{MEMBER CLUB SPOTLIGHT} Inside the Live Better Members Club we feature the Momma Spotlight series; putting faces and stories together of other women walking similar pathways. Read about other moms adjusting to and overcoming huge challenges with their child.

I’m excited to introduce yet another Canadian to our group, Jackie Lundy. Welcome Jackie, let’s get started with some of the basics…   

Hi, everybody! I am 33 years old and I’ve been married for 10 years to my high school sweetheart, Daniel Lundy.  We dated for 10 years before finally tying the knot and there is nobody else I could have imagined spending my life with.

Wow, dating for ten years?! Your man must’ve known you were a keeper no matter how long it took ;). I have a love for interior design, nature, and photography. I dream of becoming a food network star and I am a beach lover! I’m a part-time wedding hair stylist, a skill I was blessed with and enjoy. I have three sisters and fall in the middle with a twin to boot and have two spectacular parents that have been married for 40 years. They have installed in us girls to be independent, loving, patient, forgiving, and accepting Christian women.

That’s a lot of roles for one person. Tell us about the one that’s most important to you. My favorite title is “Mother” to my (just turned) 6 year old daughter, Sydney. She is our “everything” and is filled with joy and laughter. Sydney loves the Top 10 on the music charts instead of typical kids music.

I can imagine how much joy she gives your home! Tell us more about her story. Sydney was born in January of 2011 on a very snowy day. I was full term and as far as I knew everything was great. After a (long!) natural delivery, she was here! She was a healthy girl, weighing in at 7 pounds 4oz; a bundle of pink that took to nursing right away.

After a few weeks we noticed that something felt and seemed off with her. She experienced lots of crying, screaming in pain, and gasping. She also seemed to experience tightening of muscles and didn’t sleep much at all, at least not the way a newborn should have.

After meeting with her pediatrician we were referred to a neurologist when Sydney was nine weeks. In addition to her symptoms, we discussed how her milestones are not being met at all, and then relayed how everyone told us it was just GERD which she would outgrow.

But you suspected it was more than GERD. How did you find out you were right? I will always remember what the doctor said when he was done examining my screaming baby in his cold office. He looked me in the eye and said, “Well, GERD is the least of your problems. My heart sunk.

I began to nurse Syd, as I was soothing her around the clock. But at that very exact moment I knew our lives had changed yet again.  And they changed into a world I had zero knowledge or any idea about.

That moment of no turning back, right? It’s terrifying! What came next? I’m sure some of you all know what was next in line – referrals to multiple specialists all over Ontario, and each with 5-8 month
waiting list. In the meantime we had to get started with blood work, skin grafts, MRIs, EEGs and early intervention therapies.

Here’s the thing though, every single test result was coming back negative; after four years of testing we were still undiagnosed.

In early 2016 we were offered to have Genome X Sequencing Exam performed on Syd, we agreed (knowing there was only 10 performed so far at that point in Canada) it was the last test they could do to reach a diagnosis.

Coincidentally this appointment landed on the exact same day we were getting the keys to our new accessible home we built for Syd (what are the chances!).

As soon as the doctor entered the room I could feel myself start to sweat; she looked at us and said the test came back negative. There was a tiny mutation in a gene, but it couldn’t explain why Sydney is the way she is. We sighed with relief because to us no diagnosis meant no limits; we can push her to her own full potential! As her neurologist says, she’s a snow-flake, a unique design of her own.

I love that, a snow-flake. Such beauty and uniqueness in her creation! What do your days look like now? After praying and talking we decided to homeschool Sydney. She needs constant movement and wouldn’t get what she needs in a typical environment. So I am her teacher and have created a custom curriculum that is modified for her needs including OT, PT, Speech Therapy, Vision (she has CVI), Music Therapy, and aquatic therapy. On top of this I have added Conductive Education to our curriculum. It’s a therapy created in Budapest for children with Cerebral Palsy. We go to summer camp for a month to do intensive work.


What are Sydney’s challenges today?
 
Sydney falls into category of global developmentally delayed; she’s unable to sit or stand on her own. She also is visually impaired and in non verbal with the exception of a handful of small words such as yes, no, and dad.  She can sign a few words and has a great appetite.

We keep her busy with lots of bike rides on her adapted bike, swinging, swimming, and in-and-out of standers and walkers. We also installed a track in our home which allows her to play independently and allows me to be hands FREE to do a few chores or prepare meals. It’s seriously been the best adaptation we’ve ever made. Watching her walk or dance around in her harness on the track is truly amazing and heartwarming, and is the best view while having my morning coffee.

How do you take time out for yourself? Cooking is my therapy. I don’t need a pedicure or a massage, just let me cook and I go into a zone which soothes my soul (and my waist line).

My husband and I get the most pleasure being together as a family: the Three Musketeers! Family fun for us is being in our pool in the summer, long walks and bike rides.  We have learned to appreciate nature… the quiet and beauty of the earth God has provided us.  We turn off our phones and enjoy the beach, car rides and going on trips.

Down time and quiet time to us is just being together, laughing and going on an adventure… we don’t want a break or time away from Sydney because we have fully accepted and love our life. There’ve been incredibly hard moments but we have such strong faith, love and support for each other, and when we see Sydney’s development and growth… what more could we possibly want at this point in our lives?

Knowledge is power and we feed off of that and continue to learn and grow from new therapies. From talking devices and special needs equipment to watching your child in dance lessons beaming with joy, this is OUR world, this is OUR reality, God has blessed us with this life and we would not change one thing.

What tip would you pass on to a mom new to special needs? I have learned that my child does not fit in most “boxes” and never will, so instead let your child create, design and construct their very own as they grow. You will love every moment and treasure every second!

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