The Silent Killer

I wouldn’t say that Winter is my most favourite time of the year. The freezing cold, slippery streets and sidewalks, back breaking shovelling of the snow and the claustrophobic confinement inside your home because of a monstrous snowstorm. None of which make for the ideal situation for someone suffering from chronic depression and anxiety. I would call Winter, ‘One big trigger for mental illness.’ And then there’s the relentless hours of darkness, where daylight savings time is at it’s cruelest.  We require, as human beings, a certain amount of daylight each day in order to produce enough vitimin D, which  in turn increases our mood and helps combat anxiety and depression; that’s not always possible this time of the year.

But I’ve been doing fairly well and by fairly well, I don’t mean cured. But it’s been managable for the most part, with a lot of daily work; it certainly doesn’t  happen naturally. But at least I can function, to a certain degree. This functioning level recently was misinterpreted falsely by someone’s ignorance and boldness. When she stated in an email that I was more then capable of working and that I shouldn’t burden my family, friends and Community with the financial responsibility of Lauren’s needs. Our hearts were broken and torn that someone could be so cruel and insensitive.

In reality I have no obligation to explain the status of my health to the general public. Nor do I need public clearance for when I go back to work. I think this would be my doctor’s area of expertise and the public should keep their opinions and comments to themselves. It’s really sad that I feel the need to even justify my illness. I guess that’s why it’s sometimes referred to as the ‘hidden/silent killer.’ It’s an illness that you don’t always see on the outside. And when I go in public I’ve mastered how to act ‘normal’ despite an abnormal illness. The public will never see my worst days; it’s those days I hide; I isolate. But in the end , it lends significantly to the public’s misconceptions about the severity of my illness because just maybe what they are seeing and what the reality of my illness is, are two different things.

I’m telling this because it’s easy to judge a person’s well being on what you see; and you certainly cannot diagnose the severity of my illness or the wellness of my being by what you see. But when you see me, you aren’t seeing all of me. I write this because I want people to understand that when someone looks okay on the outside, certainly doesn’t mean that eveything is fine on the inside. Sometimes we are so quick to judge someone else and to dictate what we think is right for that person. But if we don’t walk in their shoes, we have no right to judge that person. So if we can’t say something nice about someone, it’s best to say nothing at all. And for a lot of people that is near impossibe to do. I have to live with this illness, every fighting day of my life; as does so many others who are fighting this battle called mental illness.

I believe (I know) we have been the topic of conversation around many supper tables. I have never experienced such cruelty, gossip and backbiting in all my life.  And the topic of conversation being our fundraising efforts in order to give our six years old little girl, who has cerebral palsy, and who’s needs far outway the needs of a ‘normal’ child. We were told we were a burden to others and society. It’s attacks like this that make it near impossible for us to live a normal life. Life is hard enough as it is while trying to raise a child with a disability, 24/7 365days a year and no government funding. But then to have to deal with such cruelty, added stress and humilitation is beyond humane.

But we will move forward, with courage, strength and hope; despite adversity, hatred and insensitivety. We are so grateful for those in our lives who support us with their love, compassion and encouragement. It’s those people that help us each day to put one foot in front of the other, without them we could not survive. I am sorry that I have to write such a disturbing blog but I feel exposure is the best and only remedy.

Conductive Education

A bumpy flight and a bumpy two weeks in Halifax, NS. We attended a two week session of Constructive Education with The March of Dimes. It’s program designed for clients having movement difficulties due to brain damage.

The first week started with a large bump in the road; it got totally cancelled due to a family emergency at the clinic. And Lauren’s conductor was off for the week.

Thank God we had relatives in Halifax to help us through this first long week. Keeping the children and ourselves occupied and happy was a full time job. But we made it through that first week, being very disappointed that Lauren had missed out on a full week of treatment. But that was unavoidable, so that was all we could do and we just made the best of it.

The second week was full speed ahead. Lauren was scheduled for Monday-Friday, 9:00-12:00. So three hours of intense treatment/education. She was fully engaged for these three hours and every body part was included. She was amazing and making such progress.

When we left at the end of the session, we were all exhausted but so excited about the program. This is what we’ve been looking for and what Lauren needs so desperately. But the bittersweet pill kicked in at the end of the week. This is what she needs but not available in NL. So far out of our reach.

So now we know what we need but how do we get it? So we start our search to find a way to get this program offered in NL. Nothing is impossible, if we believe and find a way for it to happen.

So sad when you know this is what your child requires to find some form of mobility. But so far out of our reach and control.

What is Conductive Education?

“Conductive Education® is a community rehabilitation program offered through March of Dimes Canada whose mission is to maximize the independence, personal empowerment, and community participation of people with disabilities.

Conductive Education® (CE) is a program that combines physical rehabilitation and education to help children and adults with neurological motor disorders or who have had a stroke or brain injury. Conductive Education works on the brain to change the body. Participants are taught skills and techniques to help them overcome the challenges of their disability – they learn how to apply these strategies to their everyday life, becoming more independent.

Designed specifically for people with neurological motor disorders, Conductive Education offers an alternative group setting approach to rehabilitation for people living with:
Cerebral Palsy
Spina Bifida
Multiple Sclerosis
Stroke
Parkinson’s
Acquired Brain Injury
Thousands of Canadians are diagnosed with these conditions each year. Conductive Education and March of Dimes Canada are here to offer help and support to these individuals and their families.”

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 Week at The Janeway

This has been one busy week! And I’m glad it’s done! We spent many hours at Janeway therapy sessions and felt floods of emotions! I’m thankful for all Lauren CAN do! Such hard work for a 3 year old, but her “I do it myself” attitude is paying off! Once again I’ve been reminded that different is ok; and perfectly normal! I adore Lauren for who she is right now! And will support her in becoming the best she can be?!