Tag: wheelchair

Posted on

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.

Posted on

Lauren’s Adventure to McDonalds (in her wheelchair)

When Lauren was diagnosed with cerebral palsy, little did we know what would be involved. From surgeries, botox injections, seizures, therapy, CP Clinics and the list goes on; it’s a never ending journey, always evolving. And that journey is not always on a smooth, straight road but many are the bumps, turns and potholes. But I would just like to elaborate on one such pothole that we’ve hit, many times and that being accessibility.

If you are not confined or dependent on a wheelchair or the person behind pushing the wheelchair, you probably have no idea what I’m talking about. You so innocently take your accessibility into a building, restaurant, house; all for granted. Many times I have wished I could  take the owner of a business, a public building, etc. on a journey in the day of a life of someone in a wheelchair. Maybe just sit “them” in a wheelchair and say, ” now go and let’s see how far you get. Their view of accessibility would drastically change and maybe look at it in an whole new light. And sometimes that’s what it would take.

I’m going to zone in on one business in particular and come for a ride with us in Lauren’s wheelchair.

It was our first visit to McDonalds in Bay Roberts ( I love freedom of speech) when we moved here two years ago. We pulled into the parking lot and searched for the handicap parking spaces. Oops! not spaces; there was only one and that one was occupied. So I searched again for two regular parking spaces that could accommodate our side entry van. There it was, at the end of the parking lot but at least it would give us space to exit the van using the side entry ramp. Wow, nothing to that (I thought)!

Next we maneuvered our way through the parking lot and hit the curb sidewalk that we crossed, to only be faced with crossing the drive-thru entrance. A little dangerous for someone in a wheelchair or not. Then we got to the front door with no powered push button opener and then the second door, inside a porch smaller then the wheelchair; I was stressed to the max. Once inside I looked around for a wheelchair table, there was one but it was occupied. By this time I was so frustrated that I just wanted to leave but Miss Lauren was bent on getting her “happy” meal. So I obliged her and we sat in an aisle table. Then she wanted to go to the bathroom, I need not say more.

Then it was time to exit the restaurant, where would I start? But in order to get out of there I had to start my trek to get back to the van. Once I so anxiously got to the van; what to my wandering eyes should appear but another vehicle parked a foot from our entrance to the van. This made it impossible for us to access our van. What do we do? Wait, until whoever owned the vehicle to move, so we could pull out the ramp and enter the van. So we waited and waited…..

And that’s the story of our adventure to McDonalds in a wheelchair. And that’s when I became an advocate for accessibility (like I needed something else on my plate). Being an advocate certainly doesn’t win you any popularity contests, but that’s not why I do what I do. I do it to make change for the better, improve our society as an whole and to just make our world a better place to live for us “all”.

My advocacy began by making a phone call to the owner of McDonald’s , who listened to my concerns very attentively. I thought to myself, that was a little too easy. I was to learn later that I was right. He did tell me at that time that renovations were going to be done in the Fall and he would contact me for my input on accessibility.

The Fall came and construction began but no telephone call from the owner. So I thought, if changes were needed for accessibility, they would need to be implemented during construction, not after construction was complete. So I thought I would do the courteous thing and give him a call back to jog his memory on our past telephone conversation. I thought I must be talking to a different person, his professionalism just flew out the window. When it came to wheelchair accessibility he said, ” I will only do the “bare minimum” that is required to be considered accessible”. No regard, no compassion, no thought for those confined to a wheelchair; it was all business.

After that conversation I thought, okay, where do I go from here? I was more determined then ever. I went straight to the Government department responsible for enforcing the accessibility code/requirements. I told the department of my concerns and frustrations and they were totally on board. The next day they had an inspector sent out and several building code issues were enforced pertaining to accessibility. And for that I am, on behalf of my four year old daughter and all those who require proper accessibility, I say thank you. We now have push button door openers. Without advocating; these door openers were not in the plans and would not have been installed.

And to the owner of McDonald’s in Bay Robert’s (and out of courtesy I won’t give your name) but I say, “Shame On You”! I hope you will never have to be confined to a wheelchair or anyone in your family: but if you were, then you just might “get it” and have a heart. By the way, the renovations are really nice! Congratulations!

 

 

Posted on

Rants & CP

To rant, to get heard, to be heard; for your voice to reach the ears of the people who really need to hear what you have to say. How do I do that? The question remains and I don’t know where to start. But I have to start here; I have to start somewhere. Someone has to listen.

Before we had children, I would never have even contemplated or even recognize the issues that I am about to address. But since we were blessed with two beautiful children, I now have reason and purpose to make their world a better place to live. And thus I begin with my frustrated and feeling of hopeless concerns. But I will voice them none the less. Whether they fall on deaf ears or not; I will have done my part.

As parents of a special needs child we are exhausted, not complaining but stating a fact. It’s taken a tole on us in every area of our lives; financially, mentally, emotionally, our marriage, our social life and family life. I am on long term disability(CPP) due to my illness and Lisa as had to take a leave of absence from her job due to high stress. We have only a limited amount of strength, endurance, and stability before we crush under the immense levels of stress. No one knows what’s involved unless they walk in our shoes. We need supports but they are very few. Any government programs for support; we have been denied. So what do we do? I have no idea! It’s so easy for well-wishers, and I thank them, to offer their prayers but sometimes faith without works is dead. I am so grateful for prayers but there still remains the reality of “what is”. Lauren requires 24/7 assistance. That means one of us as to be with her around the clock. Can our marriage survive this? I hope so! There is basically zero time for us as a couple. And that is so sad because we are falling apart. Lauren does attend a Daycare for three “part-time” days a week. That gives us a little break, but financially we can’t do more. We are human and doing everything possible to make our lives as “normal” as possible, but sometimes we fall beneath the load we carry. This is not a pity party but reality of what is.

For those of you who have not experienced life with a child who requires assistance to access a public building; you probably will never understand to the fullest extent of our frustration with accessibility. Our province as implemented an accessibility requirement for all public buildings with some exemptions (www.servicenl.gov.nl.ca). It as been my experience since our little girl who is four on March 31,2017; that these requirements are far from enforced. The frustration that we have entailed on trying to enter a building using a wheelchair is beyond my belief. It should be common courtesy for a business owner or any public building to provide wheelchair accessibility. And thus make us all feel like we belong, accepted, and welcomed. Let’s all do our part to make this world a better and more accessible place to live, with no exemptions. I have voiced my concerns to several business owners with minimal feedback. It’s not my intention to ruffle feathers but to open hearts.

This next issue is not even into existence yet and I’m frustrated/concerned already. Integration into the classroom; equality and equal opportunity for all students? For example, if a disabled child is qualified for a full time assistant, does that mean she will get that full time assistant? Definitely not! If Lauren qualifies for a full time assistant it’s her right to have one, but that’s not how the system works. I hope you can prove me wrong for her sake. But all too often a child coming into the classroom in a wheelchair is looked upon as having a physical disability and thus must be cognitively delayed as well and are often treated that way. It’s already been pointed out to us that Lauren as to get more acquainted to being in her wheelchair because that’s where she’s going to be for school. Well that is not where Lauren is going to spend her day; in her wheelchair. Right now Lauren mainly uses her “chair” for transportation purposes. If we are at the table, she is at the table in her highchair with us as a family. If we are on the floor; Lauren is on the floor with us. She also has a charries chair for when she’s at her play table. There is a variety of options that she can avail of rather than confined to a wheelchair. We are so thankful for her Daycare, she is treated no different then any of the other kids and is much included into whatever activities the other children are involved in. And this is the way it’s going to be in school, if this is not the case, then Daddy will be going to school with her to make sure she gets every opportunity that she deserves. And maybe the media can come to school with Daddy; that would be great! All too often a child requiring a student assistant doesn’t always get the full attention of that assistant. Much too often the student assistant time is spread out over several students. What happens if one of those students need to go to the washroom and there is no assistant available? They wait and sometimes run out of times. When other kids are having playtime on the floor, that child is left in their wheelchair. Lauren will not be left in her chair; she is to be treated like the rest of the children and will play on the floor. As with most activities that she can do, she will do! Lauren may have a physical disabilitybut she does not have a cognitive disability and will be treated as so.

The Janeway as a children’s hospital. First of all, what we see through the media does not always paint a true picture. Much too often the media only show you what they want you to see.Before we had children, my view of the Janeway was only inspired by what the media portrayed and that was glamorous. Now that I have an inside scoop, things look so much different. Compared to other children’s hospitals we fail to meet the mark, we fall short of what our children deserve. The environment itself certainly not all that child friendly. A sticker here and a mural there; ever so often. If you just walk through the hospital it won’t take long to view the somewhat dilapidated structure. We fail to meet up to the high standards that other hospitals have taken. One small area, just as an example, I have noticed is the recreation room. The toys and contents are from Noah’s Ark: a visit to Toys R’Us would be a welcomed sight. This to me would seem like such a basic need and affordable considering all the fundraising, especially through the Janeway Telethon. It would be interesting to see where the money is going. Lauren is now in need of a walker, you would think the Janeway would have such needed equipment in abundance. Sadly to say, no that is not the case. We have run into this problem time and time again. We were told the reason is there is limited space to store such needed equipment; poor planning on someones part! Who suffers? Our children. Our thanks go out to the outstanding doctors, specialist, etc. for their continued support. But to be considered, nothing but the best for our children; we have not yet reached our goal.

Lauren requires much needed equipment; none of which is available to us through government funding, nor through the Janeway Hospital. All her needs can only be met through fundraising. To me this does nothing for your self esteem, self worth, or self confidence. But you do what you have to for your children. We have applied to several government support programs; only to be denied. And therefore the only way to purchase equipment is through fundraising, family and friends support. And for that we will be forever grateful.

So you see, nothing comes easy. Every challenge is a battle. If you don’t fight for your rights; you have none. There are days when you get so tired of fighting but fight you must! And as long has there is breath in this body; I will fight for Lauren and Logan. I am not speaking negatively to any of these issues that concern me but I speak realistically to the way things are. I wish we never had to fight any battles, we are already exhausted from everyday challenges of raising a special child. I know the only people that will fully “get” what I’m saying are parents that share our common bond. If you are reading this and don’t get it; then be thankful for the life you have and may you never have to “walk” in Lauren’s shoes.