Tag: CP

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Waiting For Lauren

I’m standing at the kitchen cabinets, sipping on my coffee; my holy water. But from the corner of my eye I catch a glimpse of something that wasn’t always there. I quickly turn my eyes back to my mug of coffee, I don’t want to look at ‘it’. Why can’t I be just dreaming? I guess it wouldn’t be classified as a dream but a nightmare. I  capture another glance, maybe this time it’ll be gone. But no, there they both appear; motionless ,empty, just waiting…. waiting for Lauren. Her ‘Zippy’ (I guess it’s supposed to be a more glamorous word for wheelchair) and her borrowed ‘Stander’. I hate them both, I hate Cerebral Palsy, I hate what it has done to our little girl and what it is doing. There is no end in sight, no happy endings, no happily ever after. Just uncertainties, pain and the great unknown. Because with CP you never know what a day will bring forth.

But still from the corner of my eye I see ‘it’. It really looks like something from the movie; Silence of the Lambs, where Hannibal Lecter is strapped to a chair for transportation while in prison for various murders and cannibalism. This chair is to immobilize it’s occupant, while the chair I’m looking at is to mobilize it’s occupant; but yet they look the same; ugly! But we have to look pass the ugly and see what this chair can do for Lauren. In reality, no child should have to be strapped to any chair but sometimes some children don’t have any other options. So now we have to see the beauty in these mobile apparatuses and look pass the unfairness, the confinement and the not so pretty side. And look at what these chairs and apparatuses can do for our child’s mobility and benefit; despite what we really feel inside .When really this morning, I can’t focus both my eyes on either. When really I’m screaming on the inside; Why? Why? Why?. Please don’t tell me you have an answer because I believe there are some things in life there are just no answers. When really what I would like to do with all of it is to take a sledgehammer and beat it up, piece by piece.

But in reality I know I can’t do that. I just wanted you to feel our pain and to understand, even just a little of what this does to a parents heart and soul. But  for those out there who don’t have a disabled child, you cannot feel our pain, you can only imagine and that doesn’t even come close. I don’t blame you, it’s just the way it is. So today if you have healthy children; be thankful, never take it for granted and teach your children that kids with disabilities are children too and are to be respected and loved. And not looked upon has having some contagious disease or less of a person because they are sitting in a wheelchair or some other mobile device. They are human beings with an heart and feelings that are greater then what I can ever imagine. No matter what diagnosis they may have, whether that being Cerebral Palsy, Spina Bifida, Down Syndrome, etc. we are all the same, we are all human beings and that label you cannot remove.

It’s still so sad that we live in a Society that stigmatizes anyone that is outside what Society defines as being ‘normal’ We are all different and that’s a good thing; acceptance and love for all is our biggest obstacle. So today I will try with all I have in me to look at these mobile apparatuses as being a good thing because without them whether we want to believe and accept it or not; Lauren needs them. And for her sake, I will do whatever it takes to make her life has pleasant, happy and mobile as it can be. Because  she’s a ‘Princess’ that only rides in her ‘Chariot’.

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Lord Help Us To Believe

Lauren asked Mommy, ‘Mommy are you sure Jesus is going to make me better?’ Wow, how do you answer that truthfully? What we want and what we pray for isn’t always what we get. Sometimes God’s way isn’t our way. Our timing sometimes is way off, we expect answers right away, but I believe that’s not the way it always works. And trusting God when your five years old little girl is in pain and can’t walk is very hard to understand and accept.

You see, Lauren as been in bed now for months, she is gradually improving but very slowly. She is so intelligent and because she is, there is nothing she doesn’t analyze. Therefore after all this time she as spent in bed and having so much pain and discomfort, she’s starting to question God. Everyone keeps telling her that Jesus is going to make her better. So she, being no different then ourselves, asks the question, ‘Mommy are you sure Jesus is going to make me better?’ Are we giving her false hope and unrealistic goals? Is she beginning to realize that I’ve been in pain and discomfort for so long and Jesus hasn’t made me better? Maybe He never will, maybe this is her life.

And I’m beginning to believe that maybe what we are telling her isn’t what God wants at all. It’s what we want and oh we want it so desperately. There is nothing I would want more then for her pain to end and she could just get up and walk. But is this what God wants? I don’t know, my thoughts are not God’s thoughts. I am trying so hard to believe and trust, when things aren’t looking that great. I believe that miracles can still happen and that God is our greatest option. But the reality is we are tired, worn down, worried, anxious and helpless. There are days when we feel we are sinking, our ship is going down, when we have no other alternative but to keep looking for that light, that beam of hope, it’s there somewhere, still shining; but the fog is so thick with life’s trials and tribulations that it’s so hard to see. We need a miracle, if not for healing, then for strength, hope and wisdom to endure, to overcome, to do what we have to do.

A family cannot experience what we are and it not affect the whole family unit. It’s tough on all of us and we struggle to keep us together. All four of us have experienced so much trauma in our lives, so much unforeseen change, that some days it’s near impossible just to focus on getting through that day. But we try to take it one day at a time and that’s not easy when the decisions you make today, could drastically affect tomorrow. We have to believe that there is someone greater, an higher power that is watching over us. Lord help us to believe.

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Different and Isolated

It’s late November, a very misty,foggy, mild day. But it’s November, where’s the white blanket of snow and the cold frosty air? Oh right, we’re in Newfoundland where the seasons change every ten minutes, but I’m not complaining because shovelling snow is not my idea of fun. The push is on now to get the Christmas decorating done and that takes me forever because I can only do a little at a time. If I tried to do it all at once, I would just get overwhelmed and my anxiety would go through the roof.

It’s kind of ironic the things we take for granted because there was a time when those kind of tasks didn’t trigger my anxiety; it was total enjoyment. But now I have to work a little harder at keeping anxiety under control and that requires work on my part, which exhaust me and steals the joy from the things that once I so much enjoyed. I know that’s hard for some people who haven’t suffered from major anxiety to understand, and that’s okay. But my goal here is to educate those who don’t ‘get it’ and to let those who do ‘get it’ to know that they are not alone.

This illness is so disabling and crippling (major depression and anxiety) that it makes you feel like you’re different, you’re not normal, you’re flawed; that you’re going around trying to imitate everyone else that you think is ‘normal’. Trying so desperately just to fit in. But truthfully, there are so many times that I feel I just don’t fit in, I’m different. And that feeling is so isolating.

Since Lauren was diagnosed with Cerebral Palsy, and I’m not comparing the two for similarities but it gives me a better understanding of what different and isolated really feels like. No matter what you think or say, there is still such an enormous stigma that is attached to a wheelchair. Just for example sake; it was just yesterday we went to a birthday party with Lauren. And just for the moment I began to observe how the other children interacted with her. And I realized that a lot of them, not all, were staring at her like she had some contagious disease, like they had never seen a wheelchair before in their lives. And no, this was not just my thinking but when we left, Lisa pointed out the same observance. It was very sad, especially in today’s society where kids are exposed to so much but yet still looked at Lauren as if she was different. And yes she is different but no different then a kid that was wearing glasses, hearing aids, kids with diabetes or me with my mental illness. In one way or another we are all different, I guess some differences we just can’t see, and because we can’t see them they are looked upon as ‘normal’. So sad but yet so true.

I guess for us it’s accepting the fact that that’s the way things are. And some things will never change, no matter how much we try to educate and no matter how much we advocate, some things will never fully change. We just have to embrace those who do and accept those who don’t ‘get it’. And realize that there are still those out there living in their perfect world, with their arrogance and ignorance and for those we will say a little prayer.

 

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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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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 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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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!