not have to constantly be concerned about what someone else thinks.

Believe in yourself. And let’s not limit our beliefs to what other’s tell us. Believe in something because you know it’s right, not because someone else told you too. You have the power within yourself to form your own belief system. Doing so will release the power to live your best life. Believe in you, you are worth it!

Relationships; be very selective, cautious and aware of who you allow into your life. Relationships sometimes can ‘break’ you and that be a friendship or an emotional (love) attachment. If we need someone else to “complete” us, then we are walking a dangerous road. Having said that, relationships are a part of life and we certainly need them to enhance our lives. We certainly need them for love, support and companionship. If there are people in our lives that only bring negativity, then maybe we should rethink that relationship.

Don’t base your self worth on the worth of your bank account. If I did that, I would probably be worthless. Don’t let the decisions in our lives be made by money but by following our hearts. I had to come to terms with this when I became unable to work. It’s only now that I realize my worth is not based on my income. But what truly matters is my heart’s worth. I could have all the money in the world and still live a miserable life. And I could be the poorest in the world financially but be the richest on the inside.

And lastly my greatest means of survival has been my faith. A faith not based on any worldly contribution but a faith based solely on God ( not a god). And that being a God that is not confined to the four walls of a Church but a God who holds the Universe in His hands. A God that loved me when I did not love myself, a God that loves me unconditionally, just as I am.

So today if you are fighting to survive, with a mind that wants to die. Be encouraged, you are stronger then you think, there is hope, on your most hopeless days. Don’t give up, the sun will shine again!

 

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In His Hands

Night falls, day breaks; what will this day bring? Can I do this again? My strength is depleting , but life requires so much endurance and I wonder where does my strength come from? As a human being we have a limited supply, there is a fuel tank and there are times when I feel I am running on empty. But then once again that still small voice speaks to me and reminds me that, ‘He is my strength’.Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God, I will strengthen you and help you; I will uphold you with my righteous right hand”. Exodus 15:2 says, “The Lord is my strength and my song, He has given me victory”. Nehemiah 8:10 “Do not grieve, for the joy of the Lord is your strength “.

My life is anything but stress free. I am sure we all have stress in our lives and I am not comparing. I am just sharing my experience, to remind myself and to help others who feel they have no hope. I suffer from depression and have so all my life, I was born with it, genetics plays a big role in my illness. Choice was never an option. Do I become angry and blame everything that ever went wrong on my illness? I can and have but that’s the past, I cannot live there anymore. I now try to live in the moment (notice I said ‘try’, sometimes my human side tries to go back). But Philippians 3:13-14 says, “But one thing I do; forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus”. Is this easy to do? Not at all but in order to survive and live a life that is somewhat ‘normal’ I have no choice. I just pray everyday for His strength, to be mine. And I have to believe that His promises are true.

Everyday I am plagued with my illness, it’s a never ending battle. Would I like to be healed of this illness? Of course I would, there’s nothing I would like more (except for Lauren’s healing). But that’s not God’s will right now for Lauren or me. Does that make me angry, discouraged and question God? Yes it does! But so did the apostle Paul, he pleaded with God to remove his ‘thorn in the flesh’. But God said, ‘no’. He does assure us though of His grace and strength in our sickness and infirmities. 2 Corinthians 12:9-10 says, ‘And He (God) said to me (Paul), ‘My grace is sufficient for you, for my strength is made perfect in weakness’. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me’. ‘For when I am weak, then I am strong’. The dictionary definition of infirmity is ‘a physical or mental weakness’. I guess for me that would be my mental disorder, it’s what makes me feel weak but in reality because of this weakness, Christ’ power rests upon me and therefore I am strong. What an amazing encouragement for those of us who feel weak, beaten down and broken. Our strength is renewed daily through Him who died for us.

So on those days when I feel like a nobody, worthless, hopeless and good for nothing; I am forever reminded of God’s love for me. I don’t measure myself anymore by Society’s standards because if I do, I will surely fail and never measure up. But God loves me just as I am, Jeremiah 31:3 ” I have loved you, with an everlasting love. With unfailing love I have drawn you to myself”. On those days when I don’t love myself, God reminds me that I am His and He loves me with an unconditional, everlasting love. Roman’s 8:38-39 reminds me every day; “For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord”.

Today we have to take Lauren back to the Janeway for her post surgery check up. Here we have our five years old little girl lying in bed with a body cast (for the third time). Does that give me cause to be angry, sad, to question? Yes, of course it does, I wouldn’t be human if I didn’t. I bring her to the Lord in prayer for healing, but that healing never comes. Is that cause to be upset and question God? In my human weakness, yes it is. But I know that God is much greater than I am and He knows what He’s doing, He knows what’s best, even when I feel lost and helpless; He’s still in control. And I have to learn to take it one day at a time and to trust in Him fully. Lauren is in His hands, whatever the future holds; we are all IN HIS HANDS.

Whatever this day may bring, I know I am not alone. My strength comes from Him and Him alone. So be encouraged today; God loves you; you’re IN HIS HANDS!

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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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The Search For The True Me

Please click on the link below or copy and paste in your URL to read another sad story of a young pastor  who lost his life by suicide. https://www.facebook.com/566080522/posts/10160895596230523/

I cannot stop from exposing mental illness, the urgency and desperation that is felt throughout the world, is ever rising. Never before have we lived in a world/society that is so highly stressed; the expectations that are placed upon individuals are overwhelming, the pressure to be the perfect husband, father, wife, mother, professional and provider are just beyond being realistic. We live in a fantasy environment, where we have unrealistic goals set for ourselves by society. WE have sat ourselves up for failure. We are not perfect and we do not live a perfect life, so lets stop pretending! The facebook cookie cutter lifestyle is the pressure cooker for developing poor mental health and self worth. Where will it all end?

Sadly, many who feel they cannot cope with the expectations of  society, the pressures of life and mental illness; turn to desperate measures; drug abuse,  alcohol abuse, suicide and  anything that will kill the hurt and heal the pain. And we wonder why we have a drug problem on our hands, we need not wonder. Our need and drive to be happy, for some can only be found outside themselves. If we are looking and searching outwardly we are setting ourselves up for a big let down. Happiness cannot be found in anything outside ourselves.

But how do we find happiness within ourselves; when all we feel is sadness, emptiness, loneliness, worthlessness and the list can goes on? To begin with; we are not our thoughts or another way of looking at it is, we are not our minds. There is more to me then my mind and my thoughts. I am a being, a living soul, a spiritual being. That part of our being that exist deep, deep down inside us. It’s not an organ of the body but its our Being. Because a thought enters my mind, doesn’t necessarily mean that it is real or true. Many times our thought are distorted and untrue; so we cannot always listen to our thoughts and let them define us.

We find happiness within us by releasing our past, letting it go; no matter how painful. If we hold onto the past we will never heal, we will never move forward. Letting go basically means giving it over to a spiritual power, someone bigger, someone all knowing. Letting Him bear the weight. We don’t have to carry it anymore. 1 Peter 5:7 says, ‘Cast all your cares on Him because He cares for you.’ And when we do, it’s like a heavy load that we’ve been carrying is lifted.                                                                                                                                                                         Not only do we need to release the past but we also have to give Him(God)  our future. We have no control over what the future holds but we can trust that He will take care of that for us as well. Surrendering our past and future to Him doesn’t come easily or instantaneously; it will take time and practice. We have to learn to trust in Him and all will be well. Matthew 6:25 says, ‘Take no thought for tomorrow(don’t worry); for tomorrow shall take thought for the things of itself.’ Once we learn to surrender both past and future to Him, then our mental health and spiritual health will flourish.

The greatest lesson I’ve learned in regarding my mental health is, living in the moment, some call it mindfulness. The moment is all we have, the past is gone and the future is not ours to own. This requires taking control of our thoughts; our thoughts will travel both to the past and to the future. But it’s here we have the power within ourselves to control these thoughts. When we travel in either direction we have to bring our thoughts back to the moment; to the here and now. It’s in this moment we will find peace, happiness, joy and contentment; no matter what our past and no matter what the future, we can find happiness right in this moment.

So if you are hurting today, if you are tired from trying to be okay, if life’s expectations have become overwhelming, if you feel you just don’t measure up, if you have an addiction that is out of control and destroying your life, if your past is too painful to go on and your future seems hopeless; don’t give up!  I don’t claim to have all the answers, I don’t, but I do know that with time and God; you can do this. Believe in yourself, you are worth it! I won’t pretend this will be an easy road but you are not alone.

Each of us were put here for a reason, there is a purpose and we will find it. Mine did not come with twenty- eight years of being a business owner but mine came with a lifetime of suffering with a mental illness (major depression and anxiety). Being a business owner was not my purpose in life, it was my job, it did not define who I was on the inside. But now I feel my purpose is to tell others that they can survive and live with a mental illness because I am living proof. I can speak from my heart, from my soul, from my innermost being because I have lived the horror and I can tell you there is hope, there is happiness, there is joy; in spite of it all.

This is an amazing song that  has brought  me much hope!  May you find encouragement, hope and strength in the words and music!

 

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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.

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And That’s Suppose To Be Okay?

Some well meaning people say, “It will get easier with time”, and I thank them because I know they mean well. Will we ever grow to accept Cerebral Palsy and all the limitations that it imposes on Lauren’s life? Today it’s best you say nothing. I will feel exactly what I feel and that’s not pretty.

Lauren calls me from her bedroom, where she spends way too much time but there are days when that’s where she’s most comfortable and free of pain from not sitting. And that’s suppose to be okay? When I arrive at her bedroom she says, “Daddy will you help me ride my bike today?” What am I suppose to say; no you can’t do that? Through a broken heart and tear stained eyes, I tell her we will try. And she’s fine with that. You’re probably thinking, you shouldn’t let Lauren see your tears, that might upset her. Well, I wish she could see my tears but you see, Lauren is vision impaired and she can’t see my tears. So we are talking face to face and  Daddy is one broken man. Broken because I realize also that she can’t see my liquid ink flowing down my cheeks. They’re invisible to her. And that’s suppose to be okay?

But today Lauren and I will take the dog for a ‘walk’. Lauren will always ask if it’s raining today, because she knows if it’s raining we won’t go. It’s not raining, so its a nice day to go for a walk. Lauren in her wheelchair, holding the leash, that’s attached to her chair but she doesn’t know that because she wants to hold the leash by ‘herself’. So off we go for our walk…. And that’s suppose to be okay? That’s easy for you to say because you are not the one pushing the wheelchair.

I’m not being angry at anyone, I’m just stating a fact that it’s not okay. It’s not okay that Lauren can’t ride her bike, it’s not okay that Lauren can’t see my tears, it’s not okay that Lauren really can’t ‘walk’ the dog, it’s not okay! And I feel justified in saying, it’s not okay!

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8 Things That Plague My Life Because Of Mental Illness

Mental illness, like any other illness, brings with it many changes and things that we have to cope with on a day to day basis. We have to take these changes and learn to live with them and not allow them to consume our every moment. If at all possible, we have to accept them and realize that no matter what happens we can live, in spite of everything.

  1. Completing a task that once seemed so simple. Most simple task that we all perform on a daily basis, we don’t even think about; we just do them.  Driving on the highway (something I haven’t done for 6 years now) the fear itself paralyzes me. Every task that I perform I will now replay over and over in my mind.
  2. Being unable to work. “Not working, I do not work, I cannot work.” Now that makes me angry; I worked for 28 years and loved it (most times). It now makes me feel so worthless. I wish I could, there’s nothing I need more, both for my mental health and for the income that we so desperately need. It seems so simple but for me it seems impossible. 
  3. Fatigue! Whether from my medication, mental fatigue or just plain exhaustion from fighting to be okay. Tiredness is an everyday occurrence that controls what you can or can’t do in  your day.
  4. Isolating! Days when you feel like hiding away or not coming out of your bedroom (but that’s not an option for me). Sometimes you just want to hide “YOU” from the world or vice versa
  5. .’Zoning Out’. I’ll just kind of withdraw from a conversation I was holding and zone out, unblinking, staring blankly at nothing. Maybe sitting in a room of people and totally separating yourself from everyone and everything in the room and creating your space in your mind.
  6. Sighing!  Everyone thinks I’m angry or frustrated all of the time, when really I’m just exhausted and overwhelmed. And sighing is just a release of negative energy.
  7. Losing my “Train of Thought”. I can lose my train of thought mid-sentence and often forget very common words. My mind just goes blank and I fumble for the word. Many times I have to be reminded of where I was and what I was talking about. This could be both frustrating and humiliating.
  8. Memory! I believe we can all forget things at one time or another. But for me there are blocks of my life that I forgot. Details that I can never recall. A song that once I probably knew every word; I now have to trust to writing the words on paper because I cannot depend on my memory anymore. Maybe it’s best I do not remember some things, maybe I don’t remember for a reason.

These are just a few things that my illness as plagued my life with, there are many more. But I have tried, to the best of my ability, to live above my illness. It’s one moment, one hour and one day at a time; it’s what we have. We cannot live in the past, we cannot dwell on the future but we can live for the moment!

 

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Lauren’s Unending Pain

I guess Lauren as hit another bump in the road, there’s been plenty. From the time she was diagnosed , at age one, with Cerebral Palsy, there has been one bump right after the other. Life as certainly not been kind to this little girl; certainly not fair. The challenges that come with Cerebral Palsy have been too many to count. You might say will look on the bright side; well I’m looking but not seeing a lot of brightness at the moment. There is nothing pretty about Cerebral Palsy and if she were your child, you would probably understand our frustrations and helplessness.

Now don’t get me wrong, Lauren is one of the most beautiful children you could meet, she is an angel personified. She awakes in the morning and I say, “how can you look so beautiful the first thing in the morning?” She gives me a smile no matter what. Her intelligence goes far beyond my own, well in that case she doesn’t have far to go lol, so let’s say Mommy’s. We are so thankful for the many positive qualities that Lauren possesses.

But we cannot overlook the obstacles, when it comes to her health, that she has to endure. The castings, surgeries, physio, etc. that she has had to tolerate, is more then an adult could ever endure. But she is brave, strong, and courageous, yet we cannot turn our hearts away from the not being able to walk, not being able to sleep alone, the seizures, the cries and screams of pain and fear. Those are the things you can’t overlook and ignore and only see the good. Because with this illness comes the not so nice side.

Lauren was scheduled (so we thought) for her third femoral and acetabulum osteotomy, this time on her right hip. The surgery was booked for tomorrow (August 9) but after we finally got someone to answer the phone (after calling for two weeks), we were told there would be no surgery and they couldn’t give us a time when it would be done.

Now please understand my anger and frustration with the Janeway Hospital. It’s bad enough that we experienced this same crisis on her last surgery and now for it to happen a second time, is beyond belief. Here we have a little girl who just recuperated from one hip surgery and spent weeks in a body cast, And from today, to the day her cast came off, Lauren as screamed in pain every time she is moved. So her summer as not been what you would call playful and enjoyable.

For the past few weeks , the haunting thoughts of having the next surgery performed, plagued our thoughts. How could we do this again and live through the horrors? But we were willing to do it because it was what Lauren needed done so desperately to help ease some of the pain that is not going away without this surgery. Then to be told so politely that the surgery was not taking place, just devastated us. How can she go any longer, enduring this inhumane pain but according to our Health Care; that’s the way it is in the summer. In the SUMMER??? The season should not dictate available health care for our children. She’ll have to suffer a while longer until it’s convenient for someone to come back from holidays. If this were a dog that was in pain and we were withholding from taking her to a vet; we would be charged with animal cruelty and be aired on the 6:00 News. But in this case it’s a child and our hands are tied.

We are Lauren’s advocates right now; and we speak on her behalf but right now Lauren is going to speak for herself:

‘I can’t walk, my legs won’t work”

“But I want to walk like Bruddy”

“Am I having a cast this time?”

“Why did the Doctor have to cut me?”

“What did he cut me with?”

“My leg hurts”.

“Could you rub my leg and make it better”.

“I’m afraid”.

These are some of the questions and statements that Lauren as said over the past few months. Could you please help her and answer some of her questions because we just don’t know what to say anymore.