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©2017 BY THE HARLIE RUSSELL FOUNDATION LTD. Photo credits Linda Wiseman & Shaun Clifford

  • The Harlie Russell Team

Tell-All Tuesday

Updated: May 25, 2018

Let's talk sleep. Or lack thereof. Most new parents have experienced or expect to experience a lack of sleep when they bring their newborn home. It's one of the most common adjustments when you become a parent for the first time. After countless nights of pacing the house cradling your baby hoping for just a few hours of shut eye, you begin to accept that coffee is your new best friend and dark circles under your eyes are your new trademark look. All-nighters are no longer filled with friends and laughs, but tears and yawns.


Thankfully for most, this passes. It may take months, or sometimes even a couple of years. I had accepted when Harlie was a baby that 3 hours sleep was a good night. I longed for the day that I would enjoy crawling into bed at the end of a long day to wake only when the sun came up. It never happened.


By the time Harlie was 1 year old, I knew something wasn't right. She was still up all night long. I felt by this time I should be seeing a change in her sleep, but it still felt like I had a newborn. How do people do this with two kids? It's not possible! I saw many doctors and specialists and even spent a few nights at a sleep clinic hoping for some answers. The answer? "She will grow out of it." After that, I just accepted it. I went with it and no longer felt frustrated, just plain exhausted. Day after day, year after year, the sleepless nights continued. Many other parents would kindly share their experiences and offer advice, but nothing worked.


As Harlie began kindy, I started seeing that this was no longer just a matter of me being tired, but it was negatively affecting Harlie's schooling and physical therapy. It was too much for her to handle with little sleep. I knew something had to change. After seeking advice from a sleep specialist at the children's hospital, Harlie was prescribed medication to help her fall asleep. It was a miracle. The only problem was, it only lasted 2 hours. But, it was 2 hours more than she was ever able to sleep before, so I continued the medication every night in the hope that she would slowly improve.


Upon our return from America after Harlie underwent SDR surgery, I continued the nightly medication out of habit. But with our schedule filling up more each day, I completely forgot to stock up! One Friday night in October as I began preparing her medication, I realised the bottle was empty. I panicked. The hospital required 7 days notice to fill a prescription. How were we going to make it 7 days without sleep? There was nothing I could do so I tucked Harlie in for the night, preparing for the next few days of pure exhaustion. Then, something amazing happened. I woke the next morning to the sweet sound of Harlie happily singing in her bed. I couldn't believe it. Her first night in years without medication? This can't be possible.

I discovered Harlie was able to completely relax her body and drift off to sleep without pain or spasms in her legs for the first time in nearly 7 years. Here I was thinking the SDR surgery would help Harlie walk, but has changed so much more. Harlie is now medication free but most importantly, pain free. Night time is now a special time, no longer clouded by the anxiety it once was. Harlie is now happier and able to tolerate both school and physical therapy on a daily basis while still having the energy to play like a 7 year old should.


I still communicate with other special needs parents as they struggle each night get those magical 2 hours sleep and many have now begun their SDR journey. I only hope they have as much success as we have.


What was it like for you as a new parent? Are you going through those first few months now, or are you still battling through the sleep deprivation a year or two on? I can guarantee you, there is a light at the end of the tunnel. Although it took 7 years, I found it. Share your story below.


#sleepdeprivation #newparents #stepup4harlie #sdrchangeslives