This is Lauren’s diagnosis… So thankful to God that she does not fit with all the symptoms! And we are hoping that even fewer symptoms will apply as we continue to avail of any/all options that we become aware of!!
Positive Attitude; Negative Reality!
Let’s just say, my feathers are being ruffled ?
Reality, defined as, “the world or the state of things as they actually exist, as opposed to an idealistic or notional idea of them”, sure has a way of keeping us in check. Irregardless of one’s electrical attitude ‘charge’, be it positive or negative, there is a set reality that exists. To the very best of my ability, I try to remain positive in the midst of much fear and uncertainty. I HAVE to approach each day in hope in order to get by.
Being a mom lends itself to many moments of pride, laughter and comic situations. Children say and do things that just make our hearts chuckle; and then the day comes when we have to share them with the world. This is challenging with any child, but as a parent of a child with a disability, I am becoming more and more aware of the challenges that certain rites of passage will bring.
You see, not everything in the real world is equally accessible to those differently abled. Whether it’s building structures, resource personnel, equipment etc., there is a gap between what is needed and what is the reality.
I would love to believe that Lauren lives in a world that offers equal opportunity to her, as to her more able bodied friends. However, more and more, I become aware of the exclusions that exist in supposedly ‘inclusive’ settings. The reality is in order for Lauren to have equal opportunity, mama and papa will have to rattle some wheels, rock some boats, fight some battles…
And as long as there is breath in either mama or papa, this battle will be fought. Back to the positive and negative attitude; I am positive that we have a lifelong fight facing us, and I’m positive there is a whole lot of support. However, there remains much negativity surrounding the reality of a disabled person setting out to live life in an able bodied world, and that’s the unfortunate reality!
“Be Anxious For Nothing…”
Anxiety is a natural emotion that everyone feels at sometime or another. We can feel nervous when faced with an everyday problem; work related, school test or making important decisions.
But when referring to an anxiety disorder this is completely different than everyday anxiousness. Most anxiety disorders can cause such distress that it interferes with our ability to lead a normal life. This type of disorder is a serious mental illness which can be very disabling. Some types of anxiety disorders include; panic disorder(panic attacks), social anxiety disorder, phobias, generalized anxiety disorder.
Panic disorder or panic attacks are one of the most frightening experiences of my illness. It’s a feeling of terror that can strike at anytime and anywhere with no warning. Some symptoms include; shortness of breath, sweating, chest pain, fear and an overwhelming of you’re going to lose “it”.
As part of my anxiety disorder I experienced a social phobia. This was where I had an overwhelming fear of going into a public building or setting. This really interfered with our social life because I found it very difficult to go to restaurants, malls, stores, movie theatres or anywhere outside the comfort zone of my own house.
People with an anxiety disorder usually experience some form of phobia or phobias. These are intense fears of heights, flying, enclosed spaces or congested gatherings are some examples.
Generalized anxiety disorder is described as excessive, unrealistic worry and tension, even if there’s little or nothing to provoke the anxiety.
When diagnosed with anxiety disorder along with major depression; I was experiencing all types of anxiety symptoms. When experiencing both illnesses at the same time, this makes it very difficult to treat both illnesses. But with time and various treatments it is possible to eleviate or lessen the severity of the symptoms. Treatments include; medication, psychotherapy, cognitive-behaviour therapy, dietary and lifestyle changes and relaxation therapy. All of which have helped me to a certain degree but not always readily available, especially when needed the most. Wait times could be up to six months; not all that encouraging when you are feeling your life is being weighed in the balance! But for me there was no quick fix. Just learning to manage and cope with my symptoms on a daily bases was all I could do. And gradually with time my symptoms became more bearable.
The ironic thing about my illness is that one illness(major depression) is fighting or conflicting with the other(anxiety disorder). Therefore my life as become a total roller coaster ride; without the fun!
Facing Life With Cerebral Palsy
I’ve never written about Cereabal Palsy before. I just didn’t have the words to describe it and I just didn’t want to go there. Thinking that maybe it would just go away. Well it didn’t and won’t.
I remember that day so vividly, it was Logan’s third birthday. Normally I would go with Lisa for all appointments but this particular day I decided to stay home. This was just going to be a routine check-up. Little did I realize what was going to happen that day. When Lisa returned from the doctor, I waited for her to come inside; but she didn’t. So I went out to meet her, she wasn’t moving. So I opened the car door and found my wife falling apart. Through her sobs, she told me the horrific news. She explained what the doctor had said. Dr.Cooper said,”She(Lauren) had big problems; he didn’t know if she would walk, what she could see or if she would talk. He didn’t come out with what the diagnosis was but we knew deep down. We fell apart there in our driveway. Then we had to put on our happy faces because we had birthday guests waiting inside to celebrate Logan’s birthday. So with heavy hearts we celebrated with Logan.
It was about two weeks later, on Lauren’s first birthday that we were given her official diagnosis by Dr Doyle. I remember we sat down with her and a social worker, as we were given our life changing news. Lauren had spastic quadrapeligia Cereabal Palsy. What was that all about I thought? I heard the words before but really didn’t know much about it. We were so sad as we sat there and Dr Doyle cried along with us.It was all so overwhelming. Again we went home with heavy hearts to celebrate Lauren’s first birthday.
We were no different then any other parents; we just wanted nothing but the best for our children. You want to shelter them from any pain, hurt or suffering. The doctor said, “she had a long, hard road ahead of her”. Little did we know what that would involve. Sometimes ignorance is bliss. But sadly we had to learn each day and everyday brought new and different challenges.
We mourned/grieved the lost of our child’s well being. Where was God in all of this? We just could not understand and maybe will never; why an innocent child was going to be so disabled. For months we went through the grieving process; sadness, anger, sense of loss and had to face a multitude of challenges that we just did not want to face. We were torn apart, yet we were trying so desperately to keep it together for both our children.
Lauren will be four years old in a few days. Don’t know where those few years have gone; time goes so fast. A lot as happened in those past few years. Countless trips to the Janeway for theraphy, surgery, Botox injections, several castings and CP Clinics. Last year alone we made over one hundred trips to St.Johns from Bay Roberts. Lauren as endured more pain in her short life thus far, than most adults will in their lifetime. But she is so resilient, strong, brave and happy. Also Lauren as thus far made three trips to The Shriners Children’s Hospital in Montreal for assessments. We are hoping that she will be eventually a good candidate for a rhizotomy surgery. This is a surgery on her spine where they cut various nerves to the muscles to release some of the spasticity to her muscles. This will be her only hope of having a “good” chance at mobility. On our last visit, Lauren said to Dr Farmer,”you help me walk”. For this surgery we will have to move to Montreal for two months, where Lauren, following the surgery will endure weeks of intense physiotherapy.
In order for us to survive as a family; because this is rough on Logan as well, to have some normalcy in our lives; we have to believe in an higher power; in a God that cannot fail. This is an everyday process but we believe that He is walking this journey with us and we are not alone. Because there are days when Lauren is screaming(for no reason), then Logan is crying because Lauren is screaming and we just want to give up and sit down and scream/cry with them.
There are also days when we are so thankful in ways that God as blessed us. The support of our families, our church and the surrounding communities, especially Bay Roberts, Port de Grave and also my hometown of Triton. The fundraising as gone beyond what we could ever expect and all we can say is thank-you, thank-you! Lauren now has a reliable 2015 Dodge Caravan, fully accessible. With the help of President’s Choice Charities and everyone else involved, this dream could not have happened. But faith and vision as gone a long way in seeing this come to pass. We are also thankful for Lauren’s amazing accomplishments. Her sight is impaired but she “can” see. Her intellect is far above mine (lol), she is so smart. Her speech is amazing, she can talk like the best of us. She feeds herself no problem and the positive list can go on. So for that we are so greatful and thankful to God.
The thing about CP is that it is ever evolving. Everyday is a learning experience for all of us. It’s a 24/7 day journey, with many ups and downs in that road. But we will keep travelling down that road and pray that each day will bring us something positive. Because lots of times things can look bleak. For example we were blessed by a family(Marina Normore) who just lost their son who was very physically challenged. They gave us a very expensive piece of Toileting System that would allow Lauren to sit without any aid from us. As I was assembling this piece of equipment, it enforced in me once again the harsh reality of Lauren’s disability. So again I was torn apart on the inside but also so grateful, it was a “bittersweet moment”.
Will I ever come to accept Cereabal Palsy? No, I don’t think I will. I will come to a point where I will learn to live with it for Lauren’s sake. I hate this, I don’t even know what to call it, this challenge, this disability, this disease. Whatever it is, there’s nothing fair about it. Please don’t tell me otherwise because there is no sense to be made of it. To be honest and real; I hate, hate, hate it!
But then there’s the flip side; I love, love, love her. She is one amazing child; strong, brave and determined. I am so thankful for her life; she means the world to us. I pray for God’s strength, guidance and wisdom for the days that lie ahead.
“This miracle God gave to me, gives me strength when I am weak; I find reason to believe, in my daughter’s eyes” (Martina McBride).
By Daddy
Lauren’s New Toileting System
Thanks to Marina Normore and her family for graciously giving Lauren this much needed aid. 
Donation by the CeeBee Stars Hockey Team
Lauren receiving a cheque from the HGOE CeeBee Stars of Harbour Grace at The Bay Arena! Thanks to an amazing hockey team!
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Lauren’s Fund Raiser by the Osprey!
The Bay Arena, Bay Roberts Tri Pen Osprey held a 50/50 draw with their share of the draw was donated to Lauren. What an awesome show of team spirit, way to go Ospreys!!!
Logan Dropping the Puck!
As part of a fundraiser for Lauren; The Bay Arena, Bay Roberts gave Logan the honour of dropping the puck for the Tri Pen Osprey against the St.John’S Maple Leafs.
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Fun in the snow!
hDThe Church and Mental Health
In our society today and throughout history it’s been the consensus that Christians are not supposed to be depressed or have anxiety; we are supposed to have it “all together”. In our culture at large, there is enough of a stigma surrounding mental illness that it becomes more difficult for sufferers to find the support and understanding that we need. You would think that the one safe place that a person suffering from mental illness could find support would be the church. I am happy to say that I have found much support and encouragement from the churches I have come in contact with and I applaud them! But sadly to say that is not always the case. Just as prejudice, stigma, ignorance, misunderstanding and lack of knowledge is still found in our society(somewhat to a lesser degree but still a long way to go) so it’s also found in the church.
It’s true that the scientific community as yet to come to a universal agreement on the nature and causes of depression. The general consensus is that depression is a medical condition and not a personal or spiritual failure.
Does the church give the impression that anyone who decides to follow Jesus must have perfect mental health? Can we break down the walls/barriers that threaten to keep sufferers isolated and alone. The church needs to start looking at this as an illness, not a spiritual battle or a personal flaw or weakness. Then people will come out of the woodworks and seek help and know that God loves them just as they are, in all their brokenness. And not feel like the church is somewhere they don’t belong or feel welcomed. Our churches should be a place of refuge and encouragement to all who seek God, none to be secluded or left out.
Then there’s the healing issue. “Well if you had more faith you would be healed or you need to pray more…”. As with any illness; not everyone is going to be healed, mental illness is no different. It doesn’t mean that God loves me any less, it just means God knows best. Now that’s a tough statement for me to say because I want to be healed/delivered from this hellish existence more than anything. But that’s not for me to decide. “Thy will be done on earth..”. But if healing is not in the plan then I ask for His strength and wisdom for every day.
I grew up in a generation where mental illness was looked upon in a negative manner. If you suffered “bad nerves” then you were missing some of your marbles; you were not considered “normal”. Especially if you were a Christian how could you be depressed or anxious? In the same way we experience other illnesses; our hearts malfunction, our kidneys fail, our liver stops functioning or we break a bone. Things can go wrong with our brain, it’s an organ like any other organ of the body. It’s our misconceptions that cloud our judgement of this illness.
I cannot change my illness by Will-power, no more than someone with a physical illness can heal themselves with positive thoughts (it might help, but will not cure). The church has the tendency to put this pressure on mental ill persons by invoking the idea that we can heal ourselves if we just pray harder and more often, have more faith, think positive etc. Let’s stop right there! God is our healer, it’s His will, when and if we are healed.
There is another issue that needs to be addressed. It’s a one I was going to omit because I didn’t really know how to address it. But let’s start by saying the church, society and culture has most definitely come a long way when it comes to mental illness. I myself have come such a long way; I have become more educated on the topic and my life experience through living with this illness as given me an whole new way of looking at it. The issue I’m referring to is a one where mental illness was and still is to a small degree looked upon as some form of demonic, devil possessed or entrenched in the dark side. Let’s be very careful here; don’t give the devil so much credit. When sin entered the world, so did all sickness; this was not the plan of God but when Adam and Eve fell that’s where it all began. But because they fell, God did not leave us to our own demise. He is still all powerful, all knowing and everywhere present. And in the end God as the last word on mental illness, not satan. “And by His stripes we are healed”.
Let us(and I’m speaking for myself) to stop playing God and think we have all the answers, because we don’t. This illness is so complex, misunderstood and complicated that we don’t have the mental capacity to fully understand it and thus is best left to the omnipotent God; who is all knowing. I am not referring to any particular church, I am talking about the church in general. It’s not meant to be offensive but it’s time to look at mental illness in a different light; with understanding, compassion, love and acceptance. To broaden our minds to see things from a different perspective.