7 Years Since Elle’s Diagnosis

elle 2019Today is the 7th anniversary of Elle’s diagnosis and once again a time for us to reflect on the last year and to try to share with you our experience in a few paragraphs. We don’t share a lot and we don’t share very often because we realize that everyone has their own journey and recognize that things could always be worse, but we also know that we need to have a voice and share our journey with others, as this is one of the ways to help raise awareness.  This year, we have also decided that our post will be in Lory’s voice and from her perspective.

Avoidance and Denial…. honestly that’s where I am at when I reflect on where I am on my Rett journey.  If I just take each day as it comes and not think about what’s to come, it makes each day so much easier.  On August 31st, we heard the words that we had hoped to never hear, “Elle needs to have surgery to correct her scoliosis”.  She went from having nearly no curve to 65-degree curve in under two years and despite wearing the back brace for 22 hours a day for the last year, here we are “the point of no return”, as per her doctor.

Of course, as a mother, I reflect on whether we could have done anything more to slow the progression or reverse the curve…as soon as her scoliosis was diagnosed we started with a chiropractor, osteopath, interment massage, daily exercises, but alas, here we are.

When I think about the surgery, the feelings are overwhelming and beyond frightening.  It’s a 10-hour surgery and a very long recovery period.  They are putting rods in my angels back.  Will she wake up afterwards?  When Elle had her tonsils out at 4, she had a really hard time waking up and breathing afterwards- this is terrifying!  How will her pain be afterwards?  Elle has a very high pain tolerance and we often struggle to identify if she’s in pain or where the pain is located. Will she get an infection?  Will she continue to be able to walk after the surgery?  As we listened to the doctor explaining all of the side effects and potential complications, my stomach fell and my heart broke….I wish it could be me instead….but I needed to keep it together.  Both Elle and Paige were in the room listening to the doctor, and I didn’t want them to know how scared I was.  “It will all be okay”, I say with a smile.  Surgery would be within the next year, but consent needed to be signed now so that the process as could begin.  Kevin was in so much denial of the need for surgery that he had me sign the consent forms because maybe that might make it go away.  As I signed the consent, my hand shook, and my heart raced – was I really ready to allow this to happen?  But what choice did I have.  She needs this surgery as the curve continues to get worse and soon likely to begin affecting her organs.

Kevin and I know that Elle completely understands everything we say, and we know that she understands her own body, so when we asked her if she wanted back surgery, she said “yes”, so we knew that we were going down the right road.  While we believe that this will have a positive impact on Elle’s life, and lots of people have this type of surgery, what we also know is that having this surgery as a person with a neurodevelopmental condition puts Elle at increased risk for other complications.

As we walked to the parking garage, Paige held my hand and a tremble began on her lip, she looked up at me with tears in her eyes and said “I don’t want Elle to change.  I don’t want her to stop walking”.  As I gathered her in my arms and fought back my own tears, I told her I understood her fear and that I felt scared too, but that we needed to trust the doctor who is the expert.

While this will be a difficult time for us, we also remember not to lose sight of the amazing moments that we have had in the past year, and how blessed we are.  In November, Elle received her Make-A-Wish trip to Disney.  This was a dream come true experience for Elle, which speaks of often.  Also, in April, we celebrated a milestone birthday for Kevin in Cuba, where we spent a week enjoying some very precious family time.   And in addition to these two big highlights, there are many, many day to day moments that warm our hearts and keep us persevering.

At the crux of our journey has always been our hope and faith, and that has not changed.  We are so blessed for all the good times that we have, it’s just in these moments when we can’t deny that Rett exists in our lives, that makes it hard to always keep it together.

So, when I get asked why we do what we do, it’s because I want there to be a cure.  I don’t want any other family to have to experience the fear, worry and anxiety that we feel.  I don’t want any more individuals with Rett syndrome to have to suffer.  I want a cure and I know that that can only happen by raising awareness and funds for research.

As in previous years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On February 1st, 2020, we will be hosting the 8th Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event will feature the last regular season game for the Paris Mounites versus the Ayr Centennials.  We are also going to be having a Skate-A-Thon prior to the game.  More details about the Skate-A-Thon will be shared once confirmed.Along with the great hockey, there will also  be a silent auction.  Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Association (O.R.S.A.) and Rett syndrome research in Canada.

As we plan for our event, we are currently looking for donations, sponsors or silent auction items.  If you or someone you know is interested, we have two different sponsorship options available.  Silent Auction Items are also being accepted. Your sponsorship or donation of any amount will help us to realize our goal.  If you are interested please contact us at ref4rett@gmail.com.

To learn more about Rett syndrome and O.R.S.A., you can visit www.rett.ca .

7th Annual Ref4Rett

Last night the 7th Annual Ref4Rett event was held at the Brant Sports Complex and it proved to be another amazing night!!!

A special thank you to Todd Wood and the Paris Mounties for allowing us to be a part of their last regular season game! What a way to end the night – with two quick come back goals to take the game into overtime.

Thank you to the Paris Alumni players that supported this years event and who helped to put a smile the faces of Elle and her two Rett sisters, Isabella and Cuiliu.

Thank you to all of our volunteers, without whom, this night wouldn’t have been possible. Thank you to our MC, Andy Thibodeau. Thank you to Cindy Hefferan, from Now & Always, who provided the linens for the hall. Thank you to everyone who donated an item to the silent auction and to all of our sponsors. The event is truly a culmination of everyone coming together for one cause.

Thank you to our Paris Tyke 2 players for an entertaining game during the first intermission. It looks like we could have some future Mounties in the making!

We are so proud to report that this years event has raised over $20,000!!!! All of these funds will be directed towards the Ontario Rett Syndrome Association’s Hope Fund – which is dedicated to Canadian Rett syndrome research.

Thank you to everyone who came out to support us and celebrate what is a magical night for our family! 💜💜💜

6 Years Since Elle’s Diagnosis

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Today is the 6th anniversary of Elle’s diagnosis and once again a time for us to reflect on the last year and to try to share with you our experience in a few paragraphs – a challenge we know, because there is nothing simple about Rett syndrome.

Writing this post is always so hard…. not because we don’t have so much to share, but because it requires us to either just write some very generic post or to be vulnerable and share intimate details about Elle, and our family’s journey. For those of you who know us well, we don’t often put ourselves “out there” and almost always hold things close to the chest. This year, we decided to take a leap, to be vulnerable and share some details about where we are at. At the crux of it, this year reminded us not to get too comfortable.

We know that in the hierarchy of “special needs” or even in the Rett syndrome community, that we are blessed in that Elle can walk and talk, however the reality is that we are still living with Rett syndrome, just our version of it. When many of our friends are entering the stage in their parenting lives where they share stories of “it’s so great that the kids can just play while we get in our workout or read a book” or “we love the weekends cause the kids can get themselves up and we get a little sleep in” – this is not our reality and never will be, as despite how much Elle is able to do, she is not able to be left on her own for any amount of time. For us, this year has just been another realization of how our life journey is so different and will always be different from many of those around us. We know that some will say that those are just the sacrifices of parenting or that we are just being too self-centered in wishing or even thinking those things, but we would challenge that sharing these thoughts takes courage to verbalize and saying them out loud come at a risk to us. But perhaps it is our turn to be real, and to give those caregivers who feel too scared to verbalize their thoughts and say them out loud, a voice, or at least help them know that they are not alone.

We try to help people understand what is like to share our home and our life with Rett syndrome, but it is not easy. There are many days that we don’t understand it, because it changes and the impacts it has on Elle have changed. But as parents we are expected, and want to, understand it and do everything that we can to meet Elle’s needs. But we are not experts, we do not have medical degrees nor are we educated in physiotherapy, occupational therapy, education or any of other expertise’s that are required to manage the multiple disguises of Rett syndrome.

Just when you think everything is under control and you can finally breathe a sigh of relief, it raises its ugly head and rapidly curves your daughter spine right before your eyes. Right now, Elle is going through some significant challenges with the curvature of her spine. She is now wearing a back brace up to 22 hours a day. She also sees a chiropractor, osteopath, massage therapist and does regular stretching and core strengthening, with the hope of preventing her from needing to have major spine surgery in the future. But will this be enough – our constant worry – “have we done enough?”

Elle’s seizures, thankfully are controlled for the most part, however at times are so subtle, that if you are not paying attention to her, you would never know that she is having a seizure. But are those seizures? Or just what are called ‘Rett episodes’. How do we know?? To really know the difference, Elle would need to have to be hooked up to an EEG monitor or perhaps have them observed by a Neurologist – but you can’t plan the seizures or “episodes”, so we do our best with what we know.

This, however, is not meant to be a “poor Elle” or a “poor Lory, Kevin and Paige” post, this is simply meant to bring to light that Rett syndrome is always going to have an impact on Elle and us, and often when we least expect it. But we are not ever going to back down or crumble in our efforts against it. Elle is simply too important to us, her family and friends, and the entire community whom she has around her. Like everyone, we have our good days, and our bad days, moments that we don’t want to forget and moments that we don’t want to remember but can’t forget. Nonetheless all it takes is just a few minutes with Elle – talking to her, interacting with her, and being silly with her – to find strength. She is our strength. She is the reason that we will continue to fight and never give up. She helps us to do whatever we need to do for her, but also continues to motivate us on our quest to help all those individuals and families impacted by Rett syndrome.

As in previous years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C). On January 26, 2019, we will be hosting the 7th Annual Ref4Rett Event at the Brant Sports Complex in Paris. This year’s event will continue to feature two hockey games. The first game will feature an alumni game between the Paris Mounties alumni. The second game will be the last regular season game between the Paris Mounties and the Ayr Centennials. Along with the great hockey, there will be a silent auction. Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Assocation (O.R.S.A.) and Rett syndrome research in Canada.

As we plan for our event, we are currently looking for donations, sponsors or silent auction items. If you or someone you know is interested, we have two different sponsorship options available. Silent Auction Items are also being accepted. Your sponsorship or donation of any amount will help us to realize our goal.