Tag: walk

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Wings To Fly

When Lauren was diagnosed with spastic quadriplegic cerebral palsy at the age of one, little did we realize just what we were about to encounter. Lauren is now six and the battle still rages. It’s not just about the actual struggles that we have to encounter with Lauren’s physical, psychological and emotional needs that are associated with cerebral palsy. But it’s also the strain that CP puts upon the whole family unit. It’s the financial strain and stress that it places on the parents to provide even the basic needs for a disabled child. It’s the worry of being able to provide adequate care when your limited resources are just not enough.

Lauren’s kindergarten year has been anything but smooth. It’s now April 2019 and she is just starting to readjust to being in school. Lauren as spent all Fall and Winter recovering from two hip reconstructive surgeries, it’s only now that she’s feeling much better. Her transition back into the classroom is going really well, as long as we take it slow and steady.

One of the more difficult challenges would be the financial burden it places on  us. For example, Lauren requires much needed equipment and aids in order to care for her properly and safely. But we don’t qualify for any Government assistance whatsoever. So anything Lauren requires, we have to find a way to purchase it and that would be through fundraising. And we as her parents should not have to depend on fundraising to meet her needs; Government funding should be available for all disabled children, not just a few. This is why we have advocated so diligently on her behalf because she and others like her deserve every opportunity that every other child avails of.

This is why we have advocated through every means available including; social media, television, radio, internet, and newspaper. This is one of my post that I published recently on social media:

I don’t consider myself a political person, I really didn’t have any reason or motivation to get involved. To be honest, I rarely voted. But I will certainly make my vote count in this election! And it certainly won’t be for the present party. Right now I have lots of reason and motivation to get involved. When our now, six year old little girl got diagnosed with spastic quadriplegic cerebral palsy, little did I know just how involved in politics I would have to be. I have advocated on her behalf, to every Government Department and Level available to me; with absolutely no success. All we needed was some respite care to help us with Lauren who needs 24/7 care, all we got was, ‘you don’t qualify’. Yet here we were two parent on disability, caring for a disabled child; who could be more qualified for assistance? But to this present day we have received no help, no funding, no nothing from a ‘Disabled Government’! We are so desperate for help in caring for Lauren but our present Government as just turned their backs on us but not just us but a six year old little girl who is so deserving of so much more. Shame on our present Government and present MHA who’s last correspondence to us was (and I’m quoting her), ‘Here’s some federal info-‘ Need I say any more! This post stirred up a lot of interest and public awareness of what parents of disabled children really need. Shortly thereafter CBC Here & Now and CBC Radio did amazing stories of our struggle and fight for Government support.

Another great need would be respite care, for which we qualify for none. And sad to say, ‘we are not the only parents that are struggling for the same basic needs’. We are taking care of Lauren 24/7, around the clock care. The toll this as had on us has her parents is both physically and mentally draining to the point where you are surviving, not living. This is no way for anyone to live, both our children deserve so much better but sad to say, ‘both suffer because our Government will not intervene’. If Government is not willing to listen and to make changes to our present system, then these helpless children from all across Newfoundland and Labrador, will be deprived of the proper care that they require and deserve.

Maybe what is needed is for all parents with disabled children, who are not able to financially provide  and care properly for their children due to lack of finances, is to drop our children off at the Premier’s Office and say, ‘Now you take care of them and you decide which ones should ‘fall through the cracks’ (direct quote from Premier Ball). And maybe the MHA could offer him some respite care. But the message needs to get out there, loud and clear, that we are not going anywhere and we will continue to advocate for our children (speaking for all parents in the same situation as we are) until we are heard.

The road that Lauren is travelling, is a road with many twists and turns; you never know what’s around the corner, it’s a road that never ends. Cerebral Palsy is so unpredictable and ever changing, each day brings with it new challenges and new road blocks. But Lauren is a Warrior Princess and will fight for what she needs. She is strong, courageous and brave and will overcome any obstacle that is put in her path.  She may not walk (right now) but she does have wings to fly!

 

 

 

 

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The Seasons Come And Go

Winter as finally passed and Spring is so desperately trying to unfold. With Spring comes that feeling of new life, new beginnings, fresh hope and a warmth that inspires the soul. The cold, chilly winter season as reluctantly become another memory in time. Much as happened; good and bad. But yet we have survived another season; another season of life.

I can’t honestly say that the past several months hasn’t come without it’s tough times. It’s been rough on all of us, to say our life is simple, would be an understatement. Living with mental illness and cerebral palsy would be enough to send any family’s life into a whirlwind. And lots of days that’s what it feels like; you are living in a whirlwind. Where life is spinning out of control and you’re fighting to hold the pieces together. Some days you may feel like you’re winning and other days like you are loosing the fight.

With my mental illness, I must say it’s still an everyday struggle but most days now, I feel it’s a struggle that I am winning. I guess it’s like someone who has diabetes, they still have it but they have it under control. And for me with my depression and anxiety, I feel on most days I have it under control.  But each day still requires a lot of self talk, keeping my thoughts from becoming distorted and unrealistic, trying to keep life as ‘normal’ as possible and live in the moment. Is this easy to do? No, not at all but if I am going to beat this living hell, then this is what I have to do on a daily bases, if I am going to survive; I can never let my guard down. And maybe with this new season of Spring may come new life, new hope and new beginnings for all of us.

Lauren has certainly had her share of pain, hurt and uncertainties. The cold winter months have found her spending most of it in bed, recovering from two major hip surgeries, that can only be described as horrific. No child should have to suffer what this child as endured and will still have to endure in the months to come. Her first hip surgery was performed in May 2018, the second was done September 2018. It’s now April 2019 and it’s only now that I can say that she is bouncing back from her ordeals. She as missed majority of her school year in kindergarten. We are now in the process of gradually introducing her back into the school setting, which as to be done slowly, cautiously and at her own pace, due to her high levels of anxiety. But she is doing fairly well and her school as been so accommodating during this transition period and for that we are so thankful.

Life for us as parents of a disabled child will never be the same again. And I don’t say that in a selfish way but in a realistic way. I know that the only parents that will truly understand what I mean; are parents that are privileged to have a disabled child. Lauren may be six years of age but right now we still have a six year old baby. We do the exact same things for her now as when she was a baby. Except now it’s harder because she as grown to be a big girl, who requires constant lifting. And the 24/7 care doesn’t end and doesn’t get any easier.

I believe that life for all of us at this season of Lauren’s life is a little tougher. Lauren is so aware, so intelligent and so full of questions; questions that we don’t always know how to answer. For instance, yesterday we were going outside and out of nowhere she asked, “Daddy why do I have to be in a wheelchair?” I’m sorry but I wish that no child would ever have to ask that question. She’s realizing now, more then ever, especially since she’s gone back to school; that not all kid’s are in wheelchairs. So she’s wondering and asking, why am I in a wheelchair? It was only recently she asked Lisa, “Mommy, when you were a little girl, were you in a wheelchair?” How can we live without having a broken heart? There will always be moments like these when our hearts are torn from our bodies. And just one more heart wrenching moment, when she asked me while we were just lying in her bed, “Daddy did you see me when I done a cartwheel?” And I lied and said, “Yes my angel and that was the best cartwheel I have ever seen in my life”.

Nature may have four distinct seasons; Fall, Winter, Spring and Summer. All of which will come and go at it’s own designated times. Much like the seasons of life. Right now I am at a different season in my mental health then I was last year at this time. And right now Lauren is at a different season of her cerebral palsy and we have discovered that those seasons are forever evolving and changing. We just have to learn to adjust to each individual season and to learn to find warmth in the coldness, sunshine in the rain, new life amidst the dying dreams. Healing and hope when the season as gone.

 

 

 

 

 

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My Letter To Santa

My Letter To Santa

 

                                                                                                                         Hey Santa,

 

I don’t have a Christmas wish this year.

What I want you can’t pull out of your magical bag.

Your elves can’t make it.

You can’t wrap it in pretty paper and tie it in a bow.

 

What I want this Christmas is not a wish but a prayer.

You see Santa I need a Christmas miracle.

But Santa you would have to say a Christmas prayer.

And when you do could you ask Jesus for a gift that can’t be tied with a bow.

 

You see Santa, my little girl needs Jesus healing touch; not a doll this year, not a stuffed toy, nor an iPad.

I believe Santa if you ask, maybe, just maybe she would get her Christmas miracle.

A gift that will take away all her tears of pain, no more surgeries, no more walkers, standers, wheelchairs.

Please Santa tell Jesus to just let her walk this Christmas. That is my Christmas prayer this year.

 

My gift you see comes in the form of a prayer.

And I believe that Jesus is listening, even to Santa this year.

 

So Jesus, tell Santa we won’t be needing gifts or presents that can be wrapped under our tree.

But this year we’re going to receive our Christmas Miracle.

 

But Jesus, we won’t be greedy and forget all the other boys and girls that are sick, hungry, abused, extorted and even alone this Christmas.

Could you please visit them for me and sit them on your knee and tell them you love them and everything is going to be alright.

 

Maybe Jesus you can tell Santa that when he makes his rounds this Christmas; that he would make their Christmas wishes come true.

Take away their hurt, Jesus, their pain and hunger too,

may this be their best Christmas ever.

 

I’ll leave that up to you Jesus because I still believe; miracles do happen!

Sincerely Yours,

A Loving Father, Harris   

 

 

 

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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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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 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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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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“Miracles”

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

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

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

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

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

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

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

 

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Lauren’s Hope of Walking

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

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