Month: August 2018

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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. 

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“IT”

Most people probably don’t give “IT” a second thought. Whether they do or don’t, doesn’t change the fact that “IT” exist. Ignoring “IT” won’t make “IT” go away. “IT” indirectly affects all Canadians at some time through a family member, friend or colleague. In any given year, 1 in 5 people in Canada will personally experience “IT” for themselves. “IT” affects people of all ages, education, income levels and cultures; no one is exempt from “IT”, “IT” is a raging beast from which no one can hide. “IT” is called MENTAL ILLNESS.

From me, “IT” has stolen my life. When things seem normal and fine on the outside; the beast is at war, “IT” never rest. I run and run; I desperately try to outrun “IT” but “IT” still cast it’s ugly shadow, because you cannot outrun your shadow; where you go, “IT” goes. When I want nothing more than to see beauty, the sunshine, the flowers; “IT” cast it’s ugly shadow. “IT” has stolen my ‘normal’, what seemed like normal, as turned to abnormal.

When all around me, everyone is seemingly enjoying life, rushing here and there, no thinking twice about performing a task, laughing at not so funny jokes. But “IT” as captured my ‘happy’ and only releases it when “IT” decides to. I have become a prisoner in my own mind, that’s what  “IT” can do.

“IT” affects your whole family, not caring who it destroys. What relationships “IT” ruins. “IT” takes no pity on the damage it can do to anyone in its path. The time “IT” steals from, time shared with your loved ones, spouse, children, family and friends. Time that you can never retrieve, time you cannot get back, time that is lost forever.

But “IT” is a living cancer, trying desperately to destroy the life you so long to possess. There’s nothing you want more then to be free, to be at peace, a chance just to be the person you know you can be; if “IT” wasn’t in your way. Maybe tomorrow, “IT” may decide to give you a good day, just maybe.                     

 

 

 

 

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I Have Tried Everything

I remember getting to a point in my illness when I felt I had tried ‘everything’ and I still wasn’t better. I had done months of therapy, counselling, I had tried every antidepressant, anti psychotic, every cocktail of medications, shock therapy and yet I found no miracle working relief from my ever emerging symptoms of my illness. Because of this, much panic, hopelessness and fear of not escaping this hell sat in. I felt I was at a dead end and my hope was depleting.

So the statement; ‘I have tried everything and nothing works’ in fact may be true to some extent but in another, is not. When you do get to this point, you still haven’t tried ‘everything’, you may think you have but no you haven’t! You have to consciously make the decision everyday to fight for you, you still have ‘you’, you cannot give up on you. But ‘YOU’ have to do it; no one else on this earth can do it for you. You have the power and strength within you to do it. Where this inner strength comes from I believe is from God; our creator, He who knit us in our Mother’s womb, He who knew the plans He has for us, even before we were born. He who said, ‘I will never leave you or forsake you.’

Yes, everyday is still a struggle; there are days when I feel so all alone, tired from the fight but I have to be determined to not give up. Though some days my mind tells me that life is not worth it anymore, I cannot listen. I will find the strength within me and God is there somewhere, even when I don’t feel Him. So when those days overwhelm me and I feel I have tried everything and nothing works; I have to remember how far I ‘have’ come and remember that I will come out on top, stronger in the end.

I will no longer look at myself as a victim but as a conqueror. It’s the fight that makes me stronger. Yes this illness is looked upon so differently then any other illness. If I had cancer, kidney failure, heart disease, diabetes, etc. all of which are looked upon with concern, support and compassion (and so they should be). But because it’s a mental illness, many, not all, look at you in a different light, really so much so that you are looked upon as being defected. They look at you as if you are a different person; and yes I agree that the illness does change you but it’s not your fault nor is it mine. I hate this illness for all it as done to me but I am coming back; all in time. It’s so difficult for friends and even family to sometimes understand what’s going on because of our mental illness. But educating themselves is the best defense against misunderstanding our behavior and separating themselves from us, when in reality there as never been a time when we needed them more.

Today I realize we all struggle with something; whether that being a sickness, addiction, lost, marriage struggles, loneliness and hurts. But I also realize today that if we feel that we have tried it all and nothing works. Then I am here to tell you (and to remind myself) we still have hope, hope in God, hope in ourselves. It may not be an easy road but it’s a one that leads to hope, light and a one that we are not walking alone. When we loose faith in God and ourselves, it’s then we have nothing left; we have no hope. So let’s keep hope alive and never give up!