Our Ronald MacDonald House Story~

 
 In 1995, I had a car accident that left our 15 month old son paralyzed from the neck down. He was in grave condition for 72 hours, and if he were to have survived this tragedy he would be left a quadriplegic with only movement in his eyes.
We were in the middle of a catastrophic life event, and we were just young parents. Both of us on the verge of starting out in our chosen careers, seeking our own family values and finding our way as new parents.
That day however, our lives changed forever. This post is not about that, this post is dedicated to the support, encouragement and shelter the Ronald MacDonald House provided us initially and then he many years that followed.
These pictures were taken back when Kailey was just one years old (she is 22 today) and Braden (25 yrs old) would have been three. This would have been about 2 years post accident. We were asked to pose for some pictures at the Ronald McDonald House, they were using them in some of the bedrooms as framed pictures. They had chosen to photograph some of the early families that stayed at the Ronald MacDonald House back when it was fairly new to Hamilton.
You can see in the top picture we were in the dining room, Paul and I as well as my parents had spent many hours in that dining room. We have always had Sunday family dinners and thankfully for the most part during our first 4 month stay we continued that tradition. My Uncle Wayne was always wonderful with that, he would come up to the hospital with meals cooked for us…he always made his delicious spagetti. It really was a treat for our family. We had a good meal, time together and managed to continue on with a regular thing in our lives. The bottom left we were in one of the bedroom’s, I remember being so thankful for this place. It was a place were we could retreat, have some quiet time. I had a warm, comfortable bed, a shower and place to rest my weary head and hope to sleep for even a few hours without the worries of the world on my mind. We didn’t spend much time in there, but it was the best place we could have ever been. It just provided a sense of home. It was away from the hospital, away from the bells and whistles…but still close enough to Braden. The bottom right, was in the games room. They had a pool table, ping pong table, tv’s, video games and Foose Ball table. Paul and my dad use to have tournaments all the time, it was so great for them to be able to blow off some stream and stress and have some fun. They managed to still bond together and when some people came to visit we could sign them into the Ronald McDonald house and bring them to the games room to have some fun. 
In all honesty, the Ronald McDonald House was a life saver. I don’t know what Paul and I would have done without this place. Every night we would tuck Braden into bed…usually we’d get out by 11:30pm..on a good night. We’d go for a drive around Hamilton, just to settle down and unwind..we’d talk, this was usually when we would discuss our new life, try to understand and comprehend all the new changes. There was a restaurant down the road from MacMaster Hospital and some nights we’d head down there and share some wings..they were the best wings ever. I remember sitting in that restaurant, watching other people in there laughing and joking, smiling, snuggling and talking about their jobs, their kids..their lives. It was painful, I hated it. I hated that they were so happy…and we were not. I envied them, I was so jealous that they could laugh, and enjoy the time they were having. NOT us, we were sad.
I remember Paul would try so hard to keep things positive. He worked so hard to get me to smile, even though I was unbelievable sad sitting in that restaurant booth, realizing that not one person knew our son was sleeping still in a hospital bed on life support…those moments were some of the hardest. I was 23 years old, we didn’t deserve this much sadness.

It was not easy leaving Braden during this time. We never left him at night if he had had a bad day. We only left his bedside when we knew he was fine and sleeping well. Although leaving him was the hardest thing we did, everyone in our life was telling us to leave and spend time with one another. I do believe to this day, that those nights we had alone, to ourselves help save our marriage. We managed during the hardest times in our life to stay connected.

Some nights Paul and I would drive to the highest peak of the Hamilton mountain just so I could get out of the car, stand tall and pray for strength. It would be as late as 1am. I would stand there…car pulled over to the side of the road, Paul sitting on the front of this car and I would walk to the edge of the mountain, look to the stars and wonder…”Is he there?” “Is God listening to me?”…I am as high up as possible, can you hear my prayers. 
We’d get back in the car, and sometimes I would scream, cry…beg for a miracle. Then i’d tire..which I am sure was Paul’s favorite time of the day…and we’d head back to the Ronald McDonald House and off to bed we would go. Thankfully we had that bed…cause as years followed and Braden got older, we didn’t leave him often and poor Paul was stuck with night shift. Many years spent in a chair at the side of his hospital bed while Braden fought once again for his life. 
When these pictures were taken, Braden was healthy..it was a good visit. I believe we only had Kailey stay at the house with us one time and maybe only for a week. Sometimes during long hospital stays I would miss her trememdously. I wanted her to be with us, it wasn’t really a place for her. So we didn’t keep her there long…she always went with Nana and Papa. 
We were very fortunate to have that room, it was comforting to know that others that were staying in the house with us were going through the same kind of thing. I will never forget that place, I can say it really was a foundation for us, and escape…a place to lay, a place to pray~
Until tomorrow my friends, good night and god bless~

Easter 2019~

I know this is late, and I m so sorry that I’ve been a ghost. Life has been so very busy and I just haven’t gotten around to connecting. How was your Easter? We had a lovely one. The Martz family had their dinner on Good Friday, unfortunately i was not well. But thankfully I had prepared my portion of the meal before I felt sick. This meal it was my turn to make devilled eggs, and cooked ham. Easy! I wanted to try something a bit different with the devilled eggs, so i dyed them once they were cooked. I made some pretty pastel eggs. According to Paul they were a big hit, so that made me happy.

On Sunday we had our Easter dinner with my family. It’s a small group but we always have a great time. Lots of laughs, conversations, food, treats and love. Each year I try to come up with a new table setting idea, and this year I managed this one.

Cute little bunny bums digging in our flower pots. Each one had a name tag so we knew where to sit around the table. I always have so much fun with table setting.

For dessert this year I made a carrot cake. It was a recipe from a neighbour who shared it many years ago. It’s actually my favourite carrot cake recipe, its easy to make but tastes soooo good!

I want to share with you this recipe, it really is worth trying~

1 1/4 cups of oil

2 cups of white sugar

4 eggs well beaten

2 cups of flour

1/2 tsp salt

2 tsp baking Soda

3 tsp cinnamon

3 cups of grated carrots

Mix oil and sugar together, add beaten eggs. Add flour, salt, baking Soda and cinnamon. Blend in carrots. Bake at 350 degrees in greased pan for 30 mins. Until done.

Cream Cheese Icing~

8 oz cream cheese

4 tblsp of butter

2 tsp vanilla

2 1/2 cups of icing sugar

Mix together with electric mixer till smooth.

I hope you give this recipe a chance. I know you’ll love it!

I hope you all had a lovely Easter, we had a wonderful one! Until next time my lovelies good night and god bless~

The next time you want to take me away from my job, feel free to fill in where needed~

Living with a C2 Spinal Cord Injury. Lately I just feel the need to share what life is like with those who are living with or who may be caring for someone with a Cervical Spinal Cord Injury. 
When my accident first occurred 20 years ago and Braden was injured, I remember a minister coming up to visit Paul, Braden & I. The minister who married Paul and I actually became a wonderful support to us and would come to the hospital just to pray with us. I need that, at times that was all I needed. Anyways I can recall during one visit him saying too me, “Well you’re gonna have to care for him regardless for the next 5 years, its just going to be in a different way now”. He nailed it, although it was only a statement probably one he had planned to say to me. It really changed the way  I looked at becoming a caregiver to a C2 Quadriplegic child. 
I was mommy first, and love always prevailed over any god given situation that may have landed on our laps. Whether it be pneumonia, lung collapse or even just a common cold. Something that would have required a simple cough syrup or decongestor in a healthy child would continue on into full blown ICU visit. Complete with life support, IV antibiotics and chest physiotherapy with postural drainage and suction. 
I was always a mommy, endless snuggles, kisses and hugs but when treatment was needed the therapist came out. 
Parenting a child with C2 Spinal Cord Injury was certainly challenging but like that minister said, I would be parenting him regardless. Even though we were given extra duties during his childhood being a mommy was always first.

Let me tell you how things have changed being a caregiver to an adult (child) with a C2 Spinal Cord Injury.
Most days I’m a caregiver first, and a mom second. (In my heart, I’m always mom)

When he became an adult so much changed. It wasn’t about fighting pneumonia any more, or just focusing on physiotherapy it became about many other things. 
Much more scarier things.

Let’s take a look at the things those with Spinal Cord Injuries need to be aware of…

Autonomic dysreflexia. This scares me too death, potentially life-threatening medical emergency that affects people with spinal cord injuries at the T6 level or higher. For most people, AD can be easily treated as well as prevented. The key is knowing your baseline blood pressure, triggers and symptoms.
Autonomic dysreflexia requires quick and correct action. AD can lead to stroke. Because many health professionals are not familiar with this condition, it is important for people who are at risk for AD, including the people close to them, to know all about it. It is important for at-risk people to know their baseline blood pressure values and to be able to communicate to healthcare providers how to identify potential causes as well as manage an AD emergency. 
Unfortunately this condition can come on very quickly, so consistent supervision is necessary.

Some of the signs of AD include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea and a slow pulse (slower than 60 beats per minute). Symptoms vary by individual; learn yours.

Considering the severity of this condition may I stress very loudly this is one reason why I am available to Braden at all times. 
When you have to live like this or with someone who may be threatened by this condition then maybe you won’t be so quick to judge where my time is placed.

Here’s how an unaffected bladder works: 
Urine, the excess water and salts that are extracted from the bloodstream by the kidneys, is piped down thin tubes called ureters, which normally allow urine to flow only in one direction. The ureters connect to the bladder, which is basically a storage bag that does not like pressure. When the bag is full, pressure rises and nerves send a message via the spinal cord to the brain. When one is ready to empty the bladder, the brain sends a message back down the spinal cord to the bladder, telling the detrusor muscle (the bladder wall) to squeeze and the sphincter muscle (a valve around the top of the urethra) to relax and open. Urine then passes down the urethra to exit the body. 
It is a rather elegant process of muscle coordination just to go pee.
After paralysis, however, the body’s normal system of control goes haywire; messages can no longer pass between the bladder muscles and the brain. This leads to high bladder pressures, incontinence, incomplete emptying, and reflux — along with recurrent bladder infections, stones, hydronephrosis (kidney distention), 
Most people with a Spinal Cord Injury use indwelling catheters which allows the person to empty their bladder. However with Braden having an incomplete spinal cord injury at a C2 level, he does have feeling when needed to go to the bathroom. He does however have some residual effects leaving him with some urinary problems. 
Due to his lack of physical ability to toilet himself, he does use outer catheters that are not invasive. This catheter is connected to a 900ml leg back. Yes this makes life easier for us, it is still very important to stay available to Braden at all times due to needing to empty is leg bag. You see, if he doesn’t get the leg bagged drained when full, then he can get himself into some serious medical problems one being Autonomic Dysreflexia. If the urinary bag is full and he is needing to empty his bladder again, where is the urine going to go? He will get backed up and the pressures from not being able to empty his bladder will cause severe pain and discomfort. 
Again, for this reason my job is too remain close and available to him at all times. Until we have fulltime assistance for him, this will remain my job. IF by chance you want time with me, by all means find someone to cover my job. Then please pay them according to the pay scale of PSW’s or RPN’s. Thank you for your help!~

Bowel accidents happen. 
Those living with Spinal Cord Injuries sadly have bowel problems that can effect their whole day.
The best way to prevent them is to follow a schedule, to teach the bowel when to have a movement. Most people perform their bowel program at a time of day that fits with their lifestyle. The program usually begins with insertion of either a suppository or a mini-enema, followed by a waiting period of approximately 15–20 minutes to allow the stimulant to work. After the waiting period, digital stimulation is performed every 10–15 minutes until the rectum is empty. Those with a flaccid bowel frequently start their programs with digital stimulation or manual removal. Bowel programs typically require 30–60 minutes to complete. Preferably, a bowel program can be done on the commode. Two hours of sitting tolerance is usually sufficient. 
But those at high risk for skin breakdown need to weigh the value of bowel care in a seated position, versus a side-lying position in bed.
Constipation is a problem for many people with neuromuscular-related paralysis. Anything that changes the speed with which foods move through the large intestine interferes with the absorption of water and causes problems. 
For almost 20 years we were fortunate that Braden had the ability to feel when needing to have a bowel movement. However over the course of those 20 years consistent constipation took a toll on Braden and he did end up with some very serious health problems.
When we were dealing with bathroom routines, it was something that would take up too two days for him. We lived some VERY challenging years, where bowel movements became the biggest stressor in our family life. Braden actually almost lost his life eventually from poor bowel conditions. We in Cambridge DO NOT have the proper medical professionals to deal with a person who has a C2 Spinal Cord Injury. This left him vulnerable to the system and Paul and I lost and confused.
We had a very scary moment in life a few years back, Braden did almost die. He came through surgery with a colostomy. Initially they were going to reverse it, once he healed from the surgery and all the damage done by years of constipation. It didn’t take long to realize the how much easier life was about to get with this new appliance added to Braden’s body. It was a blessing in disguise. 

Deep Vein Thrombosis
People with spinal cord injury (SCI) are at particular risk for deep vein thrombosis (DVT) during their acute hospital course. Deep vein thrombosis is a blood clot that forms in a vein deep in the body, most often in the lower leg or thigh. This can result in a life- threatening danger if the clot breaks loose from the leg vein and finds its way to the lung, causing a pulmonary embolism. 
Someone who may be sitting all day as well has an increased chance of DVT. Its important for those living with SCI to have continued therapies to decrease that risk. Many times throughout the day range of motion should be done to help increase blood flow, circulation, prevention of pressure ulcers and to relieve muscle tightness or spasticity. 
This is my job and I do need to be available to him when he feels sore or tight. Range of motion is done periodically throughout the day. He has always had that done, even during the school years. I had someone hired to attend school with him so he could have continued therapy throughout the day. 
Again this today is my job, and very much a part of my daily duties. SO if you are wanting my time away from my job please feel free to send someone in who can fill that job requirement and don’t forget a private kinesiology therapist charges anywhere between 35-50.00/hr. If you don’t mind paying for that too, again Thanks~

Depression is common among people who are paralyzed, but it’s not normal — becoming discouraged, grief-stricken or sad is normal, but depression represents a condition that is a health problem unto itself. Most forms of depression, however, can be treated.
Depression also affects health and wellness: People with a disability who are depressed may not look after themselves properly.  They may not drink enough water, take care of their skin, manage their diet. It affects one’s social world sometimes friends and families are tuned out.
Thoughts of suicide often occur when things look most hopeless. In spinal cord injury, risk is highest in the first five years after the injury.

Many factors contribute to depression. These may include the effects of disability — pain, fatigue, changes in body image, shame, and loss of independence. 

So again the next time you want to pull me from my day please make sure its not on a bad day. Just because we choose to show our happy selves to the world doesn’t mean it comes easy. If I am away from my job on a down day, how am I being available and helpful to my loved one? 
Remember that please!
You will also never be given a reason or rhyme as too why I cannot leave my place of work, “why” you may ask?…because its none of you business. I have protected his/our privacy for 20 years doing the best I can to give him his right to peace. If there is something you need to know then we will tell you, if not don’t question anyone living this life. Just trust there is always a good enough reason.

Exercise 
Once again this is the most important part of anyone living with a SCI daily/weekly routine. There’s this thing we do everyday and I believe most people living with spinal cord injuries follow the same routine. Exercise and physiotherapy has always been and always will be as a mom my most important activity for Braden. Daily…if I had my choice I would have him working each day for at least an hour on physical rehab. When he was young it was a lot easier, it was just part of his daily routine and he didn’t know anything different. When he became an adult his views on therapy changed, I will never stop pushing him to do more. 

Every morning we do range of motion (stretching his limps to loosen the muscles), and if through the day he has any kind of pain we again go to the mattresses and do some stretches. Its important, to me the most important. 

There are SO many elements to caring for someone who has a spinal cord injury. You need to remember they have an injury. When someone is born with a physical disability their body is already formed to suit the needs of their challenges. NOT that it makes It any easier, and it certainly doesn’t mean their needs are different. I am not taking away from anyone who has/is suffering from a physical disability. All I am saying is that when a person has a C2 Spinal Injury, its a life long goal to rehabilitate as much as you can. Especially with a level as high as a Cervical 2, that kind of injury is catastrophic. It effects your whole body, and every system in it.

Eating well is even more essential for persons who are paralyzed. Because of changes that occur to the body after trauma or disease, it’s more important than ever to understand the role nutrition plays in maintaining health.
After a spinal cord injury, most people lose some weight. The injury puts stress on the body as it uses its energy and nutrients to repair itself.
 Stress ramps up the metabolic rate; the body burns calories faster. Moreover, many newly injured people are not able to eat a regular diet. As muscles atrophy, the weight loss continues — for about a month. Later, the problem isn’t too few pounds, it’s too many. People living with SCI are more prone to inactivity, and thus don’t burn calories. That’s the pathway to obesity.
My experience with nutrition is a bit different as Braden was only a baby at the time of his injury. He was put on a high caloric diet once his trach was removed. We left the hospital with strict guidelines to “fatten” him up any way we could. We remember being in ICU with Braden, and he wasn’t taking in enough calories. This was actually one of the most difficult parts of our journey. Once he was injured, with is injury being so high he lost his will to thrive.
You can not force feed anyone, not alone a 2 year old who is fighting for Autonomy from his mommy. Fighting to be independent yet not able to do anything on his own, we had geared up for a small war every single time we sat down to eat a meal. 
I laugh when I hear parents talking about their children’s diets, how they are not letting their kids eat fast food, things like MacDonalds. Let me tell you when your child is trying to survive lying in an ICU hospital room and they refuse to eat the hospital food. It’s amazing how quickly you’ll run to grab a cheeseburger happy meal inorder for you medically fragile child to reach his calorie count for the day. 
Still today one of my biggest parenting/caregiving challenges is making sure he continues to hit his calorie intake. He is grown up enough to worry about this himself, and he does take nutrition very seriously. He is actually really good at watching his weight and trying new things to help with his calories. But he still doesn’t have the will to thrive. SO that can be difficult.

Chronic Pain
Pain is a signal triggered in the nervous system to alert us to possible injury. Acute pain, the result of sudden trauma, has a purpose. This kind of pain can usually be diagnosed and treated so the discomfort is managed and confined to a given period of time. Chronic pain, though, is much more confounding. It is the kind of alarm that doesn’t go away and is resistant to most medical treatments. 
Pain is a complicated process that involves an intricate interplay between a number of important chemicals found naturally in the brain and spinal cord. These chemicals, called neurotransmitters, transmit nerve impulses from one cell to another.
There is a critical lack of the essential inhibitory neurotransmitters in the injured spinal cord. This may “disinhibit” spinal neurons that are responsible for pain sensations, causing them to fire more than normal. This disinhibition is believed to be the root of spasticity, too. 
Following injury, the nervous system undergoes a tremendous reorganization. The dramatic changes that occur with injury and persistent pain underscore that chronic pain should be considered a disease of the nervous system, not just prolonged acute pain or a symptom of an injury. 
Repositioning and sometimes cold/heat therapy treatment is needed throughout the day for pain. So there again, really…if I need to explain how leaving during the day could effect his day and his health or even comfort than you’re not that bright~

Respiratory

As we breathe, air is brought into the lungs and into close contact with tiny blood vessels that absorb oxygen and transport it to all parts of the body. At the same time, the blood releases carbon dioxide, which is carried out of the lungs with exhaled air.
Lungs themselves are not affected by paralysis, but the muscles of the chest, abdomen and diaphragm can be. As the various breathing muscles contract, they allow the lungs to expand, which changes the pressure inside the chest so that air rushes into the lungs.
This has by far been the biggest struggle in our lives and in his recovery. His lung health has been the most work, the largest triumphs and the hardest thing to over come. His lung care has taken the most amount of our time, and still continues to dictate pretty much the kind of day he is going to have. We take his lung health the most serious, and is always forever on the forefront of life. Braden does have paralyzed diaphragm that is probably his biggest disability. If he could breath better I know his recovery would have been even better. 
This area of life has taken up most of our time, and it continues to add stress, fear and uncertainty to our life.
I recommend you do not come at me when we are having a bad breathing day, I dare you too. You will see a side of me that you never knew ever existed, and I can say with complete confidence no one has had to witness that. Maybe my immediate family has, but not one friend or outside family has had to defend themselves from the lash they’d get. SO again, the next time you want to take me from my job, you better have a registered Respiratory Therapist on stand by. Cause you sure as shit are not qualified or even capable to take on that responsibility. 

Sepsis is a life threatening condition that arises when the body’s response to an infection injures its own tissues and organs. Sepsis leads to shock, multiple organ failure and death — especially if not recognized early and treated promptly. In individuals with paralysis/spinal cord injury, an infection might begin as a urinary tract (bladder) infection, pneumonia, or as a wound, pressure ulcer or other infection. If the infection is not controlled locally, it can spread throughout the body. Sepsis is then diagnosed. Septic shock is severe sepsis with a drop in blood pressure leading to organ failure. Both sepsis and septic shock are life threatening. Sometimes sepsis is called blood poisoning or systemic inflammatory response syndrome (SIRS)
Lets go back to you taking me from my day, do you have any idea how many times this past 20 years we have been threatened with a pressure ulcer that could potentially fatal. NO you don’t you want to know why? Because its none of your business, we don’t need to share every single battle or illness he has fought. We have been very careful to respect his privacy, but with that said for one minute don’t you think something like this doesn’t have a profound effect on our lives.

Skin Care

People with paralysis are at high risk of developing skin problems. Limited mobilitycoupled with impaired sensation can lead to pressure sores or ulcers, which can be a devastating complication.
The skin, the largest organ system in the body, is tough and pliable. 
It protects the underlying cells against air, water, foreign substances and bacteria. It is sensitive to injury and has remarkable self-repair capabilities. But skin just can’t take prolonged pressure. Unrelieved pressure on the skin squeezes tiny blood vessels, which supply the skin with nutrients and oxygen. What’s your thoughts on that? You think its a great idea to be away from my job hours on end, especially when he is sitting in a position that’s causing him pain and discomfort?
Once again its most  important to be available all hours of the day. When someone has a C2 Spinal Cord Injury anything can pose a problem. They are not capable in most situations to correct the situation they are in. REMEMBER??? Paralyzed from the neck down???

Why does it seem that some people think just because I am home during the day with Braden that I am available to come and go as I please? I decided to share this post with you because my feathers have been ruffled and I am just not sure what more I can say to make it completely clear. I am NOT available to leave as easily as some of you are. Making plans for me during the day is NOT easy, having to cancel due to any of those above issues is quite common. So unless you plan on having someone who is qualified to come into my home and take over my job, then don’t even think to put any expectation on me. 
I am not sure why people don’t understand that my day job is an attendant care. I am being paid to be available to ALL his needs. There is NO difference between me doing this job or if we were to bring in a private attendant care. TO them it would be a full time job that they can not leave because they need too. To them it would be considered a full time job and everyone around them would respect that. Just because I don’t need to leave my home to do THAT job, doesn’t mean its any less of a position that needs to be filled.
Not only is there care demands, lets not forget he has a life that he lives too. Complete with his own jobs, volunteer hours, medical appts., friends, social life, therapy appt. the list goes on and on. Then there is the house duties, laundry, cooking, cleaning…helping with absolutely anything that requires a two handed task. 
Now I don’t want to come off sounding like he isn’t capable of independence. He is one of the best self-directed care people you’ll ever meet. He will someday be completely independent from me. Its a choice that I am still doing this job, and when you think its ok to pull me from it I have to fill that void with an outside employee. I then have to pay that person out of my cheque. MY money….how is that fair? Do you employ someone outside of your job to come in and work for you, then take the money out of your very  own cheque to pay them? Let’s not forget leading up to them working for you…there has to be a training session. That costs too…
We have 4 years until I plan on retiring from this job. We are doing our very best to make it work for all of us. 
The reason I say I am more of a caregiver today while working with Braden is because he is an adult. I have to respect his choices. I may not agree or like some of his demands or choices with his care or life, but as a caregiver I need to listen and offer advice when asked. If I throw my mom hat on during some of his care routines, and try to trump him as a mom….he kicks my ass out that door pretty friggin quickly. I have learned that if it wasn’t me in there getting him up in the mornings and being available to his daily needs, it would be someone else. If that person were to speak out against him or his ideas in a negative way…they’d lose their job. 
It is one of the hardest things for a mother to do, and to be honest I am looking forward to the day I can be just mom. When I am not working in such close proximity of him and we can have a mother/son relationship. 
This post my friends is not to be taken in ignorant way, I mean no harm to my family and friends. I just know that many of you do not understand what my life entitles so I wanted to share a glimpse. I am open to discussing anything you may take away from this, I would be more than happy to answer any questions or concerns you may have~
To my family thank you for all you have done over the years to help Paul and I in our times of need. To my friends, thank you for the things you’ve done and shared in on our journey. 
Until tomorrow my lovelies good night and god bless~ xo

People with paralysis are at high risk of developing skin problems. Limited mobilitycoupled with impaired sensation can lead to pressure sores or ulcers, which can be a devastating complication.
The skin, the largest organ system in the body, is tough and pliable. 
It protects the underlying cells against air, water, foreign substances and bacteria. It is sensitive to injury and has remarkable self-repair capabilities. But skin just can’t take prolonged pressure. Unrelieved pressure on the skin squeezes tiny blood vessels, which supply the skin with nutrients and oxygen. What’s your thoughts on that? You think its a great idea to be away from my job hours on end, especially when he is sitting in a position that’s causing him pain and discomfort?
Once again its most  important to be available all hours of the day. When someone has a C2 Spinal Cord Injury anything can pose a problem. They are not capable in most situations to correct the situation they are in. REMEMBER??? Paralyzed from the neck down???

Why does it seem that some people think just because I am home during the day with Braden that I am available to come and go as I please? I decided to share this post with you because my feathers have been ruffled and I am just not sure what more I can say to make it completely clear. I am NOT available to leave as easily as some of you are. Making plans for me during the day is NOT easy, having to cancel due to any of those above issues is quite common. So unless you plan on having someone who is qualified to come into my home and take over my job, then don’t even think to put any expectation on me. 
I am not sure why people don’t understand that my day job is an attendant care. I am being paid to be available to ALL his needs. There is NO difference between me doing this job or if we were to bring in a private attendant care. TO them it would be a full time job that they can not leave because they need too. To them it would be considered a full time job and everyone around them would respect that. Just because I don’t need to leave my home to do THAT job, doesn’t mean its any less of a position that needs to be filled.
Not only is there care demands, lets not forget he has a life that he lives too. Complete with his own jobs, volunteer hours, medical appts., friends, social life, therapy appt. the list goes on and on. Then there is the house duties, laundry, cooking, cleaning…helping with absolutely anything that requires a two handed task. 
Now I don’t want to come off sounding like he isn’t capable of independence. He is one of the best self-directed care people you’ll ever meet. He will someday be completely independent from me. Its a choice that I am still doing this job, and when you think its ok to pull me from it I have to fill that void with an outside employee. I then have to pay that person out of my cheque. MY money….how is that fair? Do you employ someone outside of your job to come in and work for you, then take the money out of your very  own cheque to pay them? Let’s not forget leading up to them working for you…there has to be a training session. That costs too…
We have 4 years until I plan on retiring from this job. We are doing our very best to make it work for all of us. 
The reason I say I am more of a caregiver today while working with Braden is because he is an adult. I have to respect his choices. I may not agree or like some of his demands or choices with his care or life, but as a caregiver I need to listen and offer advice when asked. If I throw my mom hat on during some of his care routines, and try to trump him as a mom….he kicks my ass out that door pretty friggin quickly. I have learned that if it wasn’t me in there getting him up in the mornings and being available to his daily needs, it would be someone else. If that person were to speak out against him or his ideas in a negative way…they’d lose their job. 
It is one of the hardest things for a mother to do, and to be honest I am looking forward to the day I can be just mom. When I am not working in such close proximity of him and we can have a mother/son relationship. 
This post my friends is not to be taken in ignorant way, I mean no harm to my family and friends. I just know that many of you do not understand what my life entitles so I wanted to share a glimpse. I am open to discussing anything you may take away from this, I would be more than happy to answer any questions or concerns you may have~
To my family thank you for all you have done over the years to help Paul and I in our times of need. To my friends, thank you for the things you’ve done and shared in on our journey. 
Until tomorrow my lovelies good night and god bless~ xo

100 Things I want to Teach My Daughter…#98 Life is Not a Race

#98. Life Is Not A Race 

My dear girl…PLEASE always remember this, it has taken me a long time to get my mind around this one~
Never compare yourself to where others are around you. Your plan is different from everyone else. It has been through experiences with your brother that I have come to calm down with “keeping up” with others. I suppose the best test for me related to you was to agree to you not heading off to University this coming September. It was very difficult for me to come to terms with initially as I felt it was more important for you to go straight into University right out of highschool
Realistically I know, you WILL go to school…its not a question of will you go, its just a question of when. I am more than pleased with your choice to wait another year, its not a race my baby. You will get to where you want to be when YOU are ready…not when others are. It doesn’t mean you are any less a student, any less a mature than the person who has chosen to move ahead in their plan..it means you are mature enough to know YOU are not  and that is perfectly fine.
Always remember that their will always be people who want to live their lives on a “schedule”…they want to be maarried by 25 years old, children by 30, career stable by 35yrs…if you have a plan or a schedule in mind and things don’t work out the way you had hoped, promise me..you’ll be ok with that. But always work hard, and never give up on any dream or milestone you hope to achieve. Its not about how fast you get there….it’s just that you do. Life is NOT a race, do not compare yourself to others and do not EVER let someone tell you, you are doing something wrong. It’s YOUR journey….don’t hurry along, enjoy the ride…all the ups, all the downs, the turns and even the stall’s. Live in the moment~ THAT’s important.~

100 Things to Teach Your Son

#98. Learn to cook a good breakfast

For many reasons son, my advice to cook a good breakfast is of importance. Women like a man who can cook. There is nothing more wonderful than after a night spent with their man…he getting up to cook a well deserved breakfast. Very romantic..while dating anyways, however very pracitcal when married with children. I mean if you are not helping with the children on a Sunday morning then you better be getting breakfast started. Let’s not forget the most important meal of the day is breakfast…its the fuel to start your day 🙂 (Sorry…i know you have been hearing that for year’s, but its time to start listening too it!)
You are on your way son, you have mastered the grill and only good things to come. Keep working hard, your eggs are great too…well done!!  Your future love interest is going to be one lucky young lady~

A letter to a sibling of a special needs child.

My dear friend, if you are reading this and you happen to be a sibling to a special needs sibling then this post is just for you~
Whether your own parents have expressed this or not I have something to say to you and I think its important for you too hear this.
I can’t voice enough how wonderful and amazing you are, you probably don’t even know it. 
I know how difficult and challenging your life has been through the years, I know you have witnessed some of your friends living lives that maybe you have envied. Trips, snowmobiling, hiking, childhood camps, family snorkling trips, rock climbing, white water rafting and many other adventurous activities that you may have missed out on as a family. People may not have known how difficult it would be for you and your family to attend a catamaran snorkeling trip In the Bahama’s. 
Even though you may have missed out on so many things, please know that all the while you were being raised to become one of the most remarkable person anyone could know. You may have missed out on some parts of your childhood, however you will have had more life experience than many of your peers. 

Let me share with you how I know this;
I know you deal with more than your share. There are many times when your parents have to spend a lot of time away from you. 
You know and understand that they need to take your sibling to a doctor appt. Maybe your sibling has been admitted to the hospital and your parents have to be there for them. That leaves you in the hand of others, probably frightened, confused and nervous. 
I also know that parents spend countless hours on the phone, figuring out issues about your sibling. Or maybe your parents are busy throughout the day caring for your sibling physically, and I know my friend you see this more often than not. 

Your role maybe at times is to stand back, sadly that happens far too often as well. But what I do know is that while you are watching during the chaos you are seeing the love your parents have for your sibling. Unconditional love is being embedded in your heart.

You see the patience your parents have for the situations that are thrown at them daily and that my friend is being planted in your soul.

 

You witness first hand the fighting your parents take on to get everything your special siblings needs, you notice the tears, anger and frustration and there again my love its being ingrained into your mind.

You may not know this but all these little traits are molding you into a pretty amazing person.
I am sure you are aware of how hard your parents are working themselves to be sure you and your sibling are well taken care of. Even though the demand of your sibling takes away much of their time and attention, they are never forgetting you. In all honesty it is you who keeps them going. Its you they see when they get off the phone from a frustrating phone call and when they see you, a wave of love and relief washes over them. Once again they are reminded, to take a deep breath and smile. 

 

Your presence is never not noticed, and even when you are not around at the hospital or in the home your parents are yearning for you. It hurts them to have you gone, its painful when the home is upside down and they are missing you.
I am certain that being a sibling to a differently able brother or sister is a struggle. I am sure there are times your heart stings of jealousy. When you are worried sick over your sibling. I know you have those times when you are angry because you are missing a friends party or we have had to cancel a holiday or trip. All those feelings are completely validated and you have that right to upset every now and then.
What I will say is this, you will never find a closer family then the one you share with your special sibling. The closeness you have with your family is admirable and in all honesty in less you live it, you won’t understand. There are no secrets, everyone works as a unit and the support shared between one another is solid. We spend copious amounts of time together not because we have too but because we want too. Your family knows what’s important in life and they take nothing for granted. Family time is what is most important, nothing comes before that….each one of you knows how quickly something can change.
The bond you share with your sibling is like no other, you will always have eachother. Your sibling relies on you, cherishes you and admires you, where ever you go in life you’ll always have a cheerleader. 
Think of how it feels when you get to watch your sibling reach a milestone or over come a very difficult and challenging goal. Not everyone takes the time out of their lives to be available to their sibling, you on the other had would never miss it.
Your friendship with your sibling is indescribable, you are their protector, encourager and family.
At times when the house is quiet with worry, we see you walk by your sibling and touch a shoulder or smile while sharing a look between the two of you that only you will understand. Trust me when I say you are envied. 
 
People are so jealous of the relationship you share.
It does not go unnoticed, your parents are watching your interactions daily and it makes their heart burst with pride. They see everything you do for your brother or sister and they especially love seeing when you stick up for your sibling, and when you go out of your way to make sure he/she is included in everything. 

Parents are very aware of your efforts in helping with your siblings medical treatments, physical and occupational therapies. How you quietly hold hands with your sibling during any procedures or quickly place an oxygen mask back in the right place. 
It has always been a comfort having you available to place yourself in a room and watch intently waiting for direction on how to assist with care. You do such a wonderfully grown up job of lending a hand or heart where needed. 
I am sure your parents have expressed in their way how thankful they are for you, and if by chance its not a routine thing for them please know they think of you all day every day. You have not gone forgotten. 
Most importantly my lovely, the reason you are going to rock this thing we call life is because you
know unconditional love, you know true heart ache and you know what’s truly important.
You have lived a life that takes a strong heart and a stronger mind, and because of that you will mature much faster than your school mates, you will exhibit more compassion than many acquire in a life time. You will know more about health care than 95% of the adults you pass on the street and you will have a sense of humor that can destroy any rock thrown in your path of life. 
When you first experienced the reality that your sibling had special needs, it was then your destiny was imprinted in the stars. From then you were chosen to stand tall, stand proud and stand together.
You are going to be an awesome human being,  you are going to change lives…all because you were the sibling of a special needs brother~

*Although I have shared with you my own family photo’s, I want to make it clear that this letter is for Kailey (sister too a special needs brother) but not necessarily TO Kailey. I am writing this letter for anyone who has grown up with a special sibling. If/when I do write a personal letter to Kail, it will be for her where all things referenced will be about her and the love she has for her brother (written with a grin*). But in all seriousness…I know she can relate deeply to this letter, and for that my darling we are so proud~

100 Things I Want To Teach My Son~Those who are able to laugh at themselves and at the rest of the world equally outlive us all.

As I said in the previous post, I am doing the same idea for Braden as I am for Kailey. I am doing 100 posts on 100 things I want to teach each of my children. Naturally, I want to teach both of them the same important facts of life. But for the sake of this blog I will mix it up a bit and leave each of them with similiar yet different pieces of advice. 

100. Those who are able to laugh at themselves and at the rest of the world equally outlive us all.
Pretty self explanitory I think. One of the most important lesson’s I actually have been teaching Braden since the day he could understand the relevance of laughter. 
Being able to laugh at yourself show’s the maturity of that individual. We started teaching Braden this lesson WAY back. Right back to the beginning, when he stared his very first physiotherapy program when he left the hospital. I remember wanting to send Braden to SickChildren’s Hospital, once he was diagnosed with the Spinal Cord Injury I wanted him to go where I felt he would best be looked after. I kinda figured, Sick Kids was my hospital..they did a great job with me, maybe Braden would be better off there. 
The medical staff reassurred me that Braden would be a big fish in this little pond at MacMaster and if sent to Sick Kids he would be a little fish in a big pond. Meaning…they have seen all kinds of things at Sick Kids and that Braden’s needs wouldn’t be necessarily a top priority. NOT that Sick Kids wouldn’t have done a wonderful job cause in my eyes they are the best…but I did understand what MacMaster was saying and we then agreed to keep him right where he was.
With being in a smaller hospital…it left Paul and I with the chance to be more involved with Braden’s care. We had to dive in and get hands on really quick. We became part of his rehabilitation routines, working with all the medical staff to help get our son healthy again. 
Well…the best way to get a 2 year old to do something they don’t want to do..is with laugher. We broke out all the funnies we could. Talk about becoming comedians…quick work on our end. 
It really wasn’t easy, he was 2…and he didn’t want us telling him what to do, not alone tell him to do things that were NOT fun in any way. 
Challenge, is one word that described a good 3 years…
I will have to say it was probably my dad who stared the “sillies” in the hospital room. For whatever reason Braden really responded to someone inflicting pain on themselves. Slapstick humor. My dad would literally “pretend” to bang his head on things in the room and Braden would die with laughter. He LOVED it. 
Braden would mimic papa and pretend to do the same kind of “physical harm” joking…sounds sick, I know, but we’d all laugh and pretend he was hilarious(well in all honesty, we didn’t need to pretend, cause he was funny. His laugh alone made us beam with pride and laugh with love). This then taught him to laugh at himself, he loved to make us laugh and our reaction fired him up. I do remember wondering if all this was healthy and of course through the years we banged into those idiots who “looked” to deeply into this humor and felt it was inappropriate…lol…whatever!
Anyways, thats how we managed to get Braden to learn how to laugh at himself. We’d make his “workout” fun. There was a fine line between laughing with him, or laughing at him (something we NEVER did)…
So when you are trying to get a young child of 2 to understand that his left arm isn’t fuctioning normally but keep trying to “make it work”, the best way to do that is through humor. We named his left hand “baby hand” and his right hand “dinosaur hand”..well actully Braden named them that, baby hand didn’t work so it was like a baby. Dinosaur hand did work and it had more power..therefore a dinosaur. We made fun games with those, and when baby hand didn’t “work” we learned to laugh at some situations related to “baby hand”….Braden had fun with it as well…it was our beginning to teaching him its ok to laugh at yourself, don’t take things so seriously. 
We have had ups and downs in this department. He natually went through difficult stages in different times in his life and sometimes laughter wasn’t appropriate. SO we laughed at others…and that too is another story..and probably one that once again my dad started~

I love us….I really do*