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These Are the Days

by julie on May 25th, 2014

Since Meredith turned ten in December, it seems like a huge shift has taken place. Reaching this milestone birthday was a big deal around here but I don’t think we were prepared for the changes that occurred.

There seems to be an easy rhythm in all of our lives these days. The constant crisis mode that we were in for years has dissipated. We have had sleep every single night since January 3rd due in part to consistent night nursing which we have never had previously as well as a stability in Meredith’s health which we have also never had previously. There is a letting go that has taken place. It’s as though we are  shedding  that first ten years; working through any residual emotions, freeing ourselves of stubborn grief and openly talking about the numerous traumatic events we survived so that we can make space for the next decade.

I wrote in the past about Meredith’s muscle spasms and how they were relentless and mysterious only occurring at night and how we were desperate for answers. We were assured that they were not seizures as her repeated eeg’s were negative for seizure activity. We have had many, many experiences of helplessness over the years but this was the mother ship of helpless experiences. And, then it happened. My husband came across articles on nocturnal seizures and we opted to take a chance with seizure medication. And life changed. I mean really changed.

Since Meredith turned ten, her seizures have been managed by a relatively low dose of the medication that worked like a miracle. Within days, those nasty evil seizures were a thing of the past and soon she was sleeping for most of the night . We know they are still lurking in the depths of her brain but they are in a deep slumber for now. We are grateful every single day for this drug that has made Meredith’s life one of quality again.

There is a routine, a predictability to the day and night which we have never, ever had before. We cautiously welcomed the change knowing that the medication would likely stop working within a few weeks but we were just so happy for the reprieve that we chose to live in the moment. Unexpectedly, the medication is still working almost six months later and she is on a lower dose than the one prescribed. Miracles abound!

It feels like we are all growing up in some way. Meredith is changing from a little girl to a big girl and Tim and I are growing and evolving right along with her.  It also feels as though these are the best days of our lives. They are certainly the best days since 2003. We bravely welcome each day grateful for the positive strides we have made while being acutely aware, as always, that it can all change in a matter of seconds. I had a moment of hesitation in writing this post for fear of tempting fate. And just as quickly, I boldly hammered it out and decided to do it anyway.

It’s as though we have been lost at sea for a decade and then a piece of land appeared on the horizon. We have docked on this island for now and we know that we will eventually have to head out to sea at some point but for now, we are safe and sound here and we will frolic on this shore as long as possible.

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7 Comments
  1. Johanna Mathieu permalink

    So glad that things are working out well for you, Tim, and Meredith. You all deserve a break. Hope this improvement in Meredith continues.

  2. Joy Pantelis permalink

    I am so happy to read this. We must remember we know our children better than the doctor does. We too were told seizures were not seizures even though they mirrored the seizures she had been having for 10 years.

    But with the VNS implanted they have disappeared and her parents are too, experiencing a full night sleep.

    Again I am so happy to read this update!!!

    Hugs, A Grandmother

  3. Meredith permalink

    So wonderful to read Julie! I’m so happy that you’ve found a nice island to rest on!

  4. Anne permalink

    So happy for your family-this is a long overdue break. I pray is lasts a long, long time x

  5. Amazing. Nicholas turned out to have nocturnal seizures too. All the years we thought it was ‘startle’ or spasm or whatever. It was seizures. He has still anywhere between 3 and 7 every night, but he gets a med after 6. (prn on top of his regular seizure meds). I am so glad that you are out into the light of life for now – touch wood…. who knows what is in the future and I don’t want to tempt the fates! So happy for you 🙂

  6. donna keon permalink

    A beautiful welcomed post. such a smart family

  7. Lana permalink

    You guys totally deserve an Island Vacation! Okay- maybe it’s not a ‘vacation’ but an island it is! SO happy for you all to be in this good place right now.

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