Tag: cerebral palsy

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It Can’t Be In Vain

It’s kind of ironic that it’s when I’m in the most pain, it’s then I can write the most. It doesn’t take away the pain, it just helps to alleviate it a little. Gives me the feeling that I’m talking to someone, that I’m baring my soul to them, which in turn lightens the load a little.

Today my heart is broken, the pain that I (we) bear is so overwhelming. Up until yesterday, Lauren as been in bed not wanting to be moved because every time she did, she was thrown into an ocean of unbearable pain. Has her parents, we have been drained, emotionally, physically, psychologically and spiritually. How long can we stand by and watch our helpless five years old angel just not want to move and cry screams of terror if she did. We plead with God to make it stop! What is the purpose of al this pain; she is innocent, helpless and fragile?  Please just make it stop!

Early yesterday morning the phone rings. Lisa answers, it was Lauren’s Orthopedic surgeon. I knew by the look on her face, something’s not right. How often do you get a call directly from your doctor? Pretty much never. But here he was calling us personally; he wanted Lauren to be admitted again, immediately, today. Lisa finished the conversation and told me the news. But how are we going to do this again was her plea? When you are already broken, hanging by a thread but yet you have to face another mountain. How can we climb yet another? There is just no end in sight.

The doctor said, ‘we have to save these two hips or if not, all that we have done (the surgeries on both hips) will be in vain.’ We are now in a panic because in order for Lauren to even have a chance of walking she has to have two good hips because if not the Children’s Shriner’s Hospital in Montreal will not even consider her for the other surgeries that she needs done there. This as to work, she as got to get these hips moving and right now they are not. All this pain and suffering cannot be in vain.

Lauren is now settled into her ‘hotel’ room, as she calls it, once again. I do believe it’s where she needs to be, despite how difficult it is. Her x-rays came back good, the doctors had feared that something had moved out of position, which could give her all this pain. But thank God everything is fine. So I guess now it’s weeks of physiotherapy; that will certainly not be an easy road, but it as to be done. No one wants their child to cry in pain and hurt. We still pray that all the angels in Heaven will surround her and protect her.

Today we search for hope, pray that our faith would be renewed and the strength that can only come from an all powerful God. And thus, we start yet another journey.

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No Options Left!

The screams of terror, fear and pain fill the house. No, we are not watching a horror movie; it seems we are living it. Logan rushes to close the bedroom door because he can’t bare to hear his little sister in so much pain. It was just Monday, October 22,2018 that Lauren had her third spica cast removed. For anyone having a cast removed is never pleasant but for Lauren it’s even worse because her cerebral palsy exemplifies itself by spasticity(tightness)  of the muscles.

Because her muscles have been unable to move within the cast: they are now weak, tight and very little control over her movement. If she is moved at all, even to do a pamper change, throws her into an horrifying rage. We have to put her in a bath of epson salts and very warm water to help relax and awaken her now ‘sleeping’ muscles. Getting her from the bed to the bathtub is nothing short of a nightmare. She is clawing at my neck in hopes of getting relief from the fear and pain. Once she gets in the tub with Mommy, she starts to settle down and relax a little, to a point where she is just floating. We do this for about twenty minutes. Then its time to get out and the terror starts all over again.

Why am I telling you all of this? It’s because I want to educate and make you aware of what’s involved in caring for a child with a disability. And also to make you aware that our insensitive, non caring, non compassionate Government does nothing to help. We has her parents feel so all alone and no support, we have to provide 24/7 care ourselves with  no respite care because we can’t pay for it ourselves and our Government as declined  any help whatsoever. We are not complaining about what we have to do, because we love Lauren and would give our lives for her. But we believe we deserve a little help from our Government to receive some respite care. We are only human and we are running on empty and this road is just beginning and we are falling beneath the load already.

What do we have to do to get some help? I am tired of pleading with our Government officials MHA, MP, Minister of Health, Minister responsible for the Status of Persons with Disabilities, etc. Where did I get with all this advocating? No Where!

Where else can I go? What else can I do? We have run out of options and feeling exhausted and overwhelmed. Who can help? Who will help? Someone as to do something and I’m calling upon our Government to get their heads out of the sand, to hell with policy and do what’s right for this little girl and her family.

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Lauren’s Walk of Fame

Daddy’s writing again, he must have something big on his mind (He calls it getting inspired). Mommy, Daddy and Bruddy(Logan) are my biggest fans. They want the absolute best for me, but you see I have Spastic Quadriplegia Cerebral Palsy and that creates a lot of problems for me; especially when it  comes to mobility. But we believe one day mobility won’t be an issue, and my wheelchair won’t be my form of mobility but I will be able to walk on my own.

Today I am lying flat on my back in an hospital bed at the Janeway Children’s Hospital in St.John’s, NL. I have spent a lot of my time here since I was diagnosed at age one but now I am five. Just yesterday I had my third dega osteotomy and as well I had my adductors released (cut). Three surgeries in one.  In children with spastic(tight) muscles, who are unable to walk, the hip joint does not always develop properly. This was the case for me, therefore I had to have this surgery on both my hips to correct the abnormal hip development and prevent further dislocation and prevent or reduce pain in the hip. But unfortunately for me, the first time I had the surgery, the hip became displaced again and the surgery had to be redone. I’m hoping this will be my last osteotomy, because I want to move on to my next plan of attack.

To present, I have made four trips to the Shriners Childrens Hospital in Montreal, for an assessment to determine if I would  be a candidate for the Selective Dorsal Rhizotomy. Which is really my only hope (other then God) of walking, but four of the times it was determined I was, as of yet, not a good candidate. What this surgery entails is; opening up the lower back to separate the ‘rootlets’ in my nervous system, which would ease/release the tightness/ spasticity of the muscles in my legs, which would hopefully allow me to walk or at least some form of mobility. But right now, that’s not happening anytime soon but we are still believing that it will happen sometime in my future. Because I really want to walk.

My next plan of attack after I am fully recuperated and both hips are in good working order; is another trip to Montreal. This visit to the hospital there would be to determine if a baclofen pump would be beneficial and work for me. A three day trial would determine this. If this is successful then a programmable pump and catheter that delivers baclofen  which helps relieve severe spasticity; by supplying the medication directly into the intrathecal  space where fluid flows around the spinal cord, would be surgically inserted inside the skin around the abdomen area. This would supply a steady supply of baclofen to the spine and in turn reduce spasticity. This would be a temporary alternative until I was ready and a good candidate for the rhizotomy surgery.

So it ain’t over yet and we are not giving up. The journey may be long, but our prize is the destination; that being one day I will walk just like Bruddy. And will never ask the question again; ‘why am I in a wheelchair?’ Miracles happen, I’ve already proven that. My strength, resilience, determination, willpower and drive will all help me reach my destination. You just wait and see!

 

 

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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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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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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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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.”