Category: Cereabal Palsy

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And That’s Suppose To Be Okay?

Some well meaning people say, “It will get easier with time”, and I thank them because I know they mean well. Will we ever grow to accept Cerebral Palsy and all the limitations that it imposes on Lauren’s life? Today it’s best you say nothing. I will feel exactly what I feel and that’s not pretty.

Lauren calls me from her bedroom, where she spends way too much time but there are days when that’s where she’s most comfortable and free of pain from not sitting. And that’s suppose to be okay? When I arrive at her bedroom she says, “Daddy will you help me ride my bike today?” What am I suppose to say; no you can’t do that? Through a broken heart and tear stained eyes, I tell her we will try. And she’s fine with that. You’re probably thinking, you shouldn’t let Lauren see your tears, that might upset her. Well, I wish she could see my tears but you see, Lauren is vision impaired and she can’t see my tears. So we are talking face to face and  Daddy is one broken man. Broken because I realize also that she can’t see my liquid ink flowing down my cheeks. They’re invisible to her. And that’s suppose to be okay?

But today Lauren and I will take the dog for a ‘walk’. Lauren will always ask if it’s raining today, because she knows if it’s raining we won’t go. It’s not raining, so its a nice day to go for a walk. Lauren in her wheelchair, holding the leash, that’s attached to her chair but she doesn’t know that because she wants to hold the leash by ‘herself’. So off we go for our walk…. And that’s suppose to be okay? That’s easy for you to say because you are not the one pushing the wheelchair.

I’m not being angry at anyone, I’m just stating a fact that it’s not okay. It’s not okay that Lauren can’t ride her bike, it’s not okay that Lauren can’t see my tears, it’s not okay that Lauren really can’t ‘walk’ the dog, it’s not okay! And I feel justified in saying, it’s not okay!

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Lauren’s Unending Pain

I guess Lauren as hit another bump in the road, there’s been plenty. From the time she was diagnosed , at age one, with Cerebral Palsy, there has been one bump right after the other. Life as certainly not been kind to this little girl; certainly not fair. The challenges that come with Cerebral Palsy have been too many to count. You might say will look on the bright side; well I’m looking but not seeing a lot of brightness at the moment. There is nothing pretty about Cerebral Palsy and if she were your child, you would probably understand our frustrations and helplessness.

Now don’t get me wrong, Lauren is one of the most beautiful children you could meet, she is an angel personified. She awakes in the morning and I say, “how can you look so beautiful the first thing in the morning?” She gives me a smile no matter what. Her intelligence goes far beyond my own, well in that case she doesn’t have far to go lol, so let’s say Mommy’s. We are so thankful for the many positive qualities that Lauren possesses.

But we cannot overlook the obstacles, when it comes to her health, that she has to endure. The castings, surgeries, physio, etc. that she has had to tolerate, is more then an adult could ever endure. But she is brave, strong, and courageous, yet we cannot turn our hearts away from the not being able to walk, not being able to sleep alone, the seizures, the cries and screams of pain and fear. Those are the things you can’t overlook and ignore and only see the good. Because with this illness comes the not so nice side.

Lauren was scheduled (so we thought) for her third femoral and acetabulum osteotomy, this time on her right hip. The surgery was booked for tomorrow (August 9) but after we finally got someone to answer the phone (after calling for two weeks), we were told there would be no surgery and they couldn’t give us a time when it would be done.

Now please understand my anger and frustration with the Janeway Hospital. It’s bad enough that we experienced this same crisis on her last surgery and now for it to happen a second time, is beyond belief. Here we have a little girl who just recuperated from one hip surgery and spent weeks in a body cast, And from today, to the day her cast came off, Lauren as screamed in pain every time she is moved. So her summer as not been what you would call playful and enjoyable.

For the past few weeks , the haunting thoughts of having the next surgery performed, plagued our thoughts. How could we do this again and live through the horrors? But we were willing to do it because it was what Lauren needed done so desperately to help ease some of the pain that is not going away without this surgery. Then to be told so politely that the surgery was not taking place, just devastated us. How can she go any longer, enduring this inhumane pain but according to our Health Care; that’s the way it is in the summer. In the SUMMER??? The season should not dictate available health care for our children. She’ll have to suffer a while longer until it’s convenient for someone to come back from holidays. If this were a dog that was in pain and we were withholding from taking her to a vet; we would be charged with animal cruelty and be aired on the 6:00 News. But in this case it’s a child and our hands are tied.

We are Lauren’s advocates right now; and we speak on her behalf but right now Lauren is going to speak for herself:

‘I can’t walk, my legs won’t work”

“But I want to walk like Bruddy”

“Am I having a cast this time?”

“Why did the Doctor have to cut me?”

“What did he cut me with?”

“My leg hurts”.

“Could you rub my leg and make it better”.

“I’m afraid”.

These are some of the questions and statements that Lauren as said over the past few months. Could you please help her and answer some of her questions because we just don’t know what to say anymore. 

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Lauren’s Wish

It’s summer; warm refreshing days, long evenings, free time to play, children running, jumping, skipping, swimming. Enjoying all that life has to offer with no expectations, just pure freedom.  And for children that’s exactly what it should be. They deserve nothing but the best, free of the responsibilities and cares that we as adults have to undertake as part of life.

For a few children this is not necessarily the case. The things that most parents just take for granted ( I’m not blaming them) we pray everyday for Lauren. Cerebral Palsy as stolen so much from her. But we try so desperately to give her a life of hope, normalcy, play and to explore the world as she sees it.

The older Lauren gets the more we realize that Lauren as so many obstacles to overcome, not just from her illness but also from society as a whole.  From getting from point A to point B requires our assistance. Accessibility will always be a struggle, because not everywhere you go is wheelchair accessible. I have been an advocate, on Lauren’s behalf, to make our space in this world a little more accessible. Surprisingly enough and sadly, not everyone are too anxious to conform to accessibility. Then we are experiencing the ugliness of inclusion; not always do we find people/organizations with open arms to include Lauren as an equal member of society. Sometimes being all inclusive turns out to be quite the opposite.  But again, I will be Lauren’s advocate and make sure that she feels included. Just  because her legs aren’t working and she as to use a wheelchair; makes her no different then if a child is wearing eyeglasses to see or hearing aids to hear. All inclusive means just that; ALL inclusive, none left out.

We are not in denial, everyday is a constant reminder of Lauren’s challenges but that doesn’t mean we don’t want the best for her but in order for that to happen we may have to overcome many obstacles, challenges, struggles, stigma, ignorance and false hopes. We still have days when we wish Cerebral Palsy would just go away and leave us alone. To let Lauren just live a ‘normal’ life. We understand that everyone has their own struggles, hurts and pain but I’m writing about Lauren’s today. Sometimes I wonder will we ever get to a point of acceptance; I don’t think so, not as of today anyway.

Lauren’s last words before falling to sleep last night was, “I wish I could walk like Bruddy.” What do you say? How do you say it? Lauren ‘may’ never walk like Bruddy. We have already been told that Lauren will always need the assistance of a wheelchair, walker and aids. Do we accept the expertise advice of the medical field? To be honest, I don’t know anymore!

If we don’t, we have one option left. And that would be a miracle from God Himself. Would that be possible? I pray it would be. Yesterday the statement was going over and over in my head, ‘If Jesus could do it then; He can do it now.’ Well, here she is Lord, she’s all yours. If you want her to walk, do your work! But if not, please help us to accept your will and please carry her over the many bumpy roads she is going to come in contact with. At those times may you carry her…..

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Are the Roads Bumpy Today?

I know sometimes it seems like my blog is all about my own illness and sometimes that’s probably true because I feel I can talk about myself and it doesn’t bother me too much. I try desperately to update and fill you in on Lauren’s journey with her cerebral palsy. But to be honest; I often put it off because at times it is just too painful to write about. An innocent angel that doesn’t deserve what life has put in her path. The last time I shared was on May 16th, when Lauren had her osteotomy on her left hip. And then she was in a spica cast for 6 weeks; we did all survive but it was rough going. Lauren has had more then her share of pain and challenges. And then  there’s Logan who’s caught in between all this chaos. But he’s such a great, big brother; they just adore each other.

Just when we thought it couldn’t get any worse; on June 26th she had the cast removed. We were certainly not prepared for the horrific pain that Lauren would have to endure. For weeks, every time she moved she would go into a rage of screaming in pain and fear. This was especially difficult for Logan as well, he didn’t like for his little sister to be in so much pain.

It’s now July 8th and Lauren is still having pain and pretty much confined to her bed where she fines most relief from pain. She is very limited now to what she can do; she does sit up in her chair for approximately 45 minutes but then she wants to go back to bed. And riding in the van is very uncomfortable and painful, especially on a bumpy road and most of our roads are fairly rough. I was putting her in the van today and she said, ‘are the roads bumpy today?’.

Today, July 10th, Lauren saw her surgeon again. He wanted to do the other hip next week but couldn’t get it worked out, so he is now hoping for the following week. How are we going to put her through all of this again? Oh my God, life is so unfair. No matter how many tears that fall, it doesn’t change a thing. No matter how many prayers we pray, the reality of the torture, pain and tears don’t go away.

The continuous, never ending surgery after surgery consumes every ounce of strength we have. Days when you feel you have nothing left to give but you have to go on. So much depends on us, so much responsibility, so much care. Lord, how do we do this again and again? My faith cries out to you today, please help! We cannot do this alone; a power, a strength greater than ourselves has to intervene. Please help us to trust in you. Our ship is sinking in this storm of life; please wake up, don’t you care that we perish?

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Through The Fire

May I be real, honest and truthful? Why do I feel the need to be  honest? Why can’t I for once tell you a lie? And my answers, why can’t they be what I would love them to be? Why do they have to be what I so don’t want them to be? Why? Why? Why?

The day is saturated with sunshine and beauty on this Saturday morning. God’s creation is alive and in full bloom; the trees, flowers and even the grass, expresses the awesomeness of God’s handiwork. This is what my eyes see.

But no matter what I see with my eyes, I cannot deny what I feel mentally and on the inside. But  God I’ve been in this storm long enough, please stretch forth your hand and speak, “Peace be still”. I’ve passed through the waters, I’ve walked through fire and at times I feel  I’m drowning and times when I feel I’m consumed by the flames. But please remind again of your promise to me that, “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze” Isaiah 43:2 NIV. But Lord, why do I feel like I’m drowning, burning with this storm? My mental illness still sweeps over me like a river, it’s flames consumes me like a raging forest fire. But my faith still looks up to you, my trust is still in you. Please remind me dear Lord, that you are in control and you won’t let me/us go.

There’s a song that The Crabb Family sings, Through the Fire; that really sums up what I’m feeling and trying so desperately to express.

Through the Fire
The Crabb Family
So many times I question the certain circumstances
And things I could not understand.
Many times in trials my weakness blurs my vision
And that’s when my frustration gets so out of hand.
It’s then I am reminded, I’ve never been forsaken.
I’ve never had to stand one test alone.
As I look at all the victories, the Spirit rises up in me.
And It’s through the fire my weakness is made strong.
He never promised that the cross would not get heavy
And the hill would not be hard to climb.
He never offered a victory without fighting.
He said help would always come in time.
Just remember when you’re standing in the valley of decision
And the advisory says give in, Just hold on.
Our Lord will show up (Yeah)
And He will take you through the fire again
I know within myself that I would surly perish
If I trust the hand of God, He’ll shield the flame again.
He never promised that the cross would not get heavy
And the hill would not be hard to climb.
He never offered a victory without fighting.
He said help would always come in time.
Just remember when you’re standing in the valley of decision
And the advisory says give in, Just hold on.
Our Lord will show up (Yeah)
And He will take you through the fire again
Just hold on
Our Lord will show up (Yeah)
And He will take you through the fire again.
So, yes, I’m walking through the fire; but I’m walking. We live our lives with so much uncertainty, it’s not black or white for us. Lauren’s cerebral palsy alone has brought so much heartache and questions that it could literally break the heart of God.
Lauren was sitting on the sofa this morning, doing her ‘homework’. Then she ask me to bring her to her bed and as I’m carrying her, my heart is breaking. She has no mobility whatsoever and every step she makes, we make them for her. I was once again reminded of her limitations.
It’s such a beautiful day and i just want her to run outside and play. I don’t even envy other children or wish for Lauren what they have, I just want what’s best for Lauren. And today sadness and heartache ravishes my body for her sake. Only us and God really knows what’s in store for Lauren and its a long, hard road. Today I’m a little angry, maybe angry that I’m so helpless and there’s so much that’s out of our control. I just want to fix her; and maybe she’s not broken at all. Maybe it’s me that really needs to be fixed but I can’t even do anything about that.
One morning this week, Lauren wanted to pick a promise for Daddy from the promise box we have nestled on the side table. Maybe she knew I needed to be reminded of God’s faithfulness. The promise is taken from Jeremiah 29:11. “I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future”. Oh to have the faith of a child.
Today I will pray for strength, wisdom and guidance. So when I am going through deep waters and rivers, when I walk through the fire; may I have the assurance that I am not alone and He has a plan already sat in motion to give me hope and a future. In Him will I trust; even “Through the Fire”.
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Two Shoes

Today is Church day, a day of rest; not in our case. Lauren dictates the mood of the morning, and so would I if I were in a body cast. Her bath now consist of a bed bath and her hair being washed in the kitchen sink by lying her on the counter and her head in the sink. You do what you have to do, it definitely takes two of us to accomplish this task.

Her bed bath doesn’t go all that smoothly; pain, hurt, and discomfort seems to be the order of the morning. This is a timely procedure, with her popping tears from her eyes as big as raindrops. And you are holding back tears because you know if you start, they will never stop. None of this makes any sense and life seems so unfair, for a little child to have to suffer so.

Then its time to put on her Sunday best and top it off with her princess shoes. But then she realizes; I only have one shoe on and I have two feet. She can’t understand the concept that one cast practically covers her foot, while the other foot is totally exposed. So she cries all the way to church because she only has one shoe.

I explain to her that we can’t go into the Church with her screaming and if she doesn’t calm down, we’ll have to go back home. So she seems to understand and stops crying. By this time I am so frustrated, heartbroken and helpless; I don’t know how I’m going to go inside and pretend that we are having an amazing morning. And put on my ‘expected’ Christian smile and worship.

I make it to the doors, with my my anxiety through the roof, and without turning around  and making a run for home; I enter the Church. I’m already  late and that doesn’t go over well with me, my anxiety requires me to be there ten minutes before church starts. But not this morning.

I wheel us into our usual spot and take a breath; a big, deep breath. I lean over and she quietly says, ‘I want two shoes’. Now I can’t hold back the tears anymore, I am totally overwhelmed with the situation and life.  Right at that moment it was more then I could bare. So I thought, what do I do? I was at the end of my resources and I felt Lauren’s doctor’s were playing Russian  roulette with Lauren’s mobility. As a family we could not take anymore, nor could we do anymore.

I decided there and then; well if we can’t , Jesus can. I had to believe that. He was our only resort, our only hope. Quoting Pastor Isaiah, ‘So when we are at the end; Jesus is at the beginning’ (something like that). So without any hesitation, I brought my little girl to Jesus and I have to believe that He met us there at the front of that Church; I laid her on the altar (not literally), I gave her back to God. Me with my broken heart and broken mind and Lauren in desperate need of a touch from the Master. I pictured Him taking Lauren up in His arms and saying, ‘It’s going to be alright my child’. I prayed so earnestly for God’s intervention in our lives because without Him, we were falling apart. Our family was torn apart by life’s trials and only He could fix it.

Eventually Lauren will get to wear two shoes, but not only wear them but walk in them. If I don’t see it here on earth, I will see it in Heaven; we will cross the finish line one way or another. But we will win!

Isaiah 35:6 ‘Then will the lame leap like a deer, and the mute tongue shout for joy. Water will gush forth in the wildness and streams in the desert.’

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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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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!