Category: Life

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Lauren’s Incredible Journey Through Surgery

Having a child with  special needs, opens your world to an whole new perspective on life. A world that is challenging, demanding, empowering, loving and hopeful. There are definitely many ups and many downs, each one bringing with it a flood of various emotions. With Cerebral Palsy every day is a new day, each day a new challenge, you never know what’s waiting around the next corner.

That’s what brings us here today at the Janeway Children’s Hospital. Lauren was admitted yesterday and her surgery is scheduled for 11 O’clock AM. Lauren will be having both a femoral and acetabulum osteotomy on her left hip.

Lauren was just taken into the OR and won’t be back until at least 4 O’clock, that makes it over a four hour surgery. You have no idea how we are feeling at this very moment, there are no words to describe it. Now we have to wait, there is nothing in our control. Her life is now in the doctor’s hands and we have to surrender her care to them. But I have to believe that there is a greater power at work here and He will take good care of her and bring her back to us.

It was a very long day, longer then expected really. She got back to Special Care around 6:30pm. Not all that responsive, not wanting to wake up, very weak. But that is all to be expected.

All day Thursday she slept most of the day. Her hemoglobin was down but they wanted to wait and see if she could build it up herself. The following morning it went down again so they had no choice but to give her a blood transfusion. Hoping this will help with getting some strength back and make her feel a little better. The neurologist is coming in soon. Her speech is very different, slurred sort of, could be meds but they want to make sure. So far now that’s the update; now we just wait again.

Neurologist confirmed that it’s her seizure medication plus all the pain medication, that’s making her over medicated and thus the slurred speech. So now she as to stay at the hospital until that’s clarified. We thought we were going to get out today (Friday) but that’s not going to happen. Hopefully tomorrow things will get better.

Well, tomorrow is here (Sat. May 19) and things are looking a little better. Lauren had pain through the night and still has slurred speech this morning. They done blood work again to see what her hemoglobin levels are; hopefully they are increasing. She’s still lying on her back and  hasn’t been out of bed or sat up yet. She could really break your heart if you let it.

Logan as been a real trooper through all of this, he’s spent most of his days at the hospital with us. He is Sissy’s biggest fan and was very upset when she came up from the OR. He couldn’t understand why Sissy wasn’t talking to him, that was a first.

It’s Lauren’s fourth day in the hospital and she’s doing a lot better. She sat in the chair and went for a ride in her wheelchair. She still has pain and spasms but it’s mostly controlled by medication. Taking her home is going to be the hardest, getting accustomed to her being in a spica cast is certainly going to be a challenge.

Lauren is getting back to her fiesty self, thank God. She’s ready to exit this place and get home. It’s Monday (she came in on Tuesday) and it looks like we are going home. Scary and excited at the same time. She requires so much care and lifting; we know it’s going to be rough but we will do it.

Once she’s home, let the healing process begin. Because once she’s recovered from this surgery (around 3 weeks) it’s back in for more surgery on her right hip. Oh my, I don’t know how we are going to put her through this again; this will be her third hip surgery. It sounds so cruel and it is but it as to be done. It’s all part of a plan to help release some of Lauren’s spasticity so she can be a little more comfortable and help with some mobility. All of this seems so unfair, so cruel, so senseless and there’s not a thing we can do about it; helpless.

Once both hips are back in socket and she is fully recovered from both hip surgeries; it’s then we are off to the Children’s Shriner’s Hospital in Montreal. It’s there she will have a baclofen pump trial; to see if the baclofen will help to release some of her spasticity. Baclofen is a medication used to treat spasticity. If the trial works then she will have a surgery where a puck-like device will be inserted under the skin of her belly, called a baclofen pump and a tube going directly to the spine with a constant supply of baclofen when needed. Then the pump will need to be refilled every six weeks and the pump itself replaced every seven months. Which will have to be done surgically each time. Hopefully the baclofen pump will work for her. If not we are running out of options.

The only thing left would be the rhizotomy surgery on her spine. Which she is not a candidate for right now. This surgery is very invasive; they go into the spine and cut certain of the nerves that controls the spasticity to certain muscles and permanently release some of her spasticity. This is the surgery that we feel as her parents, would benefit her the most. It would give her some form of mobility and comfort; long term. Unfortunately, we are not the ones making that decision.

All of this seems so overwhelming as parents; and it really is. Everyday is long, tiring and unpredictable but we do what we have to do. Life is so different now, we have to trust in an higher power for strength because we could never do this in our own strength. I wish I could take Lauren’s CP away, she is so bright, funny, strong, courageous, beautiful and deserves to walk. Sometimes life is just not fair!

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Negative Feedback!

I’ve often asked myself the question; Why do I blog anyway? Why bother? Why would I put myself ‘out there’? Why put energy and time into writing in the first place? It’s not like I was getting paid for it. Why take the chance of being ridiculed, bullied, scorned or negatively impacted? It would be so much easier to not bother at all. To just sit in the corner and pretend I have the perfect life. That would be so nice, but I’d be lying. I’d be painting a picture of myself that wasn’t real.

My writing is twofold. First of all, I write for my own benefit. Writing is therapy! It’s like taking the cover off a boiling pot, it releases the pressure on the inside. So for me, a sufferer of depression and anxiety, it’s a form of treatment. And no, I am not ashamed, nor do I need to be, of having a mental illness. And if writing is going to help my recovery , then I will write/blog. If you have a problem with that then you have the option of blocking me from your Facebook account. Just don’t read my blogs anymore, no one is forcing you to do so.

You know I don’t even feel angry at people who dislike my blogs, not even sad; I feel SORRY for you! If you have followed my blogging since I started and today you still have this attitude of prejudice, stigmatizing, arrogant and lack of understanding; then you are never going to ‘get it’ and I will keep you in my prayers. And please, just don’t follow me anymore, there is a delete button; if you know how to use it.

I believe my writing ability is a gift  from God, and if He sees it as a positive influence, then I must certainly write and use it for His glory.And if you have a problem with that, you will have to take it up with Him.

My second reason for writing/blogging is to help others who are experiencing similar circumstances and or deal with a mental disorder on a daily basis. To break down the walls of stigma, to help people realize they have nothing to be ashamed of. We have an illness; not a defect! I challenge those who think they have the right to judge someone with a mental illness, to show me their ‘perfect’ mental health. We all have our challenges in life; some probably more than others. It’s also my intentions to let those out there know that they are not alone, they needn’t suffer in silence. There will always be people who don’t understand and that’s fine. We don’t live in a perfect world but let’s do our part to make it a little better place to live. With so much evil, ignorance, stigma and hatred in our world today; let’s shine our light and help diminish some of the darkness.

And to those out there who doesn’t share my enthusiasm and love for helping others; I really do feel sorry for you. May God work a miracle in your life today. John 15:13 ‘Greater love hath no man than this, that a man lay down his life for his friends’.

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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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The Day After

My eyes opened and I knew I had to face this day. How am I going to do this? Exhaustion consumed my body before my feet touched the floor. But I knew I had to begin somehow. I felt empty, lonely;  I have to write, there is healing for me through writing. Expressing my thoughts on paper, clears my head, helps the hurt flow through to my pen. This hurt is going to take time, I know it’s not going away in an instant. For how do you say good bye to your best friend and expect not to hurt even when you know it’s not really good bye but see ya later buddy!

It’s that period in between that you wonder how you’re going to cope. I have to believe there is life after death, that there is more to life then this. If not, what’s the point? I have to have faith and trust in something or someone bigger. Which will lead me once again on a path to find answers. Questions that I really already know the answers to. But today I need confirmation and thus my journey down life’s path begins once again.

If my path leads me to the ‘Big Bang Theory’ then it’s there I will certainly find no hope. We live, we die, the END! I can’t accept that, I cannot live my life with no hope. It would be like I were nonexistent. There would be no purpose, a life lost in the wind. I really don’t like this ‘path’; it’s cold and hopeless. I think I’ll turn around and take a path that leads to hope.

This path is much brighter, I see light, bright beams of hope. I think I’ll take this ‘path’ which leads to a Creator; a God that is all knowing, all powerful and everywhere present. A God that loves us and gives us so much hope and purpose and love; for ‘God is Love'(1 John 4:8). For He promises us in 1Thessalonians 4:13,14 “But I would not have you to be ignorant, brethren, concerning them which are asleep(died, passed away), that ye sorrow not, even as others which have no hope. For if we believe that Jesus died and rose again, even so them also which sleep in Jesus will God bring with Him”. 4:16 “For the Lord himself shall descend from Heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first” 4:17 “Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air; and so shall we ever be with the Lord”. Wow, what amazing promises of God. There is no greater hope then this, death is not the end but the beginning! Cancer did not win and will not win, if we die in Christ we will never lose our battle with cancer, it’s then we are cancer free, we have won! To quote my father on his deathbed, “Either way I will win! I will be healed and go home or die and go to my heavenly home”. Where we read in 2 Timothy 4:8, “Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me on that day; and not me only, but unto all them also that love His appearing”. Amazing!

Do you love His appearing? Do you believe in the return of Jesus? Do you believe in Him? Do you believe in John 3:16 “For God so loved the world that He gave His only begotten Son, that whosoever believeth in Him should not perish but have everlasting life”. That is the gospel in a nutshell, its that simple! Billy Graham once said, ‘that once you heard the gospel message once; your life would be forever changed; whether you accept it or not, you will still be changed’. Because if you do not accept Him, you now have the knowledge of the gospel and will be forever etched into your mind. I’m loving this ‘path’ I chose.

The song says, “But until then, my heart will go on singing, until then with joy I’ll carry on, until the day my eyes behold that City, until the day God calls me Home”.

But for now, God didn’t leave us helpless, alone or rejected. He promised to walk this path with us, to never leave us or forsake us. He promised us strength for every step of the way; ‘Isaiah 40:31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk, and not faint’. So when life’s losses, troubles, illnesses and tribulations weigh us down to the point of exhaustion, we have the promise that we wait on Him, He will renew our strength again! I am overwhelmed by the mercies and promises of God. Now this is Hope!

“All is well with my soul, He is God in control, I know not all His plans, but I know I’m in His hands.” I want to end this blog with a verse from 1 Corinthians 13:13 “And now these three remain; faith, hope, and love: but the greatest of these is love.”

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Until We Meet Again….

                                                              

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I moved to Bay Roberts over three years ago during a very dark time in my life. At that time I was very ill myself with a life altering diagnosis, my life would be changed forever. I knew very few people in the area and felt so all alone. I prayed that God would send me a friend; someone I could confide in, socialize with and just hang out. Little did I know there was a lady praying the same prayer for her husband; who had terminal cancer. Both our prayers were answered, Curtis and I did not meet by coincidence or chance, it was divine intervention; God had a plan for each of us. We leaned on each other through good days and bad days. He always told me, ‘I got your back’. And I believe he always did. I think sometimes I was his thorn in the flesh lol.

I am not saying good bye to my best friend but just saying, ‘see ya later buddy’! And this is one thing I am sure of; we will meet again. He is just away, not gone forever. Thessalonians 4:17 “Then we which are alive and remain shall  be caught up together with them (those who passed on before us) in the clouds, to meet the Lord in the air; and so shall we ever be with the Lord”. What an amazing promise of hope!

It was quite evident the love that Curtis had for his family and friends. And that love will never die but will be carried through the generations because of the great legacy he left us all. 1 Corinthians 13:7 says, ” Love never gives up, never loses faith, is always hopeful and endures through every circumstance. 1 Corinthians 13:13 “And now these three remain, faith, hope and love. But the greatest of these is love.” Curtis believed these words from the depths of his heart. He never gave up on love, he never lost his faith in God, he was always hopeful despite many hopeless obstacles, and he kept going through every circumstance. He fought the good fight and won! 2 Timothy 4:7,8 “I have fought the good fight, I have finished the race, 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 to me only, but unto all them also that love His appearing.” O the amazing promises of God!

If there were words that could some up Curtis, they would have to be “a gentle spirit.” Need I say more, a man of great integrity. So, Curtis; thanks for being my best friend, you sailed with me through many storms and for that I will never forget you. Until we meet again…..

Your best friend,                                                                                                                                      Harris

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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 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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This Recovering Mental Illness

J                                                       The day is almost over, night settles in bringing with it it’s darkness. But the day was a beautiful day filled with sunshine and bitter coldness. The week itself felt like the Battle of Armageddon. Along with all the everyday battles and struggles, my war was raging on the inside. I’m not referring to a spiritual war; evil against good, but a war between sad and happy, abnormal and normal, unfulfilled and fulfilled, worthless and worthy, hopeless and hopeful. Where do I stop, when will it stop?

When my doctor told me, almost six years ago, that I had an incurable illness, a long uphill climb and the likelihood of returning to work was a long  way down the road. I thought he was nuts (no pun intended). He told me to apply for Canada Pension Disability. Why would I need to do that, I’ll be better in a couple of months? I guess I have to swallow my pride once again and  admit that he was right and I was way off base. Because after the week that I just endured, I realize this ugly disease still ravishes my mind and body and can attack at any moment; even after six years.

Trying to accept the reality of what is, overwhelms me like a raging tsunami. I feel like the Israelites who wandered in  the desert for forty years and not unlike the Israelites, I probably do my share of questioning, grumbling and complaining. Why God have you brought me into this desert to die? I am still searching for that purpose, that reason why I am where I am at this stage in my life. This is so far from my plans (our plans). I would have never said in a million years.

But who am I? Why not me? There are no respect of persons. It rains on the just and the unjust. I just feel there are holes in my umbrella and I’m soaking wet. I long for the rain to hold up and the sun to break through the clouds. His grace is sufficient for me, or is it? There are days I have my doubts but that’s not His fault. This road sure isn’t perfectly straight and flat but many are the twists, turns and pot holes. I just pray everyday that He’ll guide us over this road of life and one day will bring us safely to our destination.

I guess after suffering and fighting this illness for so long, when I still have bad days or weeks; still makes me nervous. I should be better by now, is my wishful thinking. But my illness was very serious and therefore more complex the recovery and that doesn’t happen overnight. I was hoping by now that my recovery would be more advanced, that I would be further along on my healing journey. But I have no control over what will be, I only hope for the best.

 

 

 

 

 

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Come Morning

Morning comes. But where’s the light, darkness surrounds my being. I search in the darkness but I can’t find the light. I stumble and fall but I have to get up again, my life depends on it. But God I can’t do this again today, the darkness is so overwhelming, the weight is so heavy; I can’t carry it anymore. I cry out to you to just take it away or just let me die; but I want to live, really live.

I just want to hide and crawl inside myself and never come out. How could I be feeling this way today? Is my life just too overwhelming, too complicated, or is my illness consuming every ounce of strength out of this body of mine? Am I just too exhausted, too tired of fighting, too tired of life? But something is about to break, and I hope it’s not me. Maybe there’s going to be a break in the darkness, a crack, a flicker of light, hope, peace, calm is flowing through the fog.

There’s nothing I want more then to be real, not have to hide, just be me; no strings attached. Yes I have a mental illness: not a weakness, not a character flaw, not a spiritual defect; but an illness. And yes I still struggle today, not by choice but it is what it is. If I had a physical illness I would not feel the pressure from others to heal myself but would be accepted, understood and looked upon with concern. But because it’s a mental illness , the stigma, the shame, the wanting to isolate and not talk about it or share it with others; still overwhelms my thoughts, making me feel misunderstood, different then others and just not belonging.

This morning I did not want to talk to anyone or share how I was really feeling. My mind was filled with thoughts of ‘people are tired of hearing’, ‘if you tell, others will judge you and say you’re weak’. But you know what? I really don’t care what others think anymore. If they don’t understand maybe they’re the one with the character flaw; not me. If they walked in my shoes this morning; how would they react? Would they run and hide? Be too ashamed of the way they were really feeling? So I won’t run and hide anymore. If I’m having a rough day, I will share it with someone who cares, even when my mind says not too. Because if I’m going to survive this illness, speaking out is one of the best forms of healing I could find.

I’m always searching for analogies of how to explain or express what depression is for those who are suffering and don’t know what’s going on, because it can be very scary. So understanding what depression is helps to take away some of it’s power, because this morning my serotonin levels must be on empty. Serotonin is the chemical found in your brain that is referred to as the ‘feel good hormone’. And if your body is not producing enough serotonin then you will not feel so good, finding happiness, doesn’t come natural, it’s hard work and exhausting. It’s that simple! The analogy I found the other day, and it makes total sense to me is this; “There’s no difference between my brain not being able to make correct levels of serotonin and my pancreas not being able to make the right amounts of insulin”. So if your serotonin levels are low, which we know in the morning they are at their lowest , then you won’t be feeling so well. But as your day progresses you should feel a little better.

Then night falls and I long for my escape from reality. The comfort of my bed seems to bring that reprieve that I’ve been longing for all day. Maybe sleep will bring peace and calm to my troubled mind. There has to be light at the end of that tunnel; I’ve seen it before and I will see it again.The truth is I’m not feeling strong today, I’m not feeling that I have it all together today; but tomorrow brings the hope that things will feel better in the morning. So as I sit here in my office at the end of a rough day, I pray for the peace of God to cover me and my family; that’s my only hope!