Number Eight: This Is Our Normal

Standard

image

Today marked Olivia’s eighth surgical procedure. This was the eighth time I put on a puffy, blue hair net paired up with an equally unfashionable light, blue Johnny shirt; all necessary for inside the OR. This was the eighth time I carried my little girl into an operating room, surrounded by strange masked faces and numerous medical machines (beeping and making strange noises), where I place her down onto a narrow operating table.

It was the eighth time I watched the fear in Olivia’s eyes as they stick, poke and tape foreign objects to her, all the while listening to her medical team attempt to explain to her the purpose of each. As I hold her hand and tell her, “you’re ok, Mommy’s here” my heart is quietly shattering. In my mind, I tell myself this is necessary, when in reality I hate seeing her go through any of this and am doing everything to not break down and bawl. Then I get in close, once the mask goes over her face, and I sing to her. I watch her little eyes become heavy, falling deeply into a medicated slumber. I kiss her head, say a silent prayer for “please God, protect my baby and give her strength.”

This has become a part of our normal. Doctors appointments, hours upon hours of physiotherapy and occupational therapy, and thousands of dollars spent on equipment needed to assist in muscle development, posture support and mobility. Countless sleepless nights spent trying alleviate pain brought on by muscle spasms and surgical procedures required to lengthen hamstrings, release hip abductors, heal chords and to assist in dietary improvement.

Olivia’s little body has been tattooed with forever reminders of each and every procedure. Each scar she carries, is representative of a battle she has fought. With each procedure she endures, strength is achieved. I call her my warrior for a reason. Cerebral Palsy has provided her with a body broken and riddled with pain and discomfort, but through all of it, Olivia has persevered. She has fought and pushed through each of these battles with a courageous spirit.

Sometimes being strong, means feeling the pain, but not letting it consume you. Sometimes, even no matter how strong you are, the pain breaks you. This is the fine line we walk….every….single…day. The truth is, this may be our normal, but I’ll never get use to it. I’m her Momma and she’s my baby, and our babies (no matter their age), should never have to endure pain; of any kind.

image

Epilepsy Wasn’t A Term In Our Vocabulary

Standard

Six months ago, epilepsy wasn’t a term we used in our vocabulary. Olivia had had one serious seizure two years ago, but nothing since then….or so we thought.

When you have a child with a complex medical condition, sometimes symptoms get overlooked because you think you are witnessing a symptom already associated with a diagnosed condition. Very disheartening as a parent to realize this wasn’t the case.

Olivia’s seizures went undiagnosed for about a year. We began to notice a pattern in her sleeping behaviour; she would awake the same time every night with episodes of vomiting. We originally took this for reflux. Then we began seeing behaviours when Olivia would drift off to sleep. These behaviours often appeared as twitching, arching, repetitive sounds, periods of semi-consciousness, and crying.

After several EEGs, one sleep deprivation and a video EEG, Olivia was officially diagnosed as having Epilepsy; a chronic seizure disorder usually associated with a neurological condition. Olivia already having Cerebral Palsy put her at a higher risk of developing Epilepsy.

So…the last six months have been a bit of a blur to say the least. I’ve joined several Epilepsy forums, trying my best to understand what my daughter is feeling prior, during and after the seizure has passed. Olivia is nonverbal so it is impossible for her to communicate what her body is experiencing, so finding the right medication to control her seizures was essential. I am happy to say we have!

image

Throughout these past few months, I have learned so much; like for instance, seizures suck…BIG TIME! It never gets easier seeing your child’s body twitch, stiffen or move uncontrollably. I honestly hold my breath every time Olivia has a seizure. The dangers they present are a terrifying reality and an important reason as to why awareness and research are so important in the field of Epilepsy.

Epilepsy is now part of our life. Olivia’s seizures are now controlled, but we understand eventhough controlled, she can still have the occasional incident especially when she’s sick. So today, if you see someone wearing a purple ribbon, know it’s in support of Epilepsy Awareness.

An Army Of Butterflies

Standard

The sun couldn’t have shone brighter today as friends, family and school community came together in droves to participate in our local Child Development Centre’s annual race fundraiser. As special as this event was, it was even that much more remarkable seeing a community come together to remember and honor an extraordinary little girl.

image

Each one of our Team AOS shirts was decorated with a purple butterfly over our hearts. This was in honor of a beautiful little redhead with a smile as breathtaking as sunshine that moved an entire community to honor her memory through simple, yet extraordinary random acts of kindness and we called it “Bryleigh’s Butterflies”.

image

Bryleigh holds an incredibly important space in my heart. She and Olivia were bestfriends that shared more in common than most. Both beautiful ginger girls shared big, warm smiles and the ability to gravitate others to them just by being their adorable, sweet selves and both warriors, taking on the daily struggles and challenges Cerebral Palsy brought to them….but you’d never know it because these girls loved to laugh!

image

image

The bond they shared was one spoken beyond words. Witnessing them interact and communicate in their own way was a truly special moment. I know Olivia misses Bryleigh everyday. I see it in her eyes when she enters the classroom they once shared. I also see it when she is surrounded by the friends they once played with together. She misses her in her own way, as we all do. Participating in “Bryleigh’s Butterflies” brings us all a little closer to Bryleigh once again.

So if it so happens that you receive a purple butterfly along with some act of random kindness, you can be sure it was given to you to put a smile upon your face. I once read that a single smile can change the world, well Bryleigh changed all of ours for the better. Think of each purple butterfly as a smile from Bryleigh, a beautiful gift that will forever impact your life.

“If there ever comes a day when we can’t be together, keep me in your heart and I’ll stay there forever”~Winnie the Pooh

image

It’s More Than Just Wearing Green

Standard

Why are awareness days so important? What makes them so special? Why do we put the spotlight on a particular group of people?

I’ll tell you why…

The only way to successfully eliminate ignorance, discrimination and inequality is through education. Awareness days are opportunities to discuss, teach and learn about others who may look, speak, walk, or learn differently from us. As a society, we have been conditioned to take notice of other people’s differences. For individuals like my daughter, having these differences cause her to stand out; sometimes generating whispers, stares, or abrupt spontaneous questions (often asked nervously).

Awareness days like World Cerebral Palsy Awareness or National Cerebral Palsy Awareness Day, allows us to start the conversation, eliminating the so called “elephant in the room”. It’s an opportunity to speak about what CP is and how there are many people who have it, that are living very fulfilling lives, participating in various aspects of society. It gives us the opportunity to speak about various types of equipment you may see someone with CP using, like a wheelchair; and understand that this device assists with the individual’s quality of life.

Awareness days can inspire us to invent or develop better devices and services to assist and improve the life of individuals living with CP. These days encourage others to look beyond the limitations or challenges and see the person.

image

In this day and age of fully integrated classrooms and full inclusion in recreational activities; awareness days are absolutely essential, especially for school age children because they are the future generation. It’s not just about wearing green or whatever color is associated with a specific ribbon of an awareness day, it’s about WHY are we doing this? It’s about promoting equality and understanding one another. Fear is such a natural feeling that can occur when we are faced with something or someone that appears very different from us. Learning about these differences and understanding that we really aren’t that different, helps to strengthen bonds and allow relationships to develop easier. By eliminating the boundaries we create equality.

So the next time you hear about an event promoting World CP Awareness or World Down Syndrome Day or any day set aside to educate, celebrate and promote equality; take a few minutes to stop, listen and learn. At the end of the day, all anyone wants is to be seen for themselves, not judged by what they appear to be.

image

Wonderful Wednesday

Standard

We’ve been weathering through a few storms these last few weeks. Discovering that Olivia has epilepsy, our basement flooding, a serious lack of sleep, disputing a suspension from school notice issued through our public health office stating Olivia is behind on a particular vaccine (which she isn’t), and hitting a few bumps in the road with Olivia’s rehabilitation team; had me rock bottom, flat on my back, burnt out.

The first Wednesday of every month is a glorious day! This is when our special needs parents support group meets. I couldn’t have been more thankful for the arrival of this Wednesday. Being surrounded by others who get what you’re going through evokes a feeling of calm, peace and understanding. Sure not all of us share the exact same experiences, but to an extent we’ve each walked in the footsteps of the same path. It’s this, in its entirety, that makes support group so great.

The problems I had going into the group were not miraculously solved. That’s not what the group is for. What I get from going to our group, is a sense of peace. Talking, connecting and listening to other special needs parents share their experiences, helps me to remember that although this journey can be extremely difficult and challenging, I am not alone. Just the fact that they get it, calms my mind and I can readjust my focus. I feel a rejuvenation and walk away empowered, ready to face the hurdles that lie ahead.

image

There Are Better Words To Use: End The R-Word

Standard

Folks, why oh why is the r-word still spoken in cavalier conversation? I honestly hear it every single day, used to describe behavior, people, and situations. This word is offensive, ugly and carries a great deal of ignorance and insensitivity to the special needs community.

It’s easy to put this word to rest. Simply think before you speak.

I don’t believe you are a person, who would openly insult, offend or hurt people like my daughter; so I have to believe you just need to be enlightened. Each time you use the r-word, you are condoning the use of a word that defines people like my daughter as being less, broken, damaged, and stupid. I am informing you today. PLEASE hear me; STOP using the r-word!

There are an abundance of adjectives in the English language, there is no need to keep using the r-word as one. Today, make the effort, think before you speak and finally put an end to this word in our vocabulary. If not for me, please do it for her.

image

Together We Can Bring Change

Standard

When you are a family to a child with special needs, navigating through the various branches of health and rehabilitation services, sorting through funding grants offered by your province, special education programs offered in schools in your neighborhood, and many other resources that are available in your community; is an extensive learning curve. But what if you were required to do this every two, four or five years? Military families deal with many complex situations that are often challenging, but add the dynamic needs of a special needs child and you have a very unique situation. Often times, families feel very much alone, isolated.

We are a military family who also happen to be a family to a child with special needs. Each year, around this time, many military families are receiving news of postings to different cities or provinces. There are resources put in place to make the move as smooth as possible, but for military families like ours, we move to these regions with a huge unknown; what resources and services are available to our child? What support will our family receive? Families with special needs children require a contact at their new base, a liason; who is knowledgeable about services and can provide information that can guide the family through their new transition.

Recently our base has made this resource available. A special needs liason who can provide information about services and programs available in our area, who actively connects with community partners, organizes a special needs parents support group for military families, assists in the development of recreational programs and is knowledgeable about special education programs offered in the area. I am so overjoyed with the development of this position because so many military families will breathe a little easier. If you are a military family with a special needs child, contact your local military family resource center for information on who your liason might be. If there is not a specified liason for your base, try contacting the social worker connected to your center. They may be able to assist in the same degree, as a liason.

I also had the opportunity recently, to participate in a study that focused on information about services provided to military families upon relocation. It was an independent research study conducted by a university student, studying how to improve the quality of services and information provided to military families of children with special needs. The goal is to develop a type of information booklet, compiled with each province’s list of rehabilitation services, special education programs, community partners, special needs liason (if available), and other helpful resources including the contact information for each individual and to have this booklet available through local hospitals, military family resource centres, community partners and possibly schools. What a great resource this will be!

It is wonderful to see these issues recognized and new programs and resources developing because of it. They never would have happened without the participation of military families who were willing to share their concerns. Thank you to those whose voices helped to implement change and provoke thought into an area that went unrecognized for far too long.

image

Ramblings of a Sleep Deprived Mom

Standard

When you become a parent, your appreciation for sleep changes. You’re no longer that asshole that took for granted the privilege of uninterrupted, hybernationlike zz’s. No, you know better now. Sleep is beautiful. Sleep is crawling into a soft, cozy cacoon of flannel and cotton sheets, surrounded by warmth and utter gloriousness  (if that’s even a word), only to drift into a deep coma of REM where you are completely unaware of the pool of drool forming on your pillow while you bask in the dreamy sanctuary of heavenly slumber.

Ahhhhhh……

I miss sleep.

Who am I kidding, I am deeply mourning the loss of sleep.

I cry, heck…I sob like a toddler whose been refused a treat at the candy store, with the quivering lip that repeatedly asks, “w-w-whhhhyyyyy????”

Buckets of coffee can’t undo the affects of lost sleep. The large grey, zombie like circles that surround my eyes, the endless yawning, drunken stupor and frazzled look of despair are still there. There is only one cure for all of this. Sleep.

To all my fellow sleep deprived, caffeine infused, walking vegetables of the earth; I feel you. Fist to chest, respect.

May the sleep be with you.

Taking A Break Before Having A Breakdown

Standard

Too many times special needs parents forget to take care of themselves. I know because I’m one of you. We are so busy focused on our child’s needs that our own needs come in dead last. We struggle with fatigue, ridiculous amounts of stress, and at times are battling feelings of depression. We become consumed by our child’s needs and feel guilty if we try to put our needs first.

I’m going to tell you something.  It’s OK to be selfish once in a while. In fact it’s necessary. You will be a better support for your child, partner to your spouse and overall better person, if you just give yourself a break. And folks, this isn’t just good advice for special needs parents, it’s good advice for ALL parents.

I understand everyone’s situation is different. Maybe you have family that can help out, but you’ve been too shy to ask or maybe you don’t have a family member or close friend you can ask to come sit with your child, so you can grab a much overdue nap or run a few errands, just to get out of the house for an hour.  But that’s ok. There are many highly trained individuals who specialize in providing respite services. If you don’t know where to start or how to find these people, begin by speaking to your child’s development team. Often times they know of nursing students or therapy students that are well trained and looking to make a few extra bucks. There may even be students doing work placements with them that are trying to break out in this field and are looking to do respite full time. Another great resource is talking to other special needs parents and finding out who they use; maybe their worker would like to pick up a few hours working for you too.

If your budget doesn’t allow for respite services, you can look into funding through your province or local and national organizations that grant this type of funding.

If none of this applies to your situation than look into community groups that offer special needs playgroups where you can talk to other parents sharing the similar experience; maybe you’ll even connnect with one and start a friendship, or special needs support groups where you can at least have a platform to share your feelings. It might not be the complete break you need, but at least you are among those that can understand what you are feeling and can lend an ear.

In the end my point is this….take a break. You owe it to yourself, your child and your family.

image

2016: A Great Year For Change

Standard

Well winter is here and a new year has begun. A great time to evoke change! The change I want to see is in accessibility. 

Oh the joys of winter. Walking with a wheelchair over icy banks and navigating around inconsiderate vehicle owners; who block sidewalks (not even bothering to use their entire driveway), forcing us out onto the roads. Because ya know, it’s so easy maneuvering 70 lbs of steel and kid around the ass end of your bumper.

And those icy banks? Don’t even get me started. I mean, how hard would it be to, I don’t know let’s say, NOT dump that load of snow at the end of the walk way!!?? Why not put it on the grass side of the sidewalk or anywhere else!? I’m not a professional snow plow operator, but isn’t the idea to CLEAR areas, not to obstruct them? Call me crazy, but the service you are providing is called SNOW REMOVAL.

Oh and before any nay sayers start harping about why we don’t take the bus? Let me tell you something, we do. We do on stormy days and days that are not fit for walking. But on beautiful, crisp winter mornings, we like to walk. Because it’s everyone’s right. End of story.

image

Accessibility is difficult to come by. Period.

You would think it to be only common sense to have the day to day luxuries like walking to school or being able use a public washroom, available to all abilities, but in reality it’s not!

Have you ever tried taking your five year old to a public washroom to change their bottom? Most of you probably have never had to do this. I have. This is our reality and do you know what we are faced with? We get to carefully attempt to change our child on a tiny Baby Change Station, located on the wall of an almost too small accessible washroom; not capable of housing a wheelchair plus Momma plus child. Ah and did I mention, my daughter IS NOT a baby! In a  few occasions the change station has not been within a washroom at all, but outside the stall, near sink areas. I don’t know about you, but I’m not fond of showing my hoo-ha to the public; neither should my daughter!

image

Does this look comfortable to you?

Our only other option is to change our daughter on the floor of our van. Where is the dignity in either of these choices?

Accessibility shouldn’t have to be a luxury given to few. It is a right for all! So why is it that society has not fully invested in equality for everyone? Why isn’t it something we all should be striving to achieve? Is it because it doesn’t directly affect you or someone close to you? Maybe you weren’t aware there is a great need?

This is what I want to achieve today and the days coming. I want you all to look around at the environment you live, work, shop, frequently visit, restaurants you eat at; and think of children like my daughter, in a wheelchair, still in diapers;  young adults with severe needs, individuals with walkers, canes, stability issues, elderly relatives. If they walked down your street, worked in your office, shopped at the same bookstore or clothing store, ate at your favorite restaurant; could they do so safely? Comfortably? Be respected and have their dignity preserved? If you said no to at least one of these, change is needed! Change must happen. Because it’s 2016 folks!