re·live/rēˈliv/verb gerund or present participle: reliving

To live through (an experience or feeling, especially an unpleasant one) again in one’s imagination or memory.”he broke down sobbing as he relived the attack”

Internet Dictionary

When I started working on the Magnolia’s Hope documentary, the smartest thing I did was hire an editor, Scott Sheppard. He was a stranger at the time, had no connection to Rett Syndrome, and had never seen any of our YouTube videos. For those of you with kids with special needs, I’m sure you would understand – the idea of sifting through every single video and picture of our daughter from before she started showing symptoms of Rett Syndrome, from before we even knew what it was, was frightening, anxiety inducing and potentially damaging to our mental health. I already lived through her losing her hand use, her ability to speak, her ability to breathe without struggle. Watching old videos would have been like reliving each loss and it wasn’t something I was looking forward to.

As I sat down to work on the movie, I realized maybe reliving wasn’t going to be as bad as I thought. {Pause as I wait for your eyes to stop squinting in doubt}.

Admittedly, it was hard to make the documentary. It was hard to use our own lives to explain a rare disease. It was hard for me to watch it, to remember each snapshot for what the experience was and try to explain that to an audience who may or may not be familiar with rare diseases or, more specifically with Rett Syndrome.

Reliving her life from before her regression, from before her diagnosis, should have been the hardest part, but I got to see things in those videos I never saw when we first turned the camera on. I got to search for clues. Yes, the diagnosis took us by unbearable surprise. We were floored by it because everything seemed to us as first time parents like it was going to be ok. The diagnosis hit us so hard because the doctors, and therapists, weren’t terribly concerned, so we weren’t concerned. But, in hindsight, I can watch those videos again and recognize all the signs. Reliving those videos for me was more about solving the crime that I missed the first time than it was about re-experiencing the heartbreak. It was a cold case and I finally was staring at all of the evidence.

Watching Magnolia’s early years was just not as hard as I expected it to be. I wasn’t in tatters when I rewatched the video of her saying “Bye daddy” for the last time. I didn’t break down when I saw her seizing for the first time. It didn’t impact me emotionally to see her lose her balance and start her breathing struggles like it did when we were living through it. I hold my breath whenever she does – it’s second nature at this point, but it’s not tragic anymore. I mean it’s sad. It’s awful. I wish more than anything else my daughter didn’t have these struggles. But we’re, capital L, Living with them. Every day. Reliving those parts didn’t feel strange or sad to me – that’s just what it is for her. And for us. That’s not reliving at this point. That’s life.

Beyond being able to see the beginning stages of Rett Syndrome, I could also see the beginning stages of her efforts to communicate (as well as our often clumsy attempts to communicate with her). It took us a long time to really recognize her non verbal cues. Now, it’s second nature. Now, I can understand her in an instant. Watching old videos with everything I’ve learned reminded me that then, we were barely surviving. It also showed me how many different ways Maggie was reaching out to us and how many of her non verbal cues we missed. I’m just glad not to be in that place any more.

Reliving simply is not about looking back anymore, it’s about looking forward. Covid has afforded all of us the opportunity for introspection and retrospection. It’s given us the chance to make change where we saw it necessary, because there was finally the time to recognize what the changes had to be. For Maggie, reliving isn’t about past trauma, but rather, learning to live again. That’s true for all of us. With every disappointment, with every setback, there’s an afterwards, another side. It was true with her diagnosis. We couldn’t imagine coming out on the other side of that grief, but we did. When she started having seizures we didn’t know how we would be able to manage, but we have. And while we still grieve for dreams she may have had she may never achieve, we have learned to relive.

Trying to disassociate from our own lives in order to craft a story as a filmmaker was difficult. Explaining how it feels to get a Rett Syndrome diagnosis, explain what Rett Syndrome is and the enormity of living with it, that was hard. Reliving life with Magnolia, I’ll cherish every moment of it.

So, internet dictionary, I have an updated definition proposal for you.

re·live/rēˈliv/verb gerund or present participle: reliving

To live again.

Magnolia’s Hope

Through the month of December the documentary is available to rent at www.magnoliashopedoc.com.

On December 15th, at 9:30 PM PST we will be hosting a live q&a should you have any questions about the film or about our lives with Rett Syndrome.

One thought on “Reliving”

  1. I’m glad you could keep it together when reliving the earlier experiences The old guy had trouble in some places. If u ever decide to retitle the movie,I suggest “Don’t Google it”

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