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