Category: Lauren

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I’m ANGRY!

Anger isn’t an emotion that I like to feel. But I’m human and today I’m angry. I’m not angry at God, He is the one and only person that I know I can pour my heart out to and He understands. So no, I’m not angry at God; He’s my Rock, my burden bearer, my healer, my friend.

So often we have the tendency to blame God for anything that goes wrong or is wrong in the world. I’m guilty of doing that myself but this morning I realized that He is not to blame for what’s going wrong but is to be praised for what is going right and know that He is with us when things aren’t going so well. And sometimes He even allows these things to happen to make us stronger. 2 Corinthians 12:9-10 “My grace is sufficient for you, for my power is made perfect in weakness”….”For when I am weak, then I am strong.”

Lots of times we feel guilty when we become angry because “Christians” shouldn’t feel that way. Well we do feel that way sometimes and that’s okay. Jesus became angry on several occasions;  In Matthew 21:12-13, He became angry at those who were exchanging money at the Temple. In Mark 3:5 “He looked around at them with anger”. Jesus was angry at times, yet did not sin, Hebrews 4:15. And likewise, believers in Christ are taught, “Be angry and do not sin” Ephesians 4:26. While anger is often viewed as a completely negative emotion, there are times a person can be angry for appropriate reasons. In Jesus case, His anger was the result of ungodly attitudes and actions by those around Him.

So today I feel my anger is totally justified for good. I guess you could say I’m angry at “the System”, medical that is. You see, Lauren was scheduled for hip surgery on March 12th; much to our dismay it was cancelled, no explanation, no rescheduled appointment, nothing. Now here is a four years old little girl going around with “two” dislocated hips, in pain; totally inhumane in my opinion. After several calm and polite phone calls to inquire about a rescheduled surgery date, we were given nothing. So on April 30th (now a month and an half as gone by) I decided I’ve had enough and we have to get a date to get this surgery done.

I introduced myself to the secretary on the phone, and stated my case and said if I hadn’t heard back from her doctor by the evening, I would take my story to the NTV News. Now up to this point she could not tell me when or if Lauren was going to get this surgery done. Yet here was Lauren still going around with two dislocated hips, had to take her out of swimming because it hurt too much, couldn’t do physio therapy anymore, couldn’t sit crisscross and in pain.

Maybe ten minutes later my phone rang, her doctor was on the other end with an appointment for May 16th. Now if I didn’t get angry, would we have gotten that appointment? I think not! Ten minutes before and the appointment secretary didn’t have one. i’m sure they won’t be rolling out the red carpet for me at the Janeway, anytime soon. But I’m not trying to win any popularity contest with them, I’m trying to get the best healthcare for our child who deserves nothing less but the best. And right now I feel she’s not getting that and I will not give up without a fight. Although this may exhaust me of every ounce of strength that I have, I will not give up! You Go Lauren!

So Lauren, when the Janeway may have given up; Mommy and Daddy haven’t and will never. And remember the Great Physician has the last word! Matthew 19:14 “But Jesus said, suffer little children, and forbid them not, to come unto me: for of such is the kingdom of Heaven.”

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Lauren’s Blog

Hi, my name is Lauren Kennedy Tucker and I have spastic quadriplegia cerebral palsy. I am five years old, ‘I’m not a baby anymore; I’m a little girl now.’ I really want to walk and ‘do it myself’ but when I was born the part of my brain that tells my muscles what to do was damaged. So when I want my legs to move, they don’t listen. And because of that my whole life is one challenge after another. Daddy is going to share with you some of those challenges and help you to make a little sense of why that makes my life a little more difficult. Because for me every aspect of my life is affected and I have to endure more pain, hurt, mobility issues, accessibility problems, inclusion, therapy, etc. then the average child will endure in a lifetime.

Don’t get me wrong, I still live a happy, loving and fulfilled life, in spite of my challenges. This is ‘my’ normal, it’s just that everyone else as to be enlightened, educated and introduced to my way of life. It’s not that I am different, it’s just that I sometimes have to do things a little differently than others. Maybe you have to wear glasses to see, I use a wheelchair to move. Because you wear glasses doesn’t mean you are different and should be excluded; then neither should I because I am in a wheelchair (for now).

My Daddy is a great advocate for person’s with a disability, mobility issues, vision issues and anything that would make our world a better place to live. He certainly believes in equality for everyone, no matter what. So I’m really lucky to have him on my side. Being an advocate certainly won’t win him any popularity contest but if it’s going to improve my quality of life then Daddy doesn’t mind because he always says, ‘It’s the squeaky wheel that gets the grease’. Both Mommy and Daddy are my greatest fans, I am so lucky to have them in my corner. And of course ‘Bruddy’ (Logan); I just love him to pieces!

Below is a list of some of the events, therapy, and important people people that are involved in my life:

Cerebral Palsy Clinics at The Janeway every 6 months.                                                     Physio Therapy                                                                                                                                       Occupational Therapy                                                                                                                        Speech Language Pathology                                                                                                          CNIB Kim Hart, Vision Impairment                                                                                                Psychology                                                                                                                                                Inclusion Consulting                                                                                                                              Orthopedic Surgeon DR. Deane                                                                                                      Neurologist Dr. Buckley                                                                                                                       Developmental Pediatrician Dr. Doyle                                                                                         Pediatrician Dr. Aktar                                                                                                                           Ophthalmologist Dr. Bramwell

Wow. that makes me feel like I’m a very special person and well taken care of! Daddy , you forgot to mention that I frequently visit the Children’s Shriners Hospital in Montreal for assessments. I’ve been to Montreal four times already to be assessed for a Rhizothomy surgery which could release some of the spasticity in my muscles which would in turn help me to have a better chance of having some form of mobility. But up to this point I have not been a good candidate; but Mommy and Daddy are not giving up. We believe that eventually I will get this badly needed surgery. Dr. Farmer is going to keep his promise of doing his best to help me walk. But for now I have obstacles to contend with before I will even be considered for the rhizothomy surgery.

Because my disorder rendered me very spastic, in order to relieve some of the spasticity I  first began having botox injections through my groin. Botox is known to paralyze part of the muscle which in turn releases some of the spasticity. This is only a band aid remedy and would only last for short periods of time, only a few months at most. I had four procedures done while put to sleep but then the effects of the botox didn’t work anymore and the procedure was discontinued.

Right now, I have two dislocated hips and still waiting on surgery. If I were an adult with two dislocated hips; would I still be waiting on surgery? Daddy doesn’t understand the long wait, I was suppose to have the surgery done over a month ago but it got postponed and as of today we have no rescheduled appointment. I will have reconstructive osteotomy pelvic and hip surgeries done but at separate times. It would be too dangerous to do two of my hips at the same time. They will do one and then I will be in a hip spica cast (body cast). Then depending on how I am recovering; two or three weeks following I will have the second pelvic and hip surgery done and placed in a body cast for another 6-7 weeks, depending on the healing process. This is going to be very stressful and painful on us all but Mommy and Daddy are praying that God will be with us.

I am also diagnosed with epilepsy, my seizures seem to be under control somewhat since I’ve been on a new drug. Mommy and Daddy watch me day and night to make sure I’m not having a seizure. They are scared that having another seizure would do more damage to my brain; that would not be good.

There seems to be no end because in June I am scheduled to have strabismic surgery on one of my eyes. Dr. Bramwell is hoping that by correcting one eye will help correct the other. This is a visual defect in which one eye cannot focus with the other on an objective because of imbalance of the eye muscles. We are hoping this will help with my vision and the turn in my eyes. It seems nothing is for certain but we try to keep positive when things are so uncertain.

Once my hip surgeries are successful and healed, then there’s the surgery that Mommy and Daddy are so concerned about. It’s not guaranteed to work but it’s the only option we have right now of releasing some of the spasticity in my muscles especially around my hips because there still is a chance that if the muscles get too tight they can pull the hips out again and we have already been down that road and don’t want to go there again (I will have had 3 hip surgeries ). The next surgery would be to insert an intrathecal baclofen pump underneath the skin. Baclofen is a muscle relaxant medicine used to decrease spasticity. It will deliver the drug right to the spinal cord and release some of the spasticity.

It looks like a long road ahead but we will take it (try to) one day at a time. I know Mommy and Daddy are so exhausted and stressed; with the 24/7 care that I require, the constant trips to the Janeway, the worry about my surgeries, the expense of needed equipment (I am due for a new wheelchair and that’s like buying a used car) and lack of support, no available funding; all combine to make life a little overwhelmingand draining; both mentally. physically and financially. But God will make a way!

 

 

 

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“Our Story”

This blog  is taken from a speech I presented at Church just recently. I told my story there before entitled, A Broken Mind, which can still be found on our website at www.harrislisa72.com. But this blog isn’t just about me, it’s about my family; Lisa, Logan and Lauren. A family that is struggling and at times broken but I want to share with you the power of the human spirit to overcome any adversity with the help of God and a determination to never quit, never give up on hope. I have to make clear that this is not a onetime fix but a daily, conscious effort that requires a strength that is far beyond all human comprehension.

John 16:33                                                                                                                                                   I have told you these things, so that in me you may have peace. IN THIS WORLD YOU WILL HAVE TROUBLE. But take heart! I have overcome the world.

Our lives as been anything but trouble free, we have had more then our share of trials and tribulations. The storms of our lives have been many, there have been times when our ship was barely above water, we were sinking but I believe we were not in that ship alone. And that is why we are still riding out the storm. The storms may have beaten us down, exhausted us and at times left us for dead. But its these experiences and life altering traumas that have forced us to put our total dependence on God. For what we have experienced, are experiencing and what we are going to experience, we have to trust in the God of the impossible, the God that cannot fail, the God who has a plan for our lives; a plan we may not see at the moment.

I speak as a realist, not a pessimist. One thing I want to be is totally honest, totally real. I cannot say to you that we don’t question, doubt and have moments when we feel like we are somewhere wandering in the wilderness. But  we realize if we are going to survive this storm of life, we will have to put our trust and hope in the resurrected Christ. The Christ who died and rose again and today is seated at the right hand of the Father making intercession for us, what an amazing promise! That is what gives me hope, that is what gives us the strength to go on.

Let me just elaborate for a few moments on our not so ‘normal life’; by society’s standards. We don’t portray the perfect ‘facebook’, ‘cookie cutter life’. Let me take you back to my father’s death, my first real traumatic experience. He was a man of God, a man of faith and wisdom. Life certainly wasn’t always easy but he trusted God that tomorrow was going to be better, he never lost faith. When all nine children and Mom were gathered around his bed, he said before his passing that what truly mattered was right here in this room; his family and God; nothing else mattered when it came to material things. And right now I believe Dad is just ‘Gone Home’. He taught me what was important in life and what truly mattered in the end.

After  some months after his passing, Lisa and I had time to think and ponder over our own lives. After been married for eleven years with no children we thought about what Dad taught us on his deathbed and maybe we should have children too; just not nine! So the fun began, before long we were pregnant, although the doctors told Lisa she wasn’t. But Lisa knew she was; a Mother’s intuition. We decided to take a little vacation to the Dominican Republic. This trip would turn out to be one of the most traumatic experiences of our life. To make a long story short; while on the plane returning home, Lisa felt sick and decided to go back to the washroom on the plane. She never returned to her seat again, it ended with Lisa unconscious on the floor of the plane. Barely a pulse and turning blue; Lisa was dying. Once the plane landed, Lisa was rushed by ambulance to the nearest hospital, where we learned Lisa was hemorrhaging from an ectopic pregnancy and was taken for emergency surgery, where we lost our baby, Lisa lost  80% of her blood volume and was minutes from dying. This was the beginning of the storms of ‘our’ lives.

It was a long and traumatic journey back to real life. For months we grieved the loss of our baby in silence. We still so desperately wanted to have a baby but were told that would be impossible. But we never gave up, to fast forward; we went to Calgary for IVF; invetro fertilization and to defy all odds and with God’s intervention we were pregnant and seven months later we had a handsome baby boy who we named Logan. He was the joy of our lives.

But then when Logan was around a year old, I began to have severe symptoms of depression and anxiety. And that was where my story began and I was given a life altering diagnosis, that left me both mentally and physically disabled. And since that time until now I have struggled and still struggling to regain my life back. Then in the midst of all this trauma, we were miraculously blessed with a baby girl. She was certainly a light in the darkness; sunshine in the midst of all the rain. But then on her first birthday Lauren was diagnosed with spastic guadriplegia cerebral palsy- a life altering diagnosis for all of us. Our world fell apart. Trying to describe CP and what that involves is much like trying to describe my own diagnosis; both very complex and complicated. And to try and explain what either is, is impossible unless you experience it for yourself.

We were forced to make major life changes and had to move to Bay Roberts. And the storms have never ended, there’s been and will always be some unforseen battle and that is the reality. But in order to survive such traumatic and life changing experiences we have had to place our trust in God and believe that He is in the storm with us, He is in our ship and we will not sink. The minute we take our eyes off Him, it’s then we’ll sink. There are places I’ve seen His hand at work; in spite of all the trauma, trials and tribulations, there are so many miracles that present itself in our lives: 1. Our marriage as survived, struggling but surviving. Statistics show that majority of marriages don’t survive when faced with the ordeals that we have encountered. 2. The miracle that Lauren was conceived in the first place, when we were told it would be impossible for us to get pregnant on our own. 3. That Logan was fertilized in a petri dish and was viable to be implanted within Lisa’s womb and was successful; is not only amazing but a miracle. 4. That I can stand behind this pulpit, when I was in the acute stage of my illness I could barely stand at all. 5. That Lisa was capable of carrying a baby after the trauma she had experienced when we lost our first baby. So, I just want to say, ‘thank you Lord, for your blessings on us’.

Many times when discouragement knocks on our heart’s door and we find it difficult to see the light of day; we have to remind ourselves of God’s faithfulness. I don’t portray to be ‘Christian of the Year’ but I do say, ‘I’m a sinner saved by grace, so unworthy of the blood’. But yet He died for unworthy me, thank you just isn’t enough, His mercy rewrote my life. For without Calvary I would not be where I am today. So all the Glory belongs to Him. Thank you, thank you, thank you!

 

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Lauren’s Missed Opportunity?

After recent events pertaining to Lauren’s latest medical update (please refer to the blog entitled, ‘A Detour in Lauren’s Journey’) it took some time for us as parents to analyze and digest the information that we had received. We are not parents to accept everything as “hook, line and sinker.” The news we received will forever change the course of Lauren’s life and journey. And we are not expecting everyone to know and understand what that feels like unless you have walked the path we are travelling. But I believe Lauren as been done an injustice. Is anyone to blame? You tell me.

Lauren as already visited the Children’s Shriners Hospital in Montreal, three times.  Each time was for an assessment to see if she was a good candidate for the ‘selective dorsal rhizotomy’  which would release some of the spasticity and tone i her muscles which would allow her to have a chance at some form of mobility. Three times we were sent home.

In order to be even considered for this surgery, Lauren’s hips were required to be in good condition, which they weren’t. So in 2016 she underwent a  reconstructive hip surgery (Osteotomy) to correct her hip. This left her leg 1.5 cm shorter then the other. At that time the other hip was out of socket a little but not bad enough for surgery and they were hoping that maybe it would correct itself. This was performed at the Janeway Children’s Hospital in St.John’s.

The reasoning for the corrected surgery of the left hip to be a failure was due to the fact that her muscles were so tight (so spastic) that they pulled the hip out of socket  and the ‘good hip’ was now 50% out of socket as well.  Now she was definitely not going to be considered for the rhizotomy surgery. Our hopes crushed!

You may be wondering, where am I going with this? What’s your point? The point is this; if the rhizotomy surgery was done on our last visit (November 2017) and the tightness, the spasticity of the muscles surrounding the hip were released, they ‘may’ not have been pulled out of socket like they are today. And Lauren’s hip surgery would not have been in vain, she would not have one leg shorter then the other (for now, no reason) and she would have  at least a chance of walking or at least a form of some mobility.

So to sum it up, we are discouraged, hurt, angry and left with nothing but questions and what ifs’.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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A Detour In Lauren’s Journey

The doctor’s voice pierced our ears with news we did not want to hear. News that we were not expecting to hear but here he was saying theses awful, hopeless words. It was Lauren’s week of intense therapy that just so happen to fall on the same week has her Cerebral Palsy Clinic, this is where we meet with all her team; the orthopedic surgeon, neurologist, pediatrician and the rehabilitation team. We sort of had ourselves somewhat prepared for the week because we knew some things weren’t going right with Lauren. As it is with Cerebral Palsy, every day is different and each  day brings new challenges. 

To begin the day we sat in the assessment room waiting for Lauren’s Orthopedic Surgeon to enter the room, wanting to lock the door and not have to listen to what he was going to say. We suspected that something wasn’t right with Lauren’s already troubled hip, she said  ‘it hurt’. She already  had reconstructive surgery done on her left hip, but we were expecting the problem was with her partially dislocated right hip. The doctor entered and the look on his face was not good. He knew what our aim and goal was for Lauren; which was a rhizotomy  surgery in Montreal and both hips were required to be in perfect working order. The rhizotomy surgery was our one and only earthly hope of Lauren ever having any form of mobility outside a wheelchair.  We looked at him and said, “you have bad news”.  He did not deny it, but why couldn’t he, it was what we wanted; to be wrong. 

He looked at us with a defeated, hopeless and helpless look and said, “the left hip that she had repaired is totally out of socket again.” The left hip?  That one was repaired, we thought the pain she was complaining in was from the hip that wasn’t done. And he said,”the right hip is 50% out of socket.” So where does that leave us; we need two good hips to even be considered for the rhizotomy in Montreal. And now neither hip is in good standing. “There is nothing else we can do here at the Janeway for Lauren, get her to the Shriners Hospital as soon as possible.” From his standpoint Lauren would be confined to a wheelchair and we would need to start accepting that fact. Our hopes were crushed, the only hope we had was now gone. We cried our way through the process because here we were looking at a little four year old girl who’s greatest hope was to walk. “But I want to walk Mommy”, “But I want to walk Daddy”, “It hurts”, “I want to do it”.

We just wanted to go home, but first we had to see the Neurologist because her seizures were still not under control. Nothing was working, medication was only making her sleep more often. So we waited for the neurologist to plead for help to stop the seizures. Our fear with her having so many seizures was that more brain damage would be done and that we did not want to happen. Lauren is so intelligent and bright and we want to keep it that way.  Her neurologist said, “there is no quick fix, no cure, just trial and error.” So now we try another medication and “please God” this would and will work.

Lauren’s physiotherapist came in while we were preparing to leave and we told her we just needed to go home and to cancel the remaining appointments for the week. We thank all the team for their concern and support, they really do care and love Lauren. But we just had to go home and let all of this just sink in and deal with the hurt and feeling of loss and hopelessness. There is a grieving process that goes along with this traumatic news.

We arrived home and just sat and looked at each other; defeated! Once the initial shock had worn off, it was, “okay what do we do next?” Get in contact with the Shriners  Hospital in Montreal. So Lisa called Lauren’s doctor there and left a message to get back to us as soon as possible. While Lisa was doing this, I was sitting on the sofa playing with Lauren, when my phone rang. Hello, the man said, my daughter received a text today about a little girl who the Janeway had given some bad news and that she needed to get to the Shriner’s Children’s Hospital in Montreal as soon as possible. He said, “is any of this making any sense to you?” To which I said , “yes, I sent the text to eight of my siblings today to inform them of our devastating news concerning Lauren, who is our four years old little girl who has cerebral palsy. Well he said, “this is no coincidence, but divine intervention, because I’m a Shriner and I will do whatever I can to get your little girl to Montreal. My heart leaped within me, when I felt so low, angry and no hope in sight; God had sent us a sign that He is right by our side and it’s going to be okay. This was no coincidence. What are the chances that this text and I have no idea how it could have been sent to her; I only sent eight texts and they were all to my siblings, so how could this girl, who’s father just so happened to be a Shriner from Gander, receive my text, it was nothing short of a miracle. And my texts were all out of province. God will move, He will intervene.

So after such a stressful and defeating day, God had intervened once again. Sometimes it’s in the little things, when our faith was so small and we had more questions than answers ; God was still working on our behalf. So if you are reading this and you are discouraged, hurt, going through the storm of your life, in the valley of despair; God is there, He will intervene, just never give up! “He may be four days late but He is still on time.”

 

 

 

 

 

 

 

 

 

 

 

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“Miracles”

We say miracles come in all forms. Does miracles still happen today? Just what is a miracle? According to google dictionary it is, ” A surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency”. In my opinion, that being God.

Have I ever experienced or seen an unexplainable, instantaneous miracle? Not in the way it’s defined, but I believe we experience miracles everyday. And most times they happen right before our eyes and we do not even realize it. But they do happen. Any day we can get out of bed is a miracle. The blooming of a flower is a miracle. The changing of the seasons is a miracle. Each breath  we take is a miracle. So yes I believe in miracles; even when I can’t see, I must believe.

Sometimes we pray for a miracle and it’s like our prayers went unheard. But I believe God hears every prayer we pray. They just may not be answered in the way we want or in the time we want. And when we feel God is so far away, really He is just by our side.

Sometimes in our human nature we question God and sometimes even blame God. But that’s our hurt speaking, not our heart. Jesus himself questioned God when He said, while hanging on the cross, “Why have you forsaken me?” (Matthew 27:46). Jesus felt like God had forsaken Him, like we sometimes feel. But God said, (Hebrews 13:5) “Never will I leave you, never will I forsake you”. And I have to take Him at His Word. Because what better option do I have? None, it’s God or nothing.

God is the God of the impossible! He can do anything but God also has the choice to not answer our prayer in the way we want. WE have to have faith and trust that God knows what’s best. And lots of times I find it hard to see it that way, but I keep trusting in spite of it all. He is my only hope and one day, in His time, He will intervene.

Sometimes there’s the danger of when we ask for something and don’t get it, then we become angry and bitter. But that’s not what God wants for us, He wants us to have an abundant life. John 10:10 “…I am come that they might have life and that they might have it more abundantly”. When Dad was on his deathbed, he was not the least bit angry or bitter at God. He said, ” Either way I will win (with God he could not lose); either I will be healed or if that’s not God’d will then I will go Home to be with Him. And the verse of scripture comes to my mind; 2 Timothy 4:7,8 “I have fought a good fight, I have finished my course, I have kept the faith: Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day; and not me only, but unto all them also that love His appearing”. So I am looking forward to that day when I will see Dad again but also most of all, I will see Jesus. Then I’ll ask the reasons and He’ll tell me why.

So if Lauren doesn’t get her instantaneous healing to walk, then I’ll wait and trust that He knows best. But please God, give us the faith, strength, wisdom and courage to understand why and to leave it at that. For you are God in control!

 

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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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Lauren’s Hope of Walking

i..Lauren as seen Dr Farmer three times, each time we were told she was not a good candidate yet. The last time we were there he told us he would see her when she’s five, unless we thought she was stronger and more ready for the surgery before that time. So we just sent an email to him requesting that he would see her sooner because Lauren is stronger and that her window of opportunity for her to want to walk is closing. So pray with us that Lauren will get to have the surgery and that it will be successful.Doctors at Montreal’s Shriners and Children’s hospitals are spreading the word that a specialized surgery for cerebral palsy patients that can help relieve some of the spasticity of the condition is offered in Canada.
Dr. Jean-Pierre Farmer, the chief of neurosurgery at Montreal’s Children’s Hospital, is one of the few doctors in Canada who can perform the surgery, which is called selective dorsal rhizotomy, or SDR.

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The procedure can help alleviate some of the symptoms of cerebral palsy, particularly the muscle stiffness that can lead to chronic pain, exhaustion, and disability.
Cerebral palsy affects roughly 2.5 out of every 1,000 babies born in Canada every year, and is caused by abnormal brain development or a brain injury during pregnancy or birth. The spasticity caused by CP makes it difficult or impossible for children to move their limbs in isolation. Those who do learn to walk often do so on their tiptoes with their knees close together so that they need a wheelchair or braces to walk.
The SDR procedure involves exposing the nerves in the spinal column and cutting those nerve fibres that cause muscle tightness using electrical pulses. The nerves that properly control movement are left intact.
If all goes well, and all the affected fibres are cut, it can be possible for children with CP to learn to walk independently.