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 .

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