Living with a Sibling who has Rett Syndrome

***Just a note: I am writing this after a very long day in a car with little sleep. My english and writing skills are not the best at regular times***

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We have spent the day in Wilcox Saskatchewan, watching our older daughter Mackenzie play hockey in the Mandi Schwartz tournament. This tournament is hosted by the Nortre Dame Hounds. Tomorrow  (Today) Mackenzie’s hockey teams plays for the championship.

Many times, living with a child who has Rett syndrome, we forget about our other children in our home. We forget how siblings are forced to grow up fast and become second caregivers. When you can’t trust anyone else to take care of your child, you rely on an older or younger sibling.

We rely on Mackenzie.

Mackenzie is our second set of hands. She is there in the hospital when Ema is having seizures, or at night when she can’t sleep or when Ema needs food or to be dressed or to be cleaned up.

It is so difficult for siblings to “escape” reality and live a normal kid life.

We have really struggled trying to give that type of normalcy to our other four children. For our older daughter Mackenzie, we have found that one place with Balmoral Hall School and the BH Blazer Female Hockey Prep team.

I grew up with a grandfather (Jimmy McFadden) who played in the NHL. He won the Calder trophy (Rookie of the year) and Stanley cup. He played with some of the best players who ever played the game…Jack Stewart, Sid Abel and Gordie Howe, just to name a few.  Grandpa’s nephew Bill also played in the NHL, along with two of his children who play high levels of hockey still. So many people think having Mackenzie play with the BH Blazers is all about the hockey…but it isn’t. Hockey just turns out to be the bonus part.

BH has allowed Mackenzie to be a teen and to be her own person but it has allowed us to feel better about who we are as parents. (By lending us a helping hand)

Having a special needs child takes a lot of energy and time. In our hearts, we know we are doing our best, but sometimes we feel like it just isn’t good enough. Guilt plays heavy on us.

It took us awhile to figure out that not only were Lionel and I tired, but so were the rest of Ema’s siblingings. They all play such a huge role in helping and caring for Ema.

Mackenzie switched from a small hockey school program in rural Manitoba to attended a large school in Winnipeg for her grade 9 year. This was the same year that Ema’s seizures started getting worse. Mackenzie’s grades dropped and we had no idea what was going on or how she was doing or even what classes she was taking. We knew something had to be done, so for her grade ten school year we applied to have her go to Balmoral Hall School, a private all girls school in Winnipeg. The number of students in each class were lower and there was a different expectation. Right from the first interview we knew this was something different. We did have to make some tough decisions for it to all happen. Private school isn’t cheap and with all the added costs of Ema’s therapy and needs we really had to dig deep to make it work financially. Even with the extra financial strain, it has been a life saver for us all.

Mackenzie is thriving. School isn’t always easy but she managed to be an honor roll student in grade ten. (and hoping for grade 11) The staff have all reached out and have really helped her push herself. We knew she was capable of having great school grades but we spent so much time caring for Ema we ignored the fact that Mackenzie needed help too. At BH Mackenzie is not just a number. They have continues to support Mackenzie and our family. They continued to listened to us and have reached out in so many different ways.

Even though the school has helped Mackenzie exceed with grades and confidence it still wasn’t all Mackenzie needed to be “just a teen”. That is where her hockey team this season has stepped in.  Because the BH Blazers play in the JWHL they travel mostly into Eastern USA and Canada. This part allows Mackenzie to “escape” our reality at least every third week-end, hang with her peers and be part of her own special group. These girls come from all different backgrounds and situations. This group of young ladies has been a life line for Mackenzie. To see her smile and really enjoy everyone has been a huge relief for us no matter what the financial cost.

The icing on the cake for us is that this group is great with Ema. There is nothing better than hearing all these young ladies say “hi” to Ema or ask her for high fives when they see her in the arena lobby. It not only means a lot to Lionel and I but it means the world to Mackenzie.

GOOD LUCK to Mackenzie and the BH Blazers tomorrow.

 

 

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Elf on the Shelf Pays Miss Ema a Visit

Today we have a new visitor in the house. Normally I would say no to visitors as I can’t handle everyone in our home now, BUT this is a very special visitor. Her name is SPARKLES and she has been sent to us from SANTA. She is here to watch over Miss Ema and report back to the North Pole.

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I had never done Elf on the Shelf for my older children and I likely wouldn’t have started with Ema either but we felt like it was a way of getting Ema to communicate. I wanted to work on having Ema tell staff and classmates what was going on in our home and share stories just like all the other kids in her class. It had to be interesting and easy to understand for both Ema and her classmates. It was also a way to light a fire under my pants, as I am horrible with daily correspondence with the school. I tend to forget a lot 🙂

Most people take communication for granted, we have to work really hard at it in our home. I think what frustrates me most in life right now is that everyone assumes they have the right to say anything they want, no matter how it affects other. Sometimes I wish everyone had a bit of the apraxia that is such a huge part of  Rett syndrome. If it took everyone a bit more time to respond, maybe more people wouldn’t blurt out or email such hurtful things. I wish people could  realize how their words really effect people.

This might be hard to understand but Ema can be very shy. She is  very conscience of what is going on around her and likes to fit in just like every other child. People forget that Ema understands everything because just because she can’t speak. When you get to know Ema, you realize she has a wicked sense of humor. (Sparkles  really wasn’t the name Ema wanted but I didn’t think Ema’s sense of humor would be welcomed by many at school )

Ema reminds us of  Sparkles. They both can’t speak in our home, they both have a twinkle in their eyes and they both like to get into a bit of mischief.

I will try to post at least a photo each day of how we are all coping with our new visitor. I hope you enjoy our journey with Sparkles the Elf!

A Needed Reminder

I started this blog to help me deal with our journey with Rett syndrome.  I felt like I had no control over anything with Rett syndrome, but by raising awareness and sharing our journey it gave me some power and control back.  I might not be able to help Ema get ride of Rett syndrome but I could help another family or person cope and not feel alone. Today was a bit of a reality check for me. I was reminded  of how life can just get away on you. I was reminded that I had lost my way or my focus a bit.

Over the last year and a half Ema has been dealing with some  health issues, mainly uncontrolled seizures.  Issues that were really hard and difficult to deal with. I felt like I needed to be strong and get through it. I did survive, but barely. Thankfully Ema’s seizures have stopped, for now anyway and I have a bit more time to reflect and work on myself  I felt like I barely had enough time to breathe not alone actually think.

I don’t like to admit to many … this is a really difficult journey.

Today, I had the opportunity to hear about another family’s journey. It was a reminder to me  that I need to slow down and appreciate each step in life. I need to appreciate all the blessing that Rett syndrome has brought us and to take each day, one step at a time.

I met a young man who has a daughter with Autism. Our meeting had nothing to do with Rett syndrome or autism. His family is in the process of going through genetic testing. I have not met his daughter and I have no idea what genetics is testing for. Regardless of what testing is being done, I found myself reliving that place and time in my life when we too were in search of answers.

It was one of the most difficult times I have ever been though. For me it was more scary than being in emergency watching doctors and nurse stand over Ema as she is having one seizure after another.  So much was happening to Miss Ema and we just didn’t know why. I was used to being in control and now I had control over nothing at all. Lionel and I both had so many unanswered questions and so much of that anger was taken out on each other. We had no clue what was happening with Ema and  we also had no understanding of how the medical system worked. We spent hours and days trying to understand why you had to wait to have tests done because of funding and why it wasn’t just as simple as going to one doctor. Everyone seemed to be specialists and experts: Friends and family all had their own diagnosis and therapists and caregivers had different ideas. We spent hours asking “Why us? Why Ema?” Looking back, the pressure to do the right thing for Ema was so huge and overwhelming. We either gained friends and family in the process or we LOST them. It was a hard and lonely road.

I have change so much in the past 8 years. Before Ema was diagnosed, this young man’s story would have just skipped over me. Today it is a reminder to slow down. It was a reminder that I need to get back to the basics and share my story. I need to share our story in the hopes that it might help just one person.  It is a reminder that even though this journey in Rett Land is super difficult, I have survived and will continue to.. 

Just like I wrote in my first blog, I would love to have you come along with me as we journey into Rett Land!

Rett Syndrome Awareness Month

I am so happy to be able to post again after being away for such a long time.

This is the first time in over 15 months that Ema has been seizure free for more than a 8 week stretch. We have finally found a combination of medication that is working to stop her seizures right now. We just hope that it continues to help for a while.

When Ema isn’t feeling well, I sit with her and hold her tight. This allows me lots of time to think. I come up with all these wonderful ideas on how I will raise awareness for Rett syndrome in October. Before I know it October sneaks up on me and I have nothing planned. This year is no different.

I am just going to start this month with a post about a company right here in Manitoba who is helping  Eyes on Ema raise money and awareness this month but has also played a huge part in helping our family.

Supper Central   – http://www.suppercentral.ca

“Supper Central takes the shopping, chopping, and preping out of your daily meal routine. We provide fresh, homestyle meals for our customers to take home, cook, and enjoy! Assemble meals yourself in our assembly kitchen; place a pick up order for us to assemble; have your order delivered; stop in and grab meals on the go from our Made to Take cooler; or organize a Private Meal Assembly Party for you and your friends.”

Supper Central has been a life line for our family when Ema has been sick. When we have had one of those nights or days that are so long and we have no energy. All we want is to have a good wholesome meal and relax, but don’t feel like going grocery shopping and then coming home to prepare it. (and we don’t want fast food) We stop at SUPPER CENTRAL and pick up a fresh prepared meal. Everything is proportioned and ready to cook and the meat and ingredients are always excellent.

Much of the time we are already lacking sleep, so it is very important for me to keep the family eating healthy. These meals allow me to do just that. I try to keep a meal or two always in my freezer in case Ema ends up in the hospital and the kids need to eat. The instructions are so easy to follow and the kids LOVE making them.

I also love giving SUPPER CENTRAL for gifts. I have purchased them for other friends who are in a similar situation and for new moms.

One of the important things for EYES on EMA is to help other families who are having a rough time. After families received a diagnosis and everything has calmed down, families are often forgotten. We want to make sure that doesn’t happen and families always know that they are not alone. We are working with the Children’s hospital right now, trying to secure a plan that allows us to send out a SUPPER CENTRAL meal to those families

SO, if you have never purchased a meal from SUPPER CENTRAL in Winnipeg, you need to start this month. For the month of October, Rett Syndrome Awareness Month, when you purchase the Bruschetta Chicken with Parmesan Pasta from SUPPER Central, the assembly fee will be donated to EYES on EMA. I can’t thank the wonderful women at Supper Central enough for believing in EYES on EMA and for helping to raise awareness for Rett Syndrome and all special needs this month.

Silent Sundae Bar

Life has been crazy, so I haven’t made the time to post in a long while.

BUT this event NEEDS to be written about, celebrated and shared!!!!
Because you are reading this on my blog, I am going to assume you know my daughter Ema has Rett syndrome and lost all of her speech when she was young. She has had to learn how to communicate in a different way. She is learning how to communicate by using a Tobii Eye Gaze system and an iPad along with some other non-electronic methods. (IF you don’t know our story you can read it in “My Story” on this blog.)

As you read this post you might think this event is just about how Ema communicates, but it is NOT. Due to privacy, I only refer to Ema, but there are many other children just like Ema in our school and division. This is a celebration for all of them!

Ema attends Oak Bluff Community School in Oak Bluff Manitoba, Canada. The school is part of the Red River Valley School Division. Our school division hires their own speech and language pathologist who works with all of the children in the division on a rotation. We happen to have a very special speech pathologist who believes in Ema and her ability. Melanie is open to new ideas and is always willing to listen. She is always learning, searching and inquiring about new things that might help. These qualities are HUGE for parents with a special needs child. Most of the time all we want is for someone to listen.
I am MORE than excited to share this event that Melanie has planned for Ema’s school.

Melanie has organized the first-ever AAC Awareness Day in the Oak Bluff School, which will take place on Monday April 11th, 2016. It will be a fun day focused on AAC. (Maybe even the first of its kind in Manitoba!)

“Augmentative and Alternative Communication (AAC) refers to the various ways individuals who cannot speak may communicate their ideas.”

Some individuals may be non-speaking because of genetic disabilities such as Rett syndrome. Others may be born without speech or become non-speaking later in life due to other disabilities like strokes. There are various combinations of AAC such as using pictures, alphabet or words, gestures, sign language, computers, and electronic talking devices, like Ema’s iPad or Tobii Eye Gaze system.

AAC gives individuals like Ema a way to express their wishes and feelings and also an opportunity to control their lives, which many of us take for GRANTED.

Melanie will be setting up a lab to teach the students what AAC is and how everyone uses different ways to communicate. The students will then have the opportunity to use the iPad, eye gaze system, BiGmacks, Supertalkers and Communication Boards. The early year’s classrooms will learn about a girl named Katie though a story called “How Katie Got a Voice”, a special book written about a little girl who uses AAC to communicate. Each early year’s classroom will keep a copy of the book for their library. (Donated by Eyes on Ema)DSC00747

The REAL test will come for the students as they try to put themselves in a position of needing to use AAC to order an ICE CREAM Sundae from the SILENT SUNDAE BAR. I am happy and proud to say Eyes on Ema will supply the ice cream, cups, spoons and napkins as part of raising awareness for all disABILITIES.

There are many things that excite me about this day. First, we are raising awareness for special needs in a positive way! Many times people only see and hear non-verbal children when they are frustrated and acting out due to not being understood. This will be a FUN day of learning instead!

For one day…the spotlight will be on her ABILITIES and uniqueness. This day isn’t about trying to make Ema be like everyone else but instead everyone else will try to be like her!

Ema is a tough little girl to figure out and understand. By giving other students a chance to try her way of communicating, hopefully it creates some compassion and new understanding not just for Ema, but for others too.

It makes me proud to have Ema be part of such an exceptional group of people. Melanie has gone way beyond what is expected to make sure that the children in our school division who need help, get it. But she doesn’t stop there, she also helps to educate all the other students about communication too. The principal, Ms. Lee and resource teacher, Mrs. Green, have been open and willing to try new things and host events just like this. Mrs. Green arranged and found  time in the busy school day so Melanie could turn the idea into reality. Sometimes with our “normal” children, I feel parents take for granted what we think is “OUR RIGHT”. Having four children older than Ema, I had some very unreasonable ideas and requests. I still do.

The difference now is that Ema has forced us to slow down and actually look at what we have, not what we DON’T.

Teachers and schools administrators are given ultimatums without families even thinking about anyone else’s children. Sometimes the issues that parents find to be a “HUGE” issue right in the moment, are really not that “BAD” after all. Our community is really blessed to have this group working with our children.

I hope that the first AAC Awareness Day and Silent Sundae Bar in Oak Bluff will be the start of a great yearly event, not only for our school and our division, but for other schools in our province.

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A Note about Melanie. Melanie is also the creator of a charity called “The Frosting” Foundation. The foundation supplies a “Birthday Box” to children who are in hospital for their birthday. The “Birthday Box” is filled with a Birthday banner, two paper pinwheels, paper cups and napkins (solid colours, polka dots, stripes or chevron only) and paper straws (all patterns), a blank card for hospital staff, family and hospital friends to sign, a party hat for the Birthday child, a battery operated candle (they aren’t able to light an actual candle in the hospital), a small Birthday tablecloth, age-appropriate activity or comfort item such as a colouring book, a travel-sized game, a lip gloss or a nail polish . I am also proud to say that Eyes on Ema supplied 1000 straws so that the first 40 +boxes could be created. My older daughter Mackenzie and I had the pleasure of helping pack the first set of boxes. Check her out on Facebook or at http://www.frostingfoundation.ca

Let’s Talk Mental Health

I am always proud to be Canadian, but today makes me even more proud. Today is #BellLetsTalk Day in Canada.

“We’ve started a conversation about mental health. Now, let’s take it one step further. Let’s fight to end the stigma surrounding mental illness.”

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I suffer from mental health issues.

I am not telling you this so you can feel sorry for me. I don’t want pity. I am very grateful that I was able to get help. I want to make sure others get that same help too. I want people to know they are not alone and that it will be OK.

Although it seemed like an eternity, it was during the long four years of trying to figure out what was going on with Ema that I hit a low. I was the type of person who always needed control of every aspect in my life and then Ema came into my world. Everything started spiraling out of control for me. I had NO control over what was happening to Ema. I had no say in how long it took for test results to come back or when we got to see specialists. Everything just seemed to be falling apart. I had no choice but to finally admit I needed help, both mentally and physically. Ema needed me and I couldn’t help her in the state I was in. Even though I originally thought she needed me more, I know now that she ended up saving me.

Many people think my mental health issues (anxieties, OCD, ADHD) stem only from Ema’s medical conditions and her having Rett syndrome, but it was Ema having Rett syndrome that made me face a life time of anxieties head on. For some reason “mental health” is OK in society as long as there is a “socially appropriate” reason, like dealing with the stress of a sick child. But my anxieties didn’t magically appear when Ema was diagnosed with Rett syndrome…It had always been there. I just couldn’t admit or deal with it. Ema gave me the opportunity to help myself.

Because there is such a stigma attached to mental health, many go without getting help. I was no different. I was embarrassed. Until I was forced to get help, I couldn’t understand why everyone else could go into a large crowd and be OK. What was wrong with me? Why did it scare me so much? Why was it so difficult for me? Why could I start projects but never finish? My brain never really ever shut off. I started a conversations and then switched topics before I finished the first. I was like a hamster in a ball… Why did my towels have to be folded exactly the same way and placed in the closet in the proper color order or I couldn’t sleep?  People commented on how “strong” I was, but inside I was a mess.

It was amazing how much relief I felt knowing I wasn’t the only one. I wasn’t alone anymore. There were more people just like me out there. Just like it wasn’t Ema’s fault that she has Rett syndrome, it wasn’t my fault I had anxiety issues. I don’t believe my mental health should be used as an excuse for things that have happening in my life, but I do believe it helps me to understand why I do what I do. Mental Health is a life long journey with no “magic” pill but I have options and ways of dealing with my anxieties now. I don’t know anyone who would go without getting help for a broken arm or separated shoulder, but so many go without getting help for mental health issues.

Mental Health is one of the reasons our family started EYES on EMA. I want parents to know that they are not alone. The mental stress and worry of having to deal with a sick child is overwhelming. The pressure of having to deal with so much in a system that isn’t user friendly creates huge mental stress that many don’t understand.

And thanks to projects like PROJECT 11 & Bell Let’s Talk we are changing how Canada views mental health.


Believe in Ryp – Video of Rick Rypien and Project 11 in Manitoba

Eyes on Ema. We are officially up and running!

After a LOT of help from a wonderful group of community ladies, Eyes on Ema is up and running.

EYES on EMA is officially a registered organization.

All legal work (Articles of Incorporation, bylaws, etc.) has been completed by Neil J. Duboff of Duboff Edwards Haight & Schachter Law Corporation. Mr. Duboff and his office have completed all the legal work an no cost. They have offered to continue to guide us and help us along our journey.

Articles of Incorporation were stamped on October 20, 2015. The board is made up of wonderful community members who have volunteered their time to help our family.

Money raised does NOT go to Ema or our family. All money raised will go to help others in Manitoba with their journey. Although the family (only one) sits on the board, final decisions are made as a board.

There are many places, families and projects we want to help fund and raise awareness for in Manitoba. One of our first projects will be creating a scholarship. When asking our older children what they wanted to see happen with Eyes on Ema, they all suggested starting a scholarship fund. They want to offer other students who are either entering into a health care field or who have special needs siblings help continuing their journey.

Our graphic work (Logo etc…) has been completed by Sandra Grouette at Grouette Designs. All current photos of Ema have been taken and donated by Katie Mirrlees of Katie Mirrlees Photography. Younger photos of Ema on the blog were taken by Joel Ross Photography.

We are so blessed to have such wonderful people step up and help us with one of our family adventures! (Anyone who has helped me with an adventure knows what they can all entail!) These ladies keep me grounded.

THANK YOU to everyone who has helped turn our family’s vision into a reality.

Please keep following us for more information on what we are about. Watch for new brochures and a web site in the near future.

If you would like to learn more about us or lend a helping hand or if you have a family who just needs to talk, please feel free to contact us.

Melt Down 911

“I am not sure how you do it?” I hear this all the time.

The reality of having a special needs child means that lots of days are difficult. It doesn’t seem fair. It really isn’t how we planned our life journey. BUT life goes on.

So that is why my answer is always the same… “I don’t”

The truth is I handle each day …one day at a time. One moment at a time. I wish I could tell everyone that I was some SUPER WOMEN and it wasn’t overwhelming or I didn’t get angry or frustrated or tired. BUT I DO. It is difficult to continually see little girls doing things you wish Ema could do.

I haven’t had the energy to write a post over the past few months as Ema’s seizures have decided to challenge us. In spring she had her first “cluster” of seizures and since then we have struggled to get control of them. The seizures are often followed with Todd’s Paralysis. Todd’s paralysis causes Ema to lose use of her right side for a brief period of time. What we thought was a single seizure on Tuesday, turned into a 911 call and a hospital visit.

I always find the strength to keep a calm head when Ema is going through health issues. I never lose myself when she is having a seizure. Every emergency hospital visit we have had, doctors and nurses tell me over and over how much they appreciate my calmness. Little do they know? I save my melt downs for when Ema is feeling 100% better!

Many people see me out and about with my older kids for hockey or school. We feel like the older children deserve a small piece of normalcy (Whatever that is?) so we try our best to split the driving/activities between Lionel and I. My time spent waiting in hockey arena or school parking lots is like my “time out”. I just like to sit and watch what is going on around me. I don’t care if I sit alone or in a crowd. I am not always paying attention, but it gives me a few minutes to breath. Not many people get to see my melt downs,  so from the outside I guess I appear to be handling things.

For my entire life, I always thought that it was something I was doing wrong when I couldn’t keep up or do it “ALL”. I felt like I was always letting someone down if I couldn’t do what “I thought” was expected of me. Nothing I did was ever good enough for my standards. Ema forced me to take a good look at myself and deal with my issues. At one time, I thought my melt downs were a point of weakness. I know better now. I don’t believe we should use our mental health issues as excuses, but I do think we can ask for help dealing with them.

For some reason everyone has a difficult time talking about mental health struggles. Society makes it so hard for us to except that we all have imperfections.

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Our family started EYES on EMA to help raise awareness for mental health issues within special needs families. (and Rett syndrome) Raising a child with special needs is a difficult journey. For many parents, it is difficult to admit and/or get the help needed. It is hard for friends, family, support workers and medical staff to know what we go through 24 hours a day. As hard as they try to help or understand,  it just isn’t the same as living it. Many times it is way easier to say we are “OK” then to explain our situation. We want families to know that everything will be OK. Whatever you are going though, there are others that can help. We want to help families find their way in what can be a difficult and frustrating system. We want to help when they need encouragement. We want to be there to listen to families, have them feel safe and know they are not being judged.

“You’ve done it before and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination.”  Ralph Marston

So for the record. I don’t’ always “do it”. I just do the best I can, with the skills I have been given. Always find the positive. There is ALWAYS good in everything! I continue to learn as I go, just like everyone else.

 

Watch for more information on EYES on EMA. “Like” our FB page.

For all the special needs families …here is a post that helped me over this past bump in the road. http://themighty.com/2015/11/to-the-special-needs-parents-who-dont-always-see-the-glass-as-half-full/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=GENERAL