Sometimes I go through long stretches of time not knowing what it is I want to say, or how to put it into words. Sometimes there is so much emotion running through me, that I’m not sure where to begin. Sometimes it’s writer’s block; sometimes it’s needing time to reflect on my own, in my own space; and sometimes it’s a bit of both. That’s where I’ve been over the past several months; awash with emotions, good and bad, trying to sift through it all.

We’ve had a big year. Ryder has made some incredible gains. Last August, under the care of our new paediatrician, we decided to try a new medication to treat Ryder’s anxiety. The choice to medicate your child is an extremely difficult one. There is a lot of noise from outside telling you not to. As we’ve always believed in the marriage of scientific and alternative medicine, we usually start by trying the least invasive approach to treating a symptom, whether medical or behavioural. We’ve spent countless hours practicing different techniques to help Ryder manage emotions and regulate behaviours. We’ve tried hundreds of things to help him just feel good. Finally, it dawned on me last summer that something was just not working for Ryder. Something inside him was holding him back. We could see him trying to relax and enjoy things, but he was never fully able to do that. Joy and laughter would turn to tears and screaming at the drop of a hat. He would want to join his friends in activities, but would then get so overwhelmed, he just couldn’t stand it. He would literally run away from an activity that we knew made him happy and excited. He just couldn’t be there. It was just too much. Anxiety is crippling and we realized that it was taking a great toll on Ryder.

When we started his new medication, we were hopeful, but cautious to get excited about the potential outcome. He’s such a complex child. We’ve gotten our hopes up before and been disappointed, so we began the treatment with few expectations. And then something happened. It started to work. Ryder became more comfortable in his own skin. He started to join in activities, even just for a minute or two. He began to enjoy his favourite things more. He stayed out of his room and spent time with the family, whether engaged with us, or just buzzing about the house. Things that were once so challenging for him became tolerable, sometimes even enjoyable. He had an amazing year at school. It was not without its challenges, of course, but the number of really difficult days Ryder had decreased dramatically. He started waking up happy, so happy, that we wished we could keep him home with us all morning just to spend time with him. He started letting us hold him and comfort him when he is sad.  And the most astounding thing happened: he started sleeping. After 10 years of sleepless nights, with multiple night wakings, and often great difficulty getting back to sleep, Ryder was going to bed at 8:00pm and waking up around 5:30am. He started sleeping in his bed, and though sometimes he still falls asleep on his floor, he stays in his bed all night long after we lift him in and cover him up. When we move him after he is asleep, he rarely wakes now; a far cry from the days when even the slightest disturbance would send him into a full on meltdown. It was amazing, so amazing in fact, that we refused to talk about it for the first 3 months, for fear that we might jinx it. Then I couldn’t talk about it without crying. It was so huge. We just couldn’t believe it. When we finally brought our observation to Ryder’s paediatrician, she explained to us that, while this particular medication was not for sleep, she had seen another case where the patient had also begun to sleep through the night after starting to take it. Not only had it improved Ryder’s quality of life during daily activities, he was finally getting the rest we all so desperately need to grow and thrive.

It wasn’t until Ryder started sleeping through the night last year, that I realized just how difficult the years of sleep deprivation had been on our family. It is one of the greatest challenges for families with children with special needs. I feel as though I went through years in a fog; just drifting, surviving. I look back now and I’m amazed at all the things that Ryder was able to accomplish on such little, broken sleep. I’m amazed at the things any of us accomplished during those years. I won’t lie, I’m still tired, but this brand of tired is much easier to work with. I might even go so far as to say that I think I am slowly regaining the sanity that I lost during the sleep deprivation years. It’s hard to say if Ryder’s sleep will always be this sound, but for now, we are cherishing every single night that it is.

If you are out there, struggling with sleepless nights and fighting the chronic physical and mental fatigue that it results in, my heart is with you, and my hope is too. I hope it won’t always be so hard. I understand why some days you just can’t, and why some days you are short with those around you. You’re a hero, day and night, championing for your child. I hope you nap when you can, and have an unlimited supply of coffee and love when you can’t.