Tag: CP

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Lauren’s Chair

There is something quite surreal about ordering a wheelchair for your child. You sit matter of factly as you choose colours and options. Lauren chose hot pink and purple. You see, to her, this is just like any other normal that she knows. And let’s face it, she makes even a wheelchair look cute! I hold back pinned up emotion and smile my teethy smile as we ‘design’ Lauren’s next form of mobility. Two years ago when we purchased her Kimba stroller chair, we had hoped that by the time she outgrew it, she’d be at least taking steps. Not so…
So, we applaud as she ‘test drives’ a couple suggested options and finally agree that the ‘Zippy’ is our choice. There is an hot pink zippy in Lauren’s future and for her, I have to keep smiling big, clapping loudly; fighting back my heartbreak as I continue to pretend that it’s all ok. Maybe one day, I’ll love her hot pink chair, but for now I must focus on its precious cargo that would have no mobility otherwise. It sure is a lot to process and it’s a coming to terms with reality. One step at a time..

Written by Mommy

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Lauren’s Journey Of Hope

Its Laurens’ fourth visit to the Children’s Shriners Hospital in Montreal. This visit is filled with worry, uncertainty, apprehension but also with hope. This visit is off to a bad start already because Lauren now has two dislocated hips and that concerns us very much. The rhizotomy surgery that we are hoping for Lauren to have (which right now is her only hope of walking or having some form of mobility) is right now looking very bleak because the surgery requires the patient to have two good hips and that is not Lauren’s case.

The day began with my alarm arousing me out of my sleep into reality. Lauren and I go and make sure Mommy and Bruddy are out of bed; we don’t want to leave anybody ‘Home Alone’. Everybody gets ready and off we go in our van to the St.John’s Airport. It’s kind of icy but the road is okay.

We had a 5-6 hour stop over in Halifax which made for a very long day. But to brighten our day; Aunt Mary, Rochelle and Ben came to visit us at the airport which was so nice to see them again.

Now we’re off to Montreal, Sissy is going strong (no nap yet today), Bruddy is sleeping soundly.

We have arrived in Montreal and had a very, well deserved rest/sleep at our Hotel. Morning came too soon, the uncertainty of what the day could/will bring is overwhelming. But off we go to the Hospital.

X-rays are done first, she was really good. Then the orthopedic surgeon, Dr Canten, came to talk to us. I just hate being kicked in the guts and our hopes being crushed at the same time. She told us Lauren will need both hips reconstructed at separate times. Can’t do both together, she would lose too much blood and too stressing on her body. Then she said, ‘rhizotomy’ was  not an option at all. This was not what we wanted to hear. How can we has parents accept that the one hope of her walking is taken from us? We just felt like leaving and coming home but of course we can’t do that, maybe the day will get better.

Now  it’s off to the 2nd floor for Occupational Therapy and Physio Therapy. Well that was a waste of time. Lauren did not cooperate and just cried through the whole thing. No fault of her’s, she was just exhausted and scared and so were we. They certainly didn’t get a true picture of the real Lauren.

We were receiving some very bad vibes, we knew this was not going in our favour; call it parent intuition. We reluctantly moved to assessment room #1, where we would meet with Dr. Farmer…..he held all the cards. He spoke words we did not want to hear, this is not the way it was supposed to go. Before anything else could be done for Lauren, she has to begin another new medication for dystonia ( clubbing and twisting of her hands, etc). Left and right hip and pelvic reconstructive surgeries done at separate times. Then a baclofen   pump to be surgically placed under the skin, which will help reduce some spasticity. The rhizotomy surgery was certainly not on the top list of options.( I had to stop writing here, I could not see the keyboard for tears. Am I dreaming or is this reality? Are we talking about my little girl, so innocent, so fragile. She doesn’t deserve this, her life is just beginning. Where’s the fairness? God help us to make sense of it all).

This was a lot of information to analyze and accept. So we just couldn’t take anymore and asked if it were okay to go back to our Hotel, which we did.

Now we are back on the ‘Rock’, feeling no further ahead then when we started. How can we put Lauren through this horrible chain of surgeries? Most parents are devastated when their child falls and scratches their knee. And then bad enough are the surgeries but with the hip surgeries she will have to be placed in body casts. In this case, ignorance would be bliss, but we know all to well what a body casts involves.

It’s confirmed today that Lauren’s first hip surgery will be done on March 28th. New medication, artene, for dystonia, will begin next week.

Our hearts are heavy as we try to keep our chins up and shoulders back. Bottom line is Lauren’s life will revolve around surgeries and procedures trying to fight an ugly condition that bears the name Cerebral Palsy.

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Lauren’s Adventure to McDonalds (in her wheelchair)

When Lauren was diagnosed with cerebral palsy, little did we know what would be involved. From surgeries, botox injections, seizures, therapy, CP Clinics and the list goes on; it’s a never ending journey, always evolving. And that journey is not always on a smooth, straight road but many are the bumps, turns and potholes. But I would just like to elaborate on one such pothole that we’ve hit, many times and that being accessibility.

If you are not confined or dependent on a wheelchair or the person behind pushing the wheelchair, you probably have no idea what I’m talking about. You so innocently take your accessibility into a building, restaurant, house; all for granted. Many times I have wished I could  take the owner of a business, a public building, etc. on a journey in the day of a life of someone in a wheelchair. Maybe just sit “them” in a wheelchair and say, ” now go and let’s see how far you get. Their view of accessibility would drastically change and maybe look at it in an whole new light. And sometimes that’s what it would take.

I’m going to zone in on one business in particular and come for a ride with us in Lauren’s wheelchair.

It was our first visit to McDonalds in Bay Roberts ( I love freedom of speech) when we moved here two years ago. We pulled into the parking lot and searched for the handicap parking spaces. Oops! not spaces; there was only one and that one was occupied. So I searched again for two regular parking spaces that could accommodate our side entry van. There it was, at the end of the parking lot but at least it would give us space to exit the van using the side entry ramp. Wow, nothing to that (I thought)!

Next we maneuvered our way through the parking lot and hit the curb sidewalk that we crossed, to only be faced with crossing the drive-thru entrance. A little dangerous for someone in a wheelchair or not. Then we got to the front door with no powered push button opener and then the second door, inside a porch smaller then the wheelchair; I was stressed to the max. Once inside I looked around for a wheelchair table, there was one but it was occupied. By this time I was so frustrated that I just wanted to leave but Miss Lauren was bent on getting her “happy” meal. So I obliged her and we sat in an aisle table. Then she wanted to go to the bathroom, I need not say more.

Then it was time to exit the restaurant, where would I start? But in order to get out of there I had to start my trek to get back to the van. Once I so anxiously got to the van; what to my wandering eyes should appear but another vehicle parked a foot from our entrance to the van. This made it impossible for us to access our van. What do we do? Wait, until whoever owned the vehicle to move, so we could pull out the ramp and enter the van. So we waited and waited…..

And that’s the story of our adventure to McDonalds in a wheelchair. And that’s when I became an advocate for accessibility (like I needed something else on my plate). Being an advocate certainly doesn’t win you any popularity contests, but that’s not why I do what I do. I do it to make change for the better, improve our society as an whole and to just make our world a better place to live for us “all”.

My advocacy began by making a phone call to the owner of McDonald’s , who listened to my concerns very attentively. I thought to myself, that was a little too easy. I was to learn later that I was right. He did tell me at that time that renovations were going to be done in the Fall and he would contact me for my input on accessibility.

The Fall came and construction began but no telephone call from the owner. So I thought, if changes were needed for accessibility, they would need to be implemented during construction, not after construction was complete. So I thought I would do the courteous thing and give him a call back to jog his memory on our past telephone conversation. I thought I must be talking to a different person, his professionalism just flew out the window. When it came to wheelchair accessibility he said, ” I will only do the “bare minimum” that is required to be considered accessible”. No regard, no compassion, no thought for those confined to a wheelchair; it was all business.

After that conversation I thought, okay, where do I go from here? I was more determined then ever. I went straight to the Government department responsible for enforcing the accessibility code/requirements. I told the department of my concerns and frustrations and they were totally on board. The next day they had an inspector sent out and several building code issues were enforced pertaining to accessibility. And for that I am, on behalf of my four year old daughter and all those who require proper accessibility, I say thank you. We now have push button door openers. Without advocating; these door openers were not in the plans and would not have been installed.

And to the owner of McDonald’s in Bay Robert’s (and out of courtesy I won’t give your name) but I say, “Shame On You”! I hope you will never have to be confined to a wheelchair or anyone in your family: but if you were, then you just might “get it” and have a heart. By the way, the renovations are really nice! Congratulations!

 

 

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I Want To Skate Like “Bruddy”

I’m beginning to realize our battles with Lauren have only just begun. And we already feel exhausted from making sure that Lauren’s rights are met.  We are supposedly living in an all inclusive society. A place where children are not singled out has being different. But I think where all children are equal, regardless of their disabilities. And never tell a child they can’t do something because the have an impairment.

Our dilemma, this time, began when we signed Logan up for CanSkate, who’s only requirement was an helmet, pair of skates and a fee. So on Logan’s first week of skating, I took Lauren along with us to watch ‘Bruddy’ skate. So when Logan got on the ice and we turned to go to a viewing area, Lauren started to scream and cry. When I asked, “what was wrong”. She answered, “I want to skate like ‘Bruddy’. I tried to distract her but she had her mind made up, “I’m going on the ice”. So I consoled her by telling her I’d call  and we would see if we could get her signed up for skating. Lisa arrived and went to talk to someone about signing her up, even with CP.  So the lady said, “sure no problem, this was an all inclusive club and by law were required to accept anyone wanting to join. Three weeks later we finally (after Lisa emailed to check on the hangup) got an email that saddened us so much. There were requirements and recommendations that stated in the email from CBNSC; “Sorry for the delay, we contacted SkateNL for recommendations who in turn forwarded our email to SkateCanada for further  recommmendations”. Is Lauren the only disabled child in Canada who applied for CanSkate?  And Logan could join, no questions asked, but Lauren was different and neither of the three clubs were prepared to register a disabled child! We try to instill in Lauren that she can do anything she wants to do , but maybe in a modified way. ” Their suggestions (SkateCanada) were to allow her to wear her double bladed skates and to use a red glider. Now Lauren can’t use a walker let alone a glider. The only other requirement was that there be an adult program assistant with her at all times”. All other children could use a juniour PA because they were “normal kids”. The catch being; there are no adult PA’s in the CBNSC. So we were expected to find our own, “they suggested that this could be a parent”. It’s our intention to treat  Lauren like Logan and be like the other kids; using a PA. Not her parents, we want to teach her independence, to meet and trust other people and be just like all kids. “Also to be required to pay the SkateCanada Insurance fee of 32.65” (for the parent). If this was what we wanted; we could take Lauren to the Parent and Tot Program for free, rather then paying SkateCanada for the same service. “Lauren is permitted to start skating once ALL recommendations from SkateCanada are met”.

I called the CBNSC to state my concerns, then SkateNL, no response, then SkateCanada. After having a satisfactory and pleasant conversation with SkateCanada, I was told they took my issues very seriously and would be working on them the first thing Monday morning, because it was now 4:00 on Friday and the office was closing. I received a text from CBNSC, I texted back saying that it was okay, I had contacted SkateCanada; I think that “upset the cart”. She called anyway (against my wishes) in which I said, I didn’t need to speak with her, I was satisfied with SkateCanada and could have ended the conversation there. And I had to end the call by saying, ” I’m finished this conversation because it’s getting nowhere. which she didn’t hear because she was too busy ranting in the phone and I ended the call. She then called back, I didn’t answer, I was finished with this conversation. She left an unpleasant message: I then had to block her number. She kept saying that they were only looking out for her protection. And  SkateCanada had the nerve to say, “and the protection of the others”. If they were so concerned about her protection then provide her with her own Adult Assistant, I’m sure they could find someone in NL. Or if they can’t provide the proper protection for disabled children, then maybe they should  say we can’t handle disabled children in the first place. And exclude them because proper protection is not available by the club.

It’s kind of ironic because it was only recently that Lauren participated in the “Blind Hockey Canada” because she has a vision impairment. The attendants were all volunteer juniour hockey members who skated with Lauren by holding their hands under her arms and skated around the rink like a pro. She was so excited and needed no assistance from Mommy or Daddy. She was a big girl now, skating all by herself; just like ‘Bruddy’.

I feel if Blind Hockey Canada can provide this service then so should SkateCanada. We left with a sense of pride and accomplishment. But with our email from CBNSC, it just left us deflated and discouraged. Sometimes when “we are only looking out for her protection”, it reinstates that she is disabled and has a parent you can take that has an insult. Lauren’s hurts won’t come from falling down on the ice but being constantly reminded that she is different and certainly not always included in the “Norm”!.

Attachment:

The ways in which I feel Lauren is and was discriminated against is;

  1. She was not offered registration immediately, three weeks later and “they” are still working on the logistics as stated in an email of October 6, we are now in week four.
  2. The email of October 6 from CBNSC and I’m quoting; “the possibility of registering Lauren for CanSkate program”. Implying it was a possibility not a certainty.
  3. If SkateCanada already had a policy in place concerning disabled children and were confident in how to register that child, then why the logistics between CBNSC, SkateNL, SkateCanada? Were they not competent enough to handle the situation and carry out a stress free registration that should have been handled in one day, like our son who is “normal” child.
  4. SkateCanada are responsible to have PA’s available and not expect a parent or guardian to be on the ice. Again pointing out that Lauren is different because she requires her Mommy and Daddy, and not a regular PA.
  5. If we had known that we would have encountered all this discrimination and and differential treatment of one of our children over the other, then neither would have been considered to join SkateCanada.
  6. If Skate Canada was so all inclusive has they claim, why wasn’t the proper protocol already in place; at a time in which a disabled child registered. Rather then all this disconnection between CBNSC, SkateNL, SkateCanada. I believe they are not has all inclusive has what they claim  or I would NOT be writing this blog. It’s obvious that neither club knew just what to do with a child with a disability.                                                                                                                                                                                                                                                                                                                                 Note:                                                                                                                                                                October 17  Conversation I had with SkateCanada                                                                      I talked things over with my wife and we decided that neither of our children will be a part of CanSkate because of the strained relationship we feel we now have with the club. We do wish to have a full refund of our son’s fee which can be forwarded to us by mail at……..                                                                                                                                                                                                                                                      As of today; November 4th we have NOT received a reimbursement.
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A Fight For Our Lives

It’s been said ,”that it’s the scrupy wheel that get’s the grease”. It seems I’ve been the scrupy wheel quite often these pass few months. If I have a cause that needs grease then I have no problem stating my case. From mental health issues, accessibility for disabled persons, inclusion for all, funding for disability needs, etc. We have to fight for our lives!  I feel this should go public, just to give you a glimpse into what we have to fight for and this is just a taste.

Several months ago I contacted  our MHA; Ms. Pam Parsons because we were barely surviving. I was speaking with her assistant, who I poured my heart and soul out to. Only to learn we did not qualify for anything ( I’m referring to some help, care and cost for Lauren who has Spastic Quadriplegic cerebral palsy) because of my wife’s income. I heard back from Ms. Parsons this week, not because of my visit to her office but because of my appearance on the NTV show, Heart Matters. It was obvious to me she did not make the connection. When I brought it up, she knew nothing of my visit and had to look up my file to see just what I was all about. I sensed a little disconnection on their part.

After a lengthy conversation with Ms. Parsons it was obvious to me that the Provincial Government was certainly not going to be our lifeline. Yet she did promise to work on our “file” that wasn’t looking all that hopeful.

She then suggested I contact our Federal MP; Mr Ken McDonald. Which I did and again could only speak to his assistant. I documented every word I said during this conversation. And I thought I should share it with you in hopes that public knowledge would add extra pressure.

She started the conversation with, “well what is it exactly you are looking for?” And I started my lengthy monologue:

What I am fighting for is our lives, I feel we are a family drowning in despair, tired of fighting, totally exhausted.

I have fought mental illness all my life, but five years ago I experienced a total mental breakdown. Meaning I was rendered totally disabled; unable to function. I was told by my psychiatrist there was no cure for my illness and that I needed to apply for Canada Pension Disability because it was unlikely I would ever return to work. Our world that day was forever changed. I went from a person that was self-employed for 28 years, to a person with an income of $900 a month through CPD. And because of my illness my brain and body totally shut down.  So my wife was now caregiver for me, my now six year old son, plus our now four year old daughter; who at one years old  was diagnosed with Spastic Quadriplegic Cerebral Palsy. Again a second life altering diagnosis that we had to face, in an already struggling family.

We lived in St.John’s as long has we could until we were forced into bankruptcy and lost everything we had. And on top of all this chaos, struggle and stress, my wife still had to work in order to keep this already struggling family together.Because of all this financial ruin we were forced to move to Bay Roberts; to be closer to family for some support.

Now five years have passed, we are still fighting to hold the pieces together. I am doing much better but far from a functioning, normal human being. With all the hell my wife has encountered, she was diagnosed now with severe anxiety and depression. Thus she was forced by her doctors  to take a leave; no human human being could survive the amount of stress that she is under and still function in a classroom of 28 children and not have a breaking point.

Its certainly true  that in our society today it takes two incomes for a normal family to survive. We are far from  “NORMAL”. Lisa’s income just does not cut it. With Lauren’s needs alone we require one income, to support her needs. Thus far we have had to depend on family, fundraising and various charities. This financial burden should not be placed on others. it’s not their responsibility to do so. And it’s not our lifestyle to be constantly looking for money from family and the general public, they have done enough. Now it’s time for the Government to step in. Lauren is a child that requires much needed treatment, equipment and care; for which we get no assistance.  She deserves better! Now what are you going to do about it?

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When God Says, “NO”!

I have prayed many prayers and of course expected a yes answer; in His time. But what if my answer was a “No”. This thought came to me today, well if God doesn’t want  to answer my prayer with a yes. What then?  How do I  react, what are my feelings toward God; will I be angry, disturbed or even become bitter. Would I question God and say, “why not”?  Did God say no in the bible to prayer request? I really don’t know the answer to those questions. So it’s my quest for this blog to search for the answers and share my findings with you. So let’s begin our journey.

Let’s start by looking at our earthly father. Did my Dad always answer yes to all my request? Not really because he would always say, “ask your mother’. And of course Mom had no trouble saying no when necessary. Looking back now, I really see that no wasn’t always a bad thing. No was for our own good, for our protection, safety and well being. It didn’t mean they loved us any less but sometimes a no answer was a, “because I love you so much answer”. So I believe there is a great parallel between my earthly father and my Heavenly Father. When God sometimes says, no, it’s because He has a greater yes in store for me/us.

Let’s explore the Bible and search for times when God said, no, to His people. In 1 Chronicles 28:3, God said no to David. ‘God said to me, “David told his people, “You shall NOT build a house for My name because you are a man of war and have shed blood”. But in his parting words, David chose to focus on what God had allowed him to do. Rather than wallowing in self- pity or bitterness regarding his unfulfilled dream, David praised God with a grateful heart. O may I learn  from David and have a grateful heart. Right now, that’s not exactly  where I am but through my weakness, I will find my way and gratitude will come.

The Bible says, “If we ask anything according to HIS WILL….we have what we asked of Him (1 John 5:14-15). This verse tells me there will be “no” answers, if what we are praying for is not His will. Here we must trust that God knows what He’s doing and sometimes in our human flesh we may be outside the will of God. “thy will be done on earth has it is in Heaven”.

The apostle Paul, author of most of the New Testament, begged God three times to remove a thorn in his flesh and God said, “no” (2 Corinthians 12:7-10). God had a greater purpose in mind, far above what Paul could ever imagine.

Then  one of the greatest “no” answers to a prayer was Jesus himself. When He prayed to His Heavenly Father, the night before He died on the cross, that He would rid Him of His suffering and God said “NO” (Mark 14:32-42). If God  hadn’t told Jesus no, we would have never had the opportunity of salvation!

Now on a more personal level, I have prayed to God countless times and  got a “no” answer. That can sometimes leave us angry, we question God and ask God, “why not?” It can make us feel that God is not listening to us or doesn’t care. But none of that is true. God loves us with an everlasting love (Jeremiah 31:3). God has our best interest at heart, “For I know the thoughts that I think toward you,says the Lord, thoughts of peace and not of evil, to give you a future and a hope” (Jeremiah 29:11). The song says, ” My HOPE is built on nothing less, then Jesus blood and righteousness”.

When my Dad was diagnosed with stage four liver cancer, my world was forever changed. My Dad was a man of great faith and if faith had anything to do with being healed, then he would certainly have been healed. But God’s answer was “no”. I couldn’t understand; weeks later he passed away. But he left me with the greatest answer to my question of why God says “NO”. On his death bed he had an amazing attitude and trust in God. For he said,”I cannot loose, either way I will win. I will be healed or if not, I will still win because I will go to my home in Heaven that God has prepared for those who love and serve Him. Through Jesus dying on the cross, He had taken away the sting of death. “Where, o death, is your victory? Where , o death, is your sting? The sting of death is sin and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ (1 Corinthians 15:55-57). So even when God said “no”, Dad still won and was victorious through our Lord Jesus.

With my own illness, I have sought God’s  healing numerous times but because He hasn’t healed me completely, doesn’t mean that His healing hasn’t taken place in my life and for that I am grateful. And with Lauren’s Cerebral Palsy I have often wondered ; where’s the fairness? What’s the purpose? I have more questions than answers for our lives’ struggles. But there’s one thing I’ve learned and that is, I could never do this in my own strength. I lean every day on Him, for He said in 2 Corinthians 12:9, “My grace is sufficient for thee, for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities (boast in my weaknesses), that the power of Christ may rest upon me.”

So I guess God does not always answer our prayers with a yes. And I’m sure that is for the best; God knows what he’s doing. In our finite minds we cannot see the big picture. I’m learning everyday to put my trust and faith in Him, especially when He says, “No”! And when He does I have to realize that it’s for my good, it’s not to hurt me or that He loves me any less. So sometimes when we feel our prayers go unanswered, God is listening always. In His time, in His way, He will answer!

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Logan’s Journey

I want to introduce you to an amazing little six year old boy named Logan. When we decided to have children (after been married for thirteen years) we were told we would probably never be able to conceive a child on our own. After working with Fertility Specialists for over a year, we had no progress. So our last and only hope of having a child would be by IVF; Invitro Fertilization.

IVF was a very costly procedure and would be done in Calgary, Alberta. With bags packed and hearts full of anticipation and hope, off we go to Calgary. Once the procedure was complete, which took about a week, we were homeward bound again. Then we waited for two weeks before we could take a pregnancy test; to find out it was positive! To make a long story short, we were soon the proud parents of a “bouncing” baby boy. And two years later we were surprisingly blessed with a beautiful baby girl, you talk about divine intervention and a little “work” by Mommy and Daddy. It was a year later when we would learn the devastating and life altering news of Lauren’s diagnosis with Cerebral Palsy.

Logan has grown to be such an amazing, intelligent, sociable, fun loving little boy. But you see as much has we try to protect and shelter him from all the “challenges” of our lives, this is impossible to do. When I was very sick, especially during ECT treatments, I spent most of my time asleep. How could a little boy understand why his Daddy was always asleep and couldn’t play with him. I hate my illness for stealing this precious time away from my little boy; time I can never get back. Has I’m writing this I am also realizing how much of my memory of this period of my life is gone, due to ECT, medication and the severity of my depression. But we are trying to make new memories and making life as normal has possible for both our children.

Logan is his father’s child when it comes to his love for animals. His first love were worms, then snails, our dog; Brady (who has since gone to Heaven). Then we thought some fish would satisfy his longing for more pets, but only to find out he also had a love for bunnies. Which now he is the proud owner of a blue eyed, white mini lop; the love of his life. Recently we visited Lester’s Farm, Logan wanted to know if we could buy farm animals. I said, “we’ll have to wait and see. A pig has really peaked his curiousity (all things are possible in our household; never say never).

Logan also has a love for singing, that’s also in his genes. His ability to remember songs, his voice range and tune is amazing. I can’t wait to see where he goes with it; “the skies the limit”.

When it comes to toys,he first became fasinated with trains, all trains, not just Thomas the Train. To bad we live on an island where there are no trains, kind of ironic. Then there’s his love for Star Wars and Star Wars Legos. Him and Daddy spent many hours putting together large Star Wars Lego space ships; Daddy loved it.

Logan’s greatest achievement, accomplishment, and love is his little sister Lauren. He’s become her mentor, “Bruddy” is the sparkle in her eye and vice versa. They just love each other (most of the time). If there is anybody that will motivate Lauren to move or maybe even walk; it will be Logan. He can do anything with her and she loved it; they are best buddies.

Logan has seen and experienced more in his little lifetime then most kids, when it comes to life challenges. But I believe it’s those experiences that have made him into the amazing, caring, loving little boy that he has become. He has taught us all, that
there is joy in living and we can overcome any opstacle because we have something that money can’t buy; LOVE! And we just “love him to pieces!”

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Finding the Light

After several visits to my physcritrist, after my latest severe relapse about 5 years ago; he started talking about filling out the papers to apply for Canada Pension Disability. What was he talking about? This is a doctor not a social worker. Why would I be needing that anyways? Give me a few months and I’d be back on my feet, as good as new. But he knew the difference, he knew my history and knew the severity of this breakdown. I would not be going back to work anytime soon, if ever.

You talk about panic sitting in, like the waves of the ocean come flowing over me. This is not the case, he doesn’t know what he’s talking about I thought. But now five years later and still not back to work; I guess he did know what he was talking about. Why couldn’t he be wrong, just this once; for my sake, for my families sake?

If there ever was a time when I needed to work; it would be now. With two children and my wife off work on sick leave. But knowing in my mind that this would be the last thing I could do on this earth. As bad as I want to and need to, I would not be able to.

So the question remains; which could change my life tremendously is; is there a cure for my illness, major depression and anxiety disorder? I am now speaking for myself and my diagnosis (not for anyone else because everyone’s illness is different. In reality there is no cure for my illness. Looking at my outward appearance at present, one would think that I am in full recovery. Oh I wish that were the case. There is nothing I would pray for more (other then Lauren’s healing) than to be fully recovered. But people look at me and say, “but you look so good”. And I say, “thank-you” but what you see is not what you get. For on the inside my struggle, my war still rages; on a lesser scale but none the less, still there.

I will compare my illness to that of a diabetic. You have diabetes, you keep it under control, but there is no cure. You maintain your levels on a day to day basis. So it is with my illness, I take it one day at a time and that’s all I can ask for. Dr Douglas Bloch, well known author and psychiatrist says this,”Depression is a relapsing condition, we cannot cure it but we can manage the symptoms”.

Just as with other genetic transferred illnesses, mine was passed on to me at birth. I always knew from a young age, that there was something not right. That’s why at sixteen I had a mental breakdown and suffered other relapses throughout my lifetime. I don’t remember too many times when I was not on an antidepressant. It plagued me my whole life. It was like taming a lion, sometimes it would settle down but other times it came forth in full fury.

So, for now I have to keep my symptoms under control. And watch for warning signs such as; loss of appetite, disruption in sleep patterns, feelings like you are losing control, withdrawing or isolating from others and feelings of hopelessness. If these start to surface than I know something’s wrong.

I wish I didn’t have to be honest and real about my illness; I wish I could paint a prettier picture and say, yes there is a cure but I believe that would be like saying,”there’s a cure for cancer”. Truth to be told, in the recesses of my mind loomes the ugly reality of this disease. If you are one of the lucky ones who feel have beaten or cured from this illness, then I am happy for you; very happy! But for the majority of us we have to accept the fact that this illness is not going away totally. Just like my heart disease, mitral valve prolapse; ain’t going away. Or Lauren’s cerebral palsy; ain’t going away. But without a miraculous healing, we will live life above our illness and not be defined by them. Lauren is a typical four year old little girl who has dreams and aspirations just like any other little girl. Maybe with a few more challenges and obstacles, she will rise above it and “shine her light.”
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And has with my own illness, I will rise above it and shine the light. Amidst all the stigma, misinformed persons, people with “perfect” mental health, people who have all the answers, an illness that is so misunderstood and unexplainable; I will be the light for others. After all the blogs I’ve written, I feel I have only scratched the surface. We will find a cure, we will find the light.

By accepting the fact that there is no cure for my illness, doesn’t mean that I have given up or given in to this illness or have loss all hope. It just means I am not in denial anymore, it is what it is. Just like someone having cancer, you don’t want to believe it or accept it but in the process you finally realize the harsh truth and reality. We never loose hope, no matter what the diagnosis or prognosis. The energy and strength we put into fighting the reality of our illness, we can now put into fighting the illness itself. And that’s when the light starts to shine, glimmers of hope, a speckle of light at the end of the tunnel, it’s then we find “the light”.