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.
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.
Anger isn’t an emotion that I like to feel. But I’m human and today I’m angry. I’m not angry at God, He is the one and only person that I know I can pour my heart out to and He understands. So no, I’m not angry at God; He’s my Rock, my burden bearer, my healer, my friend.
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.
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.
